A large family share care for a parent with dementia who lives alone. Disagreement is constant, any thoughts?

Always family dynamics, and sometimes financial and other expectations of care. Exactly why I am writing out my wants and desires ahead of time. Someone should

First of all explain to these siblings that sarcasm is indeed the lowest form of wit and if they have something to say they can say it. They can shove the passive/aggressive notes up their a$$es.

You all truly need to communicate with each other and the best way to do this is to lay it out in plain dollars and cents. That if everyone cannot come to the table and agree on your father's care he will end up having to be placed in a care facility. Or he will have to pay for homecare. I own a homecare agency and let me tell you, it costs a fortune to have this kind of help in the home.

So the choices are agree to some arrangement where you all do your part or fair share or NO ONE gets any inheritance at any point because it will all go to homecare or a long term care facility.

As loathe as I am to suggest this because I think they are a total waste of time and money in a family care situation - Bring in a social worker to mediate a discussion with all of you and to help design a care plan for all of you. If you're not going to bring one in, ask a homecare agency to come out and do an assessment and talk with all of you.

Every case my agency takes on, I open personally by going to the potential new client's home, talking with them and their family, and explaining the careplan. Many times I'm the referree between warring family members who can't decide on who will be in charge and who will be doing what. I basically lay it out for them in dollars and cents and tell them exactly what I told you. If the "loved one" has to go into care because no agreements can be reached and their assets aren't legally protected, everything the person has gets liquidated and fed into the bottomless pit of the residential care racket.

Family members tend to get reasonable when it's put like that. So give it a shot. Maybe it won't hurt to hire a few homecare hours a week to help out too. This will give all of you a break. Even if it's only weekend help to free up weekends for all of you.

Grandma 1954,
I am challenging it but it’s hard since everything was done in secret so there are no witnesses. He lied to her & told her I was after her money & wanted to put her in a nursing home.

Funny how this worked out & he was the one after her money. Most elder exploiters & abusers are usually a trusted family member.

If you ask ten people their opinion, you will get ten different answers. It is hard to get everyone on the same page. Some are more knowledgeable than others on the topic of dementia and some are better suited to be a caregiver than others.

When I told my brother that mom was getting lost while driving, his suggestion was to get her a GPS. I told him if she had the wherewithal to manage a GPS system while driving, she wouldn't have dementia! Some people just don't get it. My brother and I did not speak for 3 years over a huge blow up we had over moms care. He didn't want to assist at all and I have been doing everything for close to 15 yrs now. I have chosen to let it go, but I will never forgive him. I just choose not to dwell on him and the type of person he is.

In my opinion with a large family, there needs to be someone at the helm and everyone else as support crew. Does anyone have POA? Is everyone elderly and unable to physically assist? Is everyone close by? Is dad on medicaid? Are finances a big issue? There are lots of variables in every situation, but your siblings have to be able to talk to each other at the very least, but you can't force them. If you feel like your dad is not getting the care he needs and is unsafe and you are unable to intervene, you could call adult protective services. But once you do that, the relationship is more than likely severed with your siblings unless you can do it anonymously.

It's difficult and it gets ugly. I guess if your focus is for the relationship with your siblings to stay intact, just ask them how you can help.

Is anyone POA?
If so the one that is POA is the one that makes the decisions.
The ones that disagree with the POA need to step back.
If the POA thinks that dad should be placed in Memory Care (probably the right decision) then that is the way it is.

If the POA thinks dad can continue to live alone with help from everyone else (definitely the poorer decision) then the ones that think dad should be in Memory Care should step back and let those that think dad can continue to live alone can carry on and continue to "help" prop dad up. At some point the bottom will fall out of that basket and something will happen that will force a more rational decision.

If no one is POA then at some point someone has to talk to an Elder Care Attorney and someone needs to be appointed Guardian.
Someone needs to be legally able to make decisions on dad's behalf and if no one is POA the court will appoint someone either a family member or if no family member wishes to be Guardian there will be an outside person that the court appoint and dad will be made a "Ward of the State"

You probably will not get through this without a total family break up. These are polarizing decisions and like discussing religion and politics it is difficult to change minds.

CaringWifeAZ is so right on what she said.

Here is what happened to my family. I was my BIL's rep payee and he had dementia living in his own apartment. When it got bad we had to put ring cameras in his apartment to watch him and tell him to eat or take his meds. All of us was suppose to take care of him to watch him well it didn't happen. He went outside and fell laid on the ground for 30 minutes until his neighbor found him and called 911. But before that the family decided that I wasn't taking care of him they got a medical POA and tried to get a financial one but couldn't. The medical POA in their eyes was good but in the law's eyes it wasn't worth the paper it was printed on. That is when all hell broke lose I was turned into DHS twice and Social Security once the latter they said I used his money for a lavish vacation. All were unfounded and this was done by family. Once a snake always a snake haven't been to see that side in over 3yrs. They wanted his money. So he ended up in memory care at a nursing home with the nursing home controlling all of his finances which I handed over to them. I know if I still have his finances I would be turned into places again and again. They can't get any of his money from the nursing home it all goes to his care.

Mind you his social security and little pension doesn't pay all for the memory care so he is on Medicaid which pays the difference. All he gets is $50 from his finances.

So the best place for your father is memory care and when you set up his room take things from his home like we did for my BIL which was his recliner, tv, ottoman, his hats are hung on the closet doors, his bedding including pillows, hung pictures on the walls of family to make it feel a little like home. He even has a small fridge for his pop. All of his other furniture went to family members after I talked with Medicaid because if he had anything new I had to sell it for his care. Even that caused fights I had to clean out his apartment because he couldn't pay for 2 homes.

When dealing with family watch it because it can get downright mean and you could be turned into an agency if they don't get their way.

Prayers

ParentHelperNow: As no two people are going to agree on the challenges at hand, look to a book such as 'The 36 Hour Day' to garner information on the disease of dementia.

To be all on the same page you all need to learn about dementia. Too many decisions are made out of ignorance. The first thing that needs to be done for any dementia patient living alone..... They should not be living alone! They are not only a danger to themselves but to other people much of the time. A danger, especially if they are living in an apartment and have access to a stove. A dementia patient sooner or later will leave the stove on. That is a given. I've worked with dementia patients for thirty years and this happens way too often. They also leave the water running and flood the place. This can cause black mold to grow which can lead to death. Please, move them so they can no longer be by themselves. Until you're able to move him, Put cameras all over the place. You can watch from those cameras via your phones. I do this all the time. Thank you!

To avoid a total family break up, the family needs to stop sharing the care of your father, and place him in a memory care facility, or, hire a caregiver to come to his home.
You say it will take all of Dad's finances, but that is fine. Just as he has to pay now for housing, utilities and food, a memory care center will provide his housing, utilities and food.
But the family disagreements are not going to end there.
Once Dad is moved out of his home, or he passes, the family will be left with the task of distributing his assets; what will happen with his home, his belongings, his bank accounts? That often brings family members to angry fights.
The POA needs to step up and take charge, whether anyone agrees with them or not.

If the POA is not acting in dads best interest a family member(or otherwise interested and capable party) who is willing/able to do the job can petition Probate Court to give them Guardianship to make healthcare decisions and/or Conservatorship to oversee their finances. Check your states laws regarding these things.

Hello ParentHelperNow,

I wished we could speak earlier about this subject rather than letting it simmer for 5 years. Disagreements between siblings is very common in setting up a good caregiving system for a loved one. It should be addressed as soon as possible in developing your caregiving roadmap.

There should be one person at the helm, the main caregiver and the rest should be helping him/her, rather than causing disruption, question the caregiver's actions, and basically stand in the way.

I suggest that you should first cross this hurdle. I will copy paste a few paragraphs from my book "Dementia Care Companion", available from Amazon. I hope it helps. Someone suggested that you hire caregiving help. My experience says, unless there is agreement by all the stakeholders and everyone pulls together, it will not solve the problem. The risk is that each sibling may give instructions to the hired help, the way they think it can solve the problem, and before you know it, the hired help is confused and frustrated. And now the promised copy paste:

Dealing With Disagreements

In some cases, care planning is straightforward. If you are caring for your spouse, are physically and mentally healthy, have the necessary financial means, and enjoy the unconditional support of your children, then managing the care process is relatively straightforward. You can make all the decisions with the sole focus on what is best for the patient, without having to worry about approval or interference from others.
Often, however, things are not that simple. Even close family members do not always arrive at the same conclusion at the same time. They may disagree about the nature of the problem or how best to go about solving it. Sometimes, family members might put up obstacles, rather than participate constructively. When planning for care, it is important to address interpersonal issues early on and continue on an ongoing basis.
·        When planning your care strategy, have a meeting with all the stakeholders present. Discuss caregiving and related issues, including legal, financial, management, and follow-through of the plans over time. Try to reach consensus among all the parties.
·        Don’t assume that everyone is on the same page regarding care planning and decisions. Most likely, you’ll find that various members of the family have different ideas and disagree on the correct approach. Discuss the issues early on and try to reach an agreement so everyone is on the same page, supports the plan, and works toward its success.
·        Past grudges among family members may make it impossible for everyone to get along. Some members of the family may constantly create problems and find faults with others, without providing any help themselves. Sometimes, the best thing to do is to let them get it off their chest and then move on with the real work of planning.
·        If there are many disagreements and deep family grudges going back many years, especially among the primary family members, it may help to have a neutral body, such as the family attorney or a counselor, present during these meetings.

Primary Caregiver at the Helm
The primary caregiver is the most critical element of a successful care program and the primary pillar on which everything else rests. The primary caregiver must not only do most of the heavy lifting in day-to-day care of the patient, but must also take on a leadership role, directing all aspects of the care program, including marshalling financial and human resources of the family to get the job done.
The leadership role, however, is often overlooked, especially when it falls on a younger member of the family to take on the role of the primary caregiver. In family dynamics where everyone thinks that they’re in charge and that the primary caregiver is simply there to follow instructions, there is a real danger that the patient will not have the benefit of a primary caregiver who can take ownership of the difficult tas

What if your father and/or kids cannot afford 24/7 care giving, then what. Most facilities are expensive

When I noticed changes in my father, I took him immediately to a neurologist. He diagnosed him with Alzheimer’s. He lived with his third wife until the weekend one of my sisters couldn’t make it out to their house to fill the pill box and didn’t arrange for someone else to go.it took about three days before I got a call he was in the hospital. From then on, we had a meeting every month to talk about Dad’s care. There are five of us and I really enjoyed seeing them every month. Sometimes someone couldn’t come but we still met and sometimes we used FaceTime or zoom. That is the most often I got to see my siblings since I moved out of the family home to be on my own.
it was a big help for us all. And I think my Dad got better care because we were all on it. There were disagreements, but as the medical person in the family, and the POA, I pulled the trump card a few times. But I tried to listen and be generous and kind and build consensus whenever there were disagreements.
Good luck to you

When a parent is ill or have a illness the children feel helpless that then turns to angry not at the parent but at each other siblings , my mom had cancer there was 8 of us and we all was so close to mom I felt I couldn’t breathe just knowing my mom would be leaving me l got so depress and angry , so did my brothers and sisters and in turn we turned away from each other after mom went home to be with the Lord, to this day we should have supported each other but we all was in pain they my sister took a massive heart attack and died two years later my brother died of a massive heart attack, I wish there was a do over but in this life there isn’t ,now we the other 6 are trying to make it right with each other, we should have seeked God’s guidance , you and parent and family is in my Prayers

Someone needs to have DPOA. They make final decisions. Sit together in a group and give everyone a chance to voice their opinion but DPOA needs to keep your dad’s best interest at heart. Not safe to live alone with dementia. It’s isolation and dangerous. Identify everyone’s strengths and utilize where needed. Opinions without action are just unhelpful to your dad.

I think this is pretty common... IMO, to avoid this, Advance Directives (Which is an umbrella term), are important. There are also AD for Dementia. These are legal documents.
I hope you and your family can walk through this experience together. It is one of commitment and values and honor. You are doing a wonderful thing for your dad. All dad knows is where he is now.
Anyways, always look to the future and use this as experience; for your children or loved ones should be in dad's position.

A person with dementia should not live alone and the person who has POA has the responsibility of making sure your Dad is safe & well cared for.

Time to step aside and let that person do his job or file for guardianship. Listen to everyone here. I wish I had found this site years ago……..my family is beyond repair at this point.

Thank you for all the thoughtful messages. The feedback is really helping me think about this in new ways. I appreciate.

Your Father should be the center of a good Care Plan. Not in the centre of family squabbles.. yet it happens. A lot.

Siblings can be very different personality types! May be brought up by the same parents but still gain different values. Have different life experiences that shape them. Certainly have different financial means & other obligations in their life to balance.

Some louder & shouty about stuff, some quietly resentful. Some doing hands-on practical help, some better at emotional support.

Sometimes a 'bossy boots' springs up - with a roster in hand demanding duty & assigning everyone without concent..

Sometimes battlelines get drawn up & sides chosen. Between the Keep Mom or Dad at home until the end vs It's time for 24/7 supported Care.
ie Home vs Care Home

Getting a Social Worker involved FOR DAD may help. Not to decide what to do, but to spell it all out in a more factual way (also less reactive way). I personally found this very useful. To better understood others' viewpoints but mostly to learn better ways to communicate.

Are you the only one that thinks there is a problem that needs to be solved? What are the key issues – who does what care, or how much the options will cost and how that will affect the inheritances, or how well everyone in the family will get on in the future?

There are counselors that specialise in family issues like this, although my own experience is with issues about who inherits the family farm and how the other adult children are compensated. Family farms are often high asset value but not very profitable. However no-one wants to see them sold, so they are difficult issues to resolve, and I know that skilled counselor/ negotiators can help a lot. It's not totally different from everyone wanting the money but not everyone wanting to do the care. If no-one else in your family wants to deal with the issues, you don’t stand much chance in getting it fixed. And using a skilled counselor always costs. Sorry, Margaret

Family may come to agree if you stop taking so
much responsibility. Step back, refuse to take on the lion’s share of work as you’ve been doing, and see what happens.

Who is the POA?
If there is no POA it is too late to get it. I would call APS and ask for help with mediation between siblings and guardianship.
If no agreement is reached your STATE will protect your father by taking on conservatorship and appointing a Fiduciary. NONE OF YOU will then have a single thing to say in the matter.
And that's as it SHOULD be in my humble opinion. Will save you all a lot of stress.

Call APS.

Family breakups do happen over caregiving. It looks like it’s broken already . There are so many similar threads to this one where the POA sits back and one other sibling is acting responsibly about trying to keep a parent safe and cared for .

Your father most likely needs 24/7 supervision. And can not be ( live ) alone any longer .
Call Dads local Area of Aging . They will
send a social worker out to talk to Dad. This is what I did to prove to my siblings that my mother wasn’t safe home alone any longer . The social worker will do a care needs assessment .

The social worker asked my mother a bunch of questions, like what to do in emergencies etc . The social worker determined that Mom could not “ come up a plan “ for any of the hypothetical situations the social worker proposed . My mother’s needs were that she needed 24/7 supervision.

Hopefully this will open up your siblings eyes. Good Luck .

Hi, He does have a PoA. The PoA takes a very back seat position with regard to care and communication which is frustrating for me who has been at Dad’s home the most doing lots of day-to-day care. Everyone does help out however. A move to Memory unit would equal all the financial resources Dad has. All family members can pay their bills so no one is living off Dad’s Ss. The closest child to Dad lives an hour away. Family refuses to make a schedule of care so it’s always a bit nerve wracking.

The only way I can see to get "through this without a total family break up" is to have your dad placed in a memory care facility, where he will receive the 24/7 care he now requires and you all can just get back to being his loving children and advocates and not his disagreeing and sarcastic caregivers.
If your dad was in his right mind he certainly would NOT want his children arguing over his care and because of him.
It's just not worth it...really it's not.

You need to tell us if anyone is your Dad's PoA. Without this info it's hard to give you any advice. The PoA is the one driving the bus if your Dad has a medical diagnosis for his dementia and the PoA authority is active.

If he doesn't have a PoA and can't be convinced to assign one or is no longer legally able to, then it's a different strategy.

The more info you can give us the better: how old he is, if he has other medical issues, what his financial resources are in general (like does he only get SS, does he own his home, other assets, etc), what state he lives in, and whether his children are local to him or not.