Recently, I reneged on my commitment to co-teach a course at the Servant Leadership School, the “street seminary” of our Church of the Saviour community. I’ve taught there regularly for years. The content of one particular course that I consider important has, however, been difficult for me to present, frustrating, and anxiety provoking. A friend had suggested we teach it together, and I thought he might well make up for my deficiencies. But, although the first class is still four weeks away, I’m already fearful, realizing that I won't be able to pull together even the part of the course I’d agreed to take on without feeling anxious for the next three months of my life.
Ordinarily the thought of reneging on such a commitment would have provoked guilt and embarrassment. But I’m different now. Given the amount of clear-thinking time I have left, I’m not willing to spend so much of it in needless anxiety. In addition, my limitations mean I’m less likely to teach it well. My friend, I’m sure, is disappointed; I am, too. But both of us know I’m limited now.
This disease is always thought of as a tragedy. And I suppose it is, especially for those who have to observe and even more so for caregivers. But I wonder how much the Alzheimer’s patients themselves suffer. At my stage in the disease, of course, it’s all just speculation, but so far the disabilities—confusion, uncertainty around teaching, and especially loss of memory—aren’t causing real suffering. I’m sometimes frustrated, of course, until I recognize that it’s the disease that’s caused me to forget such-and-such. But then I just let it go and the frustration dissolves. Perhaps the apathy that accompanies Alzheimer’s blunts my motivation to care so much. Regardless, I don’t compare my current incapacity to my former capacity and, to the extent that I don’t compare, I don't suffer.
So hop ahead several months or several years and you see me sitting on a bench just staring or responding inappropriately to your attempts to talk with me. Certainly it would be painful for you, especially if you knew me well, but would it be painful for me? It seems quite possible that the very losses I will experience will make me cognitively less capable of recognizing them or caring about them. (See “Out of the Frying Pan Into the Freezer.)
For now, it’s all just speculation. I hope I’ll still be able to communicate some of the discoveries as the lights go out.
Happy Easter Dr. Hilfiker:ReplyDelete
I just read about your blog in a Washington Post feature that appeared on Facebook.
I have some thought about the question that you posed in this entry, as to whether Alzheimer's patients themselves suffer with decline.
My father, who died in 2005 of complications from Alzheimer's, had been a very successful businessman and attorney. He was valedictorian of his high school class, college class and his law school class.
Throughout his life - at least from my perspective - he had a hard time expressing his feelings. He also grappled with depression.
He was upset in the beginning of his disease - at one point, saying that he wished to kill himself. That was the hardest point for him, but as time went on (and the family removed the gun in the house) he moved through his suicidal impulses. in time, my father became much more emotionally expressive - and even much more happy. He began to take pleasure in a life of the senses, rather than the intellect. He enjoyed nature, birthdays, grandchildren, singing, classical music and dining well. His disease was a tragedy for those around him, but NOT FOR HIM. At the very end, he seemed warm and happy. We were desperately sad, especially those of us who constantly recalled Dad's many achievements. We were all self-centered in our thinking - Dad was not unhappy; in fact, it was almost like his true self, unhampered by depression or anxiety, was able finally to be free.
I hope my dad's experience is interesting to you, and perhaps partly answers your question. - Regards, Katherine Lipkin
Thank you very much Katherine. I have heard many stories like your father's although you express it very fully. Although my impairment is still relatively mild, I too have become more emotionally expressive and happy. I am taking pleasure in little things. I can at least imagine your father's experience. As I've said many times, this is about the happiest time in my life.Delete
This isn't to deny the tragedy it usually is for the family (I hope to have my family write "guest posts" from time to time about their experiences.) But it definitely is not a tragedy for all patients. I wonder if there's anything I can do now to
My dad also has what is certainly Alzheimer's (early on-set) and had been a very accomplished person before. What was sad what that he received his diagnosis at 54, a year after he retired early after a very successful career so he and my mom could travel and do fun things. The rest hasn't been AS bad as other people suspect it is. I am sure it is very hard on my mom but this disease has brought us all very close--caring very much and enjoying life together. That was 18 years ago. Can you believe it??? We have been very fortunate--both to have him this long and to APPRECIATE it. We have actually had lots of laughs and special quirks which are just now a part of our family and our experience with my Dad. He had always been a happy, easygoing person and like you have said, I feel like most, if not all of this time of his life, has been very happy. My dad's eyes still light up every time you mention a grandkid's name and he tells me about 5 times a day (probably because he has forgotten he already told me) that he loves me. He tells me all the time how lucky he is and he absolutely believes he is....And I have to say, we have been so lucky too. I know people wouldn't expect an Alzheimer's family to say that but we have. It sounds like you have a great perspective and I wish you the very best for your family and your future.ReplyDelete
Your comment, like Katherine's above, is so important and encouraging. What is interesting to me is that, so far, I haven't had one comment or email describing how awful Alzheimer's was for the patient himself. But I've had many comments like yours in which parts of life were BETTER than they had been. I'm sure there are other counter stories, but I am beginning to wonder if our public fear of the disease is a projection of how we (as a non-demented person) would experience Alzheimer's while the actual patient may have a totally different experience. Perhaps there's nothing to be afraid of. (To be clear, I'm talking about the patient; caregivers can suffer greatly.) Thanks for writing.Delete