Our Alzheimers Journey – Part One
Caring for Steve with his Alzheimers disease was the hardest six years of my life. I was determined not to let it kill me, like it did my father, who took care of my mother with the disease.
Steve had six children, however, only two provided assistance and their time was very limited, but I could always count on them in emergencies. They coordinated with each other to stay with him a few times while I took a respite trip. Neither of them objected to any of my decisions regarding Steve’s care and they had nothing but praise for the way I cared for him.
Steve’s dementia was detected before the first obvious signs. The staff of the Institute for Dementia Research Prevention in Baton Rouge, Louisiana, noted Steve’s very early signs of dementia in their initial testing for the LaBrain study in 2012.
In 2014, the first obvious sign of his dementia was when he talked to me as if I were a stranger on our way home from a trip to Austin. Since I was warned of his risk for Alzheimers Disease, I replied as if he too, were a stranger, as I held back tears. The next sign was when Steve spent all day and part of the night preparing his boat for a fishing trip with a friend, a task he formerly handled with ease. In the morning his boat was nowhere near ready, so they went in his friend's boat. Steve, an avid fisherman, never went fishing again or seemed interested in doing so.
Another sign of dementia was the day he returned from the grocery store and exclaimed; I’ll never go to the grocery store again without you! It became obvious that I needed to figure out how I could keep him from driving with as little trauma as possible. After trying several unsuccessful strategies, I asked a mechanic how to disable the van such that Steve could not drive it, but I could enable it easily when necessary. The mechanic showed me which fuse to remove so it wouldn’t start and provided a couple of extra fuses with a cute little box for storage. One joy in our Alzheimers journey was discovering that others are eager to help a caregiver, they just need to know what to do. This trick meant I never had to traumatize Steve by taking away his keys. He retained his sense of independence; his keys in his pocket. A month or so later I removed the key fob and he didn’t miss it. When he tried to start the van unsuccessfully, I reassured him his son would come tomorrow to help him figure it out. Once he turned the starter over and over so many times, it ran the battery down. Yes, I had to recharge the battery, but I avoided the stress of taking away his keys. Avoiding this trauma made it easier to care for him and prevented anger and resentment.
Periodic incidents of tenderness kept me going. Unexpectedly, he would tell me that he would do anything for me. Several times Steve would comment to me or other caregivers, You work too hard. Come and sit down. He would often thank me or anyone else that helped him. Sometimes he would thank his caregivers at the end of a struggle to get him cleaned up.
Despite my efforts to rid the house of beer, he once found a beer that I’d missed and drank it. As with many people with Alzheimers disease, alcohol intensifies emotions. Steve got so mad at me that he pulled the thermostat off the wall. Thank goodness for Steve’s capable son-in-law who immediately came to the rescue and replaced it.
As Steve’s disease progressed, with encouragement from the counselor at Alzheimer Services, I enrolled Steve in Charlie’s Place, a daytime respite program, for two days a week. That was one of the hardest things I had to do, just like the mothers who I observed as a Kindergarten Teacher, dropping off a child at school for the first time. Due to privacy rules, I was not permitted to go into the facility to observe his engagement in activities. For several months I cried each time I dropped him off. Each day I gave him a little note telling him what time I would pick him up and that I loved him. For a while he remembered the note was in his pocket, but later the staff had to remind him. The staff at Charlie’s Place kept clients busy all the time and were very good at coaxing Steve out of the car each time we arrived. Although I was retired, to ease Steve’s concerns about my leaving, I told him I had to go to work and I knew this was a safe place for him. Since he highly valued working to support oneself, he reluctantly accepted the explanation. I had been substitute teaching, so he had experienced me returning after a day of work. Most days at Charlie’s Place, Steve did well during the morning but he got very anxious about going home after lunch. The director of the center had a van just like Steve’s, so convincing him he should not get in it and drive home was extremely difficult. It became such a problem that I picked him up early for a while.
Another step in our journey was when the stress of caring for Steve threatened my own physical health. One day, an uncomfortable feeling in my chest, led me to the ER and a short hospital stay for a plethora of tests. I had been exercising three times a week for ten years, so I knew it couldn’t be my heart. The doctor explained my stress was affecting my digestive system and the pains were just gas. But it became clear that I needed more help caring for Steve. Fortunately, we had saved enough money to afford hiring in-home help. Nevertheless, it was challenging to determine how much I could spend without endangering my long-term ability to take care of myself.
Periodically Steve had episodes where he insisted that he needed to go to the doctor. He was desperate and pleaded with me to take him despite no apparent symptoms. First, I called the doctor, he talked to him, but it didn’t help. I tried explaining that we must have an appointment or that we could go tomorrow since the clinic was currently closed, however, he persisted. One night I drove him to the clinic to show him no one was there. Pleading continued. I had my friend pretend she was a doctor, she had a PhD in psychology, so we called her. Steve did not buy it. I was desperate. The Alzheimer’s Association 24 Hour Hotline was also helpful during one of these episodes. Another time I was so exasperated, we got in the car and I just started driving. I didn’t know where we were going. We passed Walgreens and he exclaimed, That’s what I need! So, we went in and bought some Tylenol, although we already had some. We got back in the car and went home. I scheduled an appointment with a neurologist. Steve finally got to go to the doctor, however, he was reluctant to accept her role given she was a woman and Asian. He continued to demand; I’ve got to go to the doctor! even in her presence. The doctor prescribed anti-anxiety medication that would encourage him to sleep. He was very groggy the next couple of days, but those symptoms mostly subsided as he adjusted to the medicine. It is an agonizing trade off; the agitated behavior or lethargy. The medicine did make it easy for him to sleep, so I was able to get much needed rest. The initial dose was high, but as I look back on it, the higher dose enabled me to educate myself and get my own stress relief in place, then reduce the dosage when I could better manage his behavior.