So sad today

We had dinner with an old friend. She’s not all that much older than us – maybe six or seven years? I met her when I first moved out to Berkeley. She was already a graduate student in Comparative Literature, when Tom started in the department, and they had a few classes together before she finished her degree and went off to a job. But her professors were Tom’s, and later some of them were mine too. And she grew up in this area, and what with meeting at various professional conventions and all, we’ve managed to stay in touch over the years. She’d recently retired, misses teaching, and had been trying to figure out what next.

Well, now that decision seems to have been taken from her, and she seems to be back here to stay. Her daughters have done an “intervention” to deal with what appears to be the early stages of Alzheimer’s. They basically scooped her out of her house back east, took her off to a high-powered place to be tested, and have now settled her into a very classy residential facility in the city. It could be so much worse – the place is clean, clearly expensive as hell, and one of her daughters lives quite nearby.

They are making every effort to make it work for her. But somehow her kids don’t seem to have the slightest idea who she actually is. They did both go off to boarding schools for high school, and their dad was a high maintenance type, so it makes some degree of sense that they may have just missed some of the essentials.

They have her set up here with none of her books, none of her stuff. She arrived here with a suitcase of clothing. But she’s a medievalist with a strong classical background and has spent forty years teaching and publishing. This is like having someone take away your arms without noticing they did it. She was incredulous to find a gigantoid tv screen taking up half her wall, installed by her daughter who had no awareness that this would NOT be something she’d want in her space. But that’s what her kids have set up: they furnished it for her in finest early Department Store. The room is like a classy hotel – sterile except for a great deal of schlocky art. She says the nice ladies who live there – and she means nice in a not-totally-sarcastic way – are rich women for whom this is just another country club/cruise equivalent. 

We took her to the zoo, and did a long tour – which ended up being the longest walk I’ve done since October and I made it all the way back to the car without collapsing. We went out for dinner and we talked a lot. She is mostly okay. She appreciates that her kids are trying to care for her, but she is going stir crazy. She has to sign in and out, and people have to be approved to go out with her. And, more, she’s feeling completely uprooted. And when she hit on that word, she started to cry. She wants to go home; she misses her friends there; she misses her life.

But it is really hard. She’s always been a bit scattered. Always, going back to the first days we knew her. But, there is a new degree of failure to keep on the track of a discussion. That she has always seemed scattered masks a lot, but there is something more off than before. And apparently she managed to get lost twice in the past year, as in wandering about with no idea how she got there. I am willing to believe that if the doctors think she needs something like this level of care, that probably she does.

But the fit is so bad. And, yes, I know that the fact that the place is clean, and well-run really should trump the rest of it. And I’ve dealt with batty relatives, and I know how hard it is. 

But.

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37 responses to this post.

  1. So sorry. It is so sad to watch someone disintegrate. Hugs.

    Reply

    • Part of what is painful is that my favorite professor, one of the ones we shared, also suffered from Alzheimer’s.
      He was one of the most brilliant people I’ve ever known, and a kind sweet man as well.
      Simply awful.

      Reply

  2. That’s tough. Sad that her kids don’t really know her. Is the husband not on the scene anymore?

    Reply

  3. This is a sad, beautiful post. I hope your friend can hang on to her “self” as long as possible. Moreover, I hope somebody gets her a Kindle, where she can read a kabillion classics free.

    (I started to leave a really long comment, but I deleted it, and wrote my own post. http://tomzone.wordpress.com/2013/02/11/had-to-cry-today/ I didn’t use your name or link to your post. I will if you like.)

    Reply

    • She’s resolutely non-technological, and has been for decades.
      It’s a problem, because that would be a great resource for her.
      I doubt if she’s up to dealing with something new at this point.
      Sigh.

      Reply

  4. I’m sorry, lauo, this is incredibly sad. Some of my friends are dealing with Alzheimer’s parents. All of it is relative–to how much the adult children are willing to be inconvenienced, the different stages of dementia, level of self-care, etc etc. it’s regrettable that they chose to have an “intervention.” But leaving choice up to a person whose judgment is impaired… I guess you can’t win with this disease.

    My heart goes out to you for the “loss” of your friend.

    Reply

    • Yes, it is very much a no-win situation.
      To my eye she does not really seem capable of making rational choices, or of carrying them through effectively.
      So I can see the need for something like the situation they have set up for her.
      But she is still sufficiently herself to perceive and feel the difficulties.
      It’s early days yet – maybe they can all learn to communicate better?

      Reply

  5. How sad. Can they not box up her books and at least send those old friends to her new space?

    Reply

    • The trouble is that she’d just retired, so her office had all been packed into boxes.
      She was traveling, so they stored it.
      I think the office assistant knows where it is, but she didn’t seem to.
      And, if I remember, when I last saw her she was saying her house had gotten into terrible shape since her husband died.
      And it is a big, big house.
      Someone will have to go out there and deal with it, but as of right now neither daughter is near it and both work.
      I’m hoping she is holding together well enough that maybe the lot of them could go there together over the summer and deal with all the stuff.
      And set her up with her own choice of her own things.
      Maybe.

      Reply

  6. Ow, my heart. I second Laurie, can’t she get some of her books to the new place?

    Reply

    • I’m thinking getting her own things might take a while, but a basic store of either work or recreational books wouldn’t take a lot of work.
      I’m considering digging out a bunch of Trollop for her, just as a comfort.
      I don’t know whether she is up to any work at this point or not.

      Reply

  7. That is incredibly sad. I’m a bit surprised that the place did not suggest filling her room with some of the things/books she is familiar with.

    Reply

    • it looks as if they went out and got what they considered very nice new stuff.
      Which basically looks like a classy hotel
      But all her stuff is either in deep storage here (from before she got her job – the late 70s?), or in her house back east, or in storage wherever the college put it.
      Maybe they will think of actually shipping some few things back?
      Or maybe she could contact friends from near her home for specific things.
      I’ll talk it through with her.
      (I think it is all complicated by lots of input from the local daughter’s partner.)

      Reply

  8. This is what I am trying not to do with my father, but as Jaypo said, it is no-win situation. As much as he’s a tiresome old jackass, he is also a human being. He loves his home, as shabby and loaded with junk as it is. But I’m starting to see days where he is more like a zombie than “Dad.” He sometimes behaves as if there’s no one else in the room and sits staring, glazed-eyed, at the TV. Other days, we have some interesting conversations and I forget he has dementia. So I try to weigh between the zombie days and Dad days. When the former become more frequent than the latter, then I’ll do the intervention. (Because my siblings still don’t believe that Dad has dementia, at least as long as it’s convenient to them. I expect a fight with them when the time comes.)

    It seems odd that the daughters could just sweep your friend into the Alzheimer’s home. Did they have letters of capacity from her doctors? Is one of them acting as her attorney-in-fact? In California, it is very hard to place someone into a care facility against their will—hence my issues with my parents. It seems inhumane that they could do this, without bringing any of her possessions to make her feel more comfortable in her new surroundings. Which leads me to wonder who is taking care of her home and her belongings on the East Coast. This situation troubles me in many ways, not the least because your friend is so visibly distressed.

    Reply

    • I believe that what they did was convince her to go get a diagnosis, based on things she had told them, and things they’d observed.
      I think before that she had been basically hoping to continue to cope on her own, and assuming that in a benign universe she could bop about safely even though incapacitated.
      But they were worried,and managed to take her off for a thorough going-over.
      That done, after masses of conferring, she seems to have given them both shared power of attorney which they used to set this up.
      She had gone to visit one sister, got taken to the doctors, and ended up here without going home, all of it over a few weeks.
      I think they also worked with her priest – she’s very churchy, and her late husband was a very big wig church person.
      She wasn’t involved in the paperwork, and doesn’t know who is paying what or how.
      Some of it may be through the husband’s church, or as special deals with this specific place, she just doesn’t know.
      From what she said, I’m not sure exactly what the legal status of things is – whether she has completely ceded any say in things or not.
      I *think* that if she wanted to fight it, she probably could.
      But she loves these girls, and for all the pain she feels from the uprooting and the missed guesses on their parts, I think she sees and understands that they are pretty much operating out of care for her and is touched by it and doesn’t want to hurt their feelings.
      And I think she can see that she is not fully functional.
      It must be scary as all get out.
      But the hotel room effect isn’t doing her any good either.

      After looking at this, I have to say.
      It may not be that you can help your father through all his trials to the end.
      But every day that you give him is a day he hasn’t been sent off to something that probably won’t be all as silk-lined and 1% as this place.
      And as full of art stuff, and grand pianos and perky helpers, it is still a completely alienating place.
      The familiar is a great gift you have been able to give.

      Reply

  9. Sad, sad, sad in so many ways. Bad enough to be slipping away that way and have people making decisions for her, but to be uprooted and separated from all that’s familiar and loved? Terrible. It can’t feel too good to realize that her own children are clueless about her, either. I’m glad you’re able to visit with her.

    And I very glad that you felt well enough to make that long walk!
    🙂

    Reply

    • I’m hoping they can work from where things are now, and adjust and improve, and make it work.
      I don’t know whether there is an academics facility available.
      Sigh.

      The walk was a close thing.
      I was highly tempted to take the kiddie train back to the gate, but my pride wouldn’t let me.
      Then it was another three blocks – uphill! – to the car, but by then it was a matter of honor to finish the day.
      It was really good to sit down after that though.
      But I am getting better by leaps and bounds at this point.

      Reply

  10. I commented on Tom’s before I came over here, but I read this first in my email. I have no family anymore, but when I did I saw generations before me go into Alzheimer’s and lose themselves. I don’t care how nice the place is, it’s still purgatory – somewhere between living life and whatever comes after. Sigh, and hugs to you for your grieving for your friend and her situation.

    Reply

    • I think that is pretty much how she sees it herself.
      What is sad is that she is still enough there to see it, and also enough there to see that she needs something like this.

      Reply

  11. That’s really sad. And ditto what HG said in her 2nd paragraph. It is odd that she had zero say in the matter all the way down to what she did and didn’t bring or have put into her room.

    Reply

    • i think they saw it is a lovely present, all nice and fresh and new.
      Sigh.
      As I said earlier, I hope they can find a way to take her by her home once again, so she can manage to bring a few familiar things into her new place.

      Reply

  12. Wow. It must be hard enough being uprooted to a new place, even when the new place is homelike, but when it’s completely strange and different. It makes you wonder if the daughters did it because mom really needs it or because they just don’t want to deal with mom as she starts to fade. (And I’m not judging that, either. I have days when I want to shuttle my mom off onto someone else to deal with, so I totally know the feeling.)

    Reply

    • Well, they have both been long settled in school and jobs far away from where she teaches.
      And up to this she has been entirely on her own, completely in charge of her own life.
      So there isn’t any history of her needing, or wanting, them to deal with her.
      The one daughter has actually set things up so as to bring her closer – a few blocks away rather than across the country.
      I think that is a lot of her discomfort – she is accustomed to being completely independent and it isn’t something she can be any more.

      Reply

  13. When my parents were taken into care, pretty much one suitcase went with them. But then things were brought from the house. They should pack up a few books at least. Maybe some nicer art. How’s about a tapestry to drape over the TV?

    Perhaps you and I could have an expotition to used book stores and buy her some nice Penguin Classics. I’ve got some Roman and Medieval stuff I was going to sell used, but I could give them to her instead. Would that help?

    Reply

    • I’m thinking I need to confer with them, and urge a summer’s trip back to the homestead.
      Perhaps they could have her pack up a pod to ship out here.
      And judiciously choose from it stuff that would actually go into her space.
      Academic books are specific stuff – I think she probably needs her own, or her own choice.
      I don’t know whether she wants to, or is able to, continue any of her academic projects.
      I don’t know what all of that she would like.
      But I think a range of fiction: Trollope, Austen, Milne, Beatrix Potter?
      She’s a great Anglophile.
      I’m thinking about it, and thinking it might help her emotionally, even if she can’t do much with them.
      Because I’m worried.
      She’s lost weight, and didn’t actually eat much of her dinner.
      I’m wondering how this is going to progress.
      But right now, I think it would help.

      Reply

  14. I got here in a round-about way. Tom’s post was first in my email list and now I have found this.
    It is sad. And she (and you) have the right to mourn the loss of her old life.
    I hope she can get a few things brought to her to make her feel more “at home”.

    Can I donate for a tapestry for the tv? I love that thought. I would like a tapestry for my tv. 😉 Hubby watches it waaaay too moishe.

    Reply

    • I think she has to talk this through with the kids.
      Her finances are good – the stuff they got her was all very high-end, misguided is all.
      Maybe when her priest friend gets back he can mediate her desires with them a bit.

      Reply

  15. Wow. If I took my Dad from his books and Music, there would be nothing left of him. I’m sure the daughters have not done too much with her “stuff’ yet. Can they perhaps bring it on out.

    I think sometimes we kids tend to think,”Mom and Dad never had nice stuff” so we overcompensate not realizing that our parents had the “stuff” they wanted, not the stuff we want.

    I hope things improve. And it must be quite early alzeheimers, given that she sounds as if she is her “regular” self?

    Reply

    • It’s rather the opposite problem, she has lots and lots and lots of nice stuff.
      Her folks and grandparents were wealthy and she was the only grandchild.
      And her husband did well, and she’s had a real, well-paid academic job.
      It’s just that mostly it isn’t here, and her own kids have no interest in the family stuff.

      It seems to be early.
      She is mostly herself, though since her usual style is somewhat ditsy, so a lot of symptoms have probably been masked by it.
      So she’s mostly like her self, only a somewhat blurry copy – a normally wandering conversational style going over to complete disconnect occasionally.
      You could see her realizing it, which was heart-breaking.
      They are giving her a medication, which she says is helping.

      Reply

  16. Lauo, I need a list of monthly letter writers… littlem said you have one to send. Please email to me, I thought I had one but it’s packed!

    Also, I thought you were on my blogroll but you weren’t! Now i can’t figure out how to add you, lots of stuff is different since last time I wandered around much here.

    Reply

  17. My mom went through something similar to this 5 years ago with one of her BFFs from graduate school. Her onset was sloooow at first, explained away by other things. And then BAM, it finally became apparent when she was doing things like driving to the grocery store and leaving her car in the parking lot – doors ajar, even – because she forgot where it was and then attempting to walk home. Just scary, scary shit. Anyway, once her daughters, her sister and my mom figured out what was wrong and got a diagnosis, they moved her to a hospital in Texas. Now her mind is completely gone, which was inevitable, obviously. But I’m convinced that if Janna didn’t have her house full of her things, her life’s works, everything, for all those years before, I think the onset would have been even faster. It’s different for everyone, of course. But I think your friend’s daughters are setting her on a path that is entirely bleak and will cause a faster downturn. I know this isn’t much different from what everyone here has said. I’m just soooo sympathetic. ((((((HUGS)))))

    Reply

  18. Posted by SingingTuna on March 8, 2013 at 7:40 pm

    It’s been a few weeks. How’s she doing?

    Reply

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