This past Memorial Day, our faith community spent the weekend at a camp in rural Pennsylvania. It was just a time of play with virtually no program: unscheduled hiking, laying in the sun, watching a movie, playing board games, swimming (in pretty cold water) and so on. What I noticed during the weekend was how seldom my cognitive impairment was even an issue. I still refer to it, usually obliquely, when I get a little confused or lose yet one more thing, but I was surprised and pleased over the weekend to notice that my community is now quite comfortable with my diagnosis. There’s no need to belabor it.
The progression of my Alzheimer’s has been slow. Although I’ve certainly noticed some worsening over the eight months since my diagnosis, it hasn’t even reached the point where other people notice unless they’re looking for it. The reality is gradually settling in for me that I have a lot of life left that will not be significantly impaired by disease.
The first months after my diagnosis, the emotional impact of having Alzheimer’s disease was so powerful for me that it became the primary focus of my life. It tended to overwhelm other parts of me and became almost my identity. I suspect that period of identifying myself as an Alzheimer’s patient was important to me in order to accept my diagnosis, and the powerful emotional responses of family and friends seemed to encourage that focus, so I don’t regret it. Once I became public with this blog and other media coverage (among which were an article in the Washington Post and a segment on the CBS Morning Show), my role as a professional Alzheimer’s patient and informal spokesperson for the disease further cemented my identity as a person with cognitive impairment, a special case deserving of special attention.
But as with diabetes or heart disease or even cancer, it’s not an identity; Alzheimer’s is one of those things that happens in real life.
It’s true that Alzheimer’s is a little different from other serious chronic diseases in that it’s still a taboo subject that needs to be brought out of the closet. Our cultural fear of the diagnosis makes it more difficult for family, friends and others to see it as normal, as not so different from any other ultimately fatal disease. But, of course, it is normal! If almost fifty percent of 85-year-olds have Alzheimer’s, then we’re not talking about something abnormal.
Over the weekend, my primary identity wasn’t an Alzheimer’s patient but a member of my community enjoying the countryside and each other. I then returned from the weekend to a comment on my post “Normal Aging or Alzheimer’s?” by a reader, a.b.w. “Beware of the trap of self-indulgence,” she wrote. It reminded me not to take myself and my illness too seriously, not to get caught up in a special identity. (That’s a little harder for me since I’ve taken on this vocational role in order to bring attention to the disease and its taboo. But the danger of self-indulgence is clear.)
It’s important, however, to acknowledge that having a name (a “label”) for my impairment (as compared to wondering what the hell is going on) has been comforting to me. It’s given me some sense of the future and allowed me to make necessary plans. Also, my “coming out” to friends and acquaintances has made it easier for them and me to get past my diagnosis. We hardly mentioned it this weekend.
Nevertheless, a.b.w.’s warning against self-indulgence is well put. For me that temptation comes in the form of allowing the name to define me. I do have cognitive impairment, yet my self is far more than that. It’s a careful dance.
Good post. I am sure you will have good times with these people for many years. Most people don't succumb for many years.ReplyDelete
My Dad had brain cancer and went from driving to paying bills in July, to total dementia to in a fetal position and dying in September. But that was a different case.
You have years to enjoy. None of us knows how many years we have to enjoy, but for sure, you have years. Enjoy them. You seem like a pretty happy guy, I am willing to bet that if there is cognitive difficulties, you'll be okay about that too. Just as long as people are happy around you.
What is a bit weird is that before my diagnosis I wouldn't have identified as a "happy guy," and few of my friends would have disputed me.Delete
But, yes, I am now a pretty happy guy.
I'm a nurse. Doctors are usually not very happy fellows, until they retire. LOL. I have a friend that at 75 went to work as an ER doc in Vail, so he could ski every day all winter long. But he's unusual for most of us, I think.Delete
However, I can see it now. The nurse brings your meds and (EVERY DAY), you want an explanation of what each pill is and what it does. I've had health care people in my care before and they can be frustrating. haha
This post has a lighter feeling to it, almost happy, at least serene. Someday soon, I hope you will address how you're thinking about the issue of Long Term Care. Do you already have special insurance? If not, I would imagine that it would be almost impossible to obtain now. I know it was for my mother early in her diagnosis, and because of the family's limited financial resources, the uncertainty of her future and how we would deal with her long term care needs was always present.ReplyDelete
BTW: PBS started a new series on LTC last evening -- the first case study was a remarkable, saintly daughter caring for her late-60s mom who had dementia.
Thanks again, David. You're doing great work with this blog.
The 10 min program that Mike mentions is worth looking at. Just paste the following into your browser: http://www.pbs.org/newshour/bb/health/jan-june13/healthcare_05-30.htmlDelete
It sounds like you have a wonderful faith community.
Your willingness to "put yourself out there" as a spokesperson is a gift to readers (and not self indulgent!). You are a wonderful "dancer" - dipping into and twirling around so many difficult topics relating to Alzheimer's and life in general. You are sharing your experience while trying to live your "moments!"
Thank you for highlighting the importance of understanding Alzheimer's disease as well as the
importance that we "forget" about it every now-and-than (or whatever disease or label we are attached to) so we are able to simply enjoy the moments.
My typing has been excellent. Then after I took my wife to the doctor she asked me about an incident at the gas pump yesterday. And I have forgotten where I got gas and only vaguely remember having the problem with a gas pump. Seeing the station brought part of it back, but I can't remember any details.ReplyDelete
Well, anyway, my physical is only a couple of weeks away.
And I haven't touched it in decades, but what do you think about this?
I have no idea if I have a problem or am just experiencing normal aging. But I wonder if you could discuss early Alzheimers in a post. You're a fairly young bird yourself, and I remember a Federal Judge who I used to watch admiringly as she practiced law having to leave the Federal bench a few years ago. She was even named once as a potential Supreme Court nominee. She had to be about or close to my age now (56). But as much as I can chance letting a few of my friends know and ask to watch me for trouble, I have difficulty in imagining asking the doctor how to get tested. My old doctor quit at the practice I go to and I am going to have a new young doctor who has an excellent resume but I will feel odd asking about getting tested. I know that the younger doctors are usually well versed in the latest knowledge, having two doctors in my family, but how does one bluntly ask the doctor: Doctor, I'm losing my mind. It ain't funny when you're the one doing the asking.ReplyDelete
There is a form of Alzheimer's that used to be called "early-onset Alzheimer's" that is now called "autosomal dominant Alzheimer's" that is highly inheritable (half of the children of affected parents will get the disease). It's also fairly rare, (less than 5% of Alzheimer's disease). It starts usually in the late thirties or forties and progresses fairly rapidly.Delete
The usual Alzheimer's starts later. Most places talk about it starting about age 65, but people seem to be getting more sensitive to symptoms, so the early form of the disease seems to be getting diagnosed earlier. It's course is more gradual and, although it's somewhat genetic, it's nowhere near 50%. I just wrote a post on distinguishing early Alzheimer's "Normal Aging or Alzheimer's?" last Friday, May 24, which you can check out.
I'm not sure why you would have trouble asking your doctor about problems with cognition. Doctors understand that many normal people are worried about their mental status as they age; part of the doctor's job is to reassure those who are well and support those who may have cognitive impairment of one sort or another. Young or old, any good doctor will be able to help. And the basic testing to see whether there's a problem is fairly simple. By all means, if you're worried get it checked out ... but be very specific with your doctor about what is bothering you. He or she will not be able to read your mind.
Yes, way less than 5%, not to be impertinent, but I looked it up. Here's the wiki mention of it.Delete
"The vast majority of cases of Alzheimer's disease are sporadic, meaning that they are not genetically inherited although some genes may act as risk factors. On the other hand, around 0.1% of the cases are familial forms of autosomal dominant (not sex-linked) inheritance, which usually have an onset before age 65. This form of the disease is known as early onset familial Alzheimer's disease."
Going to sleep now. Perhaps tomorrow will be an uneventful day. And for that I will be grateful.
Do you find it comforting that you often forget what you forgot. Or annoying. Or a strange mix of the two.ReplyDelete
Now there's a question I hadn't thought about before. Forgetting is annoying to me, whether its the primary forgetting or the forgetting what I forgot.Delete
Well, if I have this and I'm beginning to doubt it more and more, the forgetting what I forgot seems to be the most positive thing about it. Because I know there are dozens of things I've noticed immediately when I forget them that I've forgotten them. Later, I try to remember them, but I've forgotten most of them. So I can't be embarrassed about something I can't remember. On the other hand ....ReplyDelete
for me its a strange mix.
My daughter is 37 and found out in her early 30s that she has some ADD. She is on medication for it and noticed for the first time in her life, she does not walk into a room and think, 'let's see what was I supposed to do here?" She was always walking into a room and realizing she forgot what she was supposed to remember. She doesn't do that on medication. So maybe that's just a normal part of life. =)ReplyDelete
Thank you for writing this blog - it helps more people than you know. I introduced your posts to a good friend whose husband has early onset Alzheimer's. She reads your posts with hunger and appreciation - they help her understand her husband and what he's going through so much.ReplyDelete