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nanc512 Asked November 2013

Mom has early dementia, goes from hallucinations to being mean and insists she can walk alone. What can I do?

Once again, I am at a loss on what to do for mom, if I can do anything. She has been in a nursing home for 14 months due to frequent falls, very limited vision, broken pelvis, etc.. She constantly badgers me to come home, we lived together for nine years. She was to the point, she wouldn't get out of bed, wet herself and about quit eating. The doctor saw her, changed some meds and her eating has improved and so did her mood. All of my siblings have been here off an on for over a week. Sunday she was confused, called me three times crying to get her out of that place. We went back to see her that night and she was seeing all kinds of things. Monday she was very blah and confused. I went today, because I am worried about her. She was mean and rude to me. She says she is coming home by Thanksgiving, I need to find out why she has trouble holding her urine, she hates that place, and so on. I told her she can't come home unless she can walk alone and take care of herself.

She needed to go to the bathroom and insisted she can get up alone, walk alone, etc... I know she can't, her legs won't hardly move. I turned the call light on, the aid came in and she got mad I called for help. I know she can't do anything alone, but it's out of character for her to lie to me. Is it the dementia that is doing that? She did stand up with the walker and I told her to stand straight, she screamed at me and told me not to boss her. I left, it's so hard to listen to her. She has never been a nice positive person and is self centered, but today was horrible.

I know she hates it there, hates spending the money and having people tell her what to do. I have to have more patience, but this is upsetting to me. What can I do?

vstefans Nov 2013
You can't expect them to be reasonable when reason has gone.

I was sad when mom could not dial the phone any more either - she'd occasionally get me and she'd complain how hard it was to get hold of me. Once she even asked if I didn't answer the phone did it mean I was not there? I was even sadder though when she did not even really remember how to dial a phone and it just sat on her nightstand, plugged in, and I cancelled the phone contract but left it there so she would not get worried it was lost. She tended to just stop trying after a while if something was hard for her.

Another common one that happens is that they say the other family members who aren't visiting so much are "busy;" this can seem hurtful when you are the one visiting and/or doing all the caregiving, but again, from their perspective it is the semi-logical and mainly less emotionally hurtful conclusion or explanation for why the others aren't around.

jeannegibbs Nov 2013
Your brother was right. This is not at all easy! Dealing with a loved one who has dementia is difficult enough. Add in a high-maintenance personality and you are guaranteed a tough journey.

Dementia really does mess with the memory function in small and huge ways. If Mom says she doesn't remember her mean behavior, she probably doesn't remember her mean behavior, even if she can remember what they served for breakfast that day. Memory loss is not all -or-nothing.

Mom may have had mobility issues for a long time, but with dementia she can forget that for a brief or long period. She doesn't remember that her legs won't hold her. Many falls happen for just this reason -- the person with dementia doesn't remember she needs help transferring from the wheelchair to the bed. This is not a matter of stubbornness or pride or lying. It is a matter of memory loss.

If Mom says she sees a pumpkin on top of the television, she really sees it and believes it is there (hallucination). She is not lying. What she says is not true but she sincerely does not know it is untrue.

She is frustrated not to be able to successfully dial numbers. But, wow, wouldn't it be scary to face that you are losing yet another small piece of your independence? So she looks for another reason for the problem. Dementia very often includes an element of paranoia -- the feeling that someone is "out to get" you. So somebody must have deliberately messed up the dial. You got elected, probably because you've told her not to call you so often, or simply because she saw you most recently. When she tells your sister that you messed up her phone she is not deliberately telling something she knows to be untrue. It is like the pumpkin on the television -- it is not true, but she believes it to be.

For your own well-being, leave when she gets nasty to you. But don't expect her to learn from this or to remember it tomorrow.

Best wishes to you! This is going to be a bumpy ride.

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nanc512 Nov 2013
The mean streak comes and goes now, but she says she doesn't remember. They tested for a UTI, but they think it's just the dementia. Not out of character for her to be mean or rude, but out of character for her to lie. She called me yesterday looking for my dad (he's been gone for 9 years). She can't see to dial the phone, but she tries all day long and gets wrong number or a beeping sound. She told my sister, I messed with the phones just to make it so I don't have to talk to her. She has always been very high maintenance and self centered. My brother was a mental health provider and he says with her personality and dementia, he feels she will be difficult. I just have to leave when she gets mean, I tell her why I am leaving, but the next day she doesn't remember any of it.

jeannegibbs Nov 2013
Hallucinations can be part of dementia. They also can signal a urinary tract infection. I would think that the nursing home would test for that, but if they haven't that is the first thing I would insist on.

If it is out of character for her to lie to you or to be rude to you, it is most likely the disease -- a uti, dementia, pain, etc. -- that is causing this. Knowing that and repeating it to yourself often may help you have patience.

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