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xinabess Posted June 2017

Guilt-o-rama.

I've been visiting my mom (who is at home w 24/7 care) 2-3 times a week. I live in NYC, so I spend a lot of time on the subway getting there and back. I was going to take her out to dinner tonight, but I'm not feeling well and am supposed to be going away this weekend.


I'm really the only one who visits her regularly and gets her out of the house. Her friends have passed away and other family lives far away. Her boyfriend visits every other week; he lives an hour and a half away and is 85 and my daughters see her when they can.


She is not the least bit interested in an adult daycare program, btw. So my visits are really the only thing that break up her week and she checks in with me all the time to review when I'm going to come.


So of course I feel guilty and like I should just force myself to go, even though I'm home from work today and feeling under the weather. I know many of us have been there. I just hate thinking of her alone for days on end. She has aides, but they don't really socialize.

Sunnygirl1 Jun 2017
It sounds like you have done what you can. From what I have observed, eventually some seniors, especially those who have cognitive decline, are not amused with activities. No matter how much we think something would be interesting, such as games, movies, outings, etc. their sensibilities don't allow for it. Will she listen to music? That's one thing most people still enjoy, regardless of their condition.  

I don't know what is ailing your mom, but, I would consider that it's something that you can't control or fix.(Getting her doctor to rule out a medical cause like depression.) Even if you lived with her 24/7, it wouldn't likely be enough. So, I'd try to be more pragmatic about your abilities. I suppose that I'm blessed, because I don't take on guilt, unless I deserve it. It sounds like you are working overtime to accommodate her. If she can't see that, then, there must be a reason.

xinabess Jun 2017
She doesn't want to go out with the aides, Pam. She likes them, but she doesn't care about going out to dinner in general. She wants to connect with her loved ones.

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pamzimmrrt Jun 2017
If she has 24=7 paid care,,have them take her out for dinner, You may want to offer to pay,, but it may be cheaper than you going several times a week , and when you don;t feel well. These should be people she feels comfortable with after this time. Don;t feel you have to do it all, let them pick up some of the work. Sounds like you are doing plenty!

xinabess Jun 2017
Thanks, Sunnygirl. She is always happy to see me, sweet and appreciative, so it's not that. It's tedious because we don't have much to talk about since she doesn't do anything. Paid visitors - ha! She would hate that so much.

She definitely has cognitive issues since the stroke. Her short-term memory is bad and she is convinced she can walk even though she can't. Something was going on before the stroke for sure. She was drinking a lot and depressed, more so after a mastectomy and then fecal incontinence issues (understandably). Anyway, I do what I can do. I told her I'm not coming today and she's sorry to hear that, but not mad or anything. It's just that pretty much her only pleasure these days is going to a restaurant and/or visiting with people. She won't even watch TV.

Sunnygirl1 Jun 2017
Is there any way that you can do what is reasonable and then just accept that it's fine? Are you trying to meet some unreasonable standard of care? Multiple visits to an ailing parent throughout the week, sound pretty impressive to me. I suppose that if your assume the role of her sole source of entertainment, support, communication, etc., you will likely feel overwhelmed. I don't think I would take on that role long term.
And if she is not pleasant with you and/or offer you positive reinforcement, no wonder you may not look forward to the visits.

If she refuses to go to outside daily activities, what about paid, professional visitors? They can be introduced to her in various ways, but, provide a highlight in her week that does not involve you.

With all the symptoms you describe, has she been checked for cognitive decline or depression? That could explain some of her behavior. My LO had similar behavior prior to her dementia diagnosis. Ruling out medical reasons for her forgetting things, neglecting hygiene, spoiled food, papers piling up, would be helpful, JUST SO YOU KNOW what you dealing with.

xinabess Jun 2017
Oops - meant to say that furthermore, before she ended up needing 24/7 care after her stroke, she was living alone in a very dysfunctional situation. She was not really able to take care of herself, but refused to get help. Food was going bad, papers and garbage were piling up, and she was neglecting her hygiene. As a result, she would make plans with us, invite us over, and then cancel - all the time. She just couldn't get it together and didn't want people to see how she was living. So part of me feels why should I bust my butt to get there when she was so inconsiderate for that period? Doesn't seem to help me feel any better, though.

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