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.