tag:blogger.com,1999:blog-22898119929887026572024-03-12T15:03:09.208-07:00The Face of Early Onset Alzheimer's DiseaseKathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.comBlogger109125tag:blogger.com,1999:blog-2289811992988702657.post-83168255183870840472016-01-10T20:45:00.001-08:002016-01-10T20:45:59.280-08:00<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">My last post on this blog was March 11th of 2015 - two months before Billy died. In that post I wrote about the movie, Still Alice, and I knew at that time that Billy was slipping away from us rapidly. Even more imminent was my mom's death as she grew weaker, and her pain grew greater. When I look back at that time period, some of my memories are vague, and a good bit of that time I do not remember. I felt like I was on death watch daily. We had gone through this with my dad in late September of the year before and in June of that year, we witnessed my Aunt Pat (mom's sister) die from the same cancer Mom suffered. Mom slipped away from us on April 19th, a Sunday morning, and while I was so relieved that she was out of her pain and with our Savior, my heart ached badly. I loved having her live with me. Mom was so easy to care for because she was so appreciative of everything done for her, and I miss our talks and laughter. We looked forward to watching Downton Abbey, Shark Tank, and just about anything on HGTV. I am beyond blessed to have had Mom live with me for that time. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Mom died on Sunday, and we had her funeral on Thursday. I returned to work the following Monday and received a phone call from the hospice nurse who cared for Billy. She felt like Billy only had a few more weeks to be ravaged by Alzheimer's Disease. A few days later I asked his daytime nurse what she thought of the hospice nurse's estimate, and she felt like Billy had a few months left. I had such mixed feelings about either estimate. I hated that Billy hurt but couldn't tell us where the pain was, that he couldn't tell us he loved us or that he was thirsty or needed to pee or anything else because his brain was eaten up by this devious disease. But the thought of him not being where I could talk to him and touch him pretty much made me weak and sick feeling. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I got the call on Friday morning, May 8th. Billy was not responding or opening his eyes. I left school immediately and spent the next 48 or so hours beside Billy. The nursing home gave us a private room to spend our last days with him, and I am grateful for that. Shelley and Andrew came, Billy's sisters, Cindy and Kathy came, my sister and brother in law, Leslie and Shawn came. We all had the opportunity to tell Billy how we felt about him, how much we loved him, and I told him again that he could go in peace. We would be okay. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I will always be grateful that I was able to lie beside Billy the last two nights of his life listening to his labored breathing and caressing his arm and crying...a lot. For all the times I sucked it up and fought back my tears, I let them go. It seemed okay, and Billy never moved. It was as though his body was unaware of my presence, but I know our spirits connected. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Today is January 10th, and I've been a widow (such a strange word) for eight months. Much has happened in that time span, and my life is so different. I no longer leave the school parking lot and head in the direction of the nursing home, so I can feed Billy his dinner. I had friends at the nursing home - many of the staff members and some of the residents. I have not returned, but I plan to go back at some point. I bought a house (and I have awesome new neighbors), moved in just in time to go back to work, went to Las Vegas with Shelley, went on a cruise with my sister, and went to Branson with Karen and Martha (and we all went zip-lining!). Shelley and I participated in the Grief Share program at Gateway Church, and it was helpful for both of us. My grief process began years ago with Billy, so I felt like my experience was quite different from those who had lost their spouses suddenly or in a much shorter amount of time. Alzheimer's, like cancer and other horrific diseases, consumes the family of the victim, and it consumes them for years. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">A new part of my life has begun. I am no longer a caregiver. I am no longer married. After almost 34 years, that is an odd feeling. I am moving on, however, and I'm okay. I really am doing well. I have moments that I miss Billy more than usual, and I still have tears at times. But, God never abandons me. He is the reason I can move on - knowing that Billy is whole again and no longer suffering. He started his eternity ahead of me. I'm not certain what lies ahead, but God is in control of that for me. Thankfully. Shelley feels it would be okay for me to date someday when I'm in my 70s...she's kind of funny like her daddy was! I don't know that I will have another relationship with a man or not. It is not my central theme, but I'm open to the idea in the future. I love my family and friends, and I am quite happy with the life I have now. I'm undecided on keeping this blog. I enjoy writing, and I've waited too long to write this time. This blog originally started because I wanted to spread the word about Early Onset AD, and I wanted to keep friends and family updated on his condition. He's doing beautifully now. </span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com11tag:blogger.com,1999:blog-2289811992988702657.post-59524075129270018972015-03-11T20:01:00.000-07:002015-03-11T20:01:09.042-07:00I'm Getting There<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">When the movie, <u>Still Alice</u>, was released recently I wasn't sure I could watch it. In the last few weeks, however, I found I really wanted to see how this story was portrayed on the big screen. I was thrilled that Julianne Moore won an Oscar playing this role because we need more awareness of Early Onset AD. The plot really hits home when a 50 year old college professor develops Early Onset Alzheimer's Disease. The events of the movie certainly bore some similarities to Billy's experiences - getting lost in a place you've lived and worked for decades, asking the same question over and over again without realizing he had asked it two minutes before, losing nouns when making sentences, ordering whatever I ordered in a restaurant because he no longer remembered what he liked...the list goes on. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">In the movie, the Howards are an affluent family - Alice and her husband, John, are recognized college professors at Columbia University. They have three adult children - one in law school, one in med school, and the youngest is a struggling actress. While EOAD is no respecter of class, most of the people I have met who are dealing with this disease are middle class folks who worry a great deal about the financial consequences of this disease. We were a two income family, and losing one of those incomes was major for us. Alice and John don't seem to miss a beat in paying for their children's educations and maintaining their second home on the Cape. I know the movie didn't have the time to show the entire scope of the disease, but I wonder if it leaves people feeling that a person is diagnosed and ends up being mostly forgetful and confused and sad. The movie is well-written, well-acted, and well-meaning. It's a beginning, but there is so much more to the story. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I'm out of school for Spring Break this week which allows me to spend more time with Billy. I've gone to see him at various times which is nice, too. I was pretty low after seeing him Monday and Tuesday because he was so flat and sleepy. He hardly opened his eyes either day, but today was better. He was wide eyed and focused on me a few times. He smiled at me, and that helps so much. We had Billy's three month care plan meeting today, and it offered another dose of reality for me. In the last month Billy has lost 6 more pounds - 8 pounds lost the month before. At 6'1" he weighs 154 pounds with a BMI of 20.3. If the BMI drops to 18.5 he is considered underweight, and the hospice nurse wanted to let me know that we could do a feeding tube. I have strong feelings against a feeding tube or an IV for a loved one dying. The natural process of dying involves loss of appetite and thirst. I recently watched a video by a hospice nurse who describes the labor of dying. It confirmed what I had read and heard before, and it helped me understand the process better. Thank you, Kathy Lowrey for sending me the link.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">In these many years of EOAD, I've held on to Billy as tight as possible. Alzheimer's Disease is fatal 100% of the time. Some progress slowly - some quickly, and some have major changes followed by plateaus. That is how I would describe Billy's journey. At this time, it is clear to me that the end is coming much faster than I am ready, but I'm getting there. It hurts deeply to see Billy so weak and frail, eyes searching for something, hands reaching for something, his body rigid and tremors taking over at times. Then he sees me, makes a connection and smiles. That tells me he's not ready to go just yet, or Jesus isn't ready for him, but when the hand reaches down and takes him home, my heart will rejoice that this is over for him. Don't mistake that joy for lack of grief or sadness. I miss Billy every single day, and when I can no longer kiss his head or hold his hand, a part of me will die, too. But to know that he is free and whole - that's worth my dying a little. </span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com8tag:blogger.com,1999:blog-2289811992988702657.post-28231694467342233172015-02-15T20:55:00.000-08:002015-02-15T20:55:00.535-08:00Thirteen years and counting...<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Someone asked me recently how long Billy has had Alzheimer's Disease. It's always hard to answer that because gaining that diagnosis seems to be a process. I first noticed that something was wrong in 2001 after Shelley had graduated from high school. Billy was 45. We were having major issues with our son, Andrew, and we had many discussions about those issues. We would spend hours arriving at a decision on the consequences we would put in place for Andrew, and the next day when I would mention that decision to Billy he seemed very surprised and sometimes was angry that I had not consulted him first. Billy was diagnosed with adult ADHD and given meds for that. He probably did have ADHD, but the meds did not improve his memory. After that the doctors decided he was depressed, and he probably was. He knew something was wrong but no one could tell him what it was. From there his diagnosis became Mild Cognitive Impairment (MCI), and I assure you that it never seemed mild to me. When he was 51, he was diagnosed with Alzheimer's Disease. It was not like a blood test finally showed that he had it, or he finally had all the criteria on a list. I remember sitting in the neurologist's office and talking to him about Billy's struggles at work. I looked at him and said, "What do you think is going on with him?" He responded that he felt that Billy had Alzheimer's Disease. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Here we are thirteen years later, and we have no doubt about that diagnosis of Early (Young) Onset Alzheimer's Disease. For many years Billy looked like any of his peers, and in social situations he seemed completely normal. But as his brain became more and more ravaged with the plaques and tangles, he could no longer function normally, and now the physical repercussions of the disease are astounding. When Billy was diagnosed he weighed about 250 pounds - a bit too heavy for his 6'1" frame. On February 4th of this year, he weighed 160 pounds - way too little for his ravaged frame. Billy's fingers were alway chubby, and his wedding ring was size 12. Now I see his fingers and hardly recognize them as his because they are so thin. His body is rigid and one leg crosses the other at the ankles. Many days he has tremors that are uncontrollable, but some days he doesn't. He raises his arms and hands as though he is batting something away. When he recognizes me and smiles, he reaches toward me to touch my face. I try to lean closer, so he can touch me, but I have to move with caution because he has little control over his movements and may hit me in the chin. His day nurse tells me to bob and weave! Billy has been eating pretty well for the most part, but the last few times I've fed him, he lost interest before finishing. I don't think he can see what he is eating which is a blessing because certain foods look really nasty when they are pureed. </span><span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> He never liked spinach, and I see no need to try to make him eat it now. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I struggle to find the positive in Billy's condition right now. This disease is evil and takes a person little by little until a rigid shell is left. I am thankful that his smile is still there when he recognizes us. His love is conveyed through his eyes when he smiles, and when I feel really sad about the whole mess, it gets me through. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">On the homefront, Mom is doing remarkably well for a person who was very near death on more than one occasion in the last several months. What a blessing it's been for her to feel well enough to get out of bed each day. She even went with me to Sonic yesterday for her beloved limeade. She was wiped out when we got home, but she got out of the house for a bit at least. I am thankful for every day I have with her and every week I get to watch Downton Abbey with her. It's the little things that feel like huge blessings from God.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">A friend recently reminded me of this beautiful promise from God. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">"<i>Behold, I am making all things new." </i>Revelation 21:5</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com11tag:blogger.com,1999:blog-2289811992988702657.post-35718284360087273752015-01-04T18:51:00.001-08:002015-01-04T19:47:34.720-08:00Well, Hello 2015...Give me whatcha got! <span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I have no desire to review the events of 2014 although many were good. Instead I will share the stuff of the last two weeks. One of the perks of laboring in public education is the holiday schedule, and Christmas holiday is nearly always two weeks. We hang on by our fingernails during the three weeks between Thanksgiving break and the beloved hiatus of December. By the time it arrives, I have a mental list of books I want to read, tv shows I want to catch up on, recipes I want to try and the daily naps I plan to take. Christmas holidays of 2014 were different. I still had the lists of books and shows, etc., but I also knew this would be our first Christmas without Dad and our last Christmas with Mom. It is the second Christmas we have not brought Billy home for our family celebration. During these two weeks, I have not read a book (not even one!), I have caught up on one show, and I've tried no new recipes. However, I have spent a great deal of time with my mom. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I listed all the highlights and lowlights of several months in a previous post, so I won't belabor those. We had a nice Thanksgiving and Christmas. Both were rather low key, but we all felt good about them afterwards. I spent a great deal of time with Mom, and I am so grateful for that. We have a good relationship, and God has granted me a calmness that allows us to discuss her upcoming death, what she wants and absolutely does not want in the way of a funeral, and so many other things that I never dreamed we would have an opportunity to discuss. The first week of these two I was able to take Mom to radiation treatments meant to shrink her tumor and lessen her pain. The trips to Texas Oncology were near torture for Mom because of her pain. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Early Friday morning after Christmas, I heard Mom calling me. I found her face down on the bathroom tile where she had fallen. I had checked on her a few hours earlier, and she was okay. I couldn't get her up and called my brother in law to come help me. We were not successful, so I called 911 - again. She was admitted with a broken nose, severe dehydration and low blood count. They pumped her with fluid and gave her some blood over the course of two days. During that time, Mom decided she would not have any more radiation, and she wanted to go home with hospice. That has been the theme of this week. I was delighted to have Billy and Kathy Futrell here for one night last weekend. I am so grateful for their friendship and support. Billy and my brother in law helped move my bed, and we have the master bedroom set up with a hospital bed and all the equipment Mom needs. We've met with the nurse, had two visits from the aide who will help Mom three times weekly, heard from the social worker, and met with the chaplain. We've also arranged to have an aide come daily (not part of hospice), so that I can return to work for now. God has provided what we need, and I am so grateful for having the time to handle all the details. Mom misses Dad so much, and she is ready to be with him again and really ready to be with Jesus. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">While I cherish the time with my mom, I feel like I've missed out on some time with Billy. It's hard to catch him awake, so meal time is usually best. I know I'll find ways to see him - it will just take some time. He seems to be stable as I've not seen any big declines recently. I'm grateful for that. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I look forward to all that 2015 holds and all that God does in our lives. Happy New Year to all! </span><br />
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<span style="background-color: white; font-family: opendyslexic; font-size: 16px; line-height: 24px;">Ephesians </span><span data-term="goog_2102485597" style="font-family: opendyslexic; font-size: 16px; line-height: 24px;">5:20</span><span style="background-color: white; font-family: opendyslexic; font-size: 16px; line-height: 24px;"> “giving thanks always and for everything to God the Father in the name of our Lord Jesus Christ.”</span><span style="font-family: opendyslexic; font-size: 16px; line-height: 24px;"><br /></span></div>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">This week represents a time of Thanksgiving in our nation, and it gives focus to Americans on being thankful for our blessings. As a child of God I am thankful every day, but I often spend more time complaining than I do thanking God for His grace and mercy. I have to admit that some days I struggle to find the blessings - not because they aren't there but because I get wrapped up in the bad stuff. I'm working to change my perspective. </span><div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am beyond grateful for the opportunity to follow Jesus without fear for my life or true persecution. </span></div>
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: large;">I am thankful to have spent over 33 years married to the man I fell in love with at age 18. Our marriage is good - not perfect, but we have enjoyed many more happy times than not so happy.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I appreciate the simple upbringing I had in a home with parents who taught me wrong from right, made me behave, gave me what I needed but not everything I wanted, held me to high expectations but allowed me to fail, and loved each other and their children unconditionally. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am grateful for my mom who had the courage to leave an abusive marriage when I was 8 months old and lived with various relatives, eeking out a living to make sure I was fed and kept safe. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am eternally grateful that my dad (the man who raised me) loved my mom and me enough to accept us as a whole package when he married my mom 55 years ago. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am thankful for the children God blessed us with. He gave us a strong-willed spirited girl who is a beautiful woman of Christ today. She is a wonderful wife, an excellent teacher, and a huge blessing to her family. He gave us a baby boy who was blessed to be taken straight to Heaven and is waiting for us there. He gave us a second son who gave us great joy, kept us laughing and broke our hearts when he could not deal with his illness of addiction. I am thankful he now lives with Jesus and waits for us. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am humbled and grateful that God allows me to care for Billy with the help of family and friends. I hope to someday thank God for a cure for Alzheimer's Disease. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">What a blessing it is to have my mom live with me now. At a time when she needs me to care for her, I can do that just as she did for me. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am blessed and grateful. </span></div>
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Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com5tag:blogger.com,1999:blog-2289811992988702657.post-60321322035830891242014-11-16T20:34:00.001-08:002014-11-16T20:34:55.312-08:00Sixty Nine Days<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">My last blog post was 69 days ago on September 8th. We had recently placed Billy on hospice care, and my dad was still living. These are some of the events of the last 69 days:</span><br />
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<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On September 14th, Billy's nurse called to tell me he had fallen out of his chair onto the floor of the dining room and an ambulance was being called. He received nine stitches along his brown line. Henceforth, when no one is watching Billy, they are to recline his chair so he won't lean forward and fall out.</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On September 18th, we visited my dad at his care facility and realized he could no longer hold up his head and was not making eye contact. He ate very little. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On September 22nd when we saw Dad he never opened his eyes and would not eat. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On September 24th, Dad had his 78th birthday. The staff propped him up and tried to feed him. We sang happy birthday to him, and he never responded. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On September 28th, Dad went home to eternity at 1:30am. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">We celebrated Dad's life on October 1st and laid his body to rest. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">During most of September, Mom worked on getting in with a gastroenterologist following her last hospital stay. I am amazed at the practices of the group of gastro docs in the mid-cities area of DFW. Because my mom saw a gastro doctor in Dallas three years before, none of them in that area would see my mom. My doctor in Grapevine agreed to see her and do the scope she needed. During the three week delay, her pain increased almost daily. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">After Dad's funeral on October 1st, Mom had a colonoscopy on October 7th. I think we knew what we would hear, but we hoped differently. Mom's cancer has moved into her colon and created a blockage. That doctor told her she needed to see the oncologist right away. Apparently right away in doctor language is 8 days later. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On October 15th, the oncologist told Mom she would need to have a colostomy. Mom told him NO. He offered other possibilities. They did not work. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On October 21st, we returned to the oncologist. Mom was worse. She had a transfusion on October 22nd and was scheduled to see the colon surgeon on October 29th. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On October 25th, Team BK walked in the annual Walk to End ALZ! We raised over $2,700 to benefit Alzheimer's research. THANK YOU, Team BK! </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On October 29th, we took Mom to see the surgeon who scheduled her surgery for October 31st. The surgery was considered palliative. </span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On October 31st, Mom had successful surgery. The surgeon was able to see the cancer but did not attempt to remove any of it. He did reroute Mom's colon, and she is now learning a new way of life. She hates it, but she has maintained a sense of humor. </span></li>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Those are the biggies of those sixty-nine days. Along the way, I saw Billy several days a week, and I think he's pretty stable at the moment. His smile keeps us going, and we are so grateful that he shows recognition by reaching out to us and smiling. His college buddy, Don Garrett, came by to see him last week, and he seemed to recognize Don. Every day with an alert Billy is a blessing. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">With everything going on in our lives, it seems that grieving my dad's loss has been somewhat delayed by Mom, my sister and me. Mom looks forward to seeing Dad and so many loved ones in Heaven soon. I understand that, but we are not ready for her to leave so soon. So many of you have prayed for us, and we know that. Thank you. I continue to stand on God's promises. </span></div>
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<strong style="background-color: #e8ffff; color: #191a42; font-family: opendyslexic; line-height: 24px;">Revelation 21:4 </strong><br style="background-color: #e8ffff; color: #191a42; font-family: opendyslexic; line-height: 24px;" /><span style="background-color: #e8ffff; color: #191a42; font-family: opendyslexic; line-height: 24px;">He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."</span></div>
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Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com5tag:blogger.com,1999:blog-2289811992988702657.post-18523849534519366762014-09-06T21:04:00.001-07:002014-09-06T21:04:12.329-07:00I Need Thee Every Hour - words so meaningful to me<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Sometimes you see a train in the distance, and you know it's coming your way because you see the light getting closer. The speed of the train is unknown until it gets much nearer. I've known for sometime that changes were coming, but I didn't know how quickly they might happen. The timeline is fuzzy in my mind, but I can assure you that Billy's decline in the last six months has happened in double time, and I have shed as many tears in those months as I did when we first placed him in the nursing home. When I attended his last Care Meeting in July, the nurse who attends those meetings said that in her 20+ years working in nursing homes, she does not recall a resident declining so much in two and a half years. When he first moved into the nursing home, the administrator said she felt he needed a tag that read: I am a resident not an employee. When anyone entered the memory unit, Billy would extend his hand and introduce himself as BJ Knowles. They thought he worked there.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">At the present time, Billy does not stand alone or walk. The staff uses a mechanical lift to get him out of bed. He cannot sit up straight on his own. He fell out of his wheelchair several times, and they put him in a geriatric chair. He leans badly, and he leaned so badly in the geri chair, he had to be straightened often and propped with pillows. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUTHXMrKw5G7XSpZHFKvr-Ek-MsB8iLc9PCqFv-yPf_K02pzwlWpjugPT92qkZuCSh-Z4Qm4teA3xU7pAS-Y_T-cTAH3cfD7uNifUrJivFJtV1U135LxW0cVjwcQXfXa5IvSJ_butdk2WT/s1600/photo+(1).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUTHXMrKw5G7XSpZHFKvr-Ek-MsB8iLc9PCqFv-yPf_K02pzwlWpjugPT92qkZuCSh-Z4Qm4teA3xU7pAS-Y_T-cTAH3cfD7uNifUrJivFJtV1U135LxW0cVjwcQXfXa5IvSJ_butdk2WT/s1600/photo+(1).JPG" height="320" width="240" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He now has a fancy new chair, and it seems perfect for keeping him upright. He seems more interactive and smiles more, too. I'm convinced that he feels much better because he can sit upright in a chair that fits him. He was able to get a new chair because he is now on hospice care, and they could foot the bill. Medicaid nor Aetna would purchase the chair, and the nursing home was looking into buying one, but the wheels turn slowly on large purchases. We are most grateful for the chair. (The photos below were taken moments apart. He would not open his eyes for most of the meal...no idea why.)</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Hospice is one of those trains I saw coming, but I thought it was further away. Sadly, the time has come. The physician's assistant who cares for Billy and sees him every Monday, feels the time has come for end of life care. Only God knows the time that He will welcome Billy home, and until that time hospice will do all they can to make him comfortable. The chair is certainly a big step toward his comfort. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We are blessed that Billy knows us, and he communicates with his smile. He talks some, but his words are usually unintelligible. Once in a while, he says something that makes complete sense, and I love that. His smile is beautiful, and everyone around him loves to see it. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Alzheimer's is cruel, but you already knew that. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Another train has been barreling through with my mom's cancer. Since June, we've had to call 911 five times...one of those in Galveston. All but one of those trips has led to Mom being admitted into the hospital, and her issues have all been related to complications from cancer and chemo. At her last chemo treatment (nine days ago), the nurse accessing her port missed it, and something was punctured. Seven hours later, she was still bleeding from that wound and a trip the ER got it under control - finally. That represents our LAST visit to the North Hills ER because of the unprofessional behavior of the medical staff. Fortunately she was not admitted. She made it less than a week before another serious bleeding incident. She woke me on Labor Day morning very ill and had been experiencing a GI bleed for several hours. The paramedics know us well, and as they were loading her up, one asked what had happened with the bleed the week before. We asked them to take her to the new Texas Health hospital at Alliance, and after they evaluated her, they sent her to HEB Harris because most of her doctors practice there. After a few hours there, she was quickly moved to ICU because of uncontrolled bleeding. After four units of blood, two units of platelets, and 5 days in the the oncology unit, Mom was discharged yesterday. She is very happy to be home. She has to be stronger to withstand the preparation for a colonoscopy, and she is not even close at this point. There is an urgency to find the source of the bleeding, so we are praying for her blood counts to stabilize and for her to gain strength. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">At this moment, Dad is doing about the same. He has days when he is more alert than others. I went to see him at lunch on Tuesday, and he was at a dining room table pushing Tonka trucks around. That made me sad. I usually end of laughing at some point when I visit him, though. Patients with dementia do strange things, and you can either laugh about those things, or you can cry. Crying gives me a bad headache, so I try to choose laughter. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Dad and Billy are on hospice. Mom is not on hospice, but she's feeling like her days of chemo treatment are over. Ending up in the hospital after each treatment is not her idea of a high quality of life. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The prayers of our friends and family are felt, and we are so grateful for all of them. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com5tag:blogger.com,1999:blog-2289811992988702657.post-33529165949778889412014-08-03T13:23:00.000-07:002014-08-03T13:23:07.730-07:00Back to Reality<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I just returned home from a fabulous Florida vacation! My dear friend, Karen Fletcher, invited me months ago to join her and her family on this trip. When she asked me I told her I planned to go, and the only thing that might alter my decision would be a job change for me. I know that God knew how much I needed to get away for a bit, and nothing stood in the way of my going. I rested, read, ate wonderful seafood, soaked up too much sun, listened to the waves, parasailed and loved every single moment. I stayed in touch with home through phone calls and texts, and all was well until Thursday. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">The nursing home called me about Billy that afternoon, and he's struggling with chewing and swallowing meats. He's been evaluated by the nursing staff, the OT and speech pathologist, and they recommend a mechanical diet where his meat is chopped very fine - not pureed but easier to chew and swallow. He's been slightly dehydrated for about three weeks because he isn't drinking well. He gets choked when drinking liquids (even thickened liquids), and then he won't take anymore fluids. Part of the issue is his posture which has changed drastically this summer. He cannot sit in a wheelchair anymore because he leans and falls out. He is now in a geriatric (geri) chair which supports him better, but he throws his head back and leans pretty badly. They prop him with pillows, but he doesn't stay that way for long. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I went to feed him lunch today, and he was happy to see me when it finally registered who I was. I have to get close to him and get his attention, and he smiles at me when he realizes who I am. He eats pretty well, but getting him to drink is difficult. He usually falls asleep before he finishes a meal. I believe he sleeps a great deal during the day and all night. I was telling a friend about this today, and I shared with her that my head knows that all of this will happen, and I know the likely end of the story, but it hurts my heart to watch it. Having been away for a week was wonderful but made the decline so much more real for me when I returned. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I got another call late Thursday night that my mom was enroute to the hospital via ambulance. My good friend, Rhonda, lives with Mom and me - Mom has dubbed us the Golden Girls! Mom was able to get Rhonda's attention to let her know that she was struggling to breathe. Mom has pneumonia that is getting better with antibiotics, possible congestive heart failure, chronic kidney disease, and as we already knew - cancer. I love that she has maintained her sense of humor through this most recent ordeal. That has carried our family through many trying times. I notice that as people age, they feel a certain freedom to express their feelings. Mom has not hesitated to let the staff know what she does not like, and she can usually make them laugh while doing that. She hates the breathing treatments, and she thinks the respiratory therapists should go stand in the hall during her breathing treatments because their standing around gets on her nerves. They don't allow her to shower because she's too weak, so they bring her these special body wipes that are supposed to get you just as clean as a shower. She is not buying that either! They suggest that she use them in the morning, and she doesn't want to do that, so she told them she would use them around mid-afternoon. </span><span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> I believe she is improving and will hopefully be discharged Tuesday or Wednesday. She is questioning whether or not she will take any more chemo treatments, and I know we all support her choice - whatever it may be. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">My dad seems to be doing fairly well at the moment. Praises for that! Here is a sweet picture of my niece giving him a hug early today. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Tomorrow I return to work. I've had more time off this summer than I've had in about 15 years. I am ready to get back to my schedule and my routine. I love the folks I work with, and that makes it a pleasure to go each day. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I am thankful for our blessings. I am thankful that I get to feed Billy and see his smile. I am grateful my mom is still here to make us laugh. I love that my dad can still enjoy his granddaughter's hugs. Sometimes I get lost in the junk of life, but I know what is truly important, and I know that one day Billy will be himself again along with all of us in eternity. </span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com0tag:blogger.com,1999:blog-2289811992988702657.post-12869539574410556442014-07-20T22:42:00.000-07:002014-07-20T22:42:09.198-07:00So Much Has Happened Since Last I Wrote...<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">My last post was April 30th, and since that time the following events have occurred:</span><br />
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<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Billy was moved from the Memory Unit into a regular room in the nursing home in May.</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">He has had another grand mal seizure and many small ones, but the last few weeks seem to have been better. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Dear friends from Midland visited, and he recognized them and enjoyed their visit. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">He had a birthday! </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">He has made several short sentences that made sense, including "I love you."</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">My dad seems a bit better - more alert at times and more pleasant in nature. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">He is terribly thin but does eat.</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">My mom stopped breathing on June 8th. She had been experiencing extreme swelling in her legs and feet, wheezing when she was in bed, and she had asked her doctor about it. He told her to keep her feet up and that her lungs sounded clear. On the night this happened, I had gone to Summer Spectacular at our church with my sister and her family. When we got to the house, Mom was struggling to breathe and we could hear fluid rattling with each breath. We called an ambulance, and it arrived in 6 minutes - the longest 6 minutes of my life - and about a minute before they arrived, Mom lost consciousness. On the way to the hospital, she stopped breathing and was intubated. She was placed on a ventilator and admitted into ICU. When she was given Lasix she started turning around and got off the vent in three days. After a week in the hospital and numerous tests, we know that her kidneys are functioning at about 40-50%. She was so much better except for the extreme fatigue when she went home, but they gave her nothing to handle the fluids that were to come. Hmmmm. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">While Mom was in the hospital her younger sister was put on Hospice. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I went with Mom to her oncology visit after her recent scan which showed a slight growth in her two tumors and two lymph nodes they are watching. He told her there is one more chemo drug they can try to slow the growth of the cancer. There is no cure, and he asked if we had begun talking about end of life issues. Mom told him she wanted to take a break from treatment and make the decision after we took a short trip to the beach. He felt that was a great idea. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">My Aunt Patricia, my mom's sister, died on June 30th. She was diagnosed with the same cancer (ovarian) as Mom about a year and a half after Mom was. Her system was already weakened by Parkinson's Disease, and after being declared cancer-free for a few months, the cancer returned with a vengeance. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Last Sunday Mom, my sister and her family and I traveled to Galveston. We rented a condo on the beach outside of town and enjoyed a nice day on the beach on Monday. We got Mom to the beach (very slowly with many breaks!), and on Tuesday we went into town for great seafood. Mom didn't feel like going to the beach that afternoon, so she rested. She and I shared a room with twin beds, and around 12:30 after I had gone to bed, Mom woke me up in the same distress with her breathing as before - gasping, rattling, and panic. I got my sister and brother in law, she called 911, and I prayed over Mom. When the paramedics arrived, Mom was still conscious, and they put her on a CPAP machine to help her breathe. They allowed me to ride in the front of the ambulance, and I was much more at east than the time before. She was taken to UTMB, an excellent teaching hospital with lots of unusual people outside the ER at 1:30 in the morning! Once again, Lasix was started, she was taken for tests and xrays, and she was admitted to a regular room around 5:30 that morning. We were so pleased with the doctors who knew immediately what happened, and she improved so much that she was discharged that night at 7:00 with prescriptions in hand for Lasix. We came home on Thursday.</span></li>
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When we were kids my dad would tickle us or do something equally irritating until we yelled, "Calf rope!" or "Uncle!" The point was to see how much we could endure before giving up. I feel the need to yell out "Calf rope!" I've reached my limit. We get past one hurdle and another appears in front of us. I've talked more about death, dying, and funerals in the last few months than all the previous years in my life. My disdain for Alzheimer's Disease and cancer remains strong. My faith in Jesus' runs deep, and my knowledge that He is in control is firm. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I am scheduled to leave town on Saturday with a dear friend for a real beach in Florida! (No offense, Galvestonians!) I am praying that my family will remain without incident while I am having another go at a vacation! After no vacation for quite some time, I never imagined I would have two trips in one summer, but I've been blessed. I appreciate your prayers and support for our family. <br /></span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com1tag:blogger.com,1999:blog-2289811992988702657.post-75938458980659000242014-04-30T21:16:00.000-07:002014-04-30T21:16:35.180-07:00So Much Can Happen In Less Than A Month<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">For quite sometime I would post every few weeks or every month, and the progression of this insidious disease was fairly slow. Recently the progression seems to have increased rapidly like an avalanche that begins with a few falling rocks then picks up speed and crashes down. In my last post I wrote about not being able to take Billy with me anymore because he cannot get in and out of the car. Soon after that he had several falls, and his balance was unsteady. The decision was made that he needed to be in a wheelchair for his own safety. I'm all for his safety, but I hate that he has to sit all day because he loves to walk. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">He doesn't seem to know that he can move the wheelchair on his own. At the moment, they are using a chair that belongs to the nursing home, but I've noticed a need for foot rests that he doesn't have. Occasionally he will lift his feet ever so slightly making pushing easier, but he usually resists a bit. Pulling the chair backwards makes it easier if one can walk well going backwards. I have enough trouble walking forward, so that presents a challenge for me. We make it work, though. Billy gets help from the aides, and they all love him. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">As I was getting my head wrapped around the fact that Billy doesn't walk anymore, AD threw another rock at us. On April 14th, Billy had a grand mal seizure around 4:00 in the morning. Fortunately an aide was in his room changing his roommate and heard the noise. She got the the nurse right away, and the seizure lasted a little over 10 minutes. His oxygen level dropped significantly, but they were able to get him stabilized. I had heard of another Early Onset AD victim who had seizures, but I never knew of others. It doesn't seem that the staff at the nursing home has seen this with AD patients either. The PA saw him that day after the seizure, and she requested a neurologist consult. When I fed him dinner that night, he was exhausted and his lip drooped almost like a stroke victim. The strangest thing to me was that his voice sounded different - lower and gravelly. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Of course I began reading about AD and seizures. Today I went with him to a neurologist. I really liked the doctor, and he told me the same thing that I had read. Fewer than 10% of AD victims have seizures in the late stages of the disease, and there is some thought that it is more prevalent in Early Onset folks. Of course Billy is in that small percentage. Of all AD victims about 5% are early onset (under age 65). I wonder if 10% of that 5% have seizures or if that percentage is higher in this group. Billy has been on depakote (an anti-seizure drug) for almost 18 months because it helps with the behaviors related to AD. The doctor increased the dosage to try and prevent further seizures. I don't want him to be more "drugged" feeling and acting, but I certainly don't want him to have more seizures either. So there we have the Billy update. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Last Friday Mom, Leslie and I met with a chaplain and put Dad on Hospice. Dad is not a whole lot worse, but the staff felt that this would be better for him, and I agree. In one day, they got him a better wheelchair, and he has a few more people who visit him each week. That is so important in this journey -- human contact with people who are not suffering from dementia! Dad is so thin now; he weighs less than 140 pounds. He has some good days, and he has many not-so-good days. Mom hangs in there with him as much as possible, but she has her own battle with cancer. She is on maintenance chemo right now. She has a treatment each Tuesday (if her blood counts are high enough) for two weeks. She takes a break the third week. However sometimes during that third week, she has blood transfusions like she did today. That way she can be ready for more chemo next Tuesday - hopefully. After her next two rounds of chemo, she will have another scan to see how well the tumors are being held at bay. This is her life now. She's tired all the time, but she's here with us, and we all vote that it's worth it. But if the day comes when she says she's had enough, I think we will all understand that, too, but we are not ready. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">In spite of the daily struggles we face, we are blessed in so many ways. A dear friend has moved in with us, and she is preparing meals and helping in all sorts of ways. We had our extended family at our house for Easter, and that was wonderful. I work with fabulous people every day, and that is a huge blessing. We are prayed for each day by so many, and we know that because life is bearable right now. </span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com1tag:blogger.com,1999:blog-2289811992988702657.post-3647942709487539212014-04-03T20:16:00.002-07:002014-04-03T20:16:33.930-07:00The Big Decline Really Stinks<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><i>I began this post on March 18th, and then life got incredibly busy, and I got incredibly overwhelmed with everything. My heart is full, and I must write. </i></span><br />
<span style="font-size: x-small;">3-18-2014</span><br />
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">It's time for me to face the truth. Billy is getting worse, and he's not okay. I've ignored the truth for a while because it's just too hard to face, but sometimes truth slaps you in the face. I have been blessed for more than two years in being able to take him with me on Saturday evenings, and that ended about two months ago. My Pollyanna side keeps thinking that when it gets warmer and stays light for longer, I can take him with me again as though warmer temperatures and lighter skies will help him know how to get into the car again. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">For a while I would take him out of the memory unit and just walk the halls of the nursing home for a change of scenery. He doesn't want to leave that secure area now. The staff told me he gets upset when they come get him to weigh him each week. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I usually arrive at the NH between 4:30 and 5:00 to feed Billy supper. The routine for the residents is to gather them all into the dining area of the unit beginning around 4:15. It takes a while to get everyone changed and cleaned up for dinner. Billy is nearly always sitting at the table watching TV when I get there, but today was different. I got there around 4:35, and Billy was still fast asleep. The evening staff had come on duty at 2:00, and he was already asleep, so they didn't know how long he had been in bed. It takes two staff members to get him up and changed now because he struggles with balance. After getting him ready for dinner, the aides got on either side of him and walked/drug him to the dining area. The scenario reminded me of two parents trying to walk their toddler while his feet go in uncontrolled directions, but he's a 57 year old man. </span><br />
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<span style="font-size: x-small;">4-2-2014</span><br />
<span style="font-size: large;">The first few weeks of March, Billy had several falls hitting his head during most of them. Several x-rays were done with no fractures noted, but the radiologist recommended a CT scan. The physician's assistant who sees residents each Monday at the NH noticed a significant decline in Billy's mobility and balance. Many of the big changes in Billy have taken place gradually, but this was rather sudden. He's been doing the slow shuffle for at least a year now, but he could stand on his own and walk. From what I understand he is a little more able to balance in the mornings, but as the day wears on, he cannot get out of bed alone, and he cannot stand. Two people get him up and change him, and then they place him in a wheel chair. </span><br />
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<span style="font-size: large;">Last Friday when I got there, he was in the shower. Our favorite aide, Lameka, was showering him. She rarely works in the memory unit anymore, so she had not seen Billy in a few weeks. I waited on her to get him dressed, and she came out of the shower to get help standing him up. She looked at me and said, "I had no idea he couldn't get up or stand anymore!" I told her the change had been rather sudden to us. The good news is that he still seems happy. He smiles often and enjoys our visits. </span><br />
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<span style="font-size: large;">I've been debating the whole CT scan event. He has to be taken to a hospital to have it done, and I can no longer transport him, so the NH could take care of that. When the doctor reviewed the orders from the PA, he questioned Billy's ability to lie still during the test. I asked the purpose of the scan, and it seems that they are looking for a cause of this big decline. They've done the usual tests - no UTI and no imbalance due to meds. The scan would show any masses, any strokes, or anything more abnormal than the atrophy he has from the Alzheimer's Disease. The scan would also involve a large co-pay that would be difficult for me right now. I made the decision today that I will not consent to the test right now. If the test were to show something in addition to AD, what would I do? I have no desire to inflict pain or anxiety on Billy. Just the trip to the hospital would most likely cause him anxiety. If the scan were to show a mass, I would not choose any radical treatment for him. A stroke? What would be done for that? More meds most likely. </span><br />
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<span style="font-size: large;">I've wondered if the medical professionals at the NH are just unfamiliar with early onset AD. I usually assume that new behaviors are just an indication of the progression of the disease. I appreciate the concern and the desire to know, but how would that change things? As I write this I hear myself sounding a bit like I don't care, and of course I care a great deal. I know that when Billy was still articulate, he made it clear how much he hated enduring all the tests and questions; and he would be more anxious and nervous than ever being taken to the hospital and being told to be still for 30 minutes which he would not understand. </span><br />
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<span style="font-size: large;">Did I make the right decision? I feel okay about it, and I'm at peace. That may change tomorrow, and if it does, I am pretty certain we can have the scan done. </span><br />
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<span style="font-size: large;">So there you have it....I'm so sad that I can't pick him up on Saturday afternoons and take him with me. In order to take him into the courtyard, he has to be put into a wheelchair, and that involves catching 2 aides who can assist. I'm hopeful that he can come home for Easter day using a transport system, but I'm unsure of that at this point. We trudge on. </span><br />
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<span style="font-size: large;">Stinkin' Alzheimer's!</span><br />
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<span style="font-size: large;"><br /></span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com2tag:blogger.com,1999:blog-2289811992988702657.post-8539039950825089702014-02-16T21:22:00.001-08:002014-02-16T21:22:16.897-08:00What Keeps Us Going....and what gets us down<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><br /></span>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">The most asked question I receive is always appreciated and really difficult to answer. I'm happy that people ask about the most important person in my life, but I don't always know what to say. The truth is that he is about the same he has been for the past few months, but in comparison to the last year, he's declined considerably. When I think about the last two years, he's gone down drastically. At times, his condition can really get me down. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I've mentioned before how difficult it is to get Billy in the car, and about three weeks ago, he got so frustrated that I decided to stop taking him away from the nursing home for a while. I will reassess when we return to Daylight Savings Time and the weather is warmer. Those two things may not help, but he gets more confused when it's dark, and the cold hasn't helped any of us. I'm aware that I probably get more from taking him with me than he does, but I know he enjoys being with family and seeing friends. Unfortunately, if I don't take him out, he won't see most of those folks. Going to the nursing home is difficult for people, and I was one of those people for a long time. I do not criticize anyone for not going because it's not overly pleasant, and Billy communicates very little. He does love seeing family and friends, though, and we can tell that by his smile and expressions. Sometimes he will say something that we don't recognize, but he tries to communicate. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Yesterday, he had a fall. He's fallen a few times before when he was trying to sit down and missed the chair, but this time was different. He was walking down the hall, and leaned over to pick up a "Wet Floor" sign. He lost his balance and hit the back of his head on the hand rail that runs down the hall. As he tried to get up he fell again, and hit his head on the floor. He has no fractures, and I assumed he would not. Billy has youth on his side where falls are concerned, but the fact that he lost his footing while doing something very simple signals another decline. He may not fall again for months, or he may begin falling often. Alzheimer's progression is not always predictable, but what I notice among the residents is that when falls become the norm, the resident ends up in a wheel chair. I am not ready for him to move to a more restricted mobility. Of course, I'm sure that my lack of readiness will keep it at bay! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Billy can do very little for himself at this point, and walking, albeit very slow, is one of his few independent activities. He needs help getting up, sitting down, eating, drinking, dressing, bathing, and toileting. The medical world calls these daily living activities. He is slim on independence with those activities. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">So those things really get me down, but we have some wonderful glimpses of the old Billy that get us through and keep us going. One of the last times I took Billy to church with me, he was sitting between Shelley and me. He tires pretty easily, and we stand for quite a while at the beginning of our worship service. Shelley sat down with him, and when I glanced back at them, he was leaning toward Shelley like he wanted to tell her something. As she leaned toward him, he kissed her on her cheek. He will always love his girl, and such a small sweet gesture brought tears to her eyes. A week or so later, Shelley was helping get him in the car (the big challenge), and after she buckled him in, she kissed him and told him she loved him. He responded loud and clear with, "I love you." He doesn't say much at all anymore, and that was huge. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">When I go see him in the evenings, and he realizes I am there, he gives me a huge smile. Once in a while, he even says some little something, and I'm thrilled. Sometimes I get there early enough that he is still in bed. I don't know if I will ever get accustomed to him being in bed so much of the afternoon, but when I go in his room, he is often already awake, but they have not gotten him up. I sit down beside him, and he grabs my hand. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">The small things get us through. The smiles, the incoherent mutterings, the gentle kisses, and the touch. I will never take those for granted. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">So, how do I answer the question...how is Billy? The best I can tell is that Billy is happy. Not knowing how far his disease has progressed is a good thing for Billy. When he knew where he was headed, he was frustrated and angry. He gets frustrated at times now, but typically, he's happy. His smile gets me through, and I often tell people he's okay...not good, but he's okay. I think that most people get it. </span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com0tag:blogger.com,1999:blog-2289811992988702657.post-36986993254034986172013-12-30T20:44:00.000-08:002013-12-30T20:44:23.158-08:00The Search for a Place<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">It's hard to believe that Billy has lived in Lexington Place for almost two years...January 24th will mark that anniversary. I will never forget how much my heart hurt when I left him there, and he was so upset with me. I would still prefer to have him with me, but I know he is in good hands, and the care he gets is what he needs. He is so comfortable there, I have to sort of drag him out of the unit when I take him somewhere. Once a month, someone takes him to another area of the nursing home to be weighed, and the staff tells me that he is very resistant to leaving the unit. </span><div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">In the last two years, Alzheimer's has taken so much from </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Billy. The man who was NEVER at a loss for words hardly ever speaks. He will answer Yes/No questions fairly clearly, but we often have to ask him something multiple times. It takes a while for him to process. When I arrive to visit, I have to get in his direct line of vision, so he knows I'm there. He still recognizes me and knows I am his wife...I know he does, but he never calls me by name. Some days he is happier than others and smiles readily, but not always. Today he would hardly make eye-contact and was scowling about something. He finally gave me a slight smile after I had been there for an hour. He eats well, but he has to be fed. He walks with assistance or holding onto rails. Getting out of chairs is difficult, but getting him to sit in a chair is harder. He has trouble understanding where his body is, and he's had a few falls when trying to sit down. I was visiting with a few of the aides the other day, and one of them is fairly new. The aide who has been there almost as long as Billy was telling us that when she met Billy she thought he was a visitor because he seemed so "normal." The decline in the last two years leaves no question about whether he is a resident or visitor. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">My dad is experiencing rapid decline also. Mom and I spent the day looking for a secure memory facility in our area of the metroplex for Dad. He is in a truly wonderful facility, but the cost is prohibitive, even with Dad's long term care insurance (thank God for that!), and Mom is not comfortable driving that far to see him. My sister and I take Mom to see him when we can. Three of the places with secure units in this area are full, and that includes Lexington Place which was our first choice. We did find a place that may work because they keep the doors locked and alarmed. Patients who are an "elopement" risk (just love that term) wear an additional alarm on their ankles or on their wheel chairs. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Dad is unable to walk after his two falls in early November. His dementia is much worse, and when he talks, he uses real words, but they make no sense. He eats well, and with some medication changes, we are told he is much calmer. He has a bad day now and then, but on most days he allows the staff to assist him. He hasn't worn shoes in a few weeks because he has cellulitis in his feet, so the therapy he is getting is not helping him walk. Our hope has been that he can be mobile again, but we are questioning that. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">On the homefront, Mom is settling into living with us, and we love having her here. I know it's such a big change for her - going from her own large home of 30+ years to a two bedroom apartment and now living with us and our three canine family members. I'm thankful she likes dogs and tolerates ours so well - Annie likes to sleep in Mom's room sometimes. I love having Mom here, and I believe we will live together for a long time. We get along very well thankfully, and she's pretty easy going. I'm grateful that she can be with us while going through cancer treatment. We think she has only one more chemo treatment! </span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">So much has happened in 2013, and who knows what might come in 2014! My prayer is that good things happen - slowed progression of Billy's and Dad's diseases and complete healing of Mom's cancer. Whatever comes, we can handle it because God has it covered. We are prayed for often, and we know that - it's evident. Happy New Year and God Bless you all. </span></div>
Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com0tag:blogger.com,1999:blog-2289811992988702657.post-8171946488983193472013-12-18T17:43:00.000-08:002013-12-18T17:43:09.395-08:00The Okay, the Ugly, and the Ironic<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">"Alzheimer's Disease is a progressive disease that worsens over time." Thus says the Alzheimer's Association's website. Nothing prepares you for the reality of what it looks like over the years. I am often asked how Billy is doing, and I typically say he's okay. Then I qualify my statement by saying that when I say he's okay, I mean he's not worse. I lie...maybe for myself, maybe for the person asking, but I lie. He is anything but okay. </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">This past Saturday after a few weeks of bad weather and other Saturday night plans, I looked forward to picking up Billy for the evening. Our Saturday evenings for the past couple of years include worship service at 5:00 followed by dinner out, and then back to the nursing home. They are usually uneventful, and Billy talks little and smiles often. He enjoys being with family. His smile and calmness tell me he's enjoying himself. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I got to the nursing home about 15 minutes later than usual this time, so I was feeling rushed. Billy doesn't do "rushed." In fact, he slows down the more I try to speed up. He was actually standing up and moving around when I got there. I grabbed his jacket and eventually got that on him, and we began the long walk to the door. Billy's gait is now tiny baby steps as though he is unsure of himself. We got to the secure door out of the unit, and he stopped. He rarely goes out of that door, and I had to <strike>coax</strike> pull him out. As we approached the exit, Billy saw a chair and started to sit down. Again, I redirected him to come with me. Each of the exits at the nursing home have these large fans that blow mightily overhead when you open the door. After a few years, I'm still not certain of their purpose (either to keep out bugs or push the door closed), but I do know that they startle Billy when they hit him. The temperature was cool, and with the wind, it was cold. Billy always notices the difference and shutters if it's extreme. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I started to the car, and Billy's nurse, Sabash, was coming back from his break, so he came over to help me get Billy in the car. Because of </span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: large;">Billy opening the car door while I've been driving a few times recently, I put him in the back seat where I can use the child lock. It's always a challenge to get him in the car because he does not remember how. He tends to face the car seat and touch it with his hands, sort of leaning forward. We kept trying to get him to stand with his side to the seat, placing his left leg in the car and sliding in. This is where he gets stuck. He won't budge, and it is nearly impossible to move his leg for him. I decided to go to the other side while Sabash worked with getting him in the car. I reached across the seat and tried to get him into the car. After about 10 minutes of this, I looked up, and Billy had a tear rolling down his face. He was shaking and said, "It's cold." At that point, I could feel my tears welling up, and I wondered about my motive. Was this for me or for him? </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: large;">I went back around the car and told Sabash it might be best for me to get him in by myself. Sabash went inside and sent one of the aides out. She started trying to help me, and the whole situation got worse. At one point, I asked him if he wanted to go back inside, and he didn't answer me. He looked distressed, and the aide said she was going in to see if one of the other aides might get a better response from him. When she left, I opened the front door of the car, walked Billy up to the door, and he was able to place his left foot on the floor board and most of him landed on the seat. At that point, I could move him over enough to buckle him in and close the door. I held his right hand while I drove to ensure he didn't open the door. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: large;">Once we got into church and seated, Billy was fine. I was not. I love having Billy with us, and I truly believe he enjoys being with us. However, I know that sometimes I do things more for me than for him. He may enjoy being with us, but it upsets his world to take him away from what he knows. After worship service, Shelley helped get him in the car again, so we could go to dinner. Getting him out of the car is not as big an issue, and everything was smooth sailing at the restaurant. When it was time to leave, Shelley and Andrew helped me get Billy to the car, and once again we encountered an issue. First of all, it was still cold and breezy. In addition to that, the car parked next to us was having trouble starting, and when they tried to start their car, it made a loud noise that confused Billy. He stood like a statue looking straight ahead. He didn't respond when we asked him to get in the car. I was inside the car asking him to get in, and Shelley and Andrew were at the door with him trying to get him in. In retrospect, he probably felt like we were ganging up on him, and he got upset. That made Shelley upset, and we were back to tears over getting Billy in the car. It seems like it would be so simple, and yet, it's one of the toughest things to do. Is it worth it? </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: large;">I don't go see Billy on Sundays usually because I need a day away. When I went Monday evening, he was back to his normal for now. Shelley went Tuesday and said he was in a good mood and laughing. This afternoon I attended the annual Christmas party in the memory unit. We take gifts to our loved ones, Santa and Mrs. Claus visit (Billy never acknowledges them), and we visit over some yummy desserts. Today we sat with Billy's new roommate, John, and his wife and son. I enjoy getting to know the families of the residents because I love knowing their stories. After talking for about half an hour, I told John's son that I noticed they had some fiddles (or violins) and other pictures hanging over John's bed and that I assumed he had played that instrument. Oh, yes, he told me. He had played in a band called the Light Crust Doughboys, and they had been really good. I guess he didn't think I would know who the Doughboys were, but those of you who have known Billy Jack Knowles since college, know that I do know who they were. Billy's roommate is John Walden. He is 85 now and was diagnosed with Alzheimer's Disease at age 65. What a cruel disease. So cruel that neither man can talk about a shared passion, but I am thrilled about this. Maybe Billy and John will catch up some day in Beulah Land. </span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com1tag:blogger.com,1999:blog-2289811992988702657.post-43637084824121113222013-11-17T20:59:00.002-08:002013-11-17T20:59:43.602-08:00Stupid Alzheimer's, Stupid Dementia of All Varieties<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I am tired. Exhausted. Done. Depleted of energy. Compared, to my mom, however, I am the Energizer Bunny. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I've written about my dad's dementia related to Lewy Body Disease, and the last few weeks have been incredibly stressful for our family. We moved my parents to this area a year ago after 39 years in their house in Corsicana. A year and one day later we moved them out of the assisted living facility because Dad's condition required much more supervision than was available. After several weeks of looking and pricing (egads! The cost of long term care is hideous!), we decided on a new memory care facility that was just opening their second home last week. We had concerns from the beginning...the staff seems young and unprepared for the level of care some of the residents need. In the last week, things began to crumble. One resident required almost one on one attention, and the most staff they have at a time is two. The needy resident went in and out of rooms, taking things, unmaking beds, and kicking walls. Dad chased her out of his room, and yelled often. After five days, the staff took Dad's cane away from him because he was threatening to hit her and others. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">On Thursday evening, we received a call that Dad had fallen, and the staff felt he needed to be seen by a doctor. I thought we might be able to take him in the car, but when we arrived, we realized he couldn't walk, even with a walker. That did not stop him from trying, though. An ambulance took him to the ER, and after many xrays, we found that had two fractured lumbar along with many bruises. He is to be in a wheelchair for at least two weeks. We took him back to the facility, and after 20 to 30 minutes of battle, Mom got him into pajama pants and into bed. Mom and I got home around 12:30 a.m. and fell into bed. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Mom received another call around 6:00 a.m. Dad had fallen again, and this time he hit his head. The ambulance was called again, and off we went back to the hospital. When we arrived, Dad looked like he had lost a fight with his bloody head and black eye. We did meet new staff members, since the shift had changed. We were very impressed by the hospital staff. Dad has not been a good patient. In fact, he's been rude to almost anyone trying to help him. He's hit and kicked, and called people names. This is not my dad, and anyone who knows him understands that. Dementia is worsened by falls and stress. We also feel he may be somewhat dehydrated, and that makes it all worse, too. During the second visit to the hospital, a social worker helped us get Dad into a rehab facility. He will be there for four weeks minimum, and so far, we are waiting to be impressed. Our prayer is that he can regain his ability to walk with his walker. I cannot imagine trying to keep him in a wheelchair. When I pushed him down the hall a bit, he kept putting the brakes on. He has some strength but not in his legs obviously. Mom has very little strength and stamina right now because of the chemo she is still getting (stupid cancer). We are praying she only has two more treatments. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Meanwhile, back at the nursing home, Billy is doing pretty much the same. I'm so thankful that he is fairly settled into where he is, and that for the most part, he's happy. I picked him up yesterday afternoon, and he was alert and smiling most of the evening</span><span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">. He speaks so little, that when he says anything I recognize, I get really excited. We were standing in the foyer after worship last night, and he saw my brother-in-law and nephew walking toward us. He said, Shawn, my brother-in-law's name. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">The main issue I have with Billy is getting him in and out of the car. A few weeks ago, it took us 20 minutes to get him in. I've learned that it's best if someone else opens the door, and I can just walk him to the door and get him as close as possible, then it's almost like muscle memory takes over, and he puts the correct leg in first. If I walk him to the door, and stop to open it, it throws him off. Even when I get him in the car, he doesn't understand to scoot over. I sort of stuff him in, and make sure both feet are where I can close the door. He rides in the back seat, so I can use the child locks. He loves to pull on the door handle. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">It's hard to believe that in January, Billy will have been in the nursing home for two years. I attended his Care Meeting last week, and we talked about the difference in Billy today and Billy then. He's declined so much, but he can still recognize his family and friends, smile and laugh, and he enjoys his meals. The unit lost another resident last week....Hazel, the lady who insists that she dated Billy many years ago, passed on Wednesday. She had a stroke the weekend before. Another empty bed, but not for long. Everyday, people are searching for a special place for their mom, their sister, their uncle, their husband. We don't all find the right place on the first try. We have been blessed with the care Billy receives, and I do not take it for granted. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Thank you so much for your support of us in so many ways...prayers, walking with us, visiting Billy, monetary assistance, and just asking about him. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com2tag:blogger.com,1999:blog-2289811992988702657.post-48336546019254069282013-10-21T19:01:00.001-07:002013-10-21T19:01:07.137-07:00It's Time to END ALZ!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">This Saturday, October 26th, marks the fifth year we have had a team in the Alzheimer's Association's Memory Walk. The first year, our team consisted of Billy, Shelley, two of her friends, and me. Each year the team grew, and last year we had our biggest group - somewhere between 40 and 45. This year we have a bit smaller group, but no matter how many, knowing that we are doing <i>something</i> to deal with the anguish of AD makes us feel better. When your loved one has this disease, you find there is really not a lot you can do for them other than try to help them maintain skills and keep them comfortable as the disease progresses. Advocacy helps you feel like you are doing something to help by raising some money and honoring those who have the disease or have died from it. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">This year our list of honorees is shorter than our list of memorials. My prayer is that neither list grows in the next year, but that is unlikely. On the back of our shirts this year:</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><u>Honorees</u> <u>In Memory of</u></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Billy Knowles Aleta Asher</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Roark Barnes Jacque Carter Pedigo</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Curt Morris Roberta Hooper</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Bill Leavell Sarah Sissel</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Bobby Lowrey Ruby Futrell</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Wanda Lehrmann Mike Henley</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Ama Bryant David Schwerdtfeger</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"> Chief Loveland</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"> John Sikes</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">If you are inclined to give to this cause, the link to the website is at the top of my blog on the right hand side. The rotating disk reads Donate to Me. If you click that link, it will take you the Alzheimer's Association website and you will find a place to search for my name. Thank you in advance for any and all donations. We must help to END ALZ!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><br /></span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com1tag:blogger.com,1999:blog-2289811992988702657.post-54951719372277919282013-10-01T20:00:00.002-07:002013-10-01T20:00:52.194-07:00The Double Whammy<div>
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<tr><td class="tr-caption" style="text-align: center;">Don Garrett and Billy Jack Knowles</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Billy had a special visitor last week. Don Garrett paid him a visit, and I'm sure I enjoyed it as much as Billy. Don and Billy were buddies in college - playing trombone in the Big Purple Marching Band at ACU. They were also brothers in their social club (fraternity in layman terms), Kinsmen (Gamma Sigma Phi). It means so much to me when friends visit Billy. It's a hard thing to do...it's not easy to see this person who had such a vibrant personality walk along like a stooped over elderly man, saying very little. When he speaks, he says just a few words, but he often gets his point across. I see Billy all the time, and it's hard, so I know when people haven't seen in him in a long time, it's tough on the heart. But it is so appreciated. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">It's been a month since I last posted, and thankfully, we've not seen major changes in Billy other than his limited mobility. Last December, a new resident came to live in the unit. She was a year younger than Billy and walked constantly, crying and cursing often. Her husband told me she had been diagnosed with young onset Alzheimer's Disease about three years earlier, and in October she had a huge decline. That decline continued in the nursing home, and she went from walking to stumbling and eventually to being wheelchair bound. Because she was no longer a flight risk, she was moved to the general area of the nursing home. Her husband had heard about Normal Pressure Hydrocephaly (NPH) and was looking for a doctor who would see her. My very simplistic definition is that as the brain literally falls apart in areas, those areas fill with fluid. Sometimes the fluid presses on certain remaining areas of the brain that control walking, speaking, and continence. The resident's husband found a neurologist in Arlington who tests for this and determines if a shunt is helpful in relieving that pressure and thus returning some of those skills on some level. I was skeptical about the procedure, but I was also very curious to see how it turned out. After several tests and a few months, she had the shunt placed at the back of her neck. It took a few months, but she is now walking as much as she did when she first came to live there. Unfortunately, the administration asked her husband to find a new place for her. Her emotional outbursts and cursing are considered too disruptive. Obviously she is talking more, but her vocabulary is limited to these tirades. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I did some research on the procedure, and I feel like I must check into this for Billy just to improve his mobility. That is the skill that is most likely to be restored, and the improvements can be seen up to six months after the shunt is placed. I have no idea that this is viable for Billy, and I ask for prayers on making the right decision. I have no desire to make him go through anything that is harmful or painful. I'm not even certain how he will respond to the tests. He will need an MRI, and insurance will have to approve everything, so I have several hurdles before knowing if this is an option for him. I appreciate prayers for making the best decisions for Billy. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">This post may be one long prayer request, but our family really needs prayers for decisions. My dad has Lewybody Disease, and his dementia has become much worse in the last several months. Last November we moved Mom and Dad into an assisted living facility in this area. It is a type A facility which means it is the lowest level of care for assisted living. It is a nice place, but it is not secure, and they are not equipped for my dad. He wanders out of the apartment when Mom is napping or in the restroom, or anytime really. Dementia patients always seem to be searching for their happy place, and it's hard to find, so they wander. Dad can never find his way back to their apartment. He's often on the wrong floor and wrong end. The staff takes him back to the apartment. A few weeks ago, he went for one of his many walks, and after a few minutes, Mom went to find him. She met the activities director in the hall who helped her look for Dad. As they walked past a window, the director saw him - face down on the sidewalk in the back of the facility. I am amazed at how many times Dad has fallen and NOT broken a bone. The paramedics were called, and they checked him out and felt he was okay. His face was scraped up, but that was all. However, it was a big wake-up call for my mom. We are in search of the best place for my dad, and I know Mom would like to keep him with her somewhere, but I don't know that we will find that place. Mom does not need assisted living, but she also cannot handle Dad's increasing needs. She continues to battle ovarian cancer, and we are praying that tomorrow is her last chemo treatment. I feel like our family has dealt with the double whammy twofold. Billy and my dad both have dementia. Mom and her sister both have ovarian cancer. I've never lost faith, but I've had some questions for God lately. Can we get a break?! </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">One of the ways our family has chosen to deal with Alzheimer's Disease is to advocate for research. This is the time of year we get our team together for the Memory Walk on October 26th. It's also the time I seek donations to the Alzheimer's Association for research. If you can walk with us we would love for you to join our team. If you can give ANY amount, that would be awesome. To do either of them, just click on the link to the right at the top of my blog, and it will take you to my page. There is a place for you to put in my name, Kathy Knowles, and it will take you to my page. I thank you in advance. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Peace and love to all. </span></div>
Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com4tag:blogger.com,1999:blog-2289811992988702657.post-10052262167010250692013-09-01T21:44:00.002-07:002013-09-01T21:44:23.733-07:00Always Adjusting<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT8HmEFgtl_Q_RJxoza_JMM9Btp_nuI6qU3JC2TWdRjtov9oxymjQhMcW4bkArE7pTwfq7gG_NjnDBmkzK8PjLAkK6JDFIgt4SfeKanzu-GQD8oJyHCtNNS4i8-WG7j3FxXMEJfX9II-Om/s1600/photo-16.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT8HmEFgtl_Q_RJxoza_JMM9Btp_nuI6qU3JC2TWdRjtov9oxymjQhMcW4bkArE7pTwfq7gG_NjnDBmkzK8PjLAkK6JDFIgt4SfeKanzu-GQD8oJyHCtNNS4i8-WG7j3FxXMEJfX9II-Om/s320/photo-16.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A happy Billy when he's with family! </td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I read a post on Facebook the other day by the wife of an AD victim. She commented that she noticed a difference in him one day, and that generally meant that he would probably go back to his "normal" the next day, but soon the difference becomes the norm. I identified with that statement completely! Billy goes along as usual, and then one day we notice he can't seem to do something he's been doing. The next day he can do it, but eventually (a fews days or weeks) he loses that skill completely. We've seen that with eating, speaking, and his ability to get around. A big challenge right now is getting him into the car. It used to be second nature to him, and he could buckle his seatbelt on his own. Then I started having to pull the seatbelt down for him, and he could do the rest. Now, I buckle him in after I finally get him in the car. He struggles to figure out how to get in. I pat his left leg and tell him to put that leg in first. Then he sort of hops over and gets his left hip in and stops. He's heavy enough I can't scoot him over, and when I tell him to scoot over, he doesn't understand. So, I sort of cram him in....lifting his right leg in and pushing his foot in. He gets in just enough to buckle him and close the door. He sort of leans over toward the console throughout the ride. I have to make certain we have enough room on the passenger side of the car because if it's too tight, it's a no go. He needs a little help getting out of the car, but it's easier than the entrance. I also have to watch him carefully because he has opened the car door several times while I'm driving. Eventually, I will need to put him in the back seat to use the child proof locks unless I can get one on the front passenger door. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">No matter how difficult it is to get him in the car, I still enjoy having him with us at church and family gatherings when possible. And he enjoys being with us. A few weeks ago, the evening nurse called to tell me the psychiatric nurse practitioner who sees Billy regularly felt he was taking too much Seroquel. I certainly agreed since he often fell asleep before finishing his lunch. They eliminated his afternoon dose, and he is much more interactive now. That has some drawbacks at times, but overall, it's nice to have him more alert and communicative. Typical of the disease, he has some bad days at times. One day recently he was combative and leaning to the left when he sat and walked, but he definitely has more good days than bad. When I picked him Saturday afternoon, he was reading/ looking at a book, and he looked up and waved as I walked toward him. For quite a while, he's been sitting with his head down when I arrived, so I like that he's more aware of his surroundings. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">It's sometimes hard to tell if his behavior changes are related to the disease or the medications. I do remember when his behaviors were so extreme, and I prayed for medication that could help. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">As the brain becomes more damaged during Alzheimer's Disease, it affects speech. I remember Billy's mom would use lots of alliterative nonsense words, and Billy does the same. He repeats a syllable or two over and over, and last night, Shelley and I were thankful we were the only ones in our large group who could hear him saying over and over, "fuca-fuca-fuca-faca..." We looked at each other with shock, and then he stopped. Thankfully! He meant nothing bad by it, that sound just came to him. You never know which sound will emerge! </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">What gives me peace is that Billy does not appear to be in pain, and I believe he is at a point where he does not remember his life before. The most difficult part of this disease for Billy was knowing that he was losing part of himself steadily. He was frustrated and angry, and I was easily exasperated because I didn't know how to help him. He's generally easy to get along with unless someone yells at him or something is bothering him, and he cannot communicate his need. One of the aides is so good with him, and she's definitely my favorite. She works with him to prevent him getting agitated. She takes him to the restroom regularly (luring him with chocolate!), and this prevents him getting wet which in turn leads to agitation. She does a good job of shaving him and getting him dressed. Last night, I could tell that whoever shaved him didn't rinse off the shaving cream, and it was dried and caked in spots. It's the little things that I wish I could do for him, and I can't when I'm not with him. I worry about his teeth. He doesn't remember how to brush and he's not keen on someone brushing them for him, so it doesn't get done the way it should. I guess I have to let that one go, too.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Matt Redman's song speaks to me every time I hear it, and I am so grateful that God never lets go of me, and neither do any of our family and friends. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><a href="https://www.youtube.com/watch?v=RB1NJV3rG6k">Matt Redman sings You Never Let Go of Me</a></span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Thank you so much for your prayers, your thoughts, your monetary gifts that come just when we really need them, and your love and concern for Billy and our family. We love you dearly. </span><br />
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com1tag:blogger.com,1999:blog-2289811992988702657.post-17530160106749177222013-08-13T21:07:00.000-07:002013-08-13T21:07:11.112-07:00How Are We Doing?<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I had dinner with a friend last weekend. We talk periodically but not as often as we once did, so we always have to play catch-up. She asked how Billy is doing, and I gave her my short answer - about the same. Steady decline but no big dips lately. Then she asked how I am, and I told her I'm fine. She looked at me and said, "How are you really? How do you cope with this all the time?" She's been caring for her sister-in-law who is showing big signs of dementia, and she knows some of the stress involved. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">The truth is that I do pretty well nearly all of the time. I don't take credit for it because it's the constant prayers of so many who pray when I'm prayed out. I'm like many of us - I know that I can give all of this to God, and I still try to handle things on my own. There are times, though, that it all gets to me. I had some time to myself this weekend, and I made a mental list of things I miss about my husband. We were like most couples who spend over 25 years together. Some things he did made me nuts, and I feel certain I got on his last nerve at times, but most of all, we enjoyed being together. I miss the easiness of being together. I miss the companionship. During the summer time, couples are taking trips together. We looked forward to our empty nest and having time and maybe more money to travel. Billy felt the continental US had plenty of places to visit, and I agreed. I still like to go places, but I so wish I could share the experience with him. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I also miss his sense of humor. Billy made me laugh for our entire relationship, and sometimes he still does. He was witty and smart and he could not help himself if he had something funny to say - he had to say it. He cracked himself up! He loved to trade barbs with our brother-in-law, Shawn. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I miss his mini-lessons on history. That was another thing he couldn't hold back on...if he thought I didn't know </span><span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">something, he had to share it with me or quiz me on it. Every trip we took as a family turned into a lesson about US history in some way. In spite of their complaints, I believe Shelley and Andrew loved it. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I miss sharing my bed with him - the intimacy of sleeping with someone for 30 years goes way beyond sex. When he would go on a trip, I didn't sleep that well. I missed his breathing. After we moved him into the nursing home, sleeping was harder. I'm accustomed to sleeping alone now, but it's not the same. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">So, I had a pity party the other night, and then I got up the next morning, thought about the all the blessings I have, looked at my puffy eyes (another reason I don't do pity parties too often), and I got back on track. I am thankful to still have Billy here with us. He knows his family and friends even if he doesn't talk. His smile and expressions show that he knows. He laughs readily still. We don't always know why he's laughing, but that's okay. He still hugs us and kisses us, and he makes eye contact. All of those are good things. I also know how blessed I am to have been married to the person I love and who loves me. Some people don't even like their spouse, and some caregivers are trapped taking care of a spouse that did not treat them well. I am honored to be the one who cares for Billy. God has known our whole lives how this would work out, and He helped prepare me for that. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Philippians 4:13 I can do all this through Him who gives me strength. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com2tag:blogger.com,1999:blog-2289811992988702657.post-46941632710864675582013-07-18T18:02:00.002-07:002013-07-18T18:02:51.686-07:00The Inevitable<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYM23lXP5WaunL6KkGCIXjvGRlHSLKtWtiNt9-f9IMggfbKwBWufx4F3SiaHdPPTje83IOg6cEQFsRZ5TiOXO7gmHFS9Rsl9ESCoSLf0Ix0n5_feMxxGSlRh0Pwh6OD63lbA2ZuwK0e5nh/s1600/photo-8.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="271" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYM23lXP5WaunL6KkGCIXjvGRlHSLKtWtiNt9-f9IMggfbKwBWufx4F3SiaHdPPTje83IOg6cEQFsRZ5TiOXO7gmHFS9Rsl9ESCoSLf0Ix0n5_feMxxGSlRh0Pwh6OD63lbA2ZuwK0e5nh/s320/photo-8.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My thumb was in the way, but I couldn't resist the smile!<br /></td></tr>
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"I know three people who have got better after brain tumors. I haven't heard of anybody who's got better after Alzheimer's." Terry Pratchett</div>
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<span style="font-size: large;">When I stay away from visiting Billy for too many days, I struggle with my emotions when I see him again. I don't stay away long, but even several days does it. Not certain why that is, but when I went to see him on Tuesday evening, I had not been for about a week. I had some surgery last week, and I've not felt like getting out, so I missed him. For so long the norm for us was that I would show up about 4:45 because he eats at 5:00. He would meet me about half way down the hall and say something like, "It's about time you got here." Always with a smile. He was always walking and up. I wondered if I would ever come in and catch him sitting. </span><br />
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<span style="font-size: large;">I'm not certain when things changed so drastically. I still arrive at about the same time, and Beverly, one of the residents always sees me first. She reaches out, grabs my hand, and tells me how glad she is to see me - sometimes with tears. I glance around and Billy is sitting at a table, usually with his head down. Tuesday he had about three pages from a People magazine that he was folding and shuffling. I didn't expect the emotional drop I had. He's been this way, and I've seen it, but somehow several days away, and his condition astounds me. He sits like he's much older than his 57 years, and he does not jump up to come greet me. In fact, I don't think he recognizes me until I go over to him and speak. I pulled up a chair and asked him a few questions. He never answered, but he looked at me. By the end of his supper, he was more aware of my presence, especially since I'm the hand that feeds him! I just can't remember when he made the turn. It was gradual, but I've noticed that when a skill is missing one day, it soon becomes the norm. For a while, we helped him eat by just putting food on his fork, and he would pick it up and eat it. Now, you have to take that food to his mouth. </span><br />
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<span style="font-size: large;">The memory unit remains a happening place. It seems they make changes daily, and I'm glad they look carefully at it. The unit has 18 beds, and when Billy arrived, they had 18 residents. Of those 18, five remain in the unit, including him. Too many have passed away. Several have been moved out of the unit because they are no longer mobile and at risk to wander. It seems they have new folks almost weekly because there is no shortage of dementia victims. The most recent person to move out of the unit is Donnis. I'm not certain that he has Alzheimer's because he was much more aware than the other residents. His needs seemed to be more physical, and he is quite territorial and loud. The residents in the unit wander from room to room. They may recognize their room, but they may not. It's not unusual to find one of them asleep in another's room, but if one got close to the door of Donnis' room, everyone knew it. He was a career military man and must have been a drill sergeant! His voice booms. He does not want anyone touching his stuff, and one day last week, he was waiting for his shower and had put his clean clothes on a chair outside the shower room. Billy wandered along and picked up Donnis' shirt - another common thing that dementia persons do. They are a bit like toddlers, picking up and observing and playing with things. Donnis began yelling at Billy (he doesn't do well with yelling) and grabbing the shirt. Billy got a death grip on the shirt and pushed. Then Donnis scratched Billy, and Billy scratched Donnis. Not a pretty sight. I always know when I see Lexington Place on my caller id that he has had some sort of incident and probably has a scratch. This was not the first incident between Donnis and Billy, and I was told they were having a care meeting to find a solution. I like the solution. </span><br />
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<span style="font-size: large;">With several residents being moved out, the unit now has several newbies. My favorite is Hazel whom I met on Tuesday. While I was feeding Billy, Hazel was another table over and said, "Bill. Bill! You said you were going to take me home." Bill(y) did not respond. One of the aides told Hazel that I was Billy's wife. "I told you he has a wife, and here she is!" Hazel looked at me so sincerely, and said, "I'm so sorry. I didn't know he was married." I assured Hazel that I was not offended in any way. The next evening, Hazel joined Billy and me while I fed Billy. What a delightful lady! She is not as far along in the disease as Billy, and she can carry on a conversation very well. She mentioned numerous times that if it doesn't quiet down there (the unit), she is going to have to quit that school and go back home. (I mentioned Beverly above, and she makes so much noise before dinner. She sort of hums, moans, and sings all in a smoker's rattle at a volume that matches Donnis'. It is beyond annoying, but like everyone else there, she doesn't do it for that purpose.) Hazel told me during our meal that she and Bill(y) went together a while back, and she really liked his family. She looked at me very seriously and said, "You are a lucky lady." I certainly agree. She turned to Billy then to tell him how lucky he is to have me. He smiled which we all know means he agrees! Once again Hazel reiterated how lucky I am to have him, and then she said, "I'm pretty lucky, too. I have a good looking man at home. His name is Glenn." I look forward to meeting Glenn, and I really hope Glenn is still around. So many times, they talk about their relatives in present tense and I learn that they passed away 5 years ago. I have a feeling I'll be sharing Hazel stories for a while, and I pray she stays in the unit for a long time. </span><br />
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<span style="font-size: large;">Thank you for reading, praying, and encouraging through this blog and in many other ways. Alzheimer's is a thief; it is always fatal; and at this time there is no cure. It's time to END ALZ! </span><br />
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<span style="font-size: large;">Peace and love. </span><br />
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Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com2tag:blogger.com,1999:blog-2289811992988702657.post-61838234515011720732013-06-29T21:30:00.000-07:002013-06-29T21:30:05.385-07:00Dearest Blog....I have neglected you for low these many weeks. I should have written many times, but something stopped me. When our son, Andrew, was a child he would go somewhere for several hours or for an overnight visit, and when he came home we would ask what all he had done. His usual reply was, "Mom, it's just too much to tell." That is how I feel right now. I have too much to tell, so instead of playing catch-up, I will share the here and now and very recent past. Then over the next several posts, I will share some of the highlights and lowlights of the weeks between early May and now.<br />
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How is Billy doing? My usual answer is "about the same"....but that really depends on the last time I've talked to that person or written. I notice changes in Billy in increments of months. He has been about the same for the last 4-5 months. His weight has stabilized at a good number - 180 pounds give or take a few. His lowest weight was about 165, and he didn't look healthy at that weight. With the weight he lost, he lost a good deal of muscle mass. He eats well if he is fed. He is physically able to feed himself, but he will not finish a meal on his own, and he doesn't mind being fed. If we put a bite on his fork, and sit it down on the plate, he can get the food to his mouth. That takes so long, that I prefer to feed him. I go most evenings to feed him and visit, but I take Sundays off. On Saturdays I pick him up and take him to our Saturday evening service at church. He enjoys being with us, and his behavior has not been too disruptive to do that. Afterwards we have dinner out with family or friends. I usually have him back to the nursing home by 8:00, and he's ready to get back.<br />
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Billy's balance and mobility are noticeably shaky. He sort of does the old man shuffle, moving so slowly that the only way he could be slower would be to stand still. His perception is way off, and he struggles with stepping up on curbs. He steps off of them a bit easier, but I hang on to him so he doesn't fall. It seems his depth perception is off, too, and that may have something to do with him not bothering to eat. When he starts to take a drink, he gets his lips ready for a sip long before the cup reaches his mouth, and as soon as his lip feels it, he knows to take a drink.<br />
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One of the hardest things to grow accustomed to is his silence. Billy has always been a talker and a cut-up, and he got tickled easily. I so miss his laughter. I can remember so many nights when I would go to bed earlier than he and I would hear him guffaw at David Lettermen. It usually made me laugh because he enjoyed it so much. He talks so little now, and when he does speak, it makes little sense. Some of his sentences are made up of only nonsense words, but usually they start with sensible words in the correct order and turn into nonsense. I haven't decided if the nonsense words are usually nouns or adjectives, but he usually gets the verbs correct. When I picked him up tonight, he said, "I like your schlactallack." Or something like that. His mom did the same thing...she used a lot of alliterative nonsense words at the ends of her sentences. He also blurts out complete sentences that make sense, too. Last week, we were having dinner with family, and my nephew got up from the table. Billy looked at him and said, "Where are YOU going?" It surprised all of us. One thing he still says with clarity is "I love you." He doesn't always say it without prompting, but he gets those words correct.<br />
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For the most part, Billy has many more good days than bad days. He's pleasant and everyone I talk to at the nursing home comments on his good nature. One of the other residents who is much more aware than most of the others often tells me that "he's nice." He does get agitated at times, and he doesn't know how to express that, so he has hit at staff members before. On Fathers Day, we took him and my dad to a restaurant for dinner. They had rolls of paper towels in the middle of the tables in very heavy holders. Billy decided to pick up one and squeeze it, and Shelley tried to take it from him. He tightened his grip, and started to tuck it under his arm like a football! I finally convinced Shelley that it was not a life or death issue, and he was not using it as a weapon. A few minutes later, he released the paper towel holder. Like most of the residents in the memory unit, Billy's actions are toddler-like. He picks up things he should not like trash. He reaches for other's food or drink. That is the reason units like this can look so sterile and barren....no lamps, pictures on walls, or items sitting around. I love that the unit at this nursing home has fabulous murals throughout that are realistic and homey.<br />
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My hope and prayer is that we can keep Billy at this point for a a long while. I've noticed a practice at the nursing home that as residents become less mobile and are not able to wander out of the the residence, they are moved out to the main area. I've learned from some more experienced caregivers, though, that if I don't agree to do that, they won't move him. I want him to stay where he is because he is accustomed to it. He has a routine and the staff to resident ratio is lower, so he gets more attention. <br />
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I plan to write more frequently this summer. I have more time right now as I'm off for a few weeks. I remain faithful and give God the glory for giving me strength to face all things with peace and courage. <br />
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<br />Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com2tag:blogger.com,1999:blog-2289811992988702657.post-22849380461414186042013-05-04T21:51:00.000-07:002013-05-04T22:11:22.054-07:00Renewal <span style="background-color: purple;"><span style="color: #eeeeee;"><br /></span></span>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><span class="text Rev-21-4" id="en-NASB-31059"><b>"...</b>and He will <sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-31059I" title="See cross-reference I">I</a>)"></sup>wipe away every tear from their eyes; and <sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-31059J" title="See cross-reference J">J</a>)"></sup>there will no longer be <i>any</i> death;<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-31059K" title="See cross-reference K">K</a>)"></sup>there will no longer be <i>any</i> mourning, or crying, or pain; <sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-31059L" title="See cross-reference L">L</a>)"></sup>the first things have passed away. </span><sup class="versenum" style="font-weight: bold; vertical-align: top;"> </sup>And <sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-31060M" title="See cross-reference M">M</a>)"></sup>He who sits on the throne said, 'Behold, I am <sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-31060N" title="See cross-reference N">N</a>)"></sup>making all things new.' And He said, 'Write, for <sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-31060O" title="See cross-reference O">O</a>)"></sup>these words are faithful and true.'" Revelation 21:4-5</span></div>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">The last several weeks have been tough for lots of reasons. I've not written since mid-March because I've been busy, distracted, sad, angry, worried, lazy, depressed, exhausted or not in the mood. But I'm a joyful person. I'm optimistic and strong. I'm stubborn and tenacious. However, I sometimes reach a limit of what I can handle, and the last several weeks have exceeded my limit. </span></div>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Billy is about the same...maybe slower and not as steady on his feet, but he's still walking, talking very little (but talking), smiling, and recognizing those closest to him. I see him five or six times a week when I feed him supper at 5:00 in the evening. I take him to church on Saturday evening, and we go to dinner with friends or family afterwards. Most days I visit, I leave with a smile and a warm heart, but if I allow myself to look at him and think about our relationship now, I get sad and teary-eyed immediately. I sit there beside him, and I just long to talk to him about my day or about my parents or about some silly thing that bothers me. It makes my heart hurt to see him walk so slowly, to watch his hand shake as he tries to get a bite of food in his mouth. </span></div>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">My stress level has been much higher recently due to all that goes with the operation of school in the spring, but this entire year has been more difficult than usual. As a campus, and as an administrator, we've had an unusual amount of issues. Some have stunned me. Some have disgusted me. All have exhausted me. </span></div>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">This past fall my daughter and son-in-law moved in with me. It helped them and me financially, and after several months we decided it worked out well enough that we plan to continue the arrangement for a while. We also decided we could use a house with one more bedroom, and it so happened that our landlord (great guy) had one coming available. So during the busiest time of the school year, we decided to move to another house. I don't know what I was thinking at that time, but at some point in a few months, I'm sure I'll be happy that we did it. At the moment, I am looking at my room with boxes lining the blank walls and wishing I had labeled said boxes better. I need to locate my clock radio. </span></div>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">My sister and I have taken turns shuttling my mom (with Dad joining us) back and forth to doctor's appointments. She's doing well and getting stronger each day. She has a scan in the next few weeks, and she and the oncologist will determine together if she will undergo more chemo. We pray she will not need it. A few months ago, my Aunt Pat, Mom's younger sister, was having severe pain in her lower abdomen. My uncle took her to the ER, and by that evening, she had a diagnosis of ovarian cancer...on the same side and in the same area as my mom's cancer. The tumor was pressing against her ureter (just as Mom's had), and her kidney was not functioning properly (like Mom). The two differences for my aunt are that her cancer is more advanced, and she has the complication of Parkinson's Disease. She began chemo before even leaving the hospital. It's been very difficult on her, and after her first round, she ended up back in the hospital. Please keep Aunt Pat in your prayers. I hate cancer and Alzheimer's. </span></div>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">So far the theme of this post has not followed my title, and this is where I tell you that God has never let go of me in all of this. I have been blessed over and over. When we moved out of the other house, four beautiful ladies in my small group from church took on the task of cleaning the house...not an enviable job. Last week, after we had just completed the moving of stuff from one house to the other, I received a call from a dear friend in Midland where we lived for almost 20 years before moving back to this area. She told me that she and two other sweet friends were coming to see me the next day. She missed me, knew we had just moved and would come help me with unpacking. I was thrilled to see them. They arrived on Monday evening, and after we had eaten dinner, she handed me a newspaper clipping and wanted me to read the ad another friend had written for a garage sale they all had together. I thought it a bit odd, but we've done stranger things. The ad was pretty typical of garage sale ads until the end where it said that all proceeds would go to a friend with Alzheimer's. It seems that the life group Billy and I were a part of for many years wanted to do something to help us. They knew I still had a hefty bill at the nursing home to take care of along with Billy's dental bills. Many people donated items to the garage sale and others just donated money. I'm still amazed at the goodness of so many of my brothers and sisters in Christ. We received enough money to take care of the nursing home in full and pay most of the dental bill. Have you ever been so grateful that you don't even know how to properly thank someone? I am at a loss for words...not a frequent problem for me. While they were here, they paid a visit to Billy, and he was obviously thrilled. </span></div>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Another huge blessing has been the worship time I've shared with Billy and our friends and family. We've been studying Revelation the last several weeks, and when we came to Chapter 21, and our minister honed in on the promise from God that heaven will be a glorious place with constant praise and worship. But the best part of that chapter to me is that we will be made new. Billy will be his best non-Alzheimer's self. No more tears. No more pain. Lord, come quickly. </span></div>
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<span style="background-color: #674ea7; color: #eeeeee; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">It's time for a renewal of my spirit and my attitude. I have allowed what goes on around me to determine my actions and my outlook. Will I still get sad about Billy? Of course. Will bad things still happen to those I love? Yep. But I choose hope, and I choose to stand on the promises of God. </span></div>
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Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com1tag:blogger.com,1999:blog-2289811992988702657.post-15679990125211058212013-03-18T21:33:00.003-07:002013-03-18T21:33:52.353-07:00Watches, Pocketknives, and Random Sparks of Memory<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I've been in the center of a giant whirlwind over the last several weeks...maybe months, but in particular the last few weeks have left me spent - physically, mentally, and emotionally. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">School has offered a number of challenges - even more than usual. I have a theory that when you put over 1,000 fifth and sixth graders in a building, and each of them has one parent but many have multiple step parents, fathers of the week, and grandparents, issues will arise. Add to that 100 teachers and support staff, and you might have a few more issues. This year is number 32 for me in public education, and some might think I should have it down by now - this administration stuff. However, I can assure you that there is no prep course or primer for some of the things that arise, but as Hooper often says, I digress. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">My mom is finally out of the hospital and rehab, and now we have appointment after appointment to follow up with three surgeons, one cardiologist, and the primary care physician. My sister and I try to split the doctors' visits, but it is so difficult for her to get away from work and drive the hour commute back to my parents. I do love the time I have with my parents. I do hate the drive between Fort Worth and Dallas. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">In the midst of Mom's medical issues, when we were exhausted beyond what we thought was possible, my sister mentioned that we should get away over Spring Break. She and her family had rented a house on the beach in Galveston a few years ago, and we put our shekels together to go for four wonderful days back to the beach! It was the best thing I've done for my mental state in a long time. I spent hours on the balcony reading and napping. On Wednesday, we returned to the real world of all the things we want to do during Spring Break. One of my aspirations was to clean out my very large closet that I could scarcely step into. It was clean and organized last August, then life got crazier, Shelley and Andrew moved in, and I put more and more stuff in my closet. I started on Friday night. I'm still working on it. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I also felt the urge to clean out the bedside table drawers that had always been on Billy's side of the bed. The inventory in those two drawers include the list below; it is not an exhaustive list....just some of the items. </span><br />
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<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">3 watches - none working</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">1 old pocketwatch</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">5 pocket knives of various sizes and brands</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">1 letter from Shelley to her dad (made me teary)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">numerous CDs including The Mighty Mighty Boss Tones and Classic Old Time Music from the Smithsonian Folkways Recordings</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">1 claw massage thing</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">1 cassette tape of Smokey Robinson & the Miracles (we have not owned a cassette player in 10 years at least)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">1 pair of Coke bottle lens glasses from late 80s-early 90s</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">1 unopened box of Pinnacle Gold golf balls</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">his worn leather checkbook with pictures</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">3 combs </span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">his wallet</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">a few snapshots</span></li>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Every item I pulled out of that drawer brought me a memory - very pleasant memories for the most part, and what a blessing that was and is. Billy always had a "thing" about watches. He hated to be without one, and he liked having more than one. He treasured his granddad's pocket watch, and kept it close by. He also enjoyed pocket knives. According to him, a man should never be without one. He used his for everything from cutting away the bark of a pitiful looking tree to check for any life to slicing apples. The man loves apples, and as his dementia worsened, he would devour 4 to 6 apples a day and swear he'd only had one!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">He's always enjoyed a wide range of musical genre, so it was no surprise to find the CDs and the rather useless cassette tape. I am surprised that a Bob Wills tape didn't show up, but I'm sure several will be found as I go through stuff. Billy (BJ) as so many know him, was in a Western Swing band in college. They cleverly named it the Bob Wills Band, and they had some interesting gigs! He LOVED singing with that band. No Grammys were awarded to the Bob Wills Band, but a bond was forged that remains 30+ years later. BWISTK!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I really enjoyed looking at the pictures he carried of his family. He carried all his favorites of the kids. As so many parents do, he had more pictures of child number one - Shelley! He's carried the same photos for years, and you can tell by the condition of them. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Shelley - from very young to teenage. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Andrew - most baby pictures made of Drew included his sister! Such a handsome young man he became. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">He carried only one picture of me, and it was from the first summer after we began dating. He went off to sell Bibles in the Carolinas, and we missed each other terribly. I had these pictures made for him (gotta dig the faux country background), and I certainly didn't know he would carry this around forever. I was 19 and absolutely crazy about BJ Knowles. It was a very long summer. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">In 1976, I met and fell in love with Billy Jack Knowles. We were very young and even more immature. Five years later, we stood before family and friends and promised to love and cherish each other for the rest of our lives. We had no idea what the future would hold, but I am positive that if I knew then what I know now, I would do it over again. I love and respect him more than ever as he became the best husband, father, son, uncle, and friend anyone would want. </span></div>
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<span style="font-family: Verdana, sans-serif;">"Take care of your memories for you cannot relive them. " Bob Dylan</span></div>
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Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com3tag:blogger.com,1999:blog-2289811992988702657.post-67863291037401635612013-03-03T19:32:00.002-08:002013-03-03T19:32:38.531-08:00Praise and Thanksgiving<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif; font-size: large;">When I posted my last blog, I received many comments through Facebook, email, and this blog assuring me that prayers were going up for Billy and all of us who care for him. I posted on February 27th, and God answered my prayers on February 28th. When I went to feed Billy the evening of the 28th, he was a different person. He was responsive and smiled easily, and he told me he loved me. What a huge blessing! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The next evening was even better. I spoke with the evening nurse who told me they increased his Seroquel and changed the Xanax to prn. He always seems to "need" it more on the weekends. I'm not certain if his behavior is off on the weekends or if the expectations are different. </span></div>
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<span style="font-family: Arial; font-size: large;">I was able to pick him yesterday afternoon and take him to our Saturday evening service at church. It went well, and for the first time since the holidays, I took him home for a few hours for dinner and time with family. He was in a great mood, and as soon as he walked in, he began petting his dog, Bailey, and said, "There she is!" I love this photo that my son-in-law, Andrew took. He loves his dog! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I never doubt that God hears our prayers and answers them, but I don't always get his answer so quickly. Praise Jesus for interceding and putting my mind at ease. I am not naive about Alzheimer's Disease, and I know the future for Billy unless God provides a miracle, but oh how relieved I am that I am not facing a more declined mental state at this time. I am always so grateful for your prayers. </span></div>
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<span style="font-family: Arial; font-size: large;">My stress level was relieved tremendously this weekend. Billy was happy, Mom went home from rehab and is doing beautifully, and I will sleep in my own bed for the week. </span></div>
Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com0tag:blogger.com,1999:blog-2289811992988702657.post-44495021856614602982013-02-27T21:42:00.000-08:002013-02-27T22:07:40.560-08:00The Roller Coaster Continues<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">I should be getting my beauty sleep at this moment...or at least my survival sleep. But I find it necessary to write. Writing is therapy for me, and at this time in my life, it's less expensive than seeing the counselor! </span><br />
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<span style="font-family: Georgia; font-size: large;">During the last few years of my life, stress has become routine, and while I don't know that I thrive on it, I seem to hold up well under the pressure. The last 6 weeks have almost done me in...and I'm not alone. Our entire family has been a bit stressed. In addition to the "usual" stress of a spouse with Alzheimer's, we've had an additional stress with the health of our parents. My sister, Leslie, and I were thrilled to move them into an assisted living apartment back in November. Mom has been battling cancer for about 18 months, and Dad has Lewybody Disease. His needs were becoming difficult for Mom to handle, and the responsibility of everything for Mom was really rough. Chemo is tough and with each phase of it, it seems to become even rougher. It also was not curing the cancer or even keeping it at bay, so after much concern and thorough research, it was determined that the best thing to do was remove the tumor surgically. We knew it was a complicated surgery with a lengthy recovery, but no one knew how complicated it would be, nor how many complications Mom would face. She withstood a 10 hour surgery on January 16th, stayed in the hospital for two weeks, and has been in a rehab hospital since then. She may get to go home this weekend! We are hopeful. </span><br />
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<span style="font-family: Georgia; font-size: large;">Back to the stress part. Mom's surgery was in Dallas about an hour from where we all live. Our routine during her hospital stay was work all day, pick up Dad from their apartment where a caregiver had stayed with him during the day, and drive to Methodist Hospital in Dallas. Visit Mom for a few hours, take Dad back and spend the night with him. We are not comfortable leaving him alone, and he's not comfortable being alone. He still doesn't think of the apartment as home. Sometimes when we drive up, he says he hopes they have a vacancy for the night, or he asks if this is where he will live for the night. The next day, whoever stays with Dad gets up, and starts the entire process again. After two weeks, Mom was able to move to a rehab facility that is blocks away from their apartment. My stress lessened a bit because I no longer drove to Dallas several times per week. Mom has had numerous infections and a few setbacks, but we see great progress. </span><br />
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<span style="font-family: Georgia; font-size: large;">Now my routine is to work until about 4:00. Go pick up Dad from the apartment, take him to the rehab to see Mom. I leave him there and drive to the nursing home to feed Billy dinner, leave when he's eaten, go get fastfood for Dad and me, then return to the rehab place. On top of this, work has been crazy. I could write a few hundred pages about it, but I'll spare you all! My great comfort during high stress is FOOD! I'm not ready to face the music (or the groan) of the scales, but I know my clothes are feeling a bit stretched. </span><br />
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<span style="font-family: Georgia; font-size: large;">I have missed being able to see Billy each day. I know he will be fed, but I also know how short staffed they are, and I like feeding Billy. It's odd how he has to be fed because he has no trouble chewing and no noticeable choking, but if we don't feed him, he just sits there and might take a few bites but he ignores his food. It's difficult for him to get the food on his utensil and get it to his mouth. </span><br />
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<span style="font-family: Georgia; font-size: large;">He had a pretty long streak of being fairly happy, alert, and compliant. That stopped a few weeks ago. The evening nurse from weekdays called to tell me that he was walking very differently and nearly falling. He was agitated and combative. The nurse wanted to speak with the psych nurse and see what could be done. I had also noticed his walking was even slower than before and not completely steady, but I didn't worry much about him falling and attributed it to the progression of AD. The medical staff determined they would try to switch out the Ativan he was taking and give him Xanax. At first, it seemed to help a bit. A few days after he had been taking the Xanax, he used more complete sentences than he had been, and his wit was back. I went to pick him up on a Saturday afternoon, and as we were leaving one of the nurses told him she had not given permission for him to leave. She teases him often. He looked at her, and without missing a beat, he said, "We can go anywhere we want to go." I could even see the twinkle in his eyes. </span><br />
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<span style="font-family: Georgia; font-size: large;">By the next Saturday, he had changed drastically. I got a call from the weekend nurse telling me that he was bent forward while walking, and they were very concerned about him falling. He refused assitance and tried to hit a few people. He also refused his meds and would NOT take them. The nurse asked if I would come early and see if I could help settle him. With the traffic in our area, it takes me at least 30 minutes to get to him, and when I walked in, I did not see him walking the hallway. I walked by his room and could see his feet on the bed. When I went in to see him, he was sleeping hard. In over a year, I've only see him on the bed 3 or 4 times. He does not nap, but they had calmed him enough to get some meds down him, and I decided he needed to sleep more than he needed to go with me. I received another call yesterday from the evening nurse, and it was almost the same call I got the previous Saturday....walking and pacing unsteadily and very combative. He had to take meds in order to eat. Today, I went to feed him, and he was calm and glazed. I hate glazed. I feel sure it's a mixture of the disease and the meds. </span><br />
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<span style="font-family: Georgia; font-size: large;">I usually hold it all together pretty well. Tonight was not one of those times. The tears were about to roll, so I told Billy it was time for me to go. He did walk down the hall with me after a bit of coaxing, and he offered a smile as I left. But I still went the restroom to cry. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">This photo was taken on Valentine's Day just 13 days ago. His eyes were brighter, and his smile was wonderful. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIGBLmufdFqco0gQFkS79zMEaDorGSo3YUte2B2OjFSA3MkOfio21TY2vryuosvK7C3JkSKyG6QngI4PYyjpMCeTbbhaRu98_dhKpaOWV96lGwzFVq86oBG9doJx-4tsThQG5pIrmnehhR/s1600/My+Valentine.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIGBLmufdFqco0gQFkS79zMEaDorGSo3YUte2B2OjFSA3MkOfio21TY2vryuosvK7C3JkSKyG6QngI4PYyjpMCeTbbhaRu98_dhKpaOWV96lGwzFVq86oBG9doJx-4tsThQG5pIrmnehhR/s320/My+Valentine.jpg" width="240" /></a></div>
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The video was taken this evening. He's not with me. </div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/P2RgIqIxjbU?feature=player_embedded' frameborder='0'></iframe></div>
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">My hope and prayer is that tomorrow I will see Billy, and Billy will see me. I am so thankful I get to see this man any day, and I'm double thankful when he sees me. I hate this disease. </span>Kathy Knowleshttp://www.blogger.com/profile/14821708227918444513noreply@blogger.com2