A slightly different type of problem for me: Lowering my quality of life.

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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.


Jessie~There are several articles on this site regarding "sundowning". This may be what is going on with your mother. Type sundowning in the site browser in the upper right corner of the page. Take mom to her dr., they may be able to give her some medication for this. It is a very normal part of dementia. You will need to set some boundaries and go about your normal daily routine regardless of whether mom is sleeping on the couch or not. You can't stay in the bedroom letting your mom have free range. Chances are she is not aware she is doing this to you but at the same time, you are living in that house too. Read the articles and if it fits, take mom to her dr. ((((Hugs))))!!
Jessie, I understand that your space is shrinking, and that it is a quality of life issue. I think it is very perceptive and healthy of you to recognize this. I hope you will find ways to live with it, or alter it a little, and get your space needs met in other ways. It's tough, isn't it?

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.
Is there an extra room you can make your own? And unfortunately, put a lock on the outside, maybe a push button combo lock so you don't have to use a key.
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 was thinking the same as "golf". Is there a room you can claim for yourself and keeo locked. I was also wondering if this behaviour is part of the mental condition your mum had before the dementia, but made worse by the dementia. As I recall she has always had some issues, and I don't think they go away once the dementia starts, but rather get mixed in with it. I think you have a very legitimate concern for your own needs. for space. Does she wander in to your bedroom? Would it be a good idea to put a lock on your bedroom door? Could you have your shower while she is sleeping on the sofa? What if you bought a chair and told your mum that it was your chair - just for you to occupy. I think if I was walking down the hall and a very slow person went ahead of me, I would sit down somewhere until the hall was free. Medication may help. My guts lead me to think that there is some piurposeful "obstructive" behaviour here, even if it is not totally. conscious. Could you soeak to her gently and say you noticed that you get in her way (or something tactful) and could the two of you work out a schedule for these activities. It smacks to me of attention getting behaviour, and it is escalating. I am not familiar with sundowning, but for what I gather it seems it is happening randomly throughout the day. It must be very aggravating. I think I would be ready to scream into a pillow, after a few days of that. (((((((hugs)))))))

Thanks, everyone. Sometimes in dealing, I don't know how much is me and how much is her. I have two rooms that I call my (and my rabbits') own, but they have her stuff in them. My parents had a terrible hoard problem when I came in. I cleared out living space and we almost look respectable. Still my mother acts like I'm asking to take out one of her vital organs when I try to clear some things that need to go. I choose my battles.It is hard for me to live this way, because I am used to a big bed and nice things around me. But then I think of other people who have nowhere to live and feel a little ashamed of my spoiled ways. There is a big double closet where I could hang all my clothes if I could get all of her old clothes out of there. How can one person occupy so much space?

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.
Yup. Just keep on doing the best you can, Jessie.

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?
JessieBelle Venting about this stuff is good for you it's better than keeping these frustrations inside. From a daughter of a hoarder with dementia I can totally relate. My Mother now in a NH thinks "everything" in the NH is hers. I consider her "basically as stable as can be" on her Meds and daily routine, but that hoarding and possessive over things, is better, but not gone. I must tell you though, she does remember what is hers, if she still recognizes something... I walked into the NH one day not even realizing, I was wearing a coat that was hers (for real) she tricked me and said take off your coat and stay, so I did then she distracted me and next thing I knew she was wearing the coat and said It's my coat not yours. She was right what could I say, I told the staff and they said good luck getting that back. My Mother is a fighter when she's defending her stuff. My keys My entire pay in cash was in the pockets and it was really cold out. So I said to her my cats need food and my money is in the coat I need to bye them food you don't want them to go hungry right?... It worked she took it off and threw it at me, and said fine but that's mine!! I was shocked but sometimes I know how to soften her. Prior to her facility days when she was at my sister's house she would tell my nephews to get out of her house when she was at theirs. Its funny you mention if she does things on purpose... my Mom would sneak out of the house.... she would act as if she wanted to nap, I would be like OH GOODY I can rest to.... then when I was thinking she was napping off she'd go. I found out after a year of this "stupid me" she went to a locked in unit, and during a visit whispered to me.. "I am going to pretend I am napping and when no one is paying attention, I'll climb out the window meet me outside." MY JAW DROPPED!!! She played thius game with me for an entire year!!! That's when I realized dementia and stupid were not the same. Then I learned to use the dementia to my favor. Like... I'd act defenseless and I need a caregiver if I acted as if I were sick she'd want to be my Mom again, if I acted like her Mom she'd resist. I'd say I need to rest I don't feel good can you care for me she'd give or do what I wanted. Just like when I was five and sick. Or when I was driving I'd pretend I didn't know where I was going. She gave me directions. Right or wrong she felt confident and in charge, she wasn't but she thought so. No two people are the same so you gotta work with the person you know. Routine is good if you get her on a routine it helps to to post it on a board, so she know what date it is and what is on the schedule for the day. Like breakfast at 7:00am then Morning show on TV at 10:00 etc. Good Luck
hope my mom's stories and my experience help in some way.
Jeanne, I decided the same thing -- that I don't need to tell her about financial things that will just upset her, such as closing accounts. My father always took care of business things, so she doesn't know how things work. I try to be transparent, so that everyone will know how I'm handling her money. But things like closing the account would have probably gone unnoticed by her, since I handle all the business. No point in upsetting her. I do let my brothers know what I'm doing, so nothing is a surprise later.

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.
JessieBelle My Mom is a character. I can't lie either unless it goes with her fantasies or I am just getting good at it. She used to say your lying, so I learned to not let her read my facial expressions or body language. Oh and be glad she wants to shower... my Mom told me her skin would fall off its too soft. One day I begged her to get in the shower I said you look a mess she said did you look at yourself, your a mess. when I did I scared myself...she was right, I was so worried about her I was forgetting about me. glad you feel better
Jessie~It is a hard situation you are going through. I like wusicecream's idea of a board with a routine. Changing your bath time is all you can do in this case. Maybe an afternoon walk will help to wear off some of mom's energy and she will be more relaxed and ready to sleep later.

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