My husband has behavioral variant FTD and it' taking a toll on my physical and mental health. How can I get my adult kids to help more?

Work on placement. Have you tried asking for financial help so you can pay for respite? Would they be willing to help out with money rather than personal involvement?

You can't make people do what they aren't willing to do, and it's futile to stress yourself further about it.

It's time to look into Medicaid and placement in a facility before you wear yourself down to a point of no return.

Some people with dementia are easier to care for, some aren't. A lot depends on the person and the underlying cause of the dementia. The type he has is difficult to manage and care for, as you well know. Despite the fact that he was a good man, good dad, good husband, this isn't who he is anymore. The exterior may look the same, but the behaviors aren't. Many people can't handle these changes.

My mother's dementia was likely vascular, and although she needed care (moved her to MC), she was relatively pleasant most of the time and didn't display some of the more difficult behaviors many present. Mostly a lot of repetition and living her past about 40 years ago. We would have been adults, so she'd still know us. Despite that, my OB would NOT go back to visit with her after one time alone the last time he was in the area to work on her condo. It was only a brief visit, to bring DD coffee and snack and he didn't even have to do anything but visit. He refused to go back again. It was so sad he did this because she idolized him. We went together the first day he arrived and the greeting he got was overboard! When I would visit, it was always "Where'd you come from?" or "What're you doing here?"

So, it really isn't how their relationship was before. In your case, I doubt it is just being busy with family, work, etc, but rather the devastating effect seeing him like that has on them. Rather than having a chat with them about helping you, be more direct and ask how this affects them. Ask them to be honest. They are likely suggesting hiring help or using a facility, because hired care-givers are more trained in dealing with this AND are not related, so it doesn't impact them the same to see the bizarre behaviors. It's almost like adult children who don't visit a very seriously ill parent, because they can't handle the degradation the parent is going through. Think about how you described it:

"It’s such a hideous dementia, and the behaviors are indeed the worst part of it, taking away the personality and good traits of the man I loved and married."

Then consider how this might impact them. It IS hideous. The behaviors ARE bad. His personality and "good traits" are likely gone. He's not only not the man you loved and married, he's not the dad they grew up with.

I should think in-home care-givers will be harder to hire, mainly because of the type of dementia he has. You may get lucky and find the right people, but it won't be easy!

If you haven't already consulted with an EC atty, you might want to check with a few. Some do offer a first consult free. It is unfortunate that you didn't do that when this started (or did you?) They can find ways to separate your income and assets so that you aren't left bereft. If this was done before, Medicaid would almost be an option (5 year lookback.) Even without that, Medicaid would not leave you hanging. They would take his income and some portion of the assets might have to be used, but they won't take your car or home. There is some kind of formula used such that if your income isn't enough to cover your expenses, you get to keep some of him - an EC atty can help with this.

Another alternative is to see if there are any respite care places that would take him. Even if you only do a week or 2 every month, it would reduce the expense but give you a well needed break.

During that discussion with the kids, since you indicate this is potentially inherited, express how important it is that they should make sure they have their "ducks in a row", just in case. Many of us are making our future care plans based on having cared for a parent, so that our children won't be burdened should we end up on the dementia road.

Our children get lives of their own, have their own families, jobs, homes, children, lives away from us. That is the normal progression. Many of us don't have children who live anywhere near us.
I think it is past time for you to ask your children to meet with you. You need to discuss your own expectations with them honestly, and ask them to respond with like honesty. You may have to listen when they tell you what I just said. They may suggest that you are nearing your limitations in being able to caregive your beloved husband and that the time may be nearing when placement is the only option. However, with honesty you may also hear that they are willing to do more but need to know exactly what you need and expect of them. It's hard to say. Our children as adults remain more or less close to us according to how they were raised, who they ARE genetically and by nature/and nurture. They are unique. I would be ready to leave this first meeting open ended, ask them to discuss with their family and with one another, and arrange a second meeting some few weeks forward.
As to their futures, it cannot be news to them that they are at risk. We are ALL at risk of dementia, whether it runs in family or not and should be working hard going forward to accumulate enough that we are not at the mercy of our children. I don't want that for my kids, and hope they will not want it for their own kids.
I wish you the best of luck. But brutal honesty can leave us hurt and scrambling to make our own arrangements, as well as with more help. It still does leave us with ANSWERS that no forum can give you. I am so sorry for all you are going through.

You wrote this back in November: "I have set up in home care that will begin in early December, so I will have someone in the house to help manage him, and provide a bit of safety net for me."

So the in home care didn't work out?

Please don't expect your adult children to be respite caregivers for you.

I am concerned for your health. Have you consulted with an elder attorney regarding how to be able to facilitate facility placement for your H?

I'm so sorry you are going through this difficult situation with your DH. I think your children are right, however, in that you can either hire in-home caregivers to help you with him or place him in Memory Care Assisted Living if you reach the point where you can no longer manage his care alone at home.

Many family members simply cannot handle dealing with dementia, nor can they be forced into it, and you can't 'make' them see the 'error of their ways', either, because their father 'has been a good man'. This isn't about payback for being a good dad; it's about their inability to deal with his dementia. They have lives to lead and don't want to do hands-on caregiving which is not something everyone is cut out TO do. That leaves too much burden on you, and I do understand why you would like help from them, but you can't get blood from a stone.

When my father was dying with a brain tumor, he had some episodes where he was acting out and his behavior was totally out of character. It was VERY hard for me to witness him cussing & acting like someone I didn't even know, so when my mother called me to go over there to calm him down, I felt very nervous and out of sorts MYSELF. I did it, but not without feeling trepidation about the whole thing. If I had to do it on an ongoing basis, I would have been very upset myself. I'm telling you how I felt from your children's point of view.

Since I'm not a natural caregiver and I know that, I placed my parents in Assisted Living back in 2014 when dad fell and broke his hip; he passed 10 months later and my mother is still alive and living in Memory Care AL now. When her $$ runs out for private pay in early 2022, I'll apply for Medicaid on her behalf so she can be placed in Skilled Nursing for her advanced dementia & other health issues. I simply cannot care for her at home and realize my own limitations in that regard. She's very well cared for where she's at, and I speak to her daily and visit often. I manage her entire life FOR her, and do all I can which is plenty.

Sit down with your children and have a chat. Then have a heart to heart talk with YOURSELF, too. Decide how much is 'too much' and what steps you need to take to care for yourself in this journey of your husband's terrible dementia. FTD is not something most people can deal with for very long at home. It's not a 'failure' to admit that, either, it's just the simple truth. Decide what needs to be done and then take that first step by hiring qualified people to come into your home to give YOU some respite and well earned down time. Call an agency that has caregivers familiar with dementia, and go from there. Preserve your relationships with your children so you can lean on them for emotional support now and down the road instead of physical support for something they're not capable or willing to deal with.

Change your expectations of them and work on acceptance instead, that's my advice. Take a different route to find the help you desperately need and hopefully, everything will work out for all of you in the long run.

Wishing you good luck and Godspeed as you navigate this difficult road ahead.