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?
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!
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.
I love it. I’m gonna use this lol.
so very, very true
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.
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.
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...
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.
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.
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.
The aunt, well, she has no idea and I would leave it at that.
Good Job!
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.
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.
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.
"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.
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.