My wife was “asked” to retire in 2007, at 52 years old. She was a civil litigation attorney, working of counsel for our good friend after resigning her partnership in another firm. Looking back, many of her problems with the previous firm were probably because of her illness.
What followed were 10 years of steadily decreasing cognitive ability, personality change, physical and mental health issues. We have no children, and she has no immediate family, so we were on our own. At first, she could cover her symptoms and seem completely normal to friends and relatives who didn’t see her often. Some thought I was being mean and hurtful to her, making up stories or just making too much of it. We had diagnoses of Parkinsons, Alzheimer’s, Cerebellar Spinal Ataxia, Essential Tremor with Mild Cognitive Impairment, and more. Each Neurologist who saw her aid that the previous ones were wrong. Every time she had an MRI or Catscan, or participated in a study, it seemed to eliminate a cause while the symptoms got worse. It was a few years before one of them diagnosed Dementia. I know I am mixing symptoms and diseases in my narrative, but at the time we were just looking for answers and a name to call whatever was going on. When I retired in 2017, we still had no definitive diagnosis. That came in 2020 as Alzheimer’s from the neurologist who ran some of the studies. He said that he had observed her over several years and that by observation he was diagnosing Alzheimer’s.
I was her 24/7 caregiver at home for 5-1/2 years. As she got worse, we went through hallucinations, delusions, paranoia, as well as severe memory loss and confusion. We went through some typical stuff, like wanting to visit people who are dead, to being convinced someone was trying to kill her. Eventually, she was incontinent, wandered, and needed help with all activities of daily living. It was no longer possible for me to bring her on errands, go out to lunch, or any other activities outside the house. She didn’t know me anymore, but seemed to know we were together. I had hired caregivers 6-8 hours per week, but she didn’t like any of them, and I found that I worried about her all the time I was out of the house. The last year she was at home was so terrible that I finally made up my mind that she needed more than I could give. I had been researching MCFs for several months, knowing that a change was inevitable. I had been putting off minor surgery, so I got that scheduled and arranged for my wife to have respite stay at my choice of MCF. I figured if it worked out, she could stay there after I recovered from my surgery. She went in on September 9, 2021, and it seemed to work for both of us, so I made it permanent.
The next several months were almost as hard as the previous year: ER visits, medication changes, steady weight loss, falling, severe anxiety, seizures, more med changes, etc. It seemed like there was a crisis every week or two. The only good thing was that when things got bad, I could usually go home and let someone else handle it. After several months, things started to settle, and I was able to relax a little. Trying to get back to some semblance of a normal life, I scheduled two out of state trips this last summer. My wife’s behaviors seemed to be stable, and there had been no medical emergencies or medication changes in several weeks. The first trip went fine, I had a great time, and when I got back there had been no emergencies or big changes in my wife’s condition. The only thing was continued weight loss. I decided to go ahead with my second trip.
At the end of August while out of state, I got a call that she was dying. I drove back and spent the next 3 days in her room until she was gone. Her death was not unexpected, but still very hard, of course. It’s been over two months, and I am trying to get my life back in order. On this forum, I learned this is “Stage 8” of this terrible disease. I have a feeling that it will last as long as all the other stages put together.
Thanks for listening.
What followed were 10 years of steadily decreasing cognitive ability, personality change, physical and mental health issues. We have no children, and she has no immediate family, so we were on our own. At first, she could cover her symptoms and seem completely normal to friends and relatives who didn’t see her often. Some thought I was being mean and hurtful to her, making up stories or just making too much of it. We had diagnoses of Parkinsons, Alzheimer’s, Cerebellar Spinal Ataxia, Essential Tremor with Mild Cognitive Impairment, and more. Each Neurologist who saw her aid that the previous ones were wrong. Every time she had an MRI or Catscan, or participated in a study, it seemed to eliminate a cause while the symptoms got worse. It was a few years before one of them diagnosed Dementia. I know I am mixing symptoms and diseases in my narrative, but at the time we were just looking for answers and a name to call whatever was going on. When I retired in 2017, we still had no definitive diagnosis. That came in 2020 as Alzheimer’s from the neurologist who ran some of the studies. He said that he had observed her over several years and that by observation he was diagnosing Alzheimer’s.
I was her 24/7 caregiver at home for 5-1/2 years. As she got worse, we went through hallucinations, delusions, paranoia, as well as severe memory loss and confusion. We went through some typical stuff, like wanting to visit people who are dead, to being convinced someone was trying to kill her. Eventually, she was incontinent, wandered, and needed help with all activities of daily living. It was no longer possible for me to bring her on errands, go out to lunch, or any other activities outside the house. She didn’t know me anymore, but seemed to know we were together. I had hired caregivers 6-8 hours per week, but she didn’t like any of them, and I found that I worried about her all the time I was out of the house. The last year she was at home was so terrible that I finally made up my mind that she needed more than I could give. I had been researching MCFs for several months, knowing that a change was inevitable. I had been putting off minor surgery, so I got that scheduled and arranged for my wife to have respite stay at my choice of MCF. I figured if it worked out, she could stay there after I recovered from my surgery. She went in on September 9, 2021, and it seemed to work for both of us, so I made it permanent.
The next several months were almost as hard as the previous year: ER visits, medication changes, steady weight loss, falling, severe anxiety, seizures, more med changes, etc. It seemed like there was a crisis every week or two. The only good thing was that when things got bad, I could usually go home and let someone else handle it. After several months, things started to settle, and I was able to relax a little. Trying to get back to some semblance of a normal life, I scheduled two out of state trips this last summer. My wife’s behaviors seemed to be stable, and there had been no medical emergencies or medication changes in several weeks. The first trip went fine, I had a great time, and when I got back there had been no emergencies or big changes in my wife’s condition. The only thing was continued weight loss. I decided to go ahead with my second trip.
At the end of August while out of state, I got a call that she was dying. I drove back and spent the next 3 days in her room until she was gone. Her death was not unexpected, but still very hard, of course. It’s been over two months, and I am trying to get my life back in order. On this forum, I learned this is “Stage 8” of this terrible disease. I have a feeling that it will last as long as all the other stages put together.
Thanks for listening.
