A slightly different type of problem for me: Lowering my quality of life.
I am running into a problem that I haven't read about before on the group. It is not a serious one, but it is lowering my quality of life. In the last couple of months my mother's "territory" has grown, so that she is occupying the whole house outside my rooms. She stays awake until late at night, going between her bedroom, the bathroom, and the living room. She wakes early in the morning before the rooster crows, has her breakfast, then curls up with blanket and pillow on the couch. She sleeps until after 11:00 normally. I feel like I have to stay out of the house until she is ready to get up. If I tell her it is time to get up, she'll say she doesn't feel good today. She is saying that every day.
I normally sit on the couch and talk to her while we have breakfast. I have breakfast in my room now. I used to sit on the couch as my place in the house, but feel it is her bed now, since she is in it a good bit of the time. She also "owns" the other three chairs in the living room. Sometimes it feels like she is marking her territory and leaving nothing for me.
When I am doing things, she often gets up and walks very slowly to do things. Often if I need to go down the hall, I have to walk slowly behind her. Sometimes it seems she does it on purpose, though I don't think she does.
Last night was a new one. I have a certain time when the bathroom is mine so I can shower and do things. We have only one bath that has a shower. She stayed in it for an hour last night during my normal time. It was no problem, since I just shifted my time. But it made me wonder why she is taking over everything that was mine. She has dementia -- no questions about it -- so I don't think she plans these things. Still it happens. It doesn't do much good to reason with her. She'll just get angry and offended, then probably forget what we talked about. I am starting to wish I lived next door and not in the same house. It is like my space is shrinking faster and faster.
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When my husband was first sick we put up grab bars, removed scatter rugs, re-arranged furniture, did things with locks and monitors. And I distinctly remember the feeling, "In order to keep my husband out of a nursing home, I'm living in one!" I certainly didn't say it out loud to many people, but I went through some resentment over my changing quality of life in my physical surroundings. I adjusted and got over it. A few years ago I completely remodeled the room I use for an office (I work from home) and now I'm at peace with my surroundings again -- no grab bars in here!
So, I think you are right. This is a blow to your quality of life. Recognize it. Mourn it. Make whatever practical adjustments/compensations you can. Move on.
This is a good place to vent about it. We understand.
Maybe put a couch/love seat and a TV. Privacy is a real concern when it comes to caregiver burnout, you need your own space. I don't want mom in NH because I want to spend as much time with her as I can, but I must have ME time. I hope this is a possibility for you.
I took a good break this afternoon, went out to lunch and to talk to some friends. That was a lot of fun. I'm glad that I'm still able to get away a good bit.
I don't think my mother is sundowning. It feels more like she has disintegrated into total disorganization. She argues with me a lot in a passive way. For example, today I closed out my father's Sears account. They sent cards to be activated, and he has been dead six months. We haven't used the card in three years now, so it was time to close the account. I told her I did and she got very upset. She said that now we didn't have insurance on our heating/cooling unit. I couldn't make her understand that it wasn't the card that was insuring the unit, it was the money we paid. (I paid it last year using the Master Card.) I had to distract her to calm her down. She didn't understand and didn't accept my "Trust me."
It is strange that I've been here three years and I still feel like an visitor (often more like an intruder). I do everything that needs doing and often have to face battles when I do. Personally I would prefer she do things, but I know she has gotten beyond the point of handling her affairs. I just do the best I can. I just wish I could be happier and nicer while doing things.
Would renting a storage unit be appropriate, to get all of Mother's things out of your rooms? You could even offer to take her to visit the unit once in a while, so she is reassured they are not missing ... just relocated. This might be a battle worth fighting. Having some space of your own has got to be a huge improvement over camping out among Mother's hoarding.
Do you really need to tell your mother about financial transactions? Certainly mentioning closing the Sears account was the most natural thing in the world, but now that you've seen the reaction, do you think it might be better for you to just do what needs to be done, and skip talking to Mother about it?
hope my mom's stories and my experience help in some way.
wuvsicecream, your mother must be a real character. My mother is a bit more generous. Sometimes she'll try to give me her awful looking old clothes. She tries to give my brothers things, too. We decline, of course. I've started using her need to give to my brothers. Sometimes they will take a few things from the house so they can donate them. She'll pitch a fit if I mention donating things, but she will give them to us. This doesn't work well if I get things, since I live here, but they can take things that need to go. I never asked them what they do with them. I hope they find good use. We never lie to her. I just ask if they can use this or that, and they accept when they think there is a chance someone might want them.
I've tried the "I don't feel well" with her on occasion. That doesn't work at all for me. She takes on the role of adviser and will offer suggestions on what I should do until it drives me crazy. I learned when I was a kid that the less information my mother had about me, the better. She will use anything I say as ammunition against me later. She worries very much about my health. She said she didn't know what would happen to her if anything were to happen to me. (Yes, it is okay to roll eyes here.) When it comes to my health, she starts obsessing, so I don't mention it very often.
My mother took over my bath time again tonight. I just pushed my time back later. It is weird and different, but no big deal. I feel better after writing about it to someone.
I realized this one day when the nursing home called me and told me they had to move my Mom into another room. Then when I went to see her and she was in the prior room, in her prior bed. The staff was baffled, LOL... as to why she was going back there. First of all.... the only reason for my Mom's 24/7 NH care "IS" "Cognitive Impairment Dementia"...HELLO.. STAFF!!!
~SHE CAN'T REMEMBER!!!!~...but she~CAN READ~....I noticed that Her name was never removed from the prior room. She thinks this is her room because that's where her name is.
So I educated the staff and I pointed out..."see her name on the prior room, that's how she finds her room." "She finds the bathroom the same way." I also noticed In the activity room (the main dining room where they entertain the residents, there is a board that says, the date, day of week, the season, a holiday, if it is a holiday. So I asked my Mom one day what holiday it was she read the board, so she could look like she knew on her own. It's funny she remembers to look at the board because the board is always there. So if your loved one can read and tell time this may work, but it has to be consistent and in the same spot. Routine is comforting when you are lost, think about it from your own view point. If you travel a road routinely and a landmark is changed or a detour is posted, you rely on the sings to guide you. Or if you have a day of the week off of work (holiday, etc.) you may feel a bit disorientated because it's out of the norm. have you ever had a Monday off and went to work on Tuesday and kept thinking it was a Monday.