What to do about sibling dispute about care for parent?

On what basis does doctor say she’ll decline in AL? I’ve seen it go either way. The doctor doesn’t have a crystal ball.

One of the pluses of entering assisted living at this point is that if the AL has a memory care unit, it’s easy to move her there when she needs it. And if she lives to severe dementia, she almost certainly will.

With moderate dementia, mom shouldn’t be making her own decisions now.

It is not uncommon for family members to disagree about this issue. Your brothers are free to try to persuade your mom to change her mind. You are free to express your opinions to your mom. I suggest that you make clear to her that you agree with her and that if she is uncomfortable with your brothers trying to persuade her to change her mind, she should tell them to drop the topic and tell you if they're getting on her nerves by pushing the topic.

I think both points of view (move to assisted living, don't move to assisted living) are valid. Because dementia is a progressive disorder, there might be a time when full-time care at home is not the safest or most affordable choice for your mom. Be prepared for your or the physicians' opinions to change.

Are they the ones proving hands on care and help when needed? That might be the reason.

It seems she'd rather her sons orbit around her and she doesn't care what impact this is having on them. Why can't she go back to having full-time care?

Being a person's PoA doesn't mean you give her what she wants automatically. Caregiving has to happen on the caregiver's terms or else resentment, exhaustion and burnout can occur. If you want to give her what she wants simply because she wants it (rather than arranging for what she needs and works with your brothers) then move in with her and continue to provide her care. When your Mom moved to the same state as your brothers, did you and your Mom assume what roles your brothers would perform? Or did they just not realize how needy your Mom was and now they've changed their minds?

Also, it's not really a dispute with them: they don't want to continue participating in her care and you can't force them. The problem is you and your Mom seem to be in denial and upset that they aren't doing what she expected.

More information for context would be helpful.

Even with full-time care in her home, she will get worse, much worse. Are your brothers having to step in when the multiple daily caregivers can't show up? Who is filling in? Who is scheduling all these caregivers? It must be at least 3 people coming and going each day in 8 hour shifts. Who is taking her to appointments, picking up prescriptions, cleaning her house, cutting the yard, grocery shopping, etc.? All of those tasks are a lot of work for anyone so if it's your brothers I can see why they want her to go to a nursing home. She needs that level of care. She will need round the clock care very soon. Please listen to your brothers.

Just because your mother can clearly state her wishes doesn't mean those wishes are appropriate. What about when she wishes to eat ice cream and candy instead of regular meals, or to go outside in winter w/o a coat, or for a stroll at 2am? Those things CAN and DO happen with dementia, I'm not kidding around. The doctor has no way of knowing how mom will react to managed care, so it's silly to believe he has a crystal ball. If your brothers are involved in moms care and no longer want to be, they cannot be forced. Mom's money may not last too long, either, with full time in home care.

Without giving details, you're looking for support to keep mom at home and for us to give a thumbs down to AL or Memory Care Assisted Living. Can't do that, sorry.

My mom can also clearly state that she does not want to be in a care home. She also believes the care home she is in is a recruiting facility for Hollywood. She said the helicopters land out back to pick up residents to take them for screen tests. There comes a time when a care home is the best place, regardless of what the loved one wants. My mom actually became healthier once we got her in a care home. She has three square meals a day, meds on time and lots of activities.

It sounds like you are now a distance from her, and your brothers are seeing her regularly. I would rely on their input. Being her POA does not mean doing what she says she wants. The purpose of having POA is to make decisions when she lacks the ability to make good decisions.

Why is it your brothers recommend that she go to Assisted Living now? What are they seeing that you are not?

What full time care does she have now? Are there caregivers around-the-clock?
What do those caregivers do?
Do you know that she can be in Assisted Living, and still have hired caregivers come to help her at "home"?

I don't know how the doctor can assess that moving to assisted living would make her decline. She will decline anyway. That is the nature of the disease. At some point, she will definitely need more care, more supervision, and living at home will be unsafe.

Having your mother's POA gives you the decision-making authority. My question is, why has this become a battle? Why do your brothers care so much? What is their reasoning? Do they see that your mother is unsafe or inadequately cared-for in her home? Or are you expecting them to step up and do more than they can, because they live there? Or do they think the full-time in-home care will cause your mother to run out of money sooner than she would in a care facility? What exactly has escalated this from a disagreement among siblings to a battle that is ruining relationships?

What can she afford? I might get the opinion of experts on the projected costs of care moving forward.

She IS in decline. Whether ALF will further that decline or actually help her cannot be known.
1. Why do the brothers want her to move to care?
2. Can she afford ALF? Can she afford in home care, which often cost much more than ALF.

If your mother can afford in home care, I don't understand what the problem is.
But in the final decision, she WANTS to be in her home and YOU are her POA. If she wants to remain there and is ABLE financially to do so, then I feel it is your obligation to HER as her POA to fulfill her wishes.

THAT is the simple explanation to your brothers. "I am sorry that we disagree, but mother appointed me, and she wishes to be in her home. As long as I assess the risk and management of her finances I will attempt to fulfill her wishes. I am HER advocate, not yours. I hope you can respect that, but whether or not you DO respect it is not within my powers of control". That's it. If the relationship is ruined by that, to be honest you aren't missing a thing in letting the bros go their own ways.

x

Thinking again about why Bs would prefer AL. It’s not just that they are the ‘backstop’ if carers don’t turn up. If M is in AL, she has company. If she is at home, they probably feel that they should visit her more often. AL lets them off more than one hook. You may be POA, but your choices are affecting them as well as M. Would you make the same choice if they were 1000 miles away from her?

M is choosing what is happening NOW. She is ‘at home’ and the Bs visit frequently. She likes that. Bs might prefer a weekly visit at most. At the moment their evenings are dominated by visiting M. M might not choose ‘home’ if it was just carers for company all the week.

No wonder that Bs are asking for AL. Your ‘decision making’ as POA is a lot easier than what you are expecting from them. It’s to their credit that they have a reasonable solution, and aren’t neglecting M.

Having in-home care might be the right thing for her....for now. Eventually, as dementia progresses, she will need more care and the topic of skilled nursing can be addressed again whether in- home or a facility. As a former CNA who worked in homes, nursing homes, etc ...I truly believe that letting a person stay in their own home for as long as it's safe and possible and isn't inconvenient is best if that's what they truly want. She will need more care down the road ....just let your siblings know that you are aware of that.

As her POA it is your responsibility to do what is best for her not what she wants. You cannot expect brothers to do it all

The POA's responsibility is to do what the person would do if the person were not incompetent to make her own decisions. It is not to "do what is best" for the person, although sometimes "what is best" and what the person would do if the person were not incompetent are the same.

Why were you given POA and you live further away and cannot see her daily and access her situation? If she goes to an assisted living facility or skilled nursing, will the cost equal what she pays out now and will she be able to afford it without the sell of her home? If she isn't going home, selling her home should not be an issue if it will take care of mom. Are your brothers doing all the checking up on (hopefully) her round the clock in home care? Do they go to care meetings, doctor appointments, etc. and other while you hold the POA title? There are a lot of variables here before one can give their own opinion. A doctor cannot state a patient with dementia will decline in a ALF or SN. He has no crystal ball to know so. You need to give the POA reigns to your brothers or move there to be hands on and see what is going on first hand. If your mom's dementia is moderate, she should not be making her own decisions.

I am a big fan of letting the parent be where they want to be, for as long as possible.
If it were you yourself, you would want your wishes respected! Asking for ice cream and candy is a no-brainer that it is not healthy, but if they are adamant about wanting to stay at home with aides helping, then why not do that until things become impossible to continue on that path.

I am sure it is best for the entire family to stay as close and loving as possible. Mom needs her daughter and sons, and they need her too. One day when she passes, she would want her children to remain close. (If possible).

It may be a good idea to have an in person meeting with your brothers, and then one with Mom included. Her decline could be very slow and many years away, or rapid.

I am an only child and had no siblings to help me, so all the siblings should enjoy the blessing of having the many people to help.

Best of luck to you all!
🙏❤️🍀

I want to make another suggestion. Her mental well being hinges upon socialization which an AL will provide more than mom would get just sitting at home. How about a trial comprmize, which is adult day care. It might cost a bit less than a caregiver for 8 hours. The enrichment activities and socialization might just tire her out by the end of the day. Consider trying it for a couple of months, then revisit if she would also thrive in AL. Some facilities offer respit programs that will skip an enrollment fee and give her an opportunity to try

A few questions
Is she safe staying at home?
(If no then I have to agree with your brothers)
Are her caregivers FULL TIME?
(If she is left alone at any time I have to agree with your brothers)
Can she afford to remain at home with full time caregivers?
(If no then brothers win this one as well)
As she declines will she be able to be safe in her home?
(If there are stairs, carpet, small bathrooms it may not be safe and again I have to side with your brothers)

What I do not agree with your brothers on is this. I believe that a person with dementia should not be in AL. They should be in Memory Care. The chance of them leaving if they are in AL is just to great. If she were to wander off the chance of her being found alive is not great.

michymoshcow1: She may require memory care.

Greetings. 
 I understand your predicament well. As the PoA and sole caregiver for my mother the effort became too much for me to handle alone, though I have two siblings that live much closer than I. Spending days, weeks at a time, away from my family has really put a strain on my relationships and health. On well grounded and researched advice of family members, I made the hard choice, against mom's desires, to put her in an ALF/MCU for 24/7 care. The first week was still the sales pitch. After that all bets were off. In seven weeks she had NINE unattended undocumented falls. Lost the use of her legs out of staff convenience, they placed her in a wheel chair and would not let her walk. Lost the use of her left arm due to neglect, abuse and falls. The staff refused to give her medications for pain, despite numerous Dr. orders on file. The place went through five head nursing staff in less than six months, and three directors.
Edit:
If she is in her home, with 24/7 care at this time, it reads as though her sons moved back to the state where her home is located, or did she move into the state where they live? Regardless, if she is in her home, has care, and is happy and the doctor agrees with you, that is where she should remain.
  My advice (for siblings), if your brothers are complaining, have them do all the research web reviews, interviews, tours, for both facilities and in home care. Get concrete pricing up front. They will get a range, $21-38.00/hour which will, "depend on her needs". Ask what services are provided, house work, feeding, bathing, laundry, background checks, stealing, etc.. Find out what the turnover rate is, as this is an indicator of the management / worker satisfaction. Remember home maintenance will still be required, maybe more so to keep the home secure and squatters out. Also, her home may need to be sold to finance the facility. 
Once in the facility, a convenience kill MCU, my mom lost her plateau of memory and went in to rapid decline, she is currently back in her home, on hospice care, with 24/7 care givers, not without their own expenses and issues. Though mom is happier and doing better, we cannot repair the damage done by the facility and the guilt and blame that is being placed on me by my siblings.
 What ever you decide, let your brothers do all the research, narrow it down to two facilities and two in home care companies. Then all three of you, and your MOM if she will go (trust your instincts), take tours meet care givers, the registered nurses on staff. Verify, that the used room sales pitch, matches the brothers' research. Ask the care givers, privately, if they would have their loved one in the facility. You will be surprised by the answers. Remember it is about her life, comfort, care, and well being. Remind your siblings it is NOT about them, it is about her. 
  It is a very hard decision not to be entered into blithely. She trusts you as the PoA for a reason, if you need or find it useful, join a support group to get advice that you can use or discard. I looked, there is no manual online or in the library, on the situation we face in trying to provide end of life care for our loved ones. Depending on where they are, our parents can live a month or 10 years, this needs to be factored in to the decisions.

I suspect that some of these comments would be very different if the genders were reversed. Here we have an absent POA sister and hands on carer brothers. If it was an absent POA brother dictating to hands on carer sisters, there would be much more indignation.

There comes a time when you do what is necessary for the welfare of the person in need vs 'what they want.' As dementia progresses, and it does, she may not know what is best for her 'now' or later.

* Elders in this transitional time of experiencing dementia may know enough to be cognitive of some aspects of reality (who people are, day, what she likes to eat or where she wants to go), although what I believe is often 'running' their decision making are:
*** She'll NEVER want to move. And, some people want to die in their home (it could come down to care / cost.
*** Fear of change, wanting things to remain the same due to it being familiar, and not knowing (or able to comprehend what the future holds). Feeling safe(r) with family. Not wanting to be around STRANGERS.

Until they are in a new situation and adjust, they will not want to consider it, understandable. Generally speaking 'no one' with mild or increasing dementia 'wants' to move. This is a given to be expected.

You might want to flush out more and/or get a second opinion about MD saying AL might + her decline. What is s/he basing this assessment on?

- At what point will you know or agree to a change? How will you determine this?

- Ask your brother(s) why / what they are making their assessment on (same question to MDs). If they are now visiting more regularly, they may see changes in her behavior more than you did / have (more recently).

- What does 'ruining my relationships w my brothers' mean? I understand you are at a crossroads with them. However, I am wondering how much of you wanting a 'good' relationship with them may / may not affect your decision making.
- Consider hiring outside professional (psychologist in this field) to do an assessment on your mom (for placement). While she has moderate dementia vs more severe, I believe professionals do (or may) make these assessments based on the degree of dementia.

- Ask your brother(s) if they will agree to this assessment. However, getting an outside professional assessment / opinion may help the family make a collective decision.
- If you do not agree, then what? Can / will they place her regardless of how you feel? Can they legally or is this your legal responsibility?
- You might want to hire an ind medical social worker for their input. Either speak to you and/or make a visit to assess the best care now.
- 24 / 7 care is extremely expensive and there are more staff and care available in a AL. Additionally, there are so many activities going on. Her social network wll broaden, even though it may be / will take some time for her to adjust. It IS an adjustment.

If me, I would ask if she might leave burners on (stove) or in some way injure herself.

Get everything in writing.

I question how you know her dementia is moderate. What does this mean medically speaking and based on what? What is the prognosis for it progressing?

Gena / Touch Matters

Gena, you don't address the basic point, which is that sister POA cannot force the brothers to continue their support to M, and that is what is keeping M in her own home. Brothers cannot “place her regardless of how you feel”, because sister is the POA. What they CAN do is walk away – which they clearly don’t prefer because they care about M.

Sister POA has provided no information about what the brothers do in support, what they are having difficulty with, or what demands their own lives place on them. Sister appears only to want support for her own position, and her phone conversations with M. Not so nice!

At a minimum, the brothers should attend a conference with your mom's doctor. There's a lot going on here.
1. Guilt that you are doing so much, and possibly the sense that assisted living would be 'better for everyone'
2. More impersonal access to Mom, without going through you and the ease of complaining to a facility (instead of a family member) when they are distracted with care level
3. $. Possibly they think it will be cheaper....don't count on that if you want a decent level of care and amenities, doctor access etc.l
4. My stepdad was moved out of his home of 40+ years after episodes of neighborhood wandering. He lasted less than a year. All the research and experience suggests that the best quality of life for the LOVED ONE,is within the home. Some men seem to respond more positively to hearing that from a medical professional than a mere sister

Listen to your brother. He is the smart one here.

Parents never want to go to a nursing home. Waiting for them to change their mind is a hopeless cause.

You put your foot down, who ever is the POA and Proxy makes all the last calls. People can write you or send you a voice memo there opinions but as a healthy boundary you say I will take what you say in consideration but I ultimately make the calls and you will have to except my decision as I am respectful in there desires they shared with you. End of story!