Dementia is a nasty bitch!!
May. 2nd, 2017 09:37 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
dame_eleanorI think I finally realized the depth of my mother's dementia, while at the doctor's office two weeks ago. When the doctor asked her who I was...she only knew I am her daughter, but did not know my name. Did not know my name. Take took a while to sink in.
TIt came as a bit of a shock, as she can seem really fairly "normal" if you catch her at the right time. Other times, she is completely dazed and confused. Nurse explained it to me that her personality is now more like a doily, than a tablecloth. It's still there, but with lots of gaps and holes.
She was unable to draw a clock face, say what town she lives in, or provide any other information, including how old she was. Frankly, I was surprised that she did actually know her own name, if not her birthdate, or age.
But, this really brought home to me, how very vulnerable she really is. If gods forbid something should happen, when I am away, she would not even be able to operate the phone to call for help. :-( She mostly cannot speak clearly or well. She wouldn't be able to call anyone for help, if she needed to! That's just not supportable. And no...she wouldn't use one of those alarm button things. She'd lose it, and wouldn't use it even if she needed to.
Her sleep cycle is completely out of whack, which is typical for moderate to severe dementia, according to what I have read. She sleeps all day, gets up in the evening when I'm home, to have dinner, watch a little TV and then go back to bed. Not much of a life for her, but there is not much else I can do for her. She takes no real joy in anything.
Then there have been the nights when she's up at all hours, turning all the lights on, the radio, TV and such, in every room at 2:30AM!!! She unlocks all the doors, and once or twice, I have caught her halfway out the front door! She says that "someone is coming for her", she "has to go home to her husband and children" and all manner of other strangeness, which is very disquieting.
The other night I found her rummaging in the freezer at midnight. When I asked her what she was looking for, she said "a cigarette!". She hasn't smoked in nearly 20 years!! WTF?
As I have to try to keep a normal schedule, having her up prowling around makes me extremely nervous. I am unable to sleep, when she has these "night terrors"...or whatever you'd call it. So, I put her back to bed...in an hour or two, she's back up again!! Oy!! One night, she was up on at least 5 different occasions!! Finally, it was necessary for me to lock her, in her room, just to ensure she didn't wander off in the middle of the night. Not ideal in any way shape or form!
She also is not really able to take care of herself. She refuses to bathe, or to wash her hair. She won't do it herself unless I really get angry and insist, and she won't let me help her. She won't even allow me to get her any "assists", like a shower chair or a walker to make her more stable. She fights me on every issue.
Frankly, I am worn out. Emotionally and physically exhausted.
Her doctor and other friends, suggested I contact DSHS. The case worker will be coming out on the 18th to do a consult, and we'll see what can be done. We discussed in-home care, but that would only be a couple of times a week, and it does nothing to address the night time issues, which are the most troubling.
It seems to me, that she would best be served, by being in an assisted living situation, which is what her doctor suggested. I can't personally afford that, so I am hoping that Medicare/Medicaid will help out. I am told they can, and might.
When I told her, she hit the ceiling, belllowing, "How DARE YOU??". Well, as I am the responsible adult here...that's how I dare. I expected that reaction, but am hoping the good folks at DSHS will know better how to deal with this.
This is all very emotionally wrenching, and I am hating every single moment of it. I am not asking for sympathy, or even advice. Two years ago, I saw this coming down the track, and took care of things like powers of attorney, and wills and so forth. Thank gods!!
I just wanted to give my friends a little better understanding of what is going on in my life, because then you will perhaps understand why I am absent from so much of my SCA life...and life in general.
I am praying that DSHS can help me with this, and that any transitions go smoothly with as little upset as may be.
On the one hand, I feel guilty that I might have to move her out of her home with me, and into a facility somewhere. But I don't know what else to do. I am not a young person either, and I don't have the skills or the ability to tough this out, in my own home.
For more than two years now, I have had to curtail anything that keeps me away from home, in order to be here with her, to make sure she gets fed and watered, and that she is safe. I love her, but this is not making me happy! I shouldn't I know, but I feel guilty anyway.
It seems as if all my life, I have had to take care of her...her drinking, her divorces, her endless issues, and even the loss of a child, who was more mine, than her's. Frankly, I am just tired, and I can't do it anymore. This makes me sad. But resolved.
Hurry up, 18th of May!! I need you. I will let you know what happens.
Thank you all, for listening. I will not belabor you with more of this. But it feels somewhat better to share my load with you... Thank you for listening.
TIt came as a bit of a shock, as she can seem really fairly "normal" if you catch her at the right time. Other times, she is completely dazed and confused. Nurse explained it to me that her personality is now more like a doily, than a tablecloth. It's still there, but with lots of gaps and holes.
She was unable to draw a clock face, say what town she lives in, or provide any other information, including how old she was. Frankly, I was surprised that she did actually know her own name, if not her birthdate, or age.
But, this really brought home to me, how very vulnerable she really is. If gods forbid something should happen, when I am away, she would not even be able to operate the phone to call for help. :-( She mostly cannot speak clearly or well. She wouldn't be able to call anyone for help, if she needed to! That's just not supportable. And no...she wouldn't use one of those alarm button things. She'd lose it, and wouldn't use it even if she needed to.
Her sleep cycle is completely out of whack, which is typical for moderate to severe dementia, according to what I have read. She sleeps all day, gets up in the evening when I'm home, to have dinner, watch a little TV and then go back to bed. Not much of a life for her, but there is not much else I can do for her. She takes no real joy in anything.
Then there have been the nights when she's up at all hours, turning all the lights on, the radio, TV and such, in every room at 2:30AM!!! She unlocks all the doors, and once or twice, I have caught her halfway out the front door! She says that "someone is coming for her", she "has to go home to her husband and children" and all manner of other strangeness, which is very disquieting.
The other night I found her rummaging in the freezer at midnight. When I asked her what she was looking for, she said "a cigarette!". She hasn't smoked in nearly 20 years!! WTF?
As I have to try to keep a normal schedule, having her up prowling around makes me extremely nervous. I am unable to sleep, when she has these "night terrors"...or whatever you'd call it. So, I put her back to bed...in an hour or two, she's back up again!! Oy!! One night, she was up on at least 5 different occasions!! Finally, it was necessary for me to lock her, in her room, just to ensure she didn't wander off in the middle of the night. Not ideal in any way shape or form!
She also is not really able to take care of herself. She refuses to bathe, or to wash her hair. She won't do it herself unless I really get angry and insist, and she won't let me help her. She won't even allow me to get her any "assists", like a shower chair or a walker to make her more stable. She fights me on every issue.
Frankly, I am worn out. Emotionally and physically exhausted.
Her doctor and other friends, suggested I contact DSHS. The case worker will be coming out on the 18th to do a consult, and we'll see what can be done. We discussed in-home care, but that would only be a couple of times a week, and it does nothing to address the night time issues, which are the most troubling.
It seems to me, that she would best be served, by being in an assisted living situation, which is what her doctor suggested. I can't personally afford that, so I am hoping that Medicare/Medicaid will help out. I am told they can, and might.
When I told her, she hit the ceiling, belllowing, "How DARE YOU??". Well, as I am the responsible adult here...that's how I dare. I expected that reaction, but am hoping the good folks at DSHS will know better how to deal with this.
This is all very emotionally wrenching, and I am hating every single moment of it. I am not asking for sympathy, or even advice. Two years ago, I saw this coming down the track, and took care of things like powers of attorney, and wills and so forth. Thank gods!!
I just wanted to give my friends a little better understanding of what is going on in my life, because then you will perhaps understand why I am absent from so much of my SCA life...and life in general.
I am praying that DSHS can help me with this, and that any transitions go smoothly with as little upset as may be.
On the one hand, I feel guilty that I might have to move her out of her home with me, and into a facility somewhere. But I don't know what else to do. I am not a young person either, and I don't have the skills or the ability to tough this out, in my own home.
For more than two years now, I have had to curtail anything that keeps me away from home, in order to be here with her, to make sure she gets fed and watered, and that she is safe. I love her, but this is not making me happy! I shouldn't I know, but I feel guilty anyway.
It seems as if all my life, I have had to take care of her...her drinking, her divorces, her endless issues, and even the loss of a child, who was more mine, than her's. Frankly, I am just tired, and I can't do it anymore. This makes me sad. But resolved.
Hurry up, 18th of May!! I need you. I will let you know what happens.
Thank you all, for listening. I will not belabor you with more of this. But it feels somewhat better to share my load with you... Thank you for listening.
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Date: 2017-05-02 11:47 pm (UTC)no subject
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Date: 2017-05-03 02:18 pm (UTC)Be gentle with yourself.
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Date: 2017-05-13 05:20 am (UTC)I hope that May 18 bring you hope and some acceptable solutions for the future. Thinking good positive thoughts. You are an amazing daughter.