Why? Why?

August 9, 2010 at 1:50 am (By Amba)

Tell them that is human nature . . .

Jacques has dementia.  You could justifiably say he’s not “all there.”  But why do many people treat him as if he’s not there at all??

A friend is a physical therapist who works with special-needs kids, so you’d think . . . Yet she came into the house to pick up cousin Christian for a Latino festival she was very kindly taking him to (he’s a salsa freak) and left without even going in to say hello to J, who was sitting up on the side of the bed in the bedroom.  If he’s in there, she’ll sit down and talk to me at the dining room table and only go in to greet him if I ask/tell her to.  (My fault for not getting him up and into the wheelchair more.)

Does J notice and feel left out?  He must, though he doesn’t reason it out or remember it.  Even his cousin will cheerfully chatter to me about his obsessions in the kitchen while J sits alone in the other room.  (Boy, people around 40, in the thick of life, have intense obsessions.  I did!)

I guess dementia makes people uncomfortable.  (This could also be why my sister who lives some 3 hours away has visited me once in four years.  Or it could be that the less she visits, the guiltier she feels, the less she feels like visiting.)  I’m so used to it, it just seems like another variation on the human condition, interesting and exasperating and challenging.  To find a successful way to understand, or reach, or amuse a person with dementia is always a little triumph.  It’s rewarding!  And the rewards aerate the relentlessness a little.

I guess they can’t imagine this life, the way I can’t imagine a life where going to the latest movie and having a conversation about it over dinner is a rightful pleasure they can’t imagine living without.


  1. Leone said,

    You said it! Dementia ‘makes people uncomfortable’! I feel it when those who invite me to some gathering – and sort of ‘include Dale’ even at this stage. One said recently that he wished he had known Dale before.

    Thanks for writing.


  2. maria said,

    Dear Annie—I remember that perception—that others just couldn’t grasp was life was like for George, our daughter, and me—even those close to us. We were in another realm. STRANGE, and more real than real—and others just were clueless.

    And I could no longer grasp what it was to have a non-lewy life. The life before seemed like a story, a fiction, something in the mist, faraway in time and space. Nor the life after—that was imaginable only in cartoon terms: George would be dead and I would be able to go out whenever I wanted, and I would be alone forever.

    The life after is not like the life before. Lewy’s shadow still looms large over me. The suffering and loss eddy about my feet. Yet I am cheerful. For the most part, I know what is important in a way I never knew before all of this. Cheerful and battered. And now, I am remembering the life we had before lewy, and it doesn’t seem strange and misty and unreal. It is solid. Now, I have periods where I feel intense gratitude for the life we had, whereas before I felt bereft and cheated of it by the disease. I feel both ways, but now, sometimes the gratitude-way is larger and the cheated-way is smaller.

    I want to spend as much time as I can with people I care about and I want to experience this world, and this life of mine. I want to do good work.

    And I think about getting back to NC and visiting my in-laws and seeing you and Jacques again….and visiting my friend Sarah in Norfolk along the way….and on and on.

    Much love to you and Jacques—may you be well,


  3. amba12 said,

    Cheerful and battered.

    Now that really connected with me, somehow I can imagine that I will feel that way; sometimes already do.

    Also the purified and refined sense of what is important. And using freedom to travel and see people. Old friends and young relatives! And to see those places I’ve always wanted to see — India and Australia, mainly.

    Given health. God willing.

  4. wj said,

    I think it is at least partly that, if you have not had to deal with someone with dementia or similar issues (e.g. Alzheimers) at first hand and over a period of at least several weeks, people just have no idea how to cope. It’s just that it is so far outside their experience that they end up ignoring it instead. I know the first few weeks that I spent coping with my Mom after her stroke (which had the same result) were a real revelation.

    Not an excuse for the behavior, of course. But perhaps a reason.

  5. Michael Reynolds said,

    Conversation is call and response. No response, no call.

  6. A said,

    “No response, no call.”

    Not everyone has talent to hear an anomalous response or the creativity or desire to engage with it. And—extreme “otherness” is very off-putting to most people. As the mother of a handicapped,non-verbal child, I’ve been exposed to (and tried to protect her from) every permutation of the discomfort she/we trigger in many people. While I can’t agree with Stephen Kuusisto’s insistence that disability is a social construct, I know what he means.

  7. amba12 said,

    There is a response, Michael, it’s just not conventional. It’s more interesting for that, sometimes. (And other times totally maddening.) What you say sounds like, when people can’t play with a full set of marbles any more, they’re out of the game. We should leave them on an ice floe.

    It’s not fair of me to expect other people to engage with him. But I admire the few who do.

  8. Michael Reynolds said,

    I don’t think I’m calling for an ice floe exactly. I’m just explaining that people don’t talk to people who don’t talk back. Or respond in a way that seems disconnected from the expected course of conversation.

  9. Donna B. said,

    Amba, I’m reminded of your description of why toddlers are delightful: they live in an alternate universe and can report what’s happening there. We enjoy that. (Most people do.)

    It’s not so enjoyable when it’s an adult whose newly found alternate universe redefines our shared experiences. Adults, with their life experiences, can find darker universes too. The call and response nature of conversation is the same, just on a whole ‘nuther level. It can be wildly delightful or utterly frustrating, often at the same time.

  10. Randy said,

    I don’t think you’re being unfair – IMO, there’s definitely nothing wrong with wishing people could or would act differently. It won’t change anything, but its OK to have those feeligs and express them. It seems to me that serious illnesses do tend to make people uncomfortable, and that what you are talking about is not unique to situations involving dementia. Some don’t know what to say, or what not to say, or are afraid of what they might say, so the most comfortable route is to avoid having to say anything (IOW, stay away). Michael says it better above, but I was going to respond that many people aren’t prepared for receiving no response or an “off the wall” one, so they avoid the opportunity.

    I understand it is frustrating, and you pay a heavy unintended price as a result of others’ behavior, but my own experiences with avoidance of discomfort left me with the belief that there’s nothing that can be done about it.

  11. amba12 said,

    You find — naturally — that only people who have dealt with something like it themselves aren’t freaked out by it.

  12. Randy said,

    I think so. There are a few who can overcome the fear and discomfort without having been forced to at some point in their lives, but they are truly “rare indeed.” Or so it seems to me.

  13. amba12 said,

    When I was in my early 20s I had to, or wanted to, visit two friends of my father (both of whom I loved) who were dying, one of metastatized colon cancer, the other of ALS. In both cases I remember trying to look not at the disease but through it, at the person I knew. The friend with cancer was still going to his office 5 days before he died, but his whole body and head were lumpy and distorted by tumors and surgery. I remember him pitifully apologizing for the way he looked, and I remember saying vehemently, “I came to see Grant, not the disease!” The friend with ALS could eventually no longer speak and was using his eyes to indicate groups of three letters on a Lucite frame to painstakingly spell out heartbreakingly eloquent messages.

    I guess that was good practice. Neither of them had dementia, though. My maternal grandfather had that. It must have been even earlier, when I was in college. I remember visiting him in the nursing home where he thought he was in his law office and was turning the pages of his pajamas. As long as he was in his own world like that it didn’t affect me — I guess it was like he was already gone — but when he looked at me and managed to ask, “Are you playing and dancing?” I burst into tears and had to run into the bathroom.

  14. wj said,

    I wonder to what extent the reluctance to deal with those who have dementia has old roots. When people don’t know what causes something, they tend to assume the worst: that it may be contagious. In which case, it is actually a good idea, to keep one’s distance.

    So most people tend to stay away from individuals with dementia, not even conscious of why they are uncomfortable around them. Which would also explain why those who have dealt with it up close and personal at some point have such very different reactions. We know from experience that it isn’t catching, and so are more comfortable around it. (Maybe not perfectly comfortable, since it can be wearing even so. But much more comfortable.)

  15. amba12 said,

    That’s fascinating, wj!!

    However, turns out dementia is “contagious” since some study found that caregiver spouses are 6 TIMES more likely than the average person to develop it themselves. It’s just because of the stress and monotony, of course . . . or it could be because both spouses have been exposed to the same environmental insult.

    Here’s a link to the story, here’s another one closer to the source.

    I have a lot of trouble remembering things (names, facts) that used to be at my mental fingertips. I suspect it’s partly because memory actually needs constant rehearsal and “refreshment” which it gets in casual conversation with someone who’s intact. (Returning to MR’s point.) If you played tennis with someone immobile in a wheelchair, your game would gradually deteriorate. Use it or lose it. There’s also an eerie element of empathy/identification. You share your spouse’s world.

  16. wj said,

    I have developed a theory about why we have trouble remembering things as we get older. And it even accounts for why we suddenly remember the missing fact a day or two later at 4 AM. But in that case, it’s not deterioration so much as too much information.

    My idea is that all of the memories that we want are still there in our heads. Somewhere. But what happens over time is that the index that we use to access them quickly just doesn’t keep up. With a current index, we find things immediately; without it, we have to search sequentially thru all of our memories to find something. And that takes a long time; longer as we acquire more memories. Sometimes, by the time we find the right memory, it is a long time later. (When we are sleeping, i.e. not adding yet more memories, the search goes faster. Hence all the 4 AM “Oh, that’s what I was looking for!” moments.)

    I confess that this developed from dealing with computer databases. In order to keep the system running as fast as required, the data base indexes have to get rebuilt regularly. Now if I could just figure out a method to rebuild the index in my head….

  17. Donna B. said,

    I’ve been saying for years that I wish I could defrag my mind.

  18. amba12 said,

    Hmm. You’re on a roll today with theories, wj.

    Index, eh? It feels like a retrieval problem. The info is in there but you can’t access it. The sending of the request even seems to perversely repress it. Then later, it bobs up.

  19. wj said,

    I’ve got LOTS of theories. On lots of subjects. But usually I manage to restrain myself a little more. ;-)

  20. Danny said,

    I think it’s not about the fear of “catching” dementia–I think what makes many people uncomfortable is the human “reminder” right there in front of them that they will probably be touched by this condition at some point in their lives (either themselves or a loved one) and that terrifies them. They’d rather not know, not be exposed to it. It’s fear of the unknown future. Let’s pretend such things just don’t exist, shall we?

    In a crazy and probably offensive analogy, I think back to my pathological fear of my daughter getting lice. I couldn’t even be in the room when people were discussing lice, much less around someone who had it. I had visions of my daughter having her massive head of red curls shaved off in some kind of bleak Auschwitz-like scenario. Well, this year my daughter got lice, and the “lice expert” we consulted said it was probably the worst case of lice she’d seen in 20 years. We didn’t shave Leah’s head, we dealt with it and did all the stuff we had to do. Big deal. I no longer have a lice phobia.

    I guess a better analogy would be when my son was in the hospital for five months after being born at 1 lb. 4 oz. Some people could not tolerate the uncertainty of his condition at all and made themselves very scarce. Others could look at it head on and realize there was a real baby under all those tubes and wires.

  21. PatHMV said,

    Danny, I think you’re largely right. There’s also the matter of just having no clue what to say in such circumstances, trying to figure out whether you’re intruding into private concern or grief or whether you’re really providing some solace. I had a baby sister who died when she was just shy of 2 years old. She was in the hospital for 4 or 5 days, dying of meningitis. I was only 8 or so, but from brief conversations with my mother, VERY few people stopped by the hospital. It certainly wasn’t because nobody cared, I think they just didn’t know what to say or do in such circumstances (it was a week before Christmas, to add minor insult to terrible injury). Of course, my mother remembers forever those who did visit, and their simple expression of care and concern meant the world to her.

    How is Charlie doing, by the way? I followed your blog while he was in the hospital and was so very happy when he was able to come home.

  22. A said,

    “If you played tennis with someone immobile in a wheelchair, your game would gradually deteriorate. Use it or lose it. There’s also an eerie element of empathy/identification. You share your spouse’s world.”

    From what I know of the effects of ongoing stress, including years of sleep and social deprivation, deterioration of caregivers is not surprising, though the numbers you quote are
    pretty alarming. But the sharing of an altered world, the empathy—that’s a tricky one. Though my daughter doesn’t have dementia, her mind and perceptions are quite particular to her, and have become so familiar to me that my own senses, as well as those of her other long term caregivers, have been changed. I hear differently, I see differently. For all I know, the feeling that this is somehow enriching might itself be a form of damage.

  23. amba12 said,

    We completely washed out on something like that once, Pat. An old friend of J’s (closer to my age) lost his 16-year-old son in a horrible, stupid teenage accident around 2003. They lived on City Island, in the “armpit” of Long Island Sound between L.I. and CT. After a party our friend’s kid and 2 other boys followed a fourth boy, the “bad kid” leader (a Russian gangster’s troubled son), down to the Sound where they decided it would be a good idea to get in a rowboat and row one mile to another island. It was February and the water temperature was like 33. Sometime later they made a desperate 911 cellphone call which wasn’t processed till the next morning, which caused some scandal in the papers but it wouldn’t have made any difference — if their boat sank, no one most likely could have found them before hypothermia set in. Their boat was found, the 4 boys never were.

    There was a memorial service, and I’m sure everyone would have taken comfort from Jacques’ presence. They had all considered him their rock back in the ’60s when he owned a coffeeshop where they played flamenco guitar. We did not go. Jacques was already ill, and I chickened out of shlepping him out there because I simply had no idea what to say. Even Jacques was completely silent on the subject. It was too horrible.

    We have a mutual friend (the guy who was indirectly responsible for introducing J and me — my connascent, as described at the end of this post) who didn’t answer me for a year when I hailed him on Facebook, and I thought it was because he was still angry at us for letting down the bereaved father — that’s how guilty I still feel about it. He finally answered and said no, it was just that he rarely looks at Facebook. He suggested I contact the father — whose wife and remaining child are doing well. But he has never answered.

  24. amba12 said,

    A, I wonder if you can translate that different hearing and seeing to give others just a glimpse of what you see and hear. Light shed on our common life from new angles is so sorely needed. I remember being electrified by reading Nobody Nowhere, the autobiography of Donna Williams, who has autism. Her ability to communicate her experience shed new light on mine.

    But then, I’ve always been interested in difference — maybe because I’m easily bored.

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