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Old 08-27-2015, 05:50 AM
 
Location: Chicago, IL
511 posts, read 623,246 times
Reputation: 786

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Quote:
Originally Posted by StealthRabbit View Post
Hang in there, but don't hang ON to perfection / wellness / improvement. Accept the challenges each day and move on. Consider yourself being 'refined by the fire'... some of us have to get pretty HOT before the rough edges get smooth!. don't go there if possible
This is great and incredibly-hard-to-follow advice. We're caring for my mother, severe dementia from strokes, living in a memory care facility. She too was agitated a lot, and would try to get up from her wheelchair (but she's no longer able to balance or walk) and would roll out of bed -- phone calls about "falls" here, too. It's a restraint-free facility but her bed is against a wall and we signed for permission to use a bolster strapped to the mattress on the non-wall side (bed lowered as low as it will go when she is in it), and most of the time that works well. She also had spurts of great frustration coupled with surprising upper body strength and would flip the table that she sat at for meals in the main room.

If you or your MIL have the resources, one thing that has helped some is to hire a caregiver for a few hours per day (or a few hours per week) to come and get her OUT for a walk or at least a sit on whatever patio they may have there. The change of scenery really does seem to help alleviate the feeling of being trapped and bored. And when the weather turns bad, it even helps if the caregiver can just wheel her to a cafe on a different floor, or to sit in the reception/entrance area of the facility (accompanied at all times, of course) to watch people come and go.

It is awful, awful, and it seems like every week presents a new opportunity to learn how to let go of any notion of how things "should" have gone.
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Old 08-27-2015, 06:17 AM
 
Location: St. Louis, Missouri
9,352 posts, read 16,781,969 times
Reputation: 11458
Quote:
Originally Posted by Petite Jean View Post
Is there any way she could be strapped into the wheelchair? Would she fight it? For her bed can they use the rails on the side that hospitals use? Although she might climb over that too. Certainly the staff has encountered other patients who do these things. But you never know, maybe she would become combative with those restraints. I certainly hope a way is found to keep her safe and comfortable. Best wishes to your family.
Most won't even allow the seat belts to be fastened...... my mother was in an electric wheelchair for the entire 8 years of her time in a nursing home here..... a year or two in, she became obsessed with feeling secure and wanted the seat belt fastened around her... they couldn't do it and wouldn't even when I offered to sign any sort of permission slip they wanted....


Quote:
Originally Posted by KathrynAragon View Post
Whew, thank you. I can't tell you how helpful this thread has been to me. After some of the nastiness on C-D, your comments have all been so helpful, even if it's just to let me know that others out there can relate to and sympathize with what we are going through.

God bless each of you and your families. I mean it. This is a tough situation for all of us, in varying ways. But the heartache feels the same to each of us, I'm pretty sure.

I would have LOVED to have known about message boards when I was dealing with my mother's progressive, multi-infarct dementia, complicated by HORRIBLE rheumatoid arthritis throughout her body.... I ended up moving her here from South Texas when she told me in late 1998 that the only thing she had eaten that day was a peach because it was too much trouble to fix anything else.... she had help coming to her house a few hours a day a few days a week, but it wasn't enough..... and as it turned out, they weren't as honest as one would hope.... in retrospect, I believe she started having these problems as early as 1993 or 1994, but was able to manage and cover up for a while......

the slow, terrible slide can not be described unless one has seen or dealt with it.....
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Old 08-27-2015, 06:48 AM
 
Location: Wonderland
44,448 posts, read 35,909,090 times
Reputation: 62833
Quote:
Originally Posted by Gemini1963 View Post
This is great and incredibly-hard-to-follow advice. We're caring for my mother, severe dementia from strokes, living in a memory care facility. She too was agitated a lot, and would try to get up from her wheelchair (but she's no longer able to balance or walk) and would roll out of bed -- phone calls about "falls" here, too. It's a restraint-free facility but her bed is against a wall and we signed for permission to use a bolster strapped to the mattress on the non-wall side (bed lowered as low as it will go when she is in it), and most of the time that works well. She also had spurts of great frustration coupled with surprising upper body strength and would flip the table that she sat at for meals in the main room.

If you or your MIL have the resources, one thing that has helped some is to hire a caregiver for a few hours per day (or a few hours per week) to come and get her OUT for a walk or at least a sit on whatever patio they may have there. The change of scenery really does seem to help alleviate the feeling of being trapped and bored. And when the weather turns bad, it even helps if the caregiver can just wheel her to a cafe on a different floor, or to sit in the reception/entrance area of the facility (accompanied at all times, of course) to watch people come and go.

It is awful, awful, and it seems like every week presents a new opportunity to learn how to let go of any notion of how things "should" have gone.
Good advice.

Thankfully, the facility she is in does have a beautiful outdoor area and the residents are taken out there often. They even have a small vegetable garden! Of course, she is far beyond that but she does get outside just about every day.

Honestly though, she doesn't seem to even be aware of her surroundings at all, other than her hallucinations which are ongoing. I'm not even sure what she sees. She can't articulate any of it and doesn't seem to notice ANYTHING about her surroundings other than if there's too much light or if she's got a plate of food to tackle.

Don't even get me started on that! Let's just say it's sheer torture watching her eat, but we're really trying to allow her to do all that she can for as long as she can. And she often seems to resent when people try to help her eat, so we just make sure her food is cut up and manageable and then sit there and grit our teeth. We have to be sure to remove anything like an extra utensil or a napkin because she becomes fixated on them and will stop eating and instead will try to do something, not sure what, with whatever got her attention. She can't even eat off plates that have a border of color on them because she will start to try to "lift" the border instead of eating.
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Old 08-27-2015, 06:50 AM
 
Location: Wonderland
44,448 posts, read 35,909,090 times
Reputation: 62833
Quote:
Originally Posted by latetotheparty View Post
Most won't even allow the seat belts to be fastened...... my mother was in an electric wheelchair for the entire 8 years of her time in a nursing home here..... a year or two in, she became obsessed with feeling secure and wanted the seat belt fastened around her... they couldn't do it and wouldn't even when I offered to sign any sort of permission slip they wanted....





I would have LOVED to have known about message boards when I was dealing with my mother's progressive, multi-infarct dementia, complicated by HORRIBLE rheumatoid arthritis throughout her body.... I ended up moving her here from South Texas when she told me in late 1998 that the only thing she had eaten that day was a peach because it was too much trouble to fix anything else.... she had help coming to her house a few hours a day a few days a week, but it wasn't enough..... and as it turned out, they weren't as honest as one would hope.... in retrospect, I believe she started having these problems as early as 1993 or 1994, but was able to manage and cover up for a while......

the slow, terrible slide can not be described unless one has seen or dealt with it.....
You are so right. NOTHING in my life prepared me for this - and I raised five kids!
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Old 08-27-2015, 07:23 AM
 
Location: Chicago, IL
511 posts, read 623,246 times
Reputation: 786
Quote:
Originally Posted by KathrynAragon View Post
She can't articulate any of it and doesn't seem to notice ANYTHING about her surroundings other than if there's too much light or if she's got a plate of food to tackle.

Don't even get me started on that! Let's just say it's sheer torture watching her eat, but we're really trying to allow her to do all that she can for as long as she can.
This is where we are, too - watching her eat is really hard, but as long as she is still enjoying food (which is becoming intermittent), we're putting that in the "plus" column.

One thing that makes us laugh, though: For all of her apparent oblivion, her hand makes a beeline for dessert on her tray, first thing, with the precision of a viper striking. It's pretty funny how SOME things are retained as vital information: DESSERT FIRST. (We've told the staff that she is nearly 89 years old and suffering from severe dementia, and there is no reason on Earth that she cannot have dessert first.)
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Old 08-27-2015, 11:42 AM
 
Location: Wonderland
44,448 posts, read 35,909,090 times
Reputation: 62833
Quote:
Originally Posted by Gemini1963 View Post
This is where we are, too - watching her eat is really hard, but as long as she is still enjoying food (which is becoming intermittent), we're putting that in the "plus" column.

One thing that makes us laugh, though: For all of her apparent oblivion, her hand makes a beeline for dessert on her tray, first thing, with the precision of a viper striking. It's pretty funny how SOME things are retained as vital information: DESSERT FIRST. (We've told the staff that she is nearly 89 years old and suffering from severe dementia, and there is no reason on Earth that she cannot have dessert first.)
Oh, I totally agree - this is exactly how it goes with my MIL. The staff doesn't serve dessert till after the meal, but she goes right for whatever her favorite thing is - like a hornet. She may have some logistical challenges but she will scrape the plate clean of her favorite foods.

The thing that amazes me is that she drinks so little liquid. You cannot make her drink liquids. I swear I don't think she drinks more than 8 ounces of liquid per day, and I know know know know that's not enough. I'm pretty sure she's got basically a constant UTI which doesn't help her dementia symptoms at all - but it's just about impossible to get her to drink anything.
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Old 08-27-2015, 12:01 PM
 
Location: St. Louis, Missouri
9,352 posts, read 16,781,969 times
Reputation: 11458
Odd as it sounds, a UTI can exacerbate dementia.....
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Old 08-27-2015, 12:07 PM
 
Location: Wonderland
44,448 posts, read 35,909,090 times
Reputation: 62833
Quote:
Originally Posted by latetotheparty View Post
Odd as it sounds, a UTI can exacerbate dementia.....
Oh I know. But the thing is, she WILL NOT DRINK liquids - I mean, barely. Just a sip or two at each meal. I don't know how she lives, I really don't.
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Old 08-27-2015, 01:09 PM
 
7,781 posts, read 4,348,095 times
Reputation: 11533
Call me judgmental, but... My mother fell once and never again because I personally made sure she didn't... AT HOME... Facilities simply don't have enough staff (it would cost them too much profit) to ensure that every old person is accompanied every step of the way, which is what it takes unless and until they're confined to wheelchairs or bed 24/7, which is a short step from total disability and death.

Incidentally, the ONE time my mother fell, she incurred a subdural hematoma from it... They tried to dismiss it as Alzheimer's, but it wasn't... This injury is very, very common in the elderly and treatable (or heals on its own), but Alzheimer's is the new wastebasket diagnosis for any mental status change.

If she's in a facility, she's going to fall again. A broken bone or brain injury is simply a matter of time.
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Old 08-27-2015, 01:10 PM
 
Location: S. FL (hell for me-wife loves it)
3,160 posts, read 1,967,203 times
Reputation: 9652
They have cornstarch based thickeners that will help them to drink. And make sure they get cranberry added to their diet. It helped my FIL to not get the Urinary tract infections. The thickener got him back to drinking. We had to add sugar to the water (along with thickener) but it worked.
Believe it or not, Kool-Aid flavoring also helped.
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