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When To Take Mom Out of Her Home

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Unread 04-24-2012, 11:57 AM   #1
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Confused When To Take Mom Out of Her Home

My mom is 85 this year and exhibiting increasingly demented behaviors. She has caregivers around the clock now, but I just found out that the overnight caregivers have NOT been telling us what she's really like at night.

She does not sleep. She sits up until 4:00 or 5:00 in the morning because she is insomniac, and is afraid to go to her bed. She feels "trapped". She dozes in her chair for 20 minutes at a time a few times a day, but never rests.

If the caregivers try to encourage her towards bed, she gets angry and thinks they are "controlling" her. She retreats into a posture similar to a 5-year old who doesn't want to be told what to do but doesn't really know what's good for them.

She sits in her chair and takes her clothes off for no reason. She complains that her undergarments don't fit right.

She is now refusing to eat regularly, there is something "wrong" with everything that is presented to her. "Too wet, too dry, too early, too late, I don't think I'm supposed to eat that". Then someone has to make her toast at 4:00 in the morning because she thinks she is nauseous, when in reality she's just starving.

My brother was living in the home with her,but 5 months ago he had a health crisis and ended up disabled in the hospital. Mom has gone badly downhill since hes been gone. He won't be able to come back home. I don't know if at this point having him home would make things any better since he wasn't really the "hands-on" caregiver anyway.

She is having panic attacks on an increasing basis. She will suddenly become very agitated, and start heading for the door of her house, feeling "trapped" and claustrophobic, or thinking her caregivers are somehow keeping her "prisoner". She will go out the front door, walk up and down her driveway, but still think she is "trapped". Escaping does not fix the panic.

She has multiple myeloma, vitamin deficiencies, protein deficiency, we suspect celiac (I have it, my son has it, one of my daughters has it). She also has a couple of tiny thyroid nodules (8 or 9 mm) and has borderline low thyroid hormones (T4 is .8, bottom of range IS .8). Osteoporosis. An MRI a couple of years ago, when this all started, revealed no strokes, no other damage in the brain, no atrophy.

An EEG revealed what the doctor thought were "micro-seizures". She was supposed to get the 3-day EEG, but at the time my brother was in charge and he never set it up.

What do I do?

Institution? Moving her to an institution will kill her. I live 600 miles away from her, but find myself in charge now. And very uncertain what to do next.

Thanks, if anybody has read this far.
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Unread 04-24-2012, 12:22 PM   #2
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Is your Mom on Social Security? Does she have the funds to maybe go into an assisted living facility? Who is in charge of her financially and otherwise?

Sorry for all the questions but we went through the same with my Dad. He wasn't challenged mentally but physically and he made me Power of Attorney for both financial and heal care decisions. Of course, I did what he asked but it was still hard having to be "the one" to make all the decisions.

I feel the frustration in your post and hope you have some kind of help with making these decisions. Sometimes it's hard to convince our elderly parents that we're trying to do what's best for them. You can also check with the local hospital and see what resources they have for elderly care with regards to dementia specifically. I never realized how much help is offered until I seriously looked into it.

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Unread 04-24-2012, 12:52 PM   #3
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Tough decisions to make, that's for sure.
If it some of it might be anxiety related, maybe her doctor would rx something to help with that part of it.
She may be having some sort of pain and not able to verbalize it.
Do caregivers think her clothes might be chafing or too tight?

Does she have any close friends nearby, or does she not socialize anymore?
I would help me to make a list of ideas and options for the future, and talk it over with her , is she able to reason things out still or not?
I don't know if moving her closer to you is an option or not?

One of my aunts got kind of like that in her later years, then one day just went to her final sleep. I had visited her earlier the day that she passed, but she was sleeping/dozing the whole time , but I talked to her anyway.

My grandmother got total Alzheimer's in her later years , her live in caregivers could not handle all care in her home at some point. So family did move her to a nursing home for her final years. She did not even know how to feed herself or remember anyone at all. But she was very easy going and cooperative.
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Unread 04-26-2012, 12:07 PM   #4
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I am so sorry you are going through this, my mom also had Alzheimers and multiple myeloma, I took care of her for a year and I know how rough it can be. How are they treating the myeloma, I think there are some newer treatments since my mom had it (she passed away in 2000).

Myeloma changes the blood chemistry and I think it makes any existing dementia worse, one thing that happens is red blood cells are crowded out by the cancerous plasma cells and that reduces the amount of oxygen to the brain which in itself can cause cognitive problems. Is she on oxygen and would she tolerate it if she isn't?

My mom had panic attacks too, I don't know if that is a characteristic of the disease, related to poor oxygenation, or the Alzheimers. She also refused to eat much, I gave her a 'dense nutrition' diet for awhile but eventually all she would take were things like a little watermelon that seemed to help the nausea. There are meds for nausea that hellp some.

Is she advanced enough to have bone pain and is she on medication for that? The medication can cause nausea and if she isnt on meds she might be having pain. Its really difficult to separate what behavior is due to dementia ( nighttime agitation in Alzheimers is characteristic and called 'sundowning') and what may be due to pain. Sometimes elderly people dont exactly know they are in pain and become agitated instead.

As I said, I don't know what treatment she is getting but I would ask the doctor about oxygenation and nausea and pain treatment and what the myeloma prognosis for the near future is. I had a hard time keeping O2 on my mom at first, she kept calling the provider and telling them to come and pick it up when I was in the shower, etc. but she did eventually tolerate it.

I'd hope you can move her closer to you as well but that change might be also be difficult for her. What is the doctor saying about all of this? Does she have a home health nurse? That might provide some insight too.

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Unread 04-27-2012, 08:43 AM   #5
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If she's a danger to herself -- injuries due to falls, fights/struggles with others, unable to distinguish between hot and cold foods or liquids, strays -- the placement is something I'd consider.

Is there someone who can convey and get it across to her that it's not appropriate to disrobe for no reason (in a way that she can understand)? I can relate to that; the person I'm caring for was doing the same in restrooms. The "logic" part of the brain doesn't work the same any longer.

Despite the condition someone is in, I still think, they also want to retain their dignity, so I don't "follow" in the stalls, etc., but do make sure nothing ill-will will happen.

When no longer safe to be at home, that's when I'd make the call.

Too, I would let the agency or facility (coordinating care) know that you really do need to be kept informed on how she fares with her care and her care-givers.
".... This world wasn't built for people in wheelchairs ...."

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