For quite sometime I would post every few weeks or every month, and the progression of this insidious disease was fairly slow. Recently the progression seems to have increased rapidly like an avalanche that begins with a few falling rocks then picks up speed and crashes down. In my last post I wrote about not being able to take Billy with me anymore because he cannot get in and out of the car. Soon after that he had several falls, and his balance was unsteady. The decision was made that he needed to be in a wheelchair for his own safety. I'm all for his safety, but I hate that he has to sit all day because he loves to walk.
He doesn't seem to know that he can move the wheelchair on his own. At the moment, they are using a chair that belongs to the nursing home, but I've noticed a need for foot rests that he doesn't have. Occasionally he will lift his feet ever so slightly making pushing easier, but he usually resists a bit. Pulling the chair backwards makes it easier if one can walk well going backwards. I have enough trouble walking forward, so that presents a challenge for me. We make it work, though. Billy gets help from the aides, and they all love him.
As I was getting my head wrapped around the fact that Billy doesn't walk anymore, AD threw another rock at us. On April 14th, Billy had a grand mal seizure around 4:00 in the morning. Fortunately an aide was in his room changing his roommate and heard the noise. She got the the nurse right away, and the seizure lasted a little over 10 minutes. His oxygen level dropped significantly, but they were able to get him stabilized. I had heard of another Early Onset AD victim who had seizures, but I never knew of others. It doesn't seem that the staff at the nursing home has seen this with AD patients either. The PA saw him that day after the seizure, and she requested a neurologist consult. When I fed him dinner that night, he was exhausted and his lip drooped almost like a stroke victim. The strangest thing to me was that his voice sounded different - lower and gravelly.
Of course I began reading about AD and seizures. Today I went with him to a neurologist. I really liked the doctor, and he told me the same thing that I had read. Fewer than 10% of AD victims have seizures in the late stages of the disease, and there is some thought that it is more prevalent in Early Onset folks. Of course Billy is in that small percentage. Of all AD victims about 5% are early onset (under age 65). I wonder if 10% of that 5% have seizures or if that percentage is higher in this group. Billy has been on depakote (an anti-seizure drug) for almost 18 months because it helps with the behaviors related to AD. The doctor increased the dosage to try and prevent further seizures. I don't want him to be more "drugged" feeling and acting, but I certainly don't want him to have more seizures either. So there we have the Billy update.
Last Friday Mom, Leslie and I met with a chaplain and put Dad on Hospice. Dad is not a whole lot worse, but the staff felt that this would be better for him, and I agree. In one day, they got him a better wheelchair, and he has a few more people who visit him each week. That is so important in this journey -- human contact with people who are not suffering from dementia! Dad is so thin now; he weighs less than 140 pounds. He has some good days, and he has many not-so-good days. Mom hangs in there with him as much as possible, but she has her own battle with cancer. She is on maintenance chemo right now. She has a treatment each Tuesday (if her blood counts are high enough) for two weeks. She takes a break the third week. However sometimes during that third week, she has blood transfusions like she did today. That way she can be ready for more chemo next Tuesday - hopefully. After her next two rounds of chemo, she will have another scan to see how well the tumors are being held at bay. This is her life now. She's tired all the time, but she's here with us, and we all vote that it's worth it. But if the day comes when she says she's had enough, I think we will all understand that, too, but we are not ready.
In spite of the daily struggles we face, we are blessed in so many ways. A dear friend has moved in with us, and she is preparing meals and helping in all sorts of ways. We had our extended family at our house for Easter, and that was wonderful. I work with fabulous people every day, and that is a huge blessing. We are prayed for each day by so many, and we know that because life is bearable right now.
Wednesday, April 30, 2014
Thursday, April 3, 2014
The Big Decline Really Stinks
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!
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!
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