I’m spending a week in Napa with my daughter Laurel and her family. Last evening I helped Laurel put together fifteen 100-page training manuals for her work. The job was fairly simple: punch three holes in each of the pages, insert tabbed dividers between the pages to create ten different labeled sections, and put them all into a three-ring folder.
As I worked, I found myself increasingly confused, forgetting where I was in the process, combining two sections without a divider, or removing a section divider from one manual and inserting it into the other, duplicate. Then once I would notice the mistake, it took me forever to figure out what I’d done and correct it. But eventually I could figure it out.
I’m used to this level of impairment by now, so it wasn’t terribly frustrating. Nevertheless, I was grateful for Laurel’s response: She noticed my confusion and said something about the task being more difficult than she’d expected. She wasn’t pretending my confusion was completely normal (“the old I-know-just-what-you-mean-that’s-happening-to-me-too trick”), yet she was comforting me by acknowledging that I didn’t have to be completely demented to be having some trouble. I was happy that we’d developed a comfort with acknowledging my cognitive impairment.
I’m reading Lisa Snyder’s Speaking Our Minds, a series of fascinating interviews with people at various levels cognitive impairment. One of her interviewees with relatively mild dementia says, “I will not made to feel inferior by Alzheimer’s.” My emotional reaction, of course, was to make it all about me: “Who are you kidding? Of course, I’m going to feel inferior: my mind is going while everyone else’s is not.” But a little reflection changed my mind. Obviously, my skills and abilities will become inferior to other people’s, but that doesn’t have to make me feel inferior as a person.
I used to be a competitive cross-country ski racer. Now, due to a numbness in my feet (unrelated to Alzheimer’s), I can hardly stand on skis. I’m clearly an inferior ski racer, yet, given my condition, no one would think it reflected on my inherent worth as a person. The same would be true for cancer or almost any other non-mental chronic disease.
But it’s different with Alzheimer’s or any other cognitive impairment (just ask any mentally retarded person). There’s a temptation to see cognitively impaired people as less worthwhile, to feel comfortable avoiding or ignoring them.
So far, I’m actually feeling better about my worth than before my disease. I have the best of both worlds: My symptoms are hardly noticeable to others, yet I get lots of credit from other people who think I’m handling it so well emotionally.
Will that change as I lose my capacity to drive and, thus, my independence; as I lose my capacity to speak cogently about my illness; as I can’t really take part in the normal life of the community?
Probably … at least to some degree. On the one hand, so much of my image of myself has been wrapped up in my sense of intellectual superiority. What will happen to my image as that disappears?
On the other hand, I have a solid confidence in my self-worth. I have a brain disease, and intellectual loss is simply what happens. It doesn’t reflect on self-worth any more than my incapacity as a cross-country skier. Will that be one of the things I can remember that as the lights go out?
And, if I can’t remember my self-worth, won’t my increased ability to express love and affection (that’s been generated by this disease) buoyed by the love and support of my family and community sustain it? No one, of course, can predict much in this unpredictable disease, but I have some confidence that they will ameliorate my sense of inferiority. It’s one of those things I’m curious about.
If there is any consolation in AD, its the fact that in 20 years of caring for these patients, I have never once heard one of them say, "I used to be smarter." Or "I used to remember these things." It is what it is, and they are more into the day to day events, and when is dinner, and what is for dessert, etc. And bingo! Perhaps with cognitive decline one forgets what they forgot. Sitting and talking with someone, they will talk about their youth, their family, the year of 1925 (the year the rabbits all froze in the winter it was so cold), the depression, etc. They still love to chat. But these are based on facts, things that really happened. Just as you have done some wonderful things to help this world be a little bit better. You will probably always be able to recall these events. But at some point, the emotion of loss will have left you.ReplyDelete
Just as I told you about the ex DON of a nursing home who was a patient, and offered to help me with my tasks. She still talked cognitively about many things. It made her who she was in our little world. but she never once said she wishes she could remember it. Because the important parts she did remember were enough. I don't think I'm saying this right. But it seems that the memories of long ago are enough. They don't miss what they don't remember. And they are proud of the things they do remember, families, children, jobs, etc. I think this selective memory is a blessing. Ask someone about how they survived the depression, and you will hear the whole story.
I agree Lee An...it does seem that is what my parents were like. But there was a stage prior to the "forgetting what they forgot" stage and that was anger and combativeness. My normally docile and calm mother became very angry when we started doing her financial transactions. She had never cursed at me in her life but she did use some salty language during this period.ReplyDelete
It was a relief at first when she became silent, but then I began to wish to hear anything at all from her. She was basically mute for the last few years. That's why it meant so much to me when, in her last few days of life, she actually told me she loved me. I related that story before but it meant so much to me that I had to repeat it.