When you reach retirement age, if your parents are alive, the chances are good that they’re at least in their early eighties if not older. My mom is 91. She has had Alzheimer’s for at least six years. While she was living independently she started showing symptoms, though not worrisome ones, such as repeating the same stories every time I saw her. Over a year’s period the signs got worse: forgetting her key, losing her sense of judgment as illustrated by opening the front door of her apartment building to anyone who knocked or just stood there looking in (which the landlady suspected had led to several robberies in the building), and believing that the dozens of letters from charities she received every week were personal letters directed only to her with a bill she had to pay. When I went to visit her I always brought a paper bag and as soon as she turned her back I scooped all the junk mail around the apartment into my bag for recycling at home. The junk mail caused her a great deal of anxiety, because she felt the pressure to respond to the messages included in every letter: “Without your help, Mrs. ___, our boys in uniform like Joe (pictured here swathed in bandages), will suffer a lingering, painful death that you could prevent with a generous donation. I know that, as a kind and generous person, you wouldn’t want Joe and others just like him to think that you don’t care about the torturous lives they will continue to lead unless you come to the rescue.” (Only a slight exaggeration.)
I knew that it would be impossible to move my mom until the situation became a crisis. Within two years after my first observation of symptoms it had: suddenly she could not navigate around her apartment without the aid of her walls. Luckily I had professional help in finding her a good living situation and she has lived contentedly in an adult family home ever since.
Work friends used to ask me how I could bear to see my mom in this condition. One colleague used to say, “I had to watch my mom die twice, once when she was diagnosed with Alzheimer’s and once when she passed away.” I, however, tell friends that it’s not so bad, or at least that it could be worse. After all this time, she still understands that there is a connection between us, though I’m not always her daughter. Sometimes I’m her mother and other times her sister. (And the 80-lb. Chinese man who sat next to her in front of the TV for years was occasionally my father.) She still laughs, engages with others, and chirps away about subjects I can only imagine, since her words do not make sense. However, she has shown that she is still capable of expressing herself very clearly when the situation demands it, as she did recently when she looked up at her caregivers’ teenage son and said, “Now there’s one handsome young man.” And a few days ago she said to me, “I like men.”
I know she can’t keep this up forever and that at some point she will probably stop eating. But for now, I can still enjoy her, feel like she’s still with me, and be grateful that she is receiving loving care.
Like everyone whose parent has suffered with this dreadful disease, I try to avoid asking myself the big question of what my mind will be like when I am her age. Since this is a question that none of us can answer, and even if we knew the answer ahead of time the latest research I read says there is nothing we can do to prevent it, so I usually don’t bring the thought to the forefront. Maybe I just forget to think about it or worse, maybe I mention it all the time. Have I told you this before?
I love the last line!! I’m glad you talked about the fear that someday “I’ll end up like mom.” I find myself having that thought every time I forget someone’s name (although I was forgetting peoples’ names when I was 20), and when I arrive in the kitchen without a clue as to why I went in there. I just had my “welcome to Medicare” exam and the doctor basically repeated the results of all that research: There’s not much that can be done to stop dimentia or Alzheimers. He did say that the onset can be modified, through those old boring recipes we’ve heard our entire lives: diet and exercise. However, he did say one interesting thing: over the past twenty years, the incidence of dimentia has been reduced approximately 20% so, he concluded, “Something we’re doing is working.” Probably the reduction in cigarette smoking, but who knows??
Ann
Good observations. The evidence from the latest studies really is not good. I have watched a number of close friends and relatives suffer through this disability. It is hard for me to see that any real quality of life exists for those with the advanced stages of dementia.
The August 2, New Yorker has an excellent article dealing with the reality that we can keep people breathing longer than we can keep them “living.” It is worth reading.