This question is directed at those of you who have one or both of your elderly dementia parents living in your home (in my case, my Mom pays a small amount of rent but the money is not my issue at all).
My mother is 76 and recently diagnosed with mild dementia. My father passed last year and she moved in with my family (at my dying father’s request). I have one brother and he is unwilling to take her in or help more than a few weeks a year. We turned our den into a large bedroom for her downstairs leaving my family of 7 (husband & 5 older high school/college age kids) a small living room and kitchen as our only spaces downstairs to live in. Mom has all the comforts of home in her room. She has a computer desk and her old kitchen table and chairs along with a television. Lots of windows and sunshine too. We had anticipated she would spend quite a bit of time in her “small comfy apartment”. That has not been the case:(
My mom’s only hobbies are to read the paper, smoke cigarettes outside on our porch, do word searches and look at the weather station (letting us all know the daily temperature a minimum of 25 times a day). The problem that we have found since she moved in with us is that she has decided to park herself at our kitchen table the ENTIRE day when not smoking outside. She sits facing all the doors so she directly facing anyone that walks in. She spreads out all of her word searches, dirty tissues (that she leaves directly on the kitchen table), pens, papers and about 6 seat cushions not to mention the large towel that she has folded up on the table to rest her elbow on while she’s doing the word searches. She leaves these items on the kitchen table 24/7 and does not put them away. When I try to put them away at the end of the day, she puts them back on the table and gets upset with me. It’s a fight I don’t wish to have with her so I try to pick my battles. The items don’t bother me as much as her constant presence.
My biggest issue lately has been that my children do not want to come downstairs anymore from their rooms. I am beginning to do the same thing. I’ve even noticed that my husband has been spending more time away from home. The reason they don’t want to come downstairs is because she is always sitting there ready to pounce on them asking them 50 questions and often repeated questions and questions with blatantly obvious answers just to say something. When I come into the kitchen to cook, she will then decide it’s time for her to come in and put away her dishes or even start making some random snack. When I nicely ask her to please give me space in the kitchen, she will tell me that I’m being mean and “ridiculous”. I’ve tried talking reason with her to please give me some personal space in the evenings to cook and be alone. When I come into the kitchen each night to cook….. she has forgotten that I have asked her to give me this time and proceeds to do the same things over and over each night. I am at my breaking point. She is not a mean person… although often can be negative and likes to point out things like how much I bought at the store when I bring bags home. She is very selfish and does not think about the needs of others..only those of herself. I realize that this is part of her disease but she was this way before too. I make dinner each night which I serve and often I will sit with her at the kitchen table to eat. I found that my kids and husband want to eat with us less and less:( I know it’s because of her.
I’ve tried my hardest to be nice to her. Sadly, I found myself getting angry and being short with her more and more. I feel like my personal space has been infringed and that my whole family does not want to be downstairs anymore because of her. What do I do? Do I tell her that she has to go in her room for specific hours of the day? Being that she doesn’t remember a whole lot short term …how would that even work? Is it wrong of me to want to have time downstairs in my kitchen?
You said you don't want to upset her so you pick your battles. Doesn't sound like you have put your foot down for any of her behaviors.
Learning how to not get caught up in the dementia loop means you aren't answering the same question 50xs. You grunt, shake your head, say we just covered that or something else. You don't engage with it. You don't give it any head space to frustrate you.
I'm not trying to sound rude but, your responses seem to shoot every suggestion down. This might be why your family is avoiding the situation because you are not hearing anything. It's like you can't look at the big picture and you are stuck on the kitchen table issue but, not willing to make any changes. That is frustrating for people. Kind of a quit complaining about something you refuse to do anything about situation.
Move her bed into the small room and take your den back. It's fine that her clothes aren't kept where she sleeps. Giving her the best common space and she doesn't ever use it is a waste for your family. Keep the table in there and encourage your kids to use that table, once it's the family space again.
You all are miserable with the situation as it is, you need to do something different, because 15 months being miserable is a lifetime. Your mom isn't the most important person in the house, you all matter.
OP meanwhile feels she can't leave her mom alone for one hour at an exercise class. So she'll be between this aide and mom trying to get them to be "friends" in mom's eyes. If she succeeds, what happens to Special Friend when it's more than doing puzzles.
OP should realize that the whole family besides her and mom have moved away from whatever inheritance carrot is being dangled here. The whole family already sounds like they're increasingly going to leave because there's no care plan. She can say she tries the aide to help with companionship, but that has to be followed by saying that when she can no longer toilet, or shower, or smoke appropriately outside, that's the day she goes into a home.
Which is coming. So why delay things? The Mom has money and seems like a natural extrovert. Why NOT give her a peer group of people?
???
You say your mom still recognizes all your family. She asks all these questions, talks about the weather and parks her stuff so that they'll talk to her, which they are increasingly not. From all you've said, your family feels mostly seething resignation.
She needs a peer group where she can do her puzzles around people who might be genuinely interested enough to have a conversation with her. People to whom every weather report is new news.
To me it seems you really do not have the space. She needs personal space, but not on your kitchen table. If there is no room in the house, try the senior center, the library, even a table of shed in the back yard. Give her functions and routine everyday besides word puzzles.
Now I'm noticing that my husband is "working" outside more and I'm staying in our bedroom more reading or whatever. Then she gets mad at us (him) for ignoring her. If she had her way, she'd have us sitting with her all day drinking tea and watching TV. She lived alone before she came to live with us, so I'm not sure why she seems to want to spend every minute with us now.
.
I'm thankful that at least my grandma-in-law isn't clingy, and content to zone out in front of the TV most of the time.
I don't have much in the way of advice. Just wanted to assure you that your feelings are valid, and it's absolutely not wrong to want your own space.
There is professional approach to at least minimize it.