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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?

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You should ignore all this criticism. You have enough to deal with, I know, I am caregiver to husband with advancing PD but no dementia, but there is about 40 plus symptoms associated with Parkinson, very frustrating and unpredictable. So we can only provide the best possible quality of life, which you are doing.
I do not tolerate any criticism and I am very outspoken about it, if I get armchair criticism I respond, don‘t talk to me until you are doing caregiving for at least a year!
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You are managing care for Mom according to her needs, with love and respect for her and her husband. No one can do better than that. May be the aunts are complaining because they fear for themselves? No one wants to think of themselves powerless to make decisions or take care of themselves, and they are in denial that this is happening to a sibling. The only thing scarier than watching the deterioration of a sibling is the thought that this can happen to you. All rationality goes out the window. Call your cousins (their kids) and ask them to help calm their mothers down. That really isn't your responsibility.
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well I can understand your anxiety and i can understand the sisters angst. I am 75 and sister of a 72 year old brother. My niece is 45 and wants my brother to go to a facility. I feel bad bc after all, he is my brother and I grew up with him. I love him in a different way than my niece. memories come into play when you get older and it's hard to see a sibling have to go "away". can you speak to the sisters and say you need help and nurses and if you can get that, maybe for a while your mother can stay put. I went thru taking care of my dad 15 years ago, he was stubborn and I was the one who had to deal with it mostly. so see if you can't come to some kind of understanding and agreement. God bless you.
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Tell your Mom's sisters are they willing to take her in, if they are, have them be at the AL for a week 24-7 so they know what they are getting into. ORRR, tell them you don't want to hear it and when they start, leave the room, if on the phone, say "I love you, must go, bye bye" and hang up the phone. You do not have to listen to them.
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I moved my mom, who has severe dementia and a physical disability, to a private care home where there are 4 other residents. She is well cared for there. I also have a private sitter for 8 hours a day to help out during the busy hours of the day. I did start out with 24 hour sitters but as she has adjusted, they are not necessary.
If this option is available to you, it might be worth your effort to check it out. Hospice and other providers will still visit your mother there.
As for the family members who want to get involved, let them know that you are making the decisions based on your mom's needs and wishes. Home is not always the answer, especially if it is going to cause additional stress on another loved one. As long as you feel good about your decision, so should they.
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Amyfitness Jul 2022
Thank you!
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Amyfitness: Armchair critics' advice isn't desired as typically the armchair critic persona wants to verbally tell the caregiver what they THINK they need to improve on. That's rich since they typically don't want to lift a finger in the actual CARING. If your aunts continue this complaining, ask them what they would like to contribute to since 'kicking up a fuss' is not welcome.
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They want to feel like they are helping and they are a part of your moms care. But you are in control so whatever you say goes. Doesn't matter what they say. Good luck.
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I never got along with family I no longer speak to them. They were all gold diggers. I still speak to my sister but that is it. None of what goes on is anyones business but yours. I do not have any of those problems. 😀
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Perhaps you can step back and offer her up to her sisters to take care of, wherever that may be? If you feel like a hamster, running on the treadmill, perhaps it's time to let someone else put on their track shoes. Let them show you how it's done, while you vacation in Europe.
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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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MichiganToOhio Jul 2022
“Honkers are everywhere”

I love it. I’m gonna use this lol.

so very, very true
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You are doing GREAT! Can you put her in a smaller Board & Care (like we did my Stepdad) with 24-7 private Caregiver (he had 2 per 24 hrs).. My Mom (Borderline-NPD-Early Onset Dementia) couldn't handle him at home. She was mean to him. She couldn't manage the meds. It was beyond sad that he couldn't be at home. My Mom saw him once but not again. Last she saw him was mid Oct. He passed Jan 1st. He was only in the 6 Bed Board & Care for 2 1/2 mos. Mind blowing, but end of day best place for him. We could visit him without her involvement. Couple times he was in skilled nursing, they were horrible. I never understood that place. He had a couple falls and had to be there before the B & C would accept him in, in Oct... You sure the Assisted Living w/Caregiver isn't OK/better?? Your system seems solid.
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Your stepdad knows your mother needed to be in a facility and that he would not be able to take proper cate of her. Unless your mother's sisters are stepping up to take your mother in, they have no ground to stand on in criticising anyone else for not doing the same thing.

It sounds like you are doing the best you can to keep her safe and comfortable. Keep that as your goal whether she moves to skilled nursing or stays where she is. Don't let her sisters make you feel guilty or inadequate. Be confident in the good choices you have made.
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Amyfitness Jul 2022
Thank you!
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They probably feel guilty that they srent the ones taking care of her. Remind them that you do what the Drs suggest, Mom is happy where she is ( and dont forget to let them know that mom has enough to deal with without others complaining).
You have POA. She has very little time. If they want to come and visit and make her more comfortable, talk about good things and help mom remember the good times, then they are welcome.
In the event that they do, and cause drama, you can get the nurses to help you set boundaries.
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I’ve been in your shoes and beyond. Ignore them. If they are not undermining you, you can choose to ignore their comments confident that you are doing what makes sense. If they undermine your efforts you’ll need to act. But if they are simply complaining you can establish boundaries to care for yourself and not take their invitation to debate, argue, or feel you have to meet their expectations. Anyone who’s not in the shoes of the primary caregiver hasn’t got a clue what you’re dealing with. They also have no right to make demands if they are not helping with care or medical decisions.
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Llike others here are saying, it's next to impossible to find good home care. We go through a local agency for my mom. One girl stole from us, another we called Meth Girl. 🤯
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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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Amyfitness Jul 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.
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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...
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The aunts are in no position to assist. They have no clue what you had to go through to get to the point where you are.

Since you are the POA, you state that the current situation is working and no one is going to be taken care of at home since home isn’t set up for the appropriate type of care. It would be negligent and cruel to do so.

They can talk amongst themselves but they can not interfere with the care being received.

Please be clear with them that you are not trying to hurt their feelings but your priority is to your mother and her comfort. They are distressed at the prospect of losing their sister but have no business interfering in her care, how you do it or where it occurs. That is why 1 person or maybe 2 at most are selected as POA. Your step dad can provide support if needed.
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Examine your logic. Consider all the factors. If there are gray areas, consult a professional. When you are content with your decisions, you've put on the armor. Perhaps explain to the sisters the reasons you have come to are in the best interests of your sister. Remind them in no uncertain, but kind, terms that this is about her and not them. It is possible your relationship will not survive this challenge. So be it. We can't control what others do.
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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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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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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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To me, it sounds like you have this under control, keep moving forward.

The aunt, well, she has no idea and I would leave it at that.

Good Job!
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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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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.
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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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MaddieMae Jul 2022
Leave it to PG Wodehouse to so succinctly characterize meddlesome aunts. I can only imagine what dear Aunt Agatha would say, Thanks for brightening my day.

Amyfitness, I eventually found a mantra that worked with my family. When the criticisms or "helpful" comments came in, I would pleasantly say: "Thank you for your concern. I will it take it under advisement." I repeated it every time (for some I had to be a broken record) and eventually the concerns and criticisms weren't nearly so forthcoming.
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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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You said it best in your 2nd to last sentence, when you said, "I'm doing the best I can." That's all any of us can do, and that is our best.
If you have family members that think they can do things better, you tell them to just step right up and take over her care. I would venture to guess that #1, no one will step up, and #2, you won't hear another peep out of them.
It's always easy for people on the outside looking in to give their unwanted opinions, but you have to remember that you're the one in control now, and doing very well with it all, and it doesn't matter what the rest of the family says or thinks.
So just keep on doing the great job you're doing. And if mom is under hospice care, when the time is near for her dying, they can have her brought to their hospice facility(covered 100% under moms Medicare)for her to pass there.
I wish you the very best going forward.
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