Professionals agree there is currently no treatment that will cure Alzheimer’s because its cause is not known. During the course of our journey, doctors have given us the option of prescription drugs to “possibly help” treat the disease. Many others have suggested remedies, and various testimonials and ads promoting alternative treatments have popped up. It can be overwhelming, and we’ve spent our fair share of time doing what I call, chasing rainbows. Coconut oil, vitamins, and other such things did nothing for Bill.
When he was diagnosed, our question to doctors was: are there any drugs that can slow it down? There are some that, “Might, or might not, have any effect,” the gerontologist said. We chose to try them.
“Aricept,” I was told, “won’t slow it down, but it will let him use everything that he has left.” It did seem to help Bill focus on tasks better than he had been able to after the disease hit. However, it also caused him to have nightmares, terrible muscle cramps, a continually runny nose, and other side effects. When we reported these, his prescription was changed to Ebixa (Memantine).
As his condition continued its downhill course, I couldn’t know whether the drug was really doing anything to help, but he continued to take it because we wouldn’t be able to tell if it was helping unless he stopped taking it. After almost 8 years, I decided to stop it (without his knowledge so the results would be in the realm of ‘placebo’ trials), to try and determine what, if any, effect it was having. Within a few weeks, I noticed Bill was more confused when he woke up. He needed directions to the ensuite bathroom, more help with dressing. Other things he had done himself, or with minimal supervision, now required more involvement from me. He also followed me around the house more closely, as if he was afraid I would disappear if he didn’t keep me in sight. His search for words to describe his needs, or an event, also became more pronounced. So, after three months off it, I put Ebixa back on his daily menu. And after a week or so noticed his descriptive powers improve, his thoughts become clearer than they were, and he could do more things independently again. That said, I don’t know whether it’s the drug that made the difference.
Alzheimer’s is an up and down, winding path, not a straight line, and at various stages in the disease patients do have periods of more confusion, followed by or interspersed with periods of greater cohesion. No one knows why. Added to that are expectations. It’s possible my interactions with him changed in ways I didn’t realize during his time off the drug, and that could have affected him in ways I don’t understand. Or it could have affected my perceptions of what was actually going on. When it comes to ‘scientific testing’, tests like the one I conducted are highly flawed, and I don’t recommend it.
What is known is that everyone’s experience with taking prescription drugs to help cope with the disease is different, and what does seem to work for everyone when it comes to maintaining, or increasing, health are the things we’ve all heard about most of our lives—good food, regular exercise, and social involvement. Laughter also helps. In other words, the same things every human requires to establish and maintain a full and healthy life will also help Alzheimer’s patients (and caregivers).
Fortunately, Bill always was, and still is, a social guy who enjoys a range of activities. And when he loses the ability to do something he likes to do, we work together to find another activity he can do. It does get harder as the disease progresses, but he’s always game to try, and often things work out better than I expect they will. Such as, deciding to take advantage of the Adult Daycare Program, which he now attends one day a week.
I was nervous about signing him up for this, believing that he still had significantly more function than many who attend the program, and that he would not enjoy the activities there. My concerns were immediately dispelled. He fully appreciates the warm and friendly staff, finds people there he can talk to, and though every activity isn’t his cup of tea, he enjoys many others. He often comes home with a tale about something or other they’ve done that he got a special kick out of.
In addition, I am mindful every human needs to feel they are making a valuable contribution to life in order to feel they are living a full life. So, I keep giving Bill tasks to do, even if I have to later finish or redo them. (More often, I find it more beneficial for both of us to just accept the job he does, whatever the level of competence he does it with). As well, I try to recognize changes that are occurring, and create new, helpful strategies for dealing with them.