On Amtrak Toward Napa CA
We're Not All the Same
The silence and taboo that surround Alzheimer’s prevent
our understanding that its symptoms can vary enormously from person-to-person
and even from hour-to-hour within the same person. This ignorance can lead to frustration,
depression, isolation, and confusion on all sides.
I, for instance, am quite early in the disease. Since my cognitive impairment doesn’t yet
interfere with my daily life, I don’t even qualify for the formal diagnosis of
Alzheimer’s (although there's virtually no doubt that that's where I'm headed). Sometimes I have no obvious symptoms at
all. Most of the time, you probably
wouldn’t recognize my impairment. Sometimes,
however, I get pretty confused. A few
days ago, I came home from an hour’s exercise on my bike. I was wearing my beltpack and a nylon
backpack that is so light I can forget it’s there. I had put my keys into my beltpack, but as I
stood at the front door, trying clumsily to get my bike inside, I couldn’t find
the keys. I searched through the four
compartments of the beltpack repeatedly.
Repeatedly. I kept going over and
over it—it may have been a full five minutes—because they just had to be there. Finally I remembered the backpack. I reached back, felt the keys through the
nylon, and only then could I vaguely remember putting them there. I started to take the backpack off. The next thing I knew, I was looking through
my beltpack again. Again, I perseverated
with the beltpack for what felt like five minutes, then thought (as if it were
a new idea) about the backpack, and only then did I realize that it was hanging
on my shoulder with the keys in it. I
had completely forgotten what I was doing halfway through taking the backpack
off and had started looking for the keys from the beginning again. Now, that’s pretty confused.
I’ve had a few other periods of confusion. Three years ago an entire
day disappeared from my memory. Last
September I got
lost riding my bike through a very familiar area and there have been two other
similar episodes. When I’m writing or am
otherwise at the computer, I have difficulty holding several things in my mind
at the same time and can get confused.
But most of the time, I’m not impaired except for my
memory. Sometimes even my memory kicks
in. Talking with a friend the other day about an event several years ago, I was
able to remember the name of the person involved, even though that had been the
only time I’d met him. “Your memory is
lots better than mine,” said my friend.
Alzheimer’s symptoms also vary greatly from one person
to the next. For me, the affliction is
primarily in the area of medium term memory loss and loss of the ability to
calculate and occasional confusion; it’s not (yet, anyway) in the area of
intellect, personal relationships, reading, and so on. For other people with Alzheimer’s,
personality changes may dominate: outbursts of rage or paranoia, hypersexuality
or accusations of infidelity while they can still function in most other areas
of daily living.
Other people have so much trouble with word-finding
that they seem almost unable to speak, yet their intellect remains intact and
they crave good conversation. For still
others it’s getting lost easily.
This variability doesn’t fit into Alzheimer’s public
image, which is of advanced disease, so other people’s reactions can be
difficult to deal with. I’ll explore
some of those reactions in the next post.
I took care of a man awhile back that had Pick's disease. The way it was noticed was this bush pilot in Alaska, independent, flying daring flights in blizzards, etc. came to visit his Mom and several times in the next few days, he was emotional and crying. Which was clearly unusual for him. He became more and more child like over the next few years, and more emotional. I remember once sitting him in a CT tub (in a nursing home, ( which has a door you can open to put the patient in) After it was filled with water and the jets began working, he slid down into the water, with a smile on his face, he went underwater. And he was about 300 pounds. There was nothing else I could do, but open the side door and soak the room. He continued sitting there smiling.
ReplyDeleteSo while most cognitive difficulties are assigned the name of Alzheimers', there are quite a few different dementias. Unfortunately they all have the same ending.
It sounds to me as if you are doing pretty good. And don't worry, anybody can lose their keys like that. You need to meet my daughter. I finally bought her one of those key alarms so when she pushes the button, the alarm on the keys will go off. Now she usually just has troubles finding the button to push for the alarm. LOL. She misplaces her checkbook, her purse, her keys, her glasses (and can't find her glasses without her glasses. lol
Of course we all lose keys. I have a lifelong habit of doing that. But it isn't normal to know where they are and not be able to find them and to perseverate like that.
DeleteQuit trivializing the frustrations and real confusion that David is having. Haven't you read his other posts of how maddening this is to people with MCI?
Ms. Gerelman has been commenting regularly on this blog with a great deal of authority, experience, and encouragement. I think if we read her comment in context, it's very clear that her approach is not a trivializing or condescending one.
DeleteMy heart went out to you when you described the keys incident. I could feel your panic and dismay.
ReplyDeleteI can't help but think as I read these posts, that oftentimes it is the most educated and well spoken amongst us that are afflicted. Has there been any research to indicate if Alzheimer's is an equal opportunity employer or, if in fact, it does hit the more intelligent segment of our world?
I have never read anything suggesting that Alzheimer’s is more common among the most educated and well-spoken. Personally, I would doubt it; the only thing that I have to base my doubt on is that Alzheimer’s is the result of physical processes (amyloid deposition and fibrillary tangles) that are not in any obvious way linked to intelligence.
DeleteIt may be that people who are used to operating primarily out of an academic intelligence would notice symptoms earlier and so be diagnosed earlier. It might also be that their dementia would interfere with THEIR daily activities (which depend on intellectual functioning) earlier than others whose primary orientation is in other directions. (just a guess).
Thank you for sharing this. I wish I had known a blog like yours when I first began caring for my mother 8 years, she was living with the early stages of dementia, and she lived with me. I could have learned so much.
ReplyDelete--author, "Inside the Dementia Epidemic: A Daughter's Memoir"
Thank you, Martha. Coming from you, I consider your comments high praise.
DeleteCathy, I used to work in a very rich Alzheimer's unit in Colorado. There were pods with 13 patients in each pod. In one pod, we had four Alzheimer's patients that had worked on the Manhattan Project together. Of course, in this unit they didn't know each other. We used to say they used their brain so much that they wore it out. Unfortunately I think it touches the rich and the poor, the intelligent and the not so intelligent, happy or sad. It just is.
ReplyDeleteVery true. I am getting further along in my progression. Most people who are around me more than 10 minutes know something is off, even if they can't put their finger on it. Thank you for sharing.
ReplyDelete