My mother is in assisted living. I am her daughter and power of attorney. She has dementia with Parkinson's and it came on very quickly. She also has constant UTIs and mental health issues. She really needs 24-hour care in a skilled nursing facility. I have hired a personal caregiver to come in to help at the assisted living facility. From what I hear everywhere is hurting for staff nationwide. It is sad. I am torn about whether or not to move her to skilled nursing. She may have less than 6 months. Hospice and caretakers have suggested if you can afford to keep her where she is maybe not move her. My mom's sisters are always complaining she should be home and are very upset with her spouse (my stepdad) for not taking her in. I am openminded that it's not for everyone and am more understanding. Also, due to her behavioral issues and being incontinent from the beginning, I understand it's not easy to have her home, even with someone living there 24/7 to help.

My stepdad does visit her a lot and is very emotional. Her one sister comes 1 to 2 times a week. The other is in New Jersey. She is on waiting lists for skilled nursing and I don't want to put her in a crappy place. They are trying to help, but it comes across like I don't know what I'm doing. I'm the one talking to hospice everyday, drs, caretakers and family. I'm doing the best I can. Suggestions?

So difficult for you. There is a joke about a car stalling. As the driver tries to start it, the driver behind him keeps honking the horn. The front driver finally gets out of the car, walks back and hands the key to the honking driver. His comment? "I'll sit here and honk, you go start the car." Honkers are everywhere in life. Their honking always seems to be in inverse ratio to their helping. Calculate the percentage of aid the person gives you in caring for your patient, give that percentage weight to any comments they have.
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Reply to Moxies
MichiganToOhio Jul 28, 2022
“Honkers are everywhere”

I love it. I’m gonna use this lol.

so very, very true
Unless your aunts, moms sisters, want to step up to the plate and take over her care & management, then they need to BUTT OUT and either be totally supportive of you or keep their mouths shut. The Armchair Critics do nothing but point out what WE are doing 'wrong' while they are sitting in their armchairs doing nothing but clucking their tongues. Ask them what THEY are doing to remedy this situation?? Oh, nothing? Then zip it. I'd ignore their phone calls and when you see them face to face, tell them what you told us: that you are doing the best you can, you have your mother's best interest at heart, that they are only seeing a SMALL PORTION of what's really going on here, and that what you NEED from THEM is support, nothing else. That you will not entertain anything else from them now BUT support b/c you are at the end of your rope here, emotionally. Kapish?

I'm with you as far as not moving mom to a SNF at this point. I was in the same boat as you with my dad when he was close to dying; he had an inoperable brain tumor. So he became a 2 person assist in Assisted Living and too much for them to handle, so they wanted him to leave and go to Skilled Nursing. BUT, mom lived with him in the ALF. So that would have broken his heart, to be split up from her. So I brought him to the ER for a final MRI; the docs said his tumor had grown and they gave him 3 months to live. Suggested hospice at that point. Which is what I did: I brought hospice on board which was an extra layer of help at the ALF and they agreed to keep him until death. So, together with hospice, dad had a lot of care and was able to stay at his ALF and I did not have to move him to the SNF after all, thank God. I'm not sure if you already have hospice on board, but it sounds like you do. That extra layer of help, support and supplies is huge.

In reality, bringing mom home isn't going to accomplish anything. On paper, when your aunts are feeling emotional, it may sound like 'the right thing to do' but in truth, what WILL it do? It will nerve step dad up even more, and decrease her level of care! Nobody will be there to step in at a moment's notice to pinch hit for her, as they are in AL, and very few of us are equipped to handle end of life situations alone at home. My mother lived in Memory Care AL for almost 3 years before she died this past February. She was on hospice for just over 2 months before she passed. Had she been home with me, I would have been beside myself with fear and worry b/c she was bedbound for the last week of her life. I sat with her for most of that last week, and was jumping out of my skin with the horrible noises she was making! Thank God hospice was there to tell me what was happening to her. To talk me off the ledge.

I'd keep mom where she is, with hospice on board, and continue to do the best you can. Nobody is an 'expert' at end of life times, at least none of us laymen and daughters. Emotions run high now and that's what you're seeing with the aunts. Come together now, all of you, and combine your efforts for mom's sake.

Best of luck and Godspeed with all you have on your plate.
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Reply to lealonnie1

To give a sympathetic nod to the aunts, it's their sister and they're helpless to do anything to make her situation better. They're desperate for something that'll change her condition, and it just isn't possible.

Be understanding, but tell them exactly what you said at the end of your post -- you're the one in communication with all the people caring for Mom, and you're doing the best you can for her. Don't apologize that you're "only" doing your best, because it implies someone might be able to do better and that isn't true. You ARE doing the best for her, because you have the most information and the most experts to advise you. You, too, are sad at Mom's situation, and if you could make it all better, I'm sure you would.

If the aunties don't back off, then tell them more forcefully to gab amongst themselves, but their opinions to you are no longer welcome. They aren't making your job any easier, so tell them.
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Reply to MJ1929

Good Morning,

Half of the country is in your "our" situation. After the Pandemic, this is now a street sign on every corner advertising for LPN's, RN', you name it.

The long-time nursing staff are completely burnout out from the ordeal of Co-Vid.

Bottom line: I don't want my mother in a crap box either. The "elders" who are offering "advice" are "older" and basically are unable to provide care under this declining diagnosis.

From what you say, mother needs skilled care and you are not getting any backing. The stepdad is probably not in any shape to do what you have been managing. Some people are just not cut out for this.

Speak with the PCP. Everyone I know wants to remain at home, basically die at home. Sometimes wishes can be granted through hospice and family assisting with around-the-clock care. Other times, it's just not doable. You have to do what is best for your situation.

I will pray for you...
Helpful Answer (7)
Reply to Ireland

To put it bluntly, you tell your Aunt her opinion in this situation is not needed or even matters. Unless she is offering to take on 24/7 care for your mom, she needs to butt out.
Helpful Answer (6)
Reply to lkdrymom

Those people who don‘t understand or don‘t want to understand but are first to offer advice need to stop that.
My husband has Parkinson but no dementia and often people offer advice. Evan though not much will get me upset, the ones that make me feel like somehow I am responsible or I can do better, for example, why don‘t you try so and so for your husband? Without realizing he went thru every test, specialists, everything! 2 surgeries February this year in different country staying in hotels, hospital then rented condo. On my own.
I respond to most of those advisors talk to me once you are caregiver for at least a year!
I am sorry about your Mom, looks like really fast progression which is unusual for PD form what I umderstand.
I think you are doing just right.
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Reply to Evamar

Don't you just love all of the unsolicited advice from family. Unless her sisters are willing to take her in, give up their own lives and be available 24/7, they don't have a say. Caregiving is extremely hard and it sounds like your mom needs the care of professionals who are trained to deal with dementia and Parkinson's. Not only are the facilities having issues getting staff, but so are folks at home trying to find caregivers. Sometimes its just not feasible for someone to die at home. Has she asked to die at home or is this just her sisters projecting what they want? Unless the place she is in is dangerous and they are not taking good care of her, I would leave her where she is and continue to stay on the waiting list for the skilled nursing facility. It's bad enough that guilt plays a role in almost every caregiving situation for one reason or another....don't let her sisters add to it. You and your step dad are taking care of your mom and getting her the care that she needs.
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Reply to Jamesj
Amyfitness Jul 29, 2022
thank you! She has always wanted to be home.. I understand my stepdad can't do it and honestly hospice has even said home due to her all her problems isn't the best care for her.
Can your aunts take better care of your mom than the Assisted Living facility that I am sure you carefully chose and toured prior to getting mom there? If so let them care for her. They can go to the AL daily and help, you can pay them what you pay the caregiver. And if after a month they still think they can do a better job then they can take her home. The only reason I present this is it will NEVER happen.
"YOU ARE DOING THE BEST YOU CAN" No one can ask more of anyone than that. As long as you can put your head on the pillow at night and say to yourself "I did the best that I can for mom" then you can rest easy.
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Reply to Grandma1954

PG Wodehouse says: "it's always the same with aunts. Sooner or later, out pops the cloven hoof."

They think they are being devoted and caring towards their dear sister. They are actually being impractical and nonsensical, not to mention pests. I am sure you have been patient and forbearing with them, and I am sure you would wish to be, but it may be that the time has come to say the equivalent of "if you have any sensible suggestions to make they would be very welcome. If you must go on offering counsels of perfection and talking twaddle, I'd rather you kept your opinions to yourself and didn't hurt my and my stepfather's feelings for the sake of it."

You have enough on your hands without having this pair to worry about, so do your best not to worry what they say. Can you find something genuinely useful for the frequent visitor to do? - it might cheer her up and shut her up at the same time. I don't know what - take charge of the laundry, exchange library audio books, that kind of thing: little tasks that are helpful but that she can easily manage.
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Reply to Countrymouse
Favegirl1 Jul 28, 2022
Sorry if I’m being facetious but your PG Wodehouse reference made me laugh. My Dad loved his books, I’m sure he had every one ever written. On a serious note though and more relevant, I don’t really have family members that complain about how I care for our father, they just don’t do anything except maybe come and visit a couple of times a year.
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Having dealt with this situation with my aunt making us all miserable by complaining about care choices for my dad, I can tell you what I SHOULD have done. I thought she was one of my best friends so couldn’t bring myself to do it, and I’m non confrontational. But I should have nipped it in the bud and not allowed the criticism, talking behind my back and incessant demands to go on. If only I had told her off! Our “friendship” didn’t survive anyway and I became aware of aspects of her narcissist personality that I’d shoved under the rug before. So my advice is to stand up for yourself and don’t wait for later. You’ll save yourself a lot of anguish that way.
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Reply to Fawnby

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