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Hello everyone. I’m responsible for my 93 year old mother who has congestive heart failure, stage 3 kidney failure, significant cognitive/memory issues, and probable colon cancer (no definitive diagnosis as she can’t go under anesthesia). She is in an assisted living facility that provides excellent care, though she has never been happy there. I’ve been retired 4 years, and 3 of those have been solely devoted to getting my mom into a safe care situation, taking care of finances, taking her to doctor appointments, selling her house, moving her across the country, shopping for her, and listening to her complain. She’s a sweet lady, but not above using the guilt card, and it’s hard to listen to the same complaints 50 times without taking it personally. I’m an only child, so no siblings to help with any of this. Mom has never seemed to realize the pressure involved in doing all this when I am only one person.


Two weeks ago, I got an urgent call from Mom’s doctor that an internal bleed was picked up on a routine blood test, and that she needed to go to the ER for a blood transfusion. You haven’t lived until you’ve spent 6 hours waiting in an ER with a person in her condition. By the time she was admitted she was screaming that she’d be dead by morning if I left her there. They had to give her tranquilizers to keep her there. After all that, there was nothing they could do except to take her off blood thinners. The transfusion seemed to make her feel better for about 24 hours. I have hospice lined up as I’m not repeating that experience for either one of us. She’s back in assisted living now and pretty stable.


I have been to visit once since Mom returned to assisted living, and I usually visit several times a week. I just can’t seem to get myself to go over there, but I sit in my house and worry about it, so I’m not really getting a break. I feel like my life has just been canceled. Does anyone else ever feel that way? Thanks for listening and strength to you all!

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Go and visit your mom at her AL. Go for an hour, it doesn't have to be an all day visit. You need a break too because it sounds to me like your nerves are pretty frayed. You've been in the caregiving situation for a long time and probably have burnout.
So many of us are the only caregiver to an elderly parent who is exactly like your mother. Even when there isn't dementia their expectation is that they must be the center of our universes. That our lives must revolve around their needs and wants the way the planets orbit the sun. The pressure they out on us is either given no thought or it is very much discounted. Then there's the incessant complaining, stubbornness, guilt-tripping, and fight-picking. The person having dementia does not make all of this any easier to cope with.
When my mother wanted to fight or complain and I ignored her which is what I normally did, she'd work herself up into a panic attack and ask me why I hate her so much.
I answered her honestly some time back that I didn't hate her. I dread her. And I most seriously do.
You need another person to carry some of the burden for you. Maybe your mother should be in a nursing facility instead of an AL. This would take some of it off of you.
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Go visit her. Part of your reluctance is dread, and once you go and see that it isn't as bad as your fears, I think you'll feel a little calmer.

I completely understand putting your life on hold. I've been on tenterhooks for seven years now, and our retirement plans to move have been postponed until Mom no longer needs me. I honestly thought that might be a couple of years after she first got sick when my husband was still working, but he's been retired a year now and here we still wait.
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Layne7 Jul 2021
Its only been a week since I’ve seen her, so I have a really good idea of what her condition is like. It’s just that I increasingly dread going. I even find myself driving more and more slowly as I approach her assisted living facility. I usually stay for a couple hours, and we have exactly the same conversation we always have. The one where she tells me how unhappy she is, how she doesn’t have any friends, or how upset she is about some imagined slight. Then because she remembers I was there for a brief time she will get in touch that night to tell me someone stole all her clothes. Or a homeless person was in her room. On and on. It just makes me so sad I can’t stand it lately. Sometimes I think she does better when I don’t go. Or maybe I just tell myself that. Anyway thanks for listening. Strength and love to you.
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Not visiting more than you can mentally handle is really okay.

Your mom is safe and well fed.

Take some time to take care of you. Acute care is DRAINING.
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Layne7 Jul 2021
Thanks for your reply. It really is. That hospital visit was so awful I actually feel bruised emotionally. Usually I’m a tough cookie, but for some reason that really got to me.
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I'm an only child too with a 94 y/o mother living in Memory Care Assisted Living. She loves to play the guilt card too, so I had a 'nice' chat with her yesterday about how much I'VE been through with her over the past 10 years and how I'm not putting up with it anymore. I'm sure I'll be repeating myself daily from here on out, but whatever. I don't deserve all this guilt and neither do you. People think, oh, you 'threw your mother in Assisted Living and now you have not a care in the world.' What a joke that really is, isn't it? If I had a dime for every visit I made, every problem I handled, every item I had to buy her, every trip to the ER, the doctor, the specialist, etc, I'd be able to retire in Hawaii.

That said, I had no other choice but to take my mother off of blood thinners too..........that was in 2018. She had a small stroke shortly thereafter, nothing major, and no further problems since. She's still alive and well at 94.5 and her tongue is sharper than ever. She's 'nowhere near ready for hospice' is what they keep telling me and telling me, so that's that. Taking your mother off of blood thinners is not an automatic death sentence, although I don't know if the internal bleed issue was remedied with the transfusion? I do know that I've spent many, many, many 6 hour stints with my mother in the ER over the past 10 years, the latest runs were for horrific nose bleeds caused by the blood thinners, followed by her latest bout of pneumonia which had her admitted for a week and then off to rehab for 20 days.

Anyway, my suggestion to you is to visit your mother once a week and leave if/when she trots the guilt card out. Like I told my mother yesterday, she makes me feel like a 'bad daughter' when I've spent the past 10 years managing her entire LIFE for her and being constantly told it's not good enough. What's 'not good enough' now is her repeatedly telling me that, and I'm going to cut down my contact with her as a result. I'm not a punching bag and neither are you.

Wishing you the strength & the courage to say ENOUGH to your mother, too, and to set down some strong boundaries with her. Best of luck.
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Layne7 Jul 2021
Thanks so much for your reply. I appreciate your comments about assisted living - there is still a lot to coordinate and do even with their help. Mom’s condition deteriorated pretty rapidly a few years ago, and it was obvious she’d need that level of care. But I’m still responsible.
To answer your question I don’t know if the bleed has stopped. Probably not, but I’m sure taking her off blood thinners slowed it down. She had colon cancer and a bowel resection in her 70s, and since this is a GI bleed we’re assuming it’s back. But there was no testing for that, as no matter what they found they wouldn’t be able to repair it due to her chf and anemia. So we just wait to see what happens next I guess.
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I totally understand you not wanting to visit and the guilt that comes with it. In my mother's case, my two siblings and I do all we can for our mother, but she doesn't remember us doing anything so she feels lonely and abandoned despite our concerted efforts. I honestly don't know how anyone manages dealing with this on their own, so I give you a lot of credit. You have assured your mom is safe and well taken care of, so if you need to take a break, you should. It is the toughest thing I've had to deal with, so I totally understand. I'm sorry I don't have solutions, but there are those of us out there going through the same thing, and we completely understand your feelings and empathize.
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Layne7 Jul 2021
Thanks so much for your post. It helps so much to talk with others in the same situation. Strength and peace to you and your family.
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