Reluctant caregiver.

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I am one of three children; the other two siblings have moved away (I suspect to avoid having to help me take care of my mother). Since I'm single they said I should be the one to move in, so I did. I'm 50 years old. I don't blame them for moving away--let's just say we had a dysfunctional relationship with her. She never showed that she cared for us and basically ignored us our entire lives. She never had any friends, which we thought was odd back then (but now know why--she is not friendly at all). But that is another story. Now she can't live alone. I've been here a while and she constantly is asking me why I am here and is convinced she needs no help. She was diagnosed with dementia. I don't think I hate her (though my siblings say they do) but I don't really like her either. She is negative, crabby, and calls me names under her breath. I know its probably the dementia, though she has always kind of been like this to a lesser degree. I guess I have been feeling very resentful for having to be here. I know I could make her go to a nursing home, but I know there would be a lot of kicking and screaming on her part; would refuse. I suggested it once and she said there is no way she needs to do that and how dare I even suggest it. Even though I know she doesn't care about me, I still wouldn't want her to have to go to a nursing home, at least not yet. Things are actually not that bad right now - have my own room and keep to myself mostly--go out and check on her, make sure she eats, make sure she didn't leave the oven on, etc. I telecommute so don't have to leave her alone for 8 hours. She will repeatedly knock on my door and then forgets what she wanted, which affects my work a bit, but nothing I cannot handle. I guess my question is....I know dementia doesn't get better but does it ever stay stable? I don't think I can handle this if she starts needing hands-on care such as being incontinent or needing help bathing. I know she would not let me do those things, which is actually a good thing because I would not want to do them. We do not have a typical mother-daughter relationship. I have never ever called her "mom" or "mother". She never called me by my name--She just says, "hey you." And always has, even as a kid. Anyway, I guess I'm just looking for reassurance that she could possibly stay just like this or will she most definitely decline? If we had a great relationship and she was the kind of mom anyone would love to have, I'd do anything....but alas that is not how things are for me.....I would not be able to do any diaper changing, getting up all night if she starts waking all the time (now she sleeps 12 hours a night, a blessing actually), or needs help bathing. Has anyone's parent had dementia that was as I describe my mom to be now, or do they always progress to incontinence and worse?


You try to stabilize the personality with proper meds. It's important to know if she is depressed or bi-polar, because what works for one is not good for the other. She will definitely decline. She will definitely need meds. You need a long chat with her MD to decide how to tackle this. Incontinence usually starts with the bladder and can stay like that for many years. Once she cannot hold her bowel, you need a nursing home for her.
Akaheba, I felt like I was reading my own story when I read yours. I've been with my mother for five years now. We've never had a close relationship, so imagining helping her with diapers or bathing is beyond me. When I first moved here my father was still alive. I told my mother I wouldn't do yard work, bathing, or toilet things. She knows that I'll stay home with her as long as she can take care of toileting and showers, but will have to go to a nursing home if it gets too hard for me to handle. I stuck to the no-showers and toileting with my dad, even when it made my mother mad.

My parents were hermits. They didn't do anything really bad. They didn't do anything good, either. We were all just there. There is no real bonding among the family members. We are like polite strangers pretty much. It makes me feel like a space alien when I hear the affectionate ways people talk about their parents. I know it isn't my fault the way I feel, but it is still empty. I wish it were different. I'll continue to be here for her until she is unable to do the basic things. When it becomes too difficult, she will need to be in a NH.

Existence here is okay, too, but not very fulfilling. Wouldn't it be cool to have a loving relationship? I work from home, too, so it's not really an imposition to be here.
Sending you lots' of love.
Ak, get your mom to a geriatric psychiatrist for meds. Doesn't matter what you tell her, that's who needs to see her. What you are describing is mental illness. Meds can help. Hugs to you!
Hmm, I didn't get the feeling meds will help. I guess it is because I live with the same type mother. There is no medicine that I know of for a bad personality. :) If Akaheba's mother is like my own, she is sweet enough around other people, but avoids being around them too much. My mother is becoming nicer to me now than she once was. She still has her moments, though. Mornings are the worst.
my mom was ill with bipolar her entire life and far from a nurturing or cheery personality but the last year of her life was when we really got to appreciate and respect each other . we took a walk together that both of us werent coming back from . what started out as maddening for me became a challenge that i had to rise up to for my own satisfaction . it became a beautiful walk .
im taking that same terminal dementia walk with my aunt right now there is nothing that would deter me . ill take a second helping of that self satisfaction gladly .
JessieBelle hit the nail on the head.....I am sure those types of meds would not help her. It's just her personality...she's really always been this way....and I can't really talk to anyone about it because around other people (which isn't often) she is "so nice and sweet" as they say. If I told them how she was around me or behind their backs they wouldn't believe me. I do feel sorry for her though....maybe she had a bad childhood--I don't know, but she never talked to me about anything. I always got the feeling she did not want to have kids; we just happened to her. It's hard to describe to someone the feeling when a mother isn't outwardly abusive when we were kids. And now she depends on me for basically everything. I guess there's a lesson in there. Thank you everyone who commented--I can't tell you how relieving it is to talk to people who understand.
I always thought my mother didn't want kids. She didn't admit that, but did tell me that my father never wanted any. There was no love or warmth in the house at all. We all got fed, but then were left to fend for ourselves as long as we didn't bother them. If we bothered them, there was a lot of anger. It's not physical neglect. I guess you would call it emotional neglect. The message to the child was they must be unlovable if even the parent can't love them. Some children are able to grow past it, but others are snared. I thought I had grown past it until I came home. Many old wounds were reopened. The good thing about this was it gave a tremendous opportunity for spiritual growth. I try to keep my eye on that prize, though it's not easy on some days.
Akaheba, you have made a very challenging choice to do hands-on caregiving for a parent who neglected you as a child. I wish you well, and that you realize some spiritual growth from the experience, as Jessie says she does. Keep in mind that you can make a different decision at any point. Now you have certain parameters in mind -- no incontinence, no bathing, etc. -- but you can also change the parameters as time goes on.

About what to expect with her dementia -- you'll have to deal with it one day at a time. Dementia definitely gets worse. Always. But whether it stays at a plateau for a short while or a long while, whether the decline is steep or gradual, that is very hard to predict. Only time will tell.

If you can find out what kind of dementia her doctors think it is most likely she has you can do some research and learn in a general way what to expect (although not an exact timeline). That may be helpful

Knowing that there are some conditions under which you will not be her hands-on caregiver, I suggest you start looking into the care center possibilities in your area. I wouldn't spend a lot of effort and time on this (because you'll have to do it all over,say, three years from now) but get a general sense of what is out there, what it costs, how it is paid for, what admission criteria are, etc. Then you won't be starting from scratch if she declines rapidly.

As for drugs, my motto has become "better living through chemistry!" My husband responded extremely well to the drugs to address various symptoms of his dementia. BUT I'm afraid that I agree with Jessie. While there are drugs that can help with agitation, there are no drugs that heal a broken personality. I think it would be great for your mother to be seen by a geriatric psychiatrist and/or a behavioral neurologist, and there may be some specific help to be had. But I wouldn't get my hopes up for a transformed mother.

Welcome to the forums. I look forward to your participation.

Thank you Jeanne - I think I have resigned myself for any transformation on her part. If there is any transformation, it will have to be on my side.

Thank you for the suggestion that I look into care centers--I am going to do that soon, just in case things become too difficult.

Thanks ALL !

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