I'm Getting There

When the movie, Still Alice, 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. 

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. 

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.

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. 

Thirteen years and counting...

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.  

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.   He never liked spinach, and I see no need to try to make him eat it now.  

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.  

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.

A friend recently reminded me of this beautiful promise from God. 
"Behold, I am making all things new."  Revelation 21:5

Well, Hello 2015...Give me whatcha got!

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. 


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. 

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. 

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. 

I look forward to all that 2015 holds and all that God does in our lives. Happy New Year to all!   

Oh give thanks to the Lord, for he is good, for his steadfast love endures forever! - 
Psalm 107:1

Counting My Blessings

Ephesians 5:20 “giving thanks always and for everything to God the Father in the name of our Lord Jesus Christ.”

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. 

I am beyond grateful for the opportunity to follow Jesus without fear for my life or true persecution. 

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.

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. 

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. 

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. 

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. 

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. 

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. 

I am blessed and grateful. 

Sixty Nine Days

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:

• 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.
• 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. 
• On September 22nd when we saw Dad he never opened his eyes and would not eat.  
• 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. 
• On September 28th, Dad went home to eternity at 1:30am.  
• We celebrated Dad's life on October 1st and laid his body to rest. 
• 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. 
• 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. 
• 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. 
• 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.  
• 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! 
• On October 29th, we took Mom to see the surgeon who scheduled her surgery for October 31st.  The surgery was considered palliative.  
• 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. 

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. 

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. 

Revelation 21:4 
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."

I Need Thee Every Hour - words so meaningful to me

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.

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. 

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.)

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. 

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. 

Alzheimer's is cruel, but you already knew that. 

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. 

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. 

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.  

The prayers of our friends and family are felt, and we are so grateful for all of them. 

Back to Reality

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. 

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. 

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. 

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.  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. 

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. 

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. 

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.