How to deal with siblings who differ strongly in their opinion on how to care for our mom who has dementia?

It is always interesting when the peanut gallery starts throwing bombs at the person who is doing all the work. I am in a similar situation accept in my case, the person with dementia is my husband and the peanut gallery is his adult daughters. Yesterday, I spoke to a friend of 40 years who is in a similar situation with her brother. The role of Caregiver is exhausting and thankless. What you need from family is support and empathy. When the people who are around you constantly berate you, it makes the Caregiver's life hell.

Many people are under the impression that a durable power of attorney and healthcare proxy give you the right to do anything you darn well please with the person's money and body. That is wrong, your role is to do for the person you are caring for what they desire and what they would do for themself if they could. You are merely their agent. So explain that to your siblings and ask them if in their conversations with their mother she requested that they move her in to a nursing home.

Another common misconception is that dementia patients, disabled people, and elderly people are mentally incompetent by definition and unable to make their own decisions regarding how they live their own life. In fact, although it is different in every state, most courts will not take away an individual's right to live independent unless they are a danger to themself and others. When dementia patients are placed in nursing homes, they deteriorate very very fast. In the majority of cases, they die within the first 30 days. I don't know about you, but I sure wouldn't want to be the one imposing the death sentence.

What I did is ask my husband's doctor if he thought my husband should be placed in a nursing home. Of course he said no. Then I invited my husband's children to enroll in the memory clinic education workshops and support groups so that they could have factual information upon which to base their opinion and become part of the care team. They never did and now they just talk about me behind my back. I don't care. They also have no contact with my husband. It took me a long time to understand why but then one of my husband's nurses said it is very common when there is money involved. In my case, I am a second wife. If my husband dies before me, his daughters will have to wait until I am dead to get their inheritance. His oldest daughter is a Queen Bee. She bullies everyone in the family until they cave and she gets her way. She hasn't spoken to me since my husband refused to relinquish power of attorney to her. Also, non Caregivers often feel guilty because they are not doing any of the work. if they can convince the family to put their dementia family member in a nursing home, then the entire family is on an equal footing.

If I were in your shoes, I would inform my sibs via group email that after discussing it with her doctor thinks she your Mom is perfectly capable of living independently and moving her to a strange environment is simply too traumatic and should only be considered as a last resort. And she isn't at that point yet. Next, I would explain to your mom that some family members feel she would be better off in a nursing home and ask her what her wishes are. I would include your Mom's response in the same email. Next, I would invite them to participate in some support groups, request that they have dinner with her once a week, and call her at least once a week. Finally, I would state as healthcare proxy, I am legally mandated to comply with Mom's wishes with advice and guidance from her physician so for the time being, she will continue to live independently. In my group email to my husband's family, I informed them that my husband's care is not a family decision; it is his decision and as long as he is safe and until his doctor tells me otherwise, I will abide by my his wishes. In my case, the troublemakers stopped talking to me and the people who care show it.

JD, I think your sister is being a pragmatist here. I doubt she thinks that mom will get more LOVE from professional caregivers. What she will get, if you choose the facility wisely, is a group of younger, trained folks who get to go home at the end of 8 hour shifts, and who aren't burned out.

You also get more eyes on the situation. Medical personnel, like the folks at my mom's nursing home who picked up UTIs and pneumonia long before we saw the subtle changes.

Dementia is progressive. Mom will decline and at some point will need more care than you as elders can give. You will need to move her in the later stages of dementia, and possibly end up with the sort of disaster that MidKid's family faced.

IF your wife is happy living in your mother's home, and IF there are enough funds to pay for full time care when needed, do what you want. Those are two big IFs.

Don't worry about your siblings, they can take care of themselves and they don't get a vote. It is considerate of you to ask their opinions and acknowledge their concerns.

The real issues are long term: what if you can't take care of Mom due to illness or needed surgery? What if you and your wife want to take a vacation? What if your wife or other family members need your help and you are tied up with Mom's care?

Mom's needs will increase as YOU age. Is she continent? Are you OK taking care of that? Will she let you?

Can Mom go into adult day programs, to let you and your wife have a life? No one gets married to take care of inlaws when they retire. Put your marriage first, Mom second, and do the best you can with what you have.

Google medical advocate to find one.

Key word is "enjoy", and I agree. Seemingly contrary to personal aspirations, taking care of your loved one is actually rewarding and providing an insider view into the cycle of life. I feel sorry for my siblings when they miss Mom's little smiles of achievement; joy at the start of a new day; chatting incoherently with 4 year olds ...
The only caveat for me is the need for more company that is lacking in the home, and the heartache that comes as life takes it's tolls. The UTIs, the aspirations, and a thousand other dangers lurking in this crazy rollercoaster. But I think you know all that... As far as sibling resistance goes, you got to be a bit of a politician there and that's hard. I think they want to know mom is safe and cared for, and don't want to feel guilty or beholden. A nursing home provides those things I guess.
So sticking to your guns, so to speak, might isolate and alienate you, which is difficult to deal with especially in a loving, close-knit family. That's my stumbling stone for the last five years, so if you figure out how to cross that rubicon, hit me up,

Here is the website for Advocates
https://nahac.com/directory-of-advocates#!directory/map
There used to be one in the Springfield area. But I cannot find one

Since you are in a remote area Also check https://www.solace.health/care/connect-healthcare-advocate?gad_source=1&gclid=CjwKCAiAi6uvBhADEiwAWiyRdqGLTMqAFRZ-BOKVeBPb1N_Kel4hUpjM2329VX8KxLcv7yCYyM8TdBoCp4UQAvD_BwE

Ggenerally the free ones tend to get paid by the SNF but your options may be fewer since they steer by where the funding is best for them.

JDPele: Your mother no doubt requires managed care facility living as dementia does not improve.

It’s probably going to be easier to make the transition if she doesn’t go home from rehab and goes straight to the memory care. Is she confused where she is now? My dad is doing a lot better in memory care than he did at home with my mom in their home for 25 years. He participants in all the activities. Within 2 days he was finally on a normal sleeping / waking schedule. There are people for him to eat every meal with. The facility doctor got him off a bunch of pills that were unnecessary given stage of life. There are trained professionals that know the craziness that is dementia. It warms my heart to see my dad in the Facebook posts the facility does doing activities. They have musicians in from time to time. He remembers every oldies lyric but he can’t remember anything from 15 seconds ago. My suggestion is that you need to think about what mom needs in terms of companionship and activities to stimulate her brain. Can you provide that at home? I struggled to come up with activities. My dad was lonely and slept a lot more during the day (boredom) at home. Don’t think about it in terms of if you would like it there. Your brain is not broken so of course it’s impossible to imagine somebody being happy there. But plenty of people are. And we get the peace of knowing he’s got care 24-7. The facility has issues … lower your expectations a bit … but every place a person with a broken brain is has issues, even their own home.

JDP, the Nursing Home my mom was in accepted Medicaid. It had a separate section for folks with advanced dementia.

Both parts of this Medicaid-accepting facility had activities, well trained staff, lovely grounds, therapy dogs, music and joy.

I don't think you should dismiss the idea of a facility that accepts Medicaid if that's what your mom is eligible for.

Getting mom into a NH directly from rehab is easier than getting her in from home. To quote a SW from my mom's journey, "facility to facility transfers are ALWAYS easier. You skip the waiting list".

The absolute best solution is to keep your Mom in her home or your home, but with a daily caregiver and eventually a 24/7 live-in caregiver (if you have the means, this is the best).

My personal experience with agencies and with nursing homes is that is not the best option in my experience (my wife almost died with substandard care and probate issues and restrictive visits, etc.). I have a wonderful 24/7 caregiver now that allows me to spend quality time with my wife and yet not have to deal with the tons of daily care issues and yet deal with shopping, medical care decisions, meal preparation, etc.

JPD, I think that you have learned from the experience you have gained from this site. That’s great! It makes it worthwhile to keep posting constructively to people who are stupid and nasty – and are not quick learners like you. Your move from ‘aggressive’ to understanding the many realities of long term care options is very impressive. I won’t even mention the move from ‘love’ to ‘affordability’.

Do you think there is any way to get the message across more easily? It’s quite hard to keep going on this unless you think it helps, so some feedback would be good.

I found one more with agents closer to you https://www.aginglifecare.org/