She lives in an apartment in our house, and she goes to "day care" M-F, for about 4 hours a day. On the weekends, though, she doesn't have anywhere to go unless I take her somewhere or have her "over" (to my husband's and my 2 floors of the house). She has tons of books and newspapers and magazines to leaf through, a TV, and 2 cats in her apartment, so she's not in any kind of senior living hell hole - but because she has Alzheimer's, she can't really read very well anymore, and she doesn't tend to watch TV because she can't follow a show or tell the shows from the commercials.
Anyway, when I do have her over, she either starts an argument or asks incessant questions, making it impossible to work (I work from home and tend to work on and off, 'round the clock) or even to just watch TV. She can't just be quiet and be with people, she has to make herself the focus and make the same inane comments (about what she's wearing, the weather, where her cats sleep) and/or ask questions when she can't follow a show (I don't put on anything complex when she's over, but even a simple sitcom is beyond her now). This is a woman who used to know all the librettos for every opera ever written and could recite classic poetry. That's all gone, replaced by "I'm wearing 3 shirts, and with layers, you don't need a coat!" or "My cats share the bed, but they sleep on opposite corners!" or "Why is everyone driving?" when a car commercial breaks in on the show we were watching. If she gets even a whiff that she's asked the same thing over and over or that she's being a pain, she gets really hostile, and storms out in a huff.
So am I a complete bitch because I don't invite her over when I know she's downstairs with nothing to do? The guilt over not having her over is almost (but not quite) as bad as the stress of having her over, and I don't think it's fair to my husband to make her a household fixture, given how she can't just "blend in" and hang out. But I feel bad that she's alone and bored so much on the weekends. I see her for about 30 minutes in the mornings to give her her pills and again for her evening meds, but that's it. Right now, I'm debating whether to have her up and know she'll stay for 2 hours, or wait 'til later and she's sleepy and give her her pills then so the time together will be limited.
Thoughts?
If she did not have dementia I assume she would be living alone and alone at the weekends. It does not sound as though she is anymore content visiting with you than she is alone so don't fret it. Maybe you could do your grocery shopping on the W/E and take her with you. yes I can hear your protest but you would be spending time with her and hubby would be off the hook. Another alternative would be for you to go down to her quarters and spend time with her then you can leave when you like saving face all round. Maybe go down to help her clip the cat's claws or something else useful, sort some things for the rummage sale you get the idea
Also, from the degree of disorientation - forgetting where your front door was, and the safer route back to her own place - are you not getting concerned that she might be on the verge of going walkabout and getting lost? I think I'd want to put an alarm on her apartment's front door at this point, so that you know if she leaves at an unscheduled time.
To answer the main question, no of course you're not being horrible if you don't have her around your house all the time. You're trying to work! I can't work if there's a fly buzzing in the room, let alone someone who expects a response. It must drive you round the bend.
I wonder if you can pre-empt her coming by herself to your house by going and collecting her whenever it's a good time for you to invite her. Then gradually, instead of her coming out with you, you stay with her just for company purposes, so that she gets used to the idea that visitors come to her rather than her going out to see people. Would that be a start?
Re: offering to cook. When your husband's out, maybe instead of inviting her to join you, you could take dinner down to her and eat with her? Perhaps that would give her the idea of its being normal for her to be "waited on."
I think you might find spending more (what the advisors annoyingly call "quality") time with her less irksome if you say when and where. How is she with other people - friends, relatives, care/health professionals - coming to her home? Is she still recognising everyone reliably? If so, perhaps they could drop in for a chat too?
To repeat: you are not awful, your mother has pretty much the ideal set-up PLUS you have a life. Keep up the good work!
Veronica, she's enrolled with an organization that will provide in-home care as her needs increase, and ultimately, if she ever gets so bad that being at home isn't safe, she can go into a nursing home - but that won't be until she's essentially celery... if she can have in-home care in shifts, they'll do that before they'll "put her away" (it's cheaper to keep her at home, and they take her Medicare as their only payment, so they're very conservative with services) - and she doesn't have the money for a nice place to go to in the meantime. Right now, I clean her apartment during the week when she's at their day care (she won't let anyone clean, and she thinks she's doing it - if you imply she's getting any help, she goes ballistic, so I just do it "on the sly"), and I buy food she doesn't have to cook to eat for breakfast and dinner (she gets lunch at day care). I've offered to come down and cook for her, but she refuses. "I can cook! I made soup!" (her oven's been unplugged for the last 6 months, and she hasn't ever noticed or asked about it).
I sometimes do go down to her place, but when it's time for her meds in the a.m. and evening, she always wants to come up to my part of the house to get them. Tonight my husband went to bed early, so I invited her up (right after my post here) and due to the snow, I said she should come up through the front entry hall, rather than up the back steps (as she usually does). She had NO IDEA where my front door was. I was shocked that she didn't remember that she could go out her front door and through mine. When it was time to go, she had no idea how to get out of my house. It's amazing where the "holes" in her mind are. She knew all the words to the songs in The Sound of Music (and got VERY upset when she saw the swastikas in the last scenes, so she remembers what Nazis are), but she can't remember where my front door is.
We got along OK because I put on The Sound of Music, which prevented commentary and questions, and she didn't need to follow the plot to enjoy it.
my dad usedta think it humorous to drop by our house every sunday of his life . soon we found ourselves on the road somewhere hiding out from our own home every sunday. one day a week to call our own. whatta we gonna do ? nevermind, were going to sit home and listen to my dads religious delirium for two hours. its maddening and i still live with running him off but at least im still alive. he was smothering me literally to death.
ive written a hymn about it, goes like this'
hymmmn,
hymmmn,
F**K hymmmmn..
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