I began this post on March 18th, and then life got incredibly busy, and I got incredibly overwhelmed with everything. My heart is full, and I must write.
3-18-2014
It's time for me to face the truth. Billy is getting worse, and he's not okay. I've ignored the truth for a while because it's just too hard to face, but sometimes truth slaps you in the face. I have been blessed for more than two years in being able to take him with me on Saturday evenings, and that ended about two months ago. My Pollyanna side keeps thinking that when it gets warmer and stays light for longer, I can take him with me again as though warmer temperatures and lighter skies will help him know how to get into the car again.
For a while I would take him out of the memory unit and just walk the halls of the nursing home for a change of scenery. He doesn't want to leave that secure area now. The staff told me he gets upset when they come get him to weigh him each week.
I usually arrive at the NH between 4:30 and 5:00 to feed Billy supper. The routine for the residents is to gather them all into the dining area of the unit beginning around 4:15. It takes a while to get everyone changed and cleaned up for dinner. Billy is nearly always sitting at the table watching TV when I get there, but today was different. I got there around 4:35, and Billy was still fast asleep. The evening staff had come on duty at 2:00, and he was already asleep, so they didn't know how long he had been in bed. It takes two staff members to get him up and changed now because he struggles with balance. After getting him ready for dinner, the aides got on either side of him and walked/drug him to the dining area. The scenario reminded me of two parents trying to walk their toddler while his feet go in uncontrolled directions, but he's a 57 year old man.
4-2-2014
The first few weeks of March, Billy had several falls hitting his head during most of them. Several x-rays were done with no fractures noted, but the radiologist recommended a CT scan. The physician's assistant who sees residents each Monday at the NH noticed a significant decline in Billy's mobility and balance. Many of the big changes in Billy have taken place gradually, but this was rather sudden. He's been doing the slow shuffle for at least a year now, but he could stand on his own and walk. From what I understand he is a little more able to balance in the mornings, but as the day wears on, he cannot get out of bed alone, and he cannot stand. Two people get him up and change him, and then they place him in a wheel chair.
Last Friday when I got there, he was in the shower. Our favorite aide, Lameka, was showering him. She rarely works in the memory unit anymore, so she had not seen Billy in a few weeks. I waited on her to get him dressed, and she came out of the shower to get help standing him up. She looked at me and said, "I had no idea he couldn't get up or stand anymore!" I told her the change had been rather sudden to us. The good news is that he still seems happy. He smiles often and enjoys our visits.
I've been debating the whole CT scan event. He has to be taken to a hospital to have it done, and I can no longer transport him, so the NH could take care of that. When the doctor reviewed the orders from the PA, he questioned Billy's ability to lie still during the test. I asked the purpose of the scan, and it seems that they are looking for a cause of this big decline. They've done the usual tests - no UTI and no imbalance due to meds. The scan would show any masses, any strokes, or anything more abnormal than the atrophy he has from the Alzheimer's Disease. The scan would also involve a large co-pay that would be difficult for me right now. I made the decision today that I will not consent to the test right now. If the test were to show something in addition to AD, what would I do? I have no desire to inflict pain or anxiety on Billy. Just the trip to the hospital would most likely cause him anxiety. If the scan were to show a mass, I would not choose any radical treatment for him. A stroke? What would be done for that? More meds most likely.
I've wondered if the medical professionals at the NH are just unfamiliar with early onset AD. I usually assume that new behaviors are just an indication of the progression of the disease. I appreciate the concern and the desire to know, but how would that change things? As I write this I hear myself sounding a bit like I don't care, and of course I care a great deal. I know that when Billy was still articulate, he made it clear how much he hated enduring all the tests and questions; and he would be more anxious and nervous than ever being taken to the hospital and being told to be still for 30 minutes which he would not understand.
Did I make the right decision? I feel okay about it, and I'm at peace. That may change tomorrow, and if it does, I am pretty certain we can have the scan done.
So there you have it....I'm so sad that I can't pick him up on Saturday afternoons and take him with me. In order to take him into the courtyard, he has to be put into a wheelchair, and that involves catching 2 aides who can assist. I'm hopeful that he can come home for Easter day using a transport system, but I'm unsure of that at this point. We trudge on.
Stinkin' Alzheimer's!
Thursday, April 3, 2014
Sunday, February 16, 2014
What Keeps Us Going....and what gets us down
I've mentioned before how difficult it is to get Billy in the car, and about three weeks ago, he got so frustrated that I decided to stop taking him away from the nursing home for a while. I will reassess when we return to Daylight Savings Time and the weather is warmer. Those two things may not help, but he gets more confused when it's dark, and the cold hasn't helped any of us. I'm aware that I probably get more from taking him with me than he does, but I know he enjoys being with family and seeing friends. Unfortunately, if I don't take him out, he won't see most of those folks. Going to the nursing home is difficult for people, and I was one of those people for a long time. I do not criticize anyone for not going because it's not overly pleasant, and Billy communicates very little. He does love seeing family and friends, though, and we can tell that by his smile and expressions. Sometimes he will say something that we don't recognize, but he tries to communicate.
Yesterday, he had a fall. He's fallen a few times before when he was trying to sit down and missed the chair, but this time was different. He was walking down the hall, and leaned over to pick up a "Wet Floor" sign. He lost his balance and hit the back of his head on the hand rail that runs down the hall. As he tried to get up he fell again, and hit his head on the floor. He has no fractures, and I assumed he would not. Billy has youth on his side where falls are concerned, but the fact that he lost his footing while doing something very simple signals another decline. He may not fall again for months, or he may begin falling often. Alzheimer's progression is not always predictable, but what I notice among the residents is that when falls become the norm, the resident ends up in a wheel chair. I am not ready for him to move to a more restricted mobility. Of course, I'm sure that my lack of readiness will keep it at bay!
Billy can do very little for himself at this point, and walking, albeit very slow, is one of his few independent activities. He needs help getting up, sitting down, eating, drinking, dressing, bathing, and toileting. The medical world calls these daily living activities. He is slim on independence with those activities.
So those things really get me down, but we have some wonderful glimpses of the old Billy that get us through and keep us going. One of the last times I took Billy to church with me, he was sitting between Shelley and me. He tires pretty easily, and we stand for quite a while at the beginning of our worship service. Shelley sat down with him, and when I glanced back at them, he was leaning toward Shelley like he wanted to tell her something. As she leaned toward him, he kissed her on her cheek. He will always love his girl, and such a small sweet gesture brought tears to her eyes. A week or so later, Shelley was helping get him in the car (the big challenge), and after she buckled him in, she kissed him and told him she loved him. He responded loud and clear with, "I love you." He doesn't say much at all anymore, and that was huge.
When I go see him in the evenings, and he realizes I am there, he gives me a huge smile. Once in a while, he even says some little something, and I'm thrilled. Sometimes I get there early enough that he is still in bed. I don't know if I will ever get accustomed to him being in bed so much of the afternoon, but when I go in his room, he is often already awake, but they have not gotten him up. I sit down beside him, and he grabs my hand.
The small things get us through. The smiles, the incoherent mutterings, the gentle kisses, and the touch. I will never take those for granted.
So, how do I answer the question...how is Billy? The best I can tell is that Billy is happy. Not knowing how far his disease has progressed is a good thing for Billy. When he knew where he was headed, he was frustrated and angry. He gets frustrated at times now, but typically, he's happy. His smile gets me through, and I often tell people he's okay...not good, but he's okay. I think that most people get it.
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 tocoax 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.
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
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.
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 do...it's not easy to see this person who had such a vibrant personality walk along like a stooped over elderly man, saying very little. When he speaks, he says just a few words, but he often gets his point across. I see Billy all the time, and it's hard, so I know when people haven't seen in him in a long time, it's tough on the heart. But it is so appreciated.
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.
Subscribe to:
Posts (Atom)

