Author Topic: On Caregiving  (Read 63728 times)

Offline brian

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Re: On Caregiving
« Reply #360 on: January 23, 2019, 08:36:03 pm »
I am grateful my mother was quite different. She was never impatient and always thanked us for every little thing we did for her. The only thing, and we still laugh about it, is she was very impatient in cafes and really wanted her coffee immediately if not sooner. The other thing was that taking her up escalators was fraught as she would stop as soon as she got to the top not realising there were people behind, we had to almost drag her a few more steps out of the way. Of course, in the last year this was no longer a problem as she could only go anywhere in a wheelchairi so we had to search for lifts (elevators?)

Offline serious crayons

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Re: On Caregiving
« Reply #361 on: January 23, 2019, 11:35:07 pm »
Finally, it was Mom's physical therapist who figured the mystery out. There were mineral crystals in her inner ear and, when she turned her head, these crystals would bend the little hairs inside the ear and distort her sense of balance. The PT led Mom through a series of exercises or positionings that got rid of the crystals and then she had some relief for a few months until the problem built up again. I learned later that this is a very common and widespread problem.

That's the kind of information I needed to have and would like people to know so they don't have to go through the miserable waits in doctor's offices, the falls, and the brain-wracking that I had to.

I've heard of this phenomenon, too! It's so weird that you and I and Brian and Jeff have all heard of it, but somehow it eluded her doctors. Go figure. I think you're right that doctors sometimes give women, probably especially older women, some standardized diagnosis without really investigating their problem.

My mom didn't have that problem, but what happened to her was that her doctor diagnosed her with Alzheimer's without telling anyone. Early on, I asked my mom to ask her doctor about memory issues and she said she would, then when she got back from the doctor I asked if she'd asked about the memory issues and she said "What memory issues?"

Eventually I found a prescription bottle of Aricept in her cupboard and I knew what that was for. I immediately switched doctors. I understand that her previous doctor may have been constrained by HIPAA from telling me about it, but surely there would have been a way for her (the doctor) to say she'd like to talk to a family member, gotten my name and my mom's permission, etc. I switched her to a youngish doctor who specialized in older patients and on the very first visit I accompanied her and listened as he told her (gently) he believed she had Alzheimer's. She didn't react and never spoke of it. I don't know if she didn't understand or just didn't want to discuss it. She was a very private person.

The one thing I blame that doctor for, though, is not immediately supplying me with contact info for a bunch of resources. The Alzheimer's Society, for example, would have been a good start! And there are others. The society has a website full of information and guidance, support groups, etc. But I didn't think of contacting them and thus just tried to gradually figure out on my own how to help her.


I haven't seen this disconnect covered, except to say that your aging parent will not be sensitive to you, they are all wrapped up in their own problems and so you have to be patient and kind. Easy to say, sometimes hard to do. I only developed the maturity to cope with these kind of disconnects about a year before she died. I have to say that it was my faith in God that helped me over the hurdle.

Like Brian, I had a different experience. My mother was never impatient. I was kind of impatient myself, because she walked extremely slowly and I would have to slow my pace way down when we went places together. But my mom was mostly pretty cheerful -- especially, surprisingly, as her disease got worse. I often think that Alzheimer's, in and of itself, is actually not a terribly unpleasant disease for the person suffering it. It's awful for the loved ones, who also know the patient would find it awful if she knew what was happening.

Anyway, sounds like you have a lot of material for your article!



Offline Front-Ranger

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Re: On Caregiving
« Reply #362 on: January 24, 2019, 12:26:44 pm »
A slight course correction to a success that gave me more confidence. Mom was always entreated to drink more water but she was not following through. One time as I was handing her a glass of water, I noticed that she couldn't see the straw because it was made of translucent plastic. So I brought her a brightly colored plastic straw and she started drinking water right away.

But then there was another setback. The next time I visited, the straw was nowhere to be found. Of course, the nurses had thrown it away! I put several more in her bedside drawer, but those were all tossed too. I finally hit on the idea of buying her a whole box of paper straws. Every time I went to visit her, I would fix up her glass of water. I think it made a small improvement in her health, and it was a big confidence booster for me. I needed it, because there were a lot of things that caused me to sink into despair.
May 2019 be better for us all.

Offline Jeff Wrangler

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Re: On Caregiving
« Reply #363 on: January 24, 2019, 01:22:10 pm »
But then there was another setback. The next time I visited, the straw was nowhere to be found. Of course, the nurses had thrown it away! I put several more in her bedside drawer, but those were all tossed too. I finally hit on the idea of buying her a whole box of paper straws. Every time I went to visit her, I would fix up her glass of water. I think it made a small improvement in her health, and it was a big confidence booster for me. I needed it, because there were a lot of things that caused me to sink into despair.

My understanding is that dehydration can be a real problem in the elderly. For one thing, some medications they take can themselves be dehydrating.
"It is required of every man that the spirit within him should walk abroad among his fellow-men, and travel far and wide."--Charles Dickens.

Offline Front-Ranger

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Re: On Caregiving
« Reply #364 on: January 24, 2019, 08:49:35 pm »
There are several more topics that I'd like to tackle here, such as the question of whether gum disease contributes to dementia or vice versa. I'm also starting to see a trend. . . my fellow BetterMostians seem to be more well informed than I was when I started the caregiving process. It's true that I was, and still am clueless to many medical matters, because of my lack of direct experience. So, would what I have to write cause the reader to say, "Duh!"
May 2019 be better for us all.

Offline CellarDweller

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Re: On Caregiving
« Reply #365 on: January 24, 2019, 11:11:43 pm »
My understanding is that dehydration can be a real problem in the elderly. For one thing, some medications they take can themselves be dehydrating.

I've heard this as well.


Tell him when l come up to him and ask to play the record, l'm gonna say: ''Voulez-vous jouer ce disque?''
'Voulez-vous, will you kiss my dick?'
Will you play my record? One-track mind!

Offline Front-Ranger

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Re: On Caregiving
« Reply #366 on: January 25, 2019, 04:52:33 pm »
Next I'd like to say a bit on the subject of technology. All technology, most notably her phone, frustrated my dear poor mom terribly. Whoever decided that only small black buttons, labeled simply with cryptic arrows or 3-pt. type, should be used on all electronics, while the case itself is also black? Steve Jobs, I suppose. He of the black turtleneck. It's a pity he didn't live long enough to be confounded by his own designs. Sometimes Mom would get so frustrated with her TV or cassette recorder that she would just start randomly pushing buttons, and more than once she threw her phone across the room.

I am no technical wizard, but I had to become one because, of course, no one else in the family had the time, patience or interest. I was especially keen to keep mom's phone working because if I didn't reach her, after a couple of hours I would have to get in the car, go over and find out what she was up to (or down to). The assisted living staff were of little help. If I called them, they would go knock on the door and say, "please call your daughter." Mom would answer, "Okay" and then promptly forget to call me. Or they would put a note by her plate at the next meal. If I met with the manager to voice my frustration, it would have a temporary effect until the next shift change. I think many staff people thought, "Why doesn't she just leave her mom alone, like most people do."  :'(
May 2019 be better for us all.

Offline Jeff Wrangler

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Re: On Caregiving
« Reply #367 on: January 25, 2019, 05:20:11 pm »
Next I'd like to say a bit on the subject of technology. All technology, most notably her phone, frustrated my dear poor mom terribly. Whoever decided that only small black buttons, labeled simply with cryptic arrows or 3-pt. type, should be used on all electronics, while the case itself is also black? Steve Jobs, I suppose. He of the black turtleneck. It's a pity he didn't live long enough to be confounded by his own designs. Sometimes Mom would get so frustrated with her TV or cassette recorder that she would just start randomly pushing buttons, and more than once she threw her phone across the room.

What kind of phone did your mother have? For some people I suppose it wouldn't matter, but they do make cell phones designed for older persons. My dad has one of these, obtained from his service provider, Consumer Cellular:

https://www.consumercellular.com/Products/901/Details

Of course I've seen my dad's phone, so I can vouch for the fact that the keys are larger than commonly on a cell phone.

But perhaps even this would have been beyond your mother's capability to use. Of course, this phone is no help for TV or cable remotes.

(And don't get me started on the so-called power "button" on the laptop I bought for use at my dad's.)
"It is required of every man that the spirit within him should walk abroad among his fellow-men, and travel far and wide."--Charles Dickens.

Offline serious crayons

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Re: On Caregiving
« Reply #368 on: January 25, 2019, 10:29:26 pm »
There are several more topics that I'd like to tackle here, such as the question of whether gum disease contributes to dementia or vice versa. I'm also starting to see a trend. . . my fellow BetterMostians seem to be more well informed than I was when I started the caregiving process. It's true that I was, and still am clueless to many medical matters, because of my lack of direct experience. So, would what I have to write cause the reader to say, "Duh!"

I don't think so. I already knew a little about that and yet I'm not saying "duh" because the concept surprised and intrigued me when I first heard about it a few years ago. I didn't write an article and I haven't seen one elsewhere. Which is not to say there might not have been some, obviously including the BBC one you linked. But I think you should look into it, if you're interested, because there probably haven't been enough. My understanding -- correct me if I'm wrong -- is that the connection involves inflammation and I don't think people fully understand what inflammation is or what causes it or why it would be associated with dementia and what people can do to avoid it.

You might try looking on NextAvenue and see what they've done on it. I would guess they've touched on it it at some point, but maybe not lately or from the angle you'd take, so you could pitch it to them.

The sad thing is there not many places publish stuff about aging.  NextAvenue and AARP magazine are among the very few, despite the 7 million boomers who are getting old. AARP magazine still pays $2 a word, I think, if pay is relevant to you. (That was the standard rate for a slick national magazine when I was in college, unadjusted for inflation, and now is beyond most writers' wildest dreams.)


Offline serious crayons

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Re: On Caregiving
« Reply #369 on: January 25, 2019, 10:46:24 pm »
Next I'd like to say a bit on the subject of technology. All technology, most notably her phone, frustrated my dear poor mom terribly.

Yeah, these days they have special gadgets for older people. There's some patronizing name for them, like GrannyTech or something.

Once I did a story for NextAvenue about two guys who had literally moved into a nursing home for a month so they could get residents' feedback on their Apple Watch-like device. A wristwatch that was intuitive and useful for caregivers. Those guys werne't condescending at all. I'm not sure whatever happened to their product.

Quote
Whoever decided that only small black buttons, labeled simply with cryptic arrows or 3-pt. type, should be used on all electronics, while the case itself is also black? Steve Jobs, I suppose. He of the black turtleneck.

Actually, I believe Jobs liked white for products. Which is why Macs, iPhones, etc., are usually white.  Personally, I hate it much more than black, partly because it looks dirty more easily and partly because I've just never loved white, that color/absence of color.

Has anyone else noticed that when a character in a movie or TV show opens a laptop it's invariably a Mac? That company must buy as many product placements as they can get. If even the villain opens a laptop, it will be a Mac. Unless the villain is technologically illiterate, in which case maybe Apple pays them to use a PC.  :laugh: