Monday, December 30, 2013

The Search for a Place

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. 

In the last two years, Alzheimer's has taken so much from 
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. 

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. 

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.  

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! 

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. 

Wednesday, December 18, 2013

The Okay, the Ugly, and the Ironic

"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. 

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. 

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 coax 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. 

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 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? 

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.  

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? 

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. 

Sunday, November 17, 2013

Stupid Alzheimer's, Stupid Dementia of All Varieties

I am tired. Exhausted. Done. Depleted of energy. Compared, to my mom, however, I am the Energizer Bunny. 

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. 

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. 

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. 

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. 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. 

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. 

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. 

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.  

Monday, October 21, 2013

It's Time to END ALZ!

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 something 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. 

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:
Honorees                            In Memory of
Billy Knowles                      Aleta Asher
Roark Barnes                      Jacque Carter Pedigo
Curt Morris                         Roberta Hooper
Bill Leavell                         Sarah Sissel
Bobby Lowrey                     Ruby Futrell
Wanda Lehrmann                Mike Henley
Ama Bryant                        David Schwerdtfeger
                                         Chief Loveland
                                         John Sikes
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!


Tuesday, October 1, 2013

The Double Whammy

Don Garrett and Billy Jack Knowles

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'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. 

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. 

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. 

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?! 

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. 

Peace and love to all. 

Sunday, September 1, 2013

Always Adjusting

A happy Billy when he's with family! 

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. 

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. 

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. 

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! 

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.

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. 

Matt Redman sings You Never Let Go of Me

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. 

Tuesday, August 13, 2013

How Are We Doing?

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. 

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. 

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. 

I miss his mini-lessons on history. That was another thing he couldn't hold back on...if he thought I didn't know 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. 

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. 

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. 

Philippians 4:13  I can do all this through Him who gives me strength. 

Thursday, July 18, 2013

The Inevitable

My thumb was in the way, but I couldn't resist the smile!
"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

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. 

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. 

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. 

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. 

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! 

Peace and love. 

Saturday, June 29, 2013

Dearest 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.

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.

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.

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.

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 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.

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.

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.

Saturday, May 4, 2013


"...and He will wipe away every tear from their eyes; and there will no longer be any death;there will no longer be any mourning, or crying, or pain; the first things have passed away.  And He who sits on the throne said, 'Behold, I am making all things new.' And He said, 'Write, for these words are faithful and true.'" Revelation 21:4-5

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

Monday, March 18, 2013

Watches, Pocketknives, and Random Sparks of Memory

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. 

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. 

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. 

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. 

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. 

  • 3 watches - none working
  • 1 old pocketwatch
  • 5 pocket knives of various sizes and brands
  • 1 letter from Shelley to her dad (made me teary)
  • numerous CDs including The Mighty Mighty Boss Tones and Classic Old Time Music from the Smithsonian Folkways Recordings
  • 1 claw massage thing
  • 1 cassette tape of Smokey Robinson & the Miracles (we have not owned a cassette player in 10 years at least)
  • 1 pair of Coke bottle lens glasses from late 80s-early 90s
  • 1 unopened box of Pinnacle Gold golf balls
  • his worn leather checkbook with pictures
  • 3 combs 
  • his wallet
  • a few snapshots
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!

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!

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. 

Shelley - from very young to teenage. 

Andrew - most baby pictures made of Drew included his sister! Such a handsome young man he became. 

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. 

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. 

"Take care of your memories for you cannot relive them. "  Bob Dylan

Sunday, March 3, 2013

Praise and Thanksgiving

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! 

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.
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!

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.
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. 

Wednesday, February 27, 2013

The Roller Coaster Continues

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! 

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.

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.

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.

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. 

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. 

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.

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.

This photo was taken on Valentine's Day just 13 days ago.  His eyes were brighter, and his smile was wonderful.

The video was taken this evening. He's not with me.
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.

Monday, January 28, 2013

The Big D Strikes Too Often

Since my last post on the ninth, almost twenty days have passed, and during that time, our family has been busy. On the 15th, I had my second hearing with Medicaid. Today I got the response, and the words that struck me were something along the lines of the decisions made by the Medicaid case managers were incorrect.  Basically, some errors were made resulting in a delayed qualification for Billy to receive Medicaid. Their decision was not reversed by the hearing officer, but they are to reconsider the medical expenses I had for Billy up until he was qualified.  I'll keep you updated as I learn more.  The wheels turn slowly.

On the 16th, I drove my parents to Methodist Hospital in Dallas at 5 a.m.  Mom went into surgery to remove a cancerous tumor at 7:30, and the surgeons told us to expect that it would take 4 1/2 to 5 hours to complete the surgery. We heard from the nurse in the surgery at 9a.m., 11:30a.m., and again at 2:00. The main surgeon came to see us in the waiting room at 5:30p.m., and he looked tired. As he sat down, he said they had known this would be a complicated surgery, but until they got into Mom's belly, they really didn't know how complicated.  He described the tumor as about the size of an orange, superglued around her right ureter. They were determined to get it out in one piece, and they did. In doing so, they destroyed some blood vessels and veins and a  large portion of the ureter, but that's where the vascular surgeon and urologist came in and tidied up the veins and rebuilt the ureter. Neither were simple, and she remains in the hospital tonight and hopes to move to a rehab center on Wednesday. However difficult this has been, Mom is cancer-free! Praise be to God and His guidance of surgeon's hands.

The surgeons had been planning this surgery for a few months, and had practiced different scenarios. What a tremendous team!

During Mom's surgery and stay in the hospital, we (my sister, brother-in-law, sister-in-law, nephews, daughter, son-in-law, and I) have cared for my dad. Dad has Lewybody Disease that comes with dementia, and he should not be alone for long periods of time. Mom hired a caregiver to stay with him during the day, but we have taken turns driving Dad to and from the hospital and spending the night with him. My dad has always been a talker, and he has a vast vocabulary. He's well read, loved to do crossword puzzles, and holds a Master's Degree, so it really causes him disdain when he cannot locate a word he is searching for.  The drive to Dallas is an average of 45 minutes give or take a quarter of an hour. That's a long time for Dad to talk, and as dementia does, he sometimes makes little sense, but he certainly gets his point across in some areas. He is incredibly proud of his children and his grandchildren. He adores his wife, and he feels strongly that he is still a good driver!  None of us are willing to allow him to prove the driving part.

I have to share with you just how special my dad is to me, and I know that he is no less special to my sister or to my brother who passed almost 5 years ago.  We just came to be Dad's kids in different ways. Mom and Dad dated when my mom was a student at Polytechnic High School in Fort Worth and Dad was a student at TCU. Mom's aunt set them up on a blind date, and they hit it off nicely. Mom was in a hurry to grow up and get married, and Dad was not. They went their separate ways, and Mom met a charming scoundrel and married him. He was my biological father, and I have no recollection of him. I don't know many details because Mom does not like talking about it, but when I was about 7 months old, Mom left with me and we went into hiding - living with different relatives for short times. We couldn't stay very long with immediate family because he kept finding us and causing problems for Mom. We moved to Midland for a while and lived with one of Mom's cousins. Eventually, we moved to Abilene to live with Mom's aunt and uncle, and after a time Mom got a secretarial job and a small apartment within walking distance of a bus stop and the Highland Church of Christ. That's when she and Dad got back together. Dad's brother, my Uncle Alvin, rented a small apartment from Mom's aunt in Fort Worth, and he had helped move Mom to Abilene. He contacted Dad and mentioned that Alyce was divorced with a baby and just happened to live in Abilene. The rest is a sweet love story with the usual bumps in the road.

Mom and Dad married on December 18th just before I turned two years old on January 23rd.  Their honeymoon was certainly less than glamorous, but they did have a sitter for that. I stayed with my Aunt Tricia and Uncle Bob, and they still talk about how much I cried while I was away from my mom and dad. My earliest memories begin when I was about three, and I never remember a time that Dad wasn't my dad. He has never mentioned to me that I am not his biological kid, and with his dementia, he probably doesn't remember it.

The word thankful doesn't begin to describe how I feel about Dad. He has been a huge influence on who I am today, and I can't imagine a dad who could love me more. He taught me to ride a bike, to believe in myself, to drive a car and change a tire, and he modeled a healthy marriage with my mom. He was also pretty strict, did not give me my way always, and he remains a very stubborn man. In a time when I was growing up in a very conservative legalistic church, he taught me not to believe something just because a preacher said it. Study the Bible myself, and see if I agree.  My heart breaks that he now has dementia, but I am honored to be able to care for him like he always cared for me.

Dad watched Billy decline over several years. He cried when we talked about Billy's diagnosis, and little did we know that he would face the same ugly dementia. Several times over the last few weeks, Dad has asked me if I plan to finish my degree. I always say, "Well, I've gone as far as I plan to with my degree, Dad.  I have my master's degree, and I don't feel like I have the energy to work on my doctorate." 

His reply is always surprise and pride. "Well, I didn't know that. I'm so proud of you."  What a privilege to be chosen by such a man.

Wednesday, January 9, 2013

The Bed is Gone

There was a time in my life when my stomach would sink walking into a nursing home. My visits to the "old folks home" as a child were limited. My Sunday school teacher in fifth grade took us to visit residents, and I was terribly uncomfortable while there.  The smell bothered me, the bony fingers that wanted to touch us frightened me. None of my grandparents were in a facility before they passed, so most of my experiences were visits with Billy's mom, Aleta Asher. She was in a two different facilities through the duration of her disease, and I grew a bit more comfortable in that setting but not completely. I didn't visit often enough to grow accustomed to the strangeness of the behaviors.

As we approach a full year with Billy living in Lexington Place, I can say I'm okay there. The residents in the memory unit know me. I can handle the noises, the blank stares, the mumbled utterances, the random cursing, the occasional choking and the lack of respect for personal space. What I will never grow accustomed to is the death that comes with this disease. The unit has 9 rooms - 18 beds. I know the residents and their rooms. As I walk down the hall, I can see them if they are in their beds, and today I saw a bed missing. The name was removed, and I couldn't place who had been there. I asked the nurse whose bed was gone, and he told me it was Betty.

"When?" I asked, and Raymond answered, "Today.  It was so hard to see."

In truth it's been difficult to watch Betty in the last few months. She's been terribly sad since she could no longer walk. Those of you who have followed me a while may remember that I referred to her as walking Betty. She walked up and down the hall for hours a day. She was a beautiful statuesque lady with porcelain skin and thick silver hair. I heard her speak a handful of times, but I heard her scream and saw her cry many more times as the disease ravaged her ability to walk, her desire to eat, and finally her life.  

I hate Alzheimer's Disease. It's a disease where you watch your loved one die going backwards from adulthood to adolescent to childhood and back to being a baby who needs to be fed and bathed and diapered.  I hope it's a long while before I notice that another bed is gone.