Kind of Discouraging for this Early in the Morning

There is an elderly man who walks a lot in our neighborhood; if we are outside at the same time, he will stop and talk. At first I thought he might be deaf, because it doesn’t seem to matter what my half of the conversation is; after repeated conversations, I’m pretty sure it’s not deafness—though he may ALSO be a bit hard of hearing. He tells me the same things again and again, and he can get at most two sentences into a topic before he trails off and seems to forget what he was saying. He calls out “I love you! I love all of you!” as he leaves. It’s sweet and upsetting.

One thing I’m wondering is what it FEELS like. He seems happy when we see him. He seems happily sentimental about seeing kids playing and people out biking/walking, and very pleased by the prettiness of the day. What do things feel like from his point of view? I remember reading a long time ago that the worst part of Alzheimer’s is when the person can feel something is wrong—but then the condition worsens-yet-improves when the person can no longer tell.

Well! That’s a discouraging potential future for us to contemplate first thing in the morning! “Good news: at some point you can’t TELL how bad you’ve gotten, so you feel MUCH BETTER!”

I also wonder a lot about what he was like before things went this way. For all I know he’s ALWAYS been like this, his whole life. When he tells us about his career, it could be imaginary. But my guess would be that no, this is something that descended on him late in life. It’s sad to think of his former self observing his current self. On the other hand, his current self seems very happy, and his former self ISN’T observing it. It’s hard to know HOW to feel, isn’t it!

I have three reasons to be thinking about this as much as I do:

1. One of the job possibilities in my future is something at the local nursing home. I’ve wondered if that’s something I’d even be good at, but I don’t think there’s a good way to know without trying it. (My plan is to do some volunteering there when the next school year starts up, to see.)

2. While thinking about those possibilities (the job and the volunteering), I realized that if I continue to live in this same town, I could VERY WELL end up living at that nursing home MYSELF. That was a very odd thought: picturing myself working there, and then perhaps retiring, and then perhaps returning.

3. Thinking about my parents, and the various possible paths of THEIR futures. If I think it’s hard to know how to feel about a guy in our neighborhood, I’ll bet there are TONS of mental treats ahead! I am attempting the very smart “Wait to see what happens so you can think about just THAT path rather than ALL THE PATHS” method, but I don’t find that method compatible with my factory settings.

Plus, I ALSO think it’s sensible to be aware of the possibilities, to avoid making an assumption without realizing it and then being SHOCKED when things don’t go that way. I noticed it had never occurred to me that the nursing home I frequently drive past could be MY PERSONAL NURSING HOME one day; that seems like a fairly big Awareness Gap. I don’t want to fret to the point of overfretfullness about things that might never even happen, but if it’s an interesting thing to think about and it helps keep us realistic and empathetic, the other method suddenly seems a bit “La la la, I’ll worry about it tomorrow!”

There. Factory settings rationalized.

12 thoughts on “Kind of Discouraging for this Early in the Morning

  1. H

    For the first 11 years we lived in this house, we had a neighbor on the corner (he lived there with his wife, who still lives there) who was a very odd man and was quite unpleasant in a variety of ways. He was mostly argumentative, negative and very odd with glimmers of kindness. Everyone in the neighborhood avoided him but tolerated him. The last 2 years he lived there, he became even more odd and a few times, the police were at their house. The last time the police came, he was taken away in an ambulance and his wife told one neighbor that he had a form of early onset dementia which caused his personality to change, and not in a good way. We never saw him again and he died shortly thereafter. A group of the neighbors went to his funeral and as we watched a video of his life, one neighbor said, “We didn’t know him. We only knew his disease.” Those words will stay with me and gave me a new perspective.

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    1. Lawyerish

      I’ve known a number of people with this/a similar type of dementia (i.e., one that is early onset, slow-progressing, and causes behavioral/personality issues/changes), and it’s particularly sad because it tends to go undetected for a pretty long time — others just think that the person is strange or belligerent or whatever, and then by the time it’s progressed far enough to warrant a doctor visit and diagnosis, the person has become completely marginalized (or divorced or estranged from family, etc). For people who do have family to care for them, it’s a very difficult disease to live with because the person tends to be quite aggressive and often loses the ability to identify loved ones. It’s awful. That neighbor really summed it up well.

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  2. Laura

    The volunteering is a very good idea for the very reasons you stated. I’ve been doing part-time home care, and one of the ladies I help has many, many scrapbooks and albums from her birth in 1923 all the way up to about 10 years ago. She now has dementia and we spend hours going through these albums. Some thoughts: Her past self would be so sad about her present condition. She is not aware or sad about her present condition. I am sad, often to the point of private tears, about her present condition. I am wishing I had more scrapbooks and albums for my future self to enjoy in case of mental impairment. I’m envisioning a 90 year old me trying to scroll through an iPhone camera roll with my 30 year old caregiver. Not a soothing thought.

    I love how you tell a story. I find myself thinking about your posts long after I’ve read them. It’s like remembering a delicious meal for my brain.

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  3. Dr. Maureen

    My aunt has Alzheimer’s. It is the worst. My grandmother had it too, but she was deep into it by the time I was old enough to remember anything, so I never knew her. My aunt I did know, and it’s awful. But I agree, it is better when the disease progresses far enough that they no longer know anything is wrong. I go visit my aunt now with Ann Marie and Ann Marie is the best thing for everyone at the nursing home. They LOVE Ann Marie.

    This American Life did a story on a nursing home in Germany which installed a fake bus stop outside of their building for patients who get the idea of trying to go somewhere; to go home to their childhood homes, for example. They used to have to restrain patients who would then become increasingly agitated, but then someone had this idea. So lots of times now, they’ll notice someone is missing and look out the window and see him or her waiting for the bus. They wait, the bus doesn’t come, and eventually the feeling of needing to be somewhere passes, and they are happy to go back inside with a nurse and have some tea. This philosophy extended and they also let a patient who used to be a baker get up at 2am and bake bread if that’s what he feels he needs to do. That’s what time he always used to get up to bake bread for the bakery, and the staff used to try to force him to go back to sleep and then said, “What harm?” and now he happily bakes and they get fresh bread and everyone wins.

    But man, dementia is just evil. It is evil.

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    1. Shawna

      I love both of these solutions: the fake bus stop and letting the man bake bread. It’s a much nicer, gentler way of interacting than trying to force regimented rules and behaviour in ways that upset everyone involved. We need more ideas like this in the world and kudos to whoever thought these two up!

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  4. Stacey

    My MIL was a nurse & she worked in the same nursing home practically her career. She worked into her 70s. Towards the end, she was older than some of the people she was taking care of. She was just healthier than they were, so she could do it & she liked working. Had she survived her heart operation she would have gone to stay in that nursing home for her recovery. She wasn’t happy about that at all, either. Nursing homes are for ‘sick old people’ in her words, not for her.

    Both my grandmothers developed memory issues. Nan had Alzheimers & Grandma had straight demetia as a result of diabetes. Nan knew she was forgetting things, knew she had a problem & she always looked so sad & frustrated when confronted with someone she should know but couldn’t. Like me, or her other granddaughters. I hated it so much. But Grandma, she was lost in her own world. She was 19 again in her mind & I was one of her girlfriends & we would talk about going to the movies (all 1930s stuff) and then for a soda to meet up with boys. And she’d comment that my husband & my brother were some cute boys & we ought to see if they would buy us soda. As sad & difficult as it was for us, she was happy, so we were happy for her.

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  5. Lawyerish

    One of my grandmothers had Alzheimer’s and one had dementia, and both were incredibly tragic to witness. I do think that the viewpoint of the “past self” fades away, and it’s extremely difficult to tell whether the person has flashes where they’re aware of their condition. I think they do from time to time for a while, but those episodes are blessedly brief. My grandmother who had Alzheimer’s seemed pretty content a lot of the time even though we didn’t know “where” in time she thought she was. The worst was when she would become disoriented or even aggressive because she thought we were all strangers.

    I think, though this may just be rationalizing because with these genetics I don’t see myself escaping some form of this fate, that it was much worse for the rest of us than it was for her. But man. The good news is that both of them died peacefully and the mental deterioration wasn’t accompanied by physical pain or distress.

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  6. Nicole Boyhouse

    I remember this feeling from reading Still Alice, where she can see that she’s deteriorating. But when she’s rock-bottom deteriorated, she’s super happy. Yay, ice cream! Yay, nice cute baby! Yay, that nice lady who calls me Mom! It’s pretty depressing on one hand, but on the other? I remember my husband’s grandma who had dementia and she was super happy whenever someone would visit, because it was a nice new person. Maybe it’s just bad from OUR perspective. Oh man. This is depressing.

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  7. emmegebe

    Not compatible with your factory settings, hee hee.

    My mom has advanced Alzheimer’s. The thing I am grateful for is that she, like your neighbor, has remained cheery and sweet and sociable. It can go the other way, with people having awful personality changes that make them really hard to care for, as someone above mentions. So I am glad for that one aspect. She is relatively pleasant to care for, and that helps her caregivers actually *like* her, which in turn leads to better care (I believe).

    Alzheimer’s is a horrible, horrible disease. Watching my mom decline has made me morbidly hope that my own death is swift and painless (and also coming late in a long and healthy life, if possible). Mom’s body is as healthy as can be — she’s 85 and takes no medications — but her brain is so diseased that she doesn’t know any of us anymore and has a hard time putting together a complete sentence. When she does, though, she talks about the same things from her past over and over, like your neighbor.

    You can see that my mom has inklings of sadness, frustration, and embarrassment sometimes, but mostly she doesn’t know what she doesn’t know. Her former self would be so sad to see her present self, though — she watched her own mother decline into dementia and mourned deeply for the smart, loving, and competent woman her mother had been. Which is pretty much where I am now, mourning the loss of the *person* who knew me as her daughter even as her healthy body keeps on going. (I’m also doing everything I can to reduce my personal risks for dementia given that it obviously runs in my family. Sigh.)

    Mom’s one remaining pleasure in life is just visiting and talking with people. She still enjoys and appreciates the communication and the attention even if nothing makes sense in the usual way. You are treating your elderly neighbor exactly as I would want someone to treat my mom. Just greeting him with warmth and talking with him for a little bit makes him feel still a part of the world and still capable in his own way. I’m getting a little teary here imagining there is a Swistle in my mom’s world. So please keep doing what you’re doing.

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  8. Maggie

    My grandmother had Alzheimer’s and it started to get bad in my early to mid teens. When I was about 16 there was a really horrible period when she forgot who my mom and aunt were and then in a moment of lucidity about her condition she tried to drown herself in her backyard pool. Once she crossed the Rubicon and no longer remembered anyone, she was happier, but damn that disease is just so awful. I just hope like hell no more of my loved ones get it and I dodge the bullet. It was such horrible hard time for my mom and aunt.

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  9. sooboo

    There is a whole village in the Netherlands for people with dementia. http://gizmodo.com/inside-an-amazing-village-designed-just-for-people-with-1526062373
    Both my parents had dementia in their early 70’s and if I get it, I hope I speed right through to the “point you can’t TELL how bad you’ve gotten, so you feel MUCH BETTER!” Lol!
    Whenever my mom was being wheeled through a hospital on a gurney, she thought she was in the Venice canals, though sometimes she thought there were worms in her food. I spent a lot of time in my mom’s care facility and I liked it more than I thought I would. Volunteering is a great idea.

    Reply

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