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?

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.

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?

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.

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.

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.

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?

I am so very sorry about your situation. FTD has come into your lives (univited) & destroys much in it's path.

But don't it destroy your relationships with your adult kids. It can.

You ask how to get your adult kids to help more?

You can ask (as you have). They can decline (as they have). You can't change other people's minds - so adding pressure may just add negativity, resentment, anger, & effect no change.

I want to ask you why do you want your adult kids to provide the hands-on help?

You need more help? Absolutely!! But does it need to be THEM?

No? Then hire professional caregivers from agencies (as they have suggested).

If you say Yes? Then look at WHY you think so. Do you think they *should*?

Many families have the nice idea that families will always help each other. Sometimes the reality is the care required is too hard, too heavy, too scary or goes on for too long.

FTD is not a tempory illness with a short recovery. It is a progressive disease as you know. You need a major plan for his care & for your respite too.

I am too blunt sometimes & I don't mean to be harsh but I have had multiple family members attempt to roster my days, assign me many care tasks I cannot physically do. There were many other options but not acceptable to them as 'family help each other' was the motto. I finally quit & the other options were taken up pronto. It has left a bitter taste for me, marred these relationships & also reduced much trust.

Please avoid that road.

I hope even by writing to this forum, & maybe reaching out to your kids & others, you feel some support & are able to find your way to a better situation soon.

As a real simple plan out;

Plan A: family as caregivers. This is not happening. So move to the next option.
Plan B: hire caregivers.
Plan C: Care home

You can not "GET" anyone to help you...you can not "force" someone to help you.
You can sit down and have a family discussion that might go something like this:
"I can not do this all by myself"
"I need help"
"I am going to contact a few agencies and interview them to find a caregiver that will be able to help care for dad."
"I am also going to contact Hospice to determine if dad is eligible and see what services, supplies and equipment they can provide"
"I am also going to start looking for Memory Care facilities that can take dad and care for him."
"I would prefer to keep him home but it is becoming more than I can handle and if it is not safe for me to care for him at home, or if it is not safe for him for me to care for him here I have no other option. If I get hurt caring for him who will care for both of us while I get better, if I do? And I would feel terrible if he was hurt because of something I did while caring for him."

HI Darlene
You are wanting help to get your children to help with their father. On this forum, we see many many caregivers wanting more family help. What we have collectively learned is that the help you have had in these four years is probably the help you will have.
You are not alone in that situation. we have also learned, even with family help, it is seldom enough.

You may have noticed the theme of the answers you have gotten has little to do with your children but what actions YOU should take. Your husband is young. You are young. The retirement you may have envisioned is not to be but you are an educated woman who can still manage the care of your husband and have some life left to live and enjoy your grands and your garden.

Sometimes (often) a little perspective is good. The children have given you good advice. Get help. Place dad. They know they are not the answer you are looking for.

Try to understand your children.
The following link is about what MAY be going on with your children. They may be dealing with a fear of your husbands disease.

To abandon their mother is a horrible thing to contemplate so why would they choose to do that? it must be so painful for you to decide that’s what they are doing.

However awful his care is for you or others you might hire to help with his care, you aren’t likely to succumb to this illness yourself. They, on the other hand, must deal with that real possibility as it is the familial strain.
I suspect they already know much more about this disease than you or your husband did at their age. This layered on top of Covid. They may have the symptoms of Nosophobia but don’t understand it as a condition.

Nosophobia is the fear of disease.

https://www.healthline.com/health/nosophobia

The following link is about your husbands condition.
There are other links listed on this bvFTD site that give you support group info for your husband and for caregivers.

As much as we on the forum might sympathize with you, we can’t possibly understand to the degree that others dealing with this disorder can. If you haven’t already, please reach out to the individuals listed and find the support group nearest you.

https://www.theaftd.org/what-is-ftd/behavioral-variant-ftd-bvftd/

I want to encourage you to find the best certified Elder Care attorney you can in your area (who is well versed in Medicaid) to help you plan for your future and your husbands future. Proceed as if there is no help coming because there.is.no.help.coming. You don’t have the luxury to be your husbands full time care giver. You must pull yourself away to a degree in order to be his care MANAGER.

Yes.. Care is expensive. The government will help but you must put all the elements in place in the correct order. That’s why you need a certified elder attorney. It’s too complicated to manage by yourself especially while trying to provide hands on care. Go and find out what the options are. You might find your children more available for help if you are moving in a direction they can fully support. Take at least one of them with you on the appointment.

They are adults. Their opinions should be listened to. You are not abandoning your husband, you are caring for your family. This is not just about him. This is about all of you. There are provisions to help you remain in your home and have enough of your husbands income available to you. And do come onto this site as well for support. We care.

I suspect that your adult children are in a "bit of denial" because they know they are genetically at risk for developing FTD themselves. By making themselves physically and emotionally absent, they avoid being reminded of this disease and their father's decline. (I saw this behavior in my brother when my father had vascular dementia.)

However, your children have offered some practical device, in terms of either getting in-home care or placing their father in a care facility. Eventually, his care will become too much for you - and you will be forced to seek care.

Helping on a regular basis may be too much for your children, who also have to take care of their own jobs and families, and it may also be more than they can handle mentally, seeing their father in this state. They suggest some practical solutions: home care or placing your husband in a facility. Get connected with a social worker or other senior groups in your area that can help advise you on your options, taking your financial situation in consideration. Every state is different; you need someone to advise who knows the local laws and benefits for seniors. You need help to preserve your own health and well-being. This is not a battle you should be fighting with them. Find solutions that are realistic for yourself and your husband.

I think it is safer to simply not expect anything of your own kids. My daughter moved her family ten hours away. Her parting words were, "You aren't the kind of grandparents we want in our kids' lives. We need to put space between us." I thought it was both sets of grandparents she referred to, but the other set is moving near them next year, so the finger points right at me and dh. Don't let your need for help chase your kids away. Let them live in their bubble and find someone else to share your real struggles with.

When my mom became physically disabled, I had to move her in with me for a couple years. She was presenting mild memory decline as well.

One big challenge I hadn’t anticipated was dealing with her general resistance to routine activities: taking her meds on schedule, eating properly, doing her PT exercises, showering, letting ME work or rest…

For most of us, there is a clear power dynamic between parents and children, with parents holding that power for most of their children’s lives. Flipping those roles is VERY difficult - at least it was for me - and especially when the parent won’t or (in your husband’s case) cannot cooperate.

Your kids are right: Get help. Medicaid can help pay for his placement in a nursing home.

Perhaps your kids are sending the message to their own spouses and kids that if/when they are faced with the same situation, they should also get help.

Ypur kids are right in telling you it's time to hire outside help or find care placement for your husband. As mich as they may love you both, they are not obligated to be hands-on care givers for either of you.

I agree with all that has been said so far with this one additional idea.

You know the skill sets of your children. Look at all that needs to be done and find one thing that each of them could do and ask for a specific task to be done. This way they will not feel that they are going to be trapped into doing things they are able or willing to do. The old "Yall Come" does not work. Ask specific people (family and friends) for specific help. You will get some no responses but you will also get some yes responses. Every yes is a blessing.

I think you need to follow your kids' advice, hire home care or place in a facility that take care of him. Get a consult with an elder attorney to help you navigate. Maybe some of your kids would like to attend the attorney meeting.

Hi Darlene,

You really have my sympathy. My dad was diagnosed with bvFTD last January in his mid-70s, but had been acting very erratic and the opposite of himself on and off for at least a few years before that. He and my mom live several states away from me, but I visit every few months and am helping them as much as I can. I talk to my mom a few times per week. I got them to update their wills and I am durable power of attorney and health care proxy. I took over the finances and taxes. I found a neurologist who diagnosed him. My mom was completely opposed to getting him diagnosed for at least a year beforehand. The meds help, and the dr. wrote letters to end his driving and end his managing his own financial and business affairs. I am researching home health care provider options and assisted living and memory care places too, but she is not willing to consider either at this point. I would love it if they would move closer to me, but they are not willing to consider this either.

I have one sibling who says he is willing to help but so far not done much.

As I keep telling my mom -- don't wear yourself out or destroy your health or mental well being in the process. It isn't worth it. If you can't take care of yourself, you won't be able to take care of him either. You deserve some happiness. You can't save him but you can make whatever time you have left worth living. He would want that for you if you could ask the pre-dementia him.

Suzy

I am in the same boat I have three children also with a husband that is going on his 7th year living with early onset alzheimer's. I have no help from any of them , the only time I leave the house is when is 88 year old father will watch him so I can go to the grocery store. The children do call only when they need a baby sitter (which is quite hard since I have to bring him along also) I know people are suggesting care givers (with people getting unemployment I have called 3 care giving places and no one has any employees . I have been on a wait list for 3 months. Yesterday was so awful because he is so mean and angry I almost got hit just trying to take downy unstopables away because he was drying to drink them. I just don't know what to do!!!!!

Quit hinting. That is really annoying.

Call a family meeting and ask them straight up for help. Be specific. How many hours per week? Who cares for the car? The garden? Cleans? Do you need help with cooking? Could they send take out to your house three nights a week? Help going to the doctors?

Be absolutely clear. Ask them to help. Be firm.

If they say no, drop it, and don't get mad. They have lives and families. They are busy.

Just move on and get help. You can do this!

I just arranged for 28 hours a week of help--it is wonderful. I hired people privately, did all the research, no payments to middlemen. It will cost about $29,000 this year. I don't care. I am old. I want to be happy and enjoy my life.

Good luck and let us know how it is going!

3 ideas:

1 - Let your kids know exactly the kind of help you want: how many hours at a time, how many days, and what tasks... People are more willing to help if they know exactly the scope of care needed. Some people are only able/willing to give care that supports you - groceries, housecleaning... Others are Ok with hands-on tasks as long as it is not for long periods of time.

2 - You may need to accept that your children do not want to take care of their father. They may see how you are having problems and know they would have the same reactions as well. If this is the case, look elsewhere for assistance: family, friends, members of faith community and/or paid help.

3 - It appears you are suffering from burn out. You might want to consider respite - allowing your husband to be cared for by others for a period of time. Adult day programs during the week can give you some "time off" as well as setting up an occasional weekend or longer "vacation for him (and you)." If these options do not help with your exhaustion, it might be time to consider residential care.

June 2nd question. I wonder why so many old ones are showing up. At least it's teaching me to look.

As you said, they all have their own life and busy and have told you your options of hiring help or putting him in a home.

So, if you want more help from them, then you should just ask exactly what you need but as you've already said, they either give an excuse or do it grudgingly.

So, you need to decide for yourself if you can continue taking care of him by yourself, put him in a home or hire help.

Depending on how much Caregiving help you need from a couple hrs every day , 4 hrs a couple times, whatever but if it's many hours you need, you might consider a Live In if you have an extra Bedroom.

Just accept the children's choice as long as the kids come by to visit.

Your husband probably wouldn't want to burden them or you if it was his decision.

You should start interviewing for care help now.

Boy, do I identify with this. And wish I had a constructive thought. It has become clear to me that my children are devoted to their father, as am I—tho’ he’s now in a facility, but their help to me is of two kinds: the daughter who does a lot but is intolerant, judgmental, and criticizes me right and left; a son who enjoys deliberately provoking me (trying to get a response he can then rail against (like driving way too fast and at other times, deliberately slowly), and avoids requests for help, like installing my window air conditioner; and another daughter, who swings up and down. depressing. I sure did something wrong.

So I have decided to correspond with both each child AND the spouse, and not just with requests. I find that when I do ask for help with a chore, it sort of embarrasses them into helping. But in fine, I don’t count on them for much. I hire help.

Often as the primary caregiver you have a single minded solution.

I doubt the adult children are wanting to join in on the downward slide of mental and physical health.

Ive been “asked” to help with my quadupledic sister to the loss of my own future and health when there was a paid army available and many other options.

Im 56 now and add my Mother’s Parkinson’s and she still complains that we never do enough.

The answer is not in the adult children, they will only join the misery and burn out. I moved 3 hours to the same city as my mother and sister, my mother still complaining that no one does anything and blocks all attempts of help

Now my daughter is coincidentally moving back to this state and I worry my mother will pull her into this black hole.

Sometimes a distressed parent will hyper focus on a single solution as if the adult children are the answer to everything. Nothing could be further. It does however prevent us from finding a real solution.

If any of your kids was going to give more time to help you it would have happened by now. They aren't outright saying no, but not coming to give real relief either. You happen to have no children with the 'caregiving' gene. It's very possible that they know if they come more often, spend more hours, that you will not hire someone to resolve your problem. Maybe they don't like seeing him like that. Maybe they just don't want to. A disease or a need does not a caretaker make. Some will step up while many refuse without feeling any guilt.

If they are telling you to hire someone or put him in a facility, sounds to me that they think you have the money to do this. Do they really know what your financial ability is? If not, call a meeting and lay the cards on the table. If you spend X dollars per month for his care now, what is left for you to live on for current household expenses and for your own future care. Since they don't want to invest their time, for whatever reason, perhaps they can help you hire a few people to alternate coming in to help you (always have a back-up person).

Tell them all you need help with a PLAN and go from there. Might be exactly what they have all waited for - for you to give up and say I can't do it any longer.

I am with others here in saying I don’t think you are going to get help from the kids, as they have their own lives - and no one but them knows how complex it is (or isn’t). If you have asked directly, or have called that family meeting, and none of them has stepped forward to help, then that is your answer. Start searching for different remedies.

Your state’s or county’s area agency on aging can help point you in the right direction, as can your husband’s doctor, as well as your insurance company. Those are the resources I reached out to when caring for my dad, as sibling refused and I needed help.

I was able to get respite care 2 days a week. Dad’s health deteriorated further with CHF, COPD/emphysema and pulmonary hypertension, and he is now in AL. There is absolutely nothing wrong with that, if that ends up being the only viable solution for you.

You need to care for yourself - put your oxygen mask on first before helping others. If you crumble, the ship goes down. I will say that while I am extremely competent, and was happy to care for my dad, 4 hours of sleep at most a night is a recipe for disaster in that we stop performing optimally, start making errors in judgment, and puts us at risk of getting ill (ship going down).

My dad is thriving at his AL. The health conditions are still there, but he essentially has a great staff caring for him, and he is now stable. (He was hospitalized twice in 5 weeks; that’s when I knew I could no longer care for him well.) Just know that there are excellent places out there; it could be time to invoke that possibility. My best to you.

Please, do not try to force your children to do more. Is that really what you want for them? You are burnt out and NEED help, but should look outside of the family for help. If they wanted to willingly help, fine, but trying to use any tricks like guilt etc. to rope them in could be a mistake.

If his bizarre behaviors are making it difficult to get help, perhaps he needs more medications to help make him a little more manageable? Not to dope him up, but enough to make it so that he is not acting out, etc.

Dear Darlene: Let me offer a cyber hand hold for you. FTD behavorial varient is the nastiest of the dementias, and extremely socially isolating. Along with the upsetting and emotionally abusive and weird behaviors from your spouse, avoidance or abandonment from family, you might find your friends distancing you as well. Regarding our kids, despite being told their Dad's diagnosis, they appeared disinterested and emotionally disconnected knowing that as long as I was taking care of things, they didn't have to. They are zero support. As the wife and caregiver of someone with FTD it can be energy depleting and leave you feeling hopeless. Might I suggest specific FTD support groups. The regular caregiver support groups do not understand or address the challenges specific to FTD. Last month I went to the group with what I thought was the horror story to top them all regarding the latest behavior only to unfortunately have someone elses story top mine. It's a unique group... they are expanding to have knowledgable guest speakers too. Contact: Joanne.Robinson-Teran@ucsf.edu who moderates the group. Also, over in England, they have a well developed FTD program, probably the best in the world. The contact there is: a.willoughby@ucl.ac.uk . Though you may feel abandoned, you are not alone.
Also, I have found the more I can learn about FTD, the better I am in dealing with it.
A Heart Hug to You. Carla

I hate to say this but when kids and family members are like this, they CHOOSE to be this way. They simply do NOT want to be involved as it might have an effect on their lives and you will never get help from them. (Been there, seen it all.) And while I have no idea what on earth "variant FTD" (please write out names, not initials) - it is affecting you very negatively big time. That means somehow you must either place him (help is available but you have to seek it out with the help of professionals or you must get a caretaker.) When someone's mental and physical behaviors work against us and our lives, then we MUST do something or we will slowly be destroyed. Never, ever let that happen - we do not deserve it. You will not get help from your family - don't count on it - so YOU make the boundaries and decisions and just do what you need to do.

You need to contact an elder care attorney.

He/she can advise you on how to protect your assets, while getting financial help that will enable you to put your husband in a facility that can properly care fore him.

Someone with Frontotemporal can be very difficult to handle. Professional care is the best choice for you, him, and your entire family.

Yes, your children likely have many responsibilities, including child care, demanding bosses and many bills to pay on time.

Living near by does not guarantee that they have a lot of free time to take on added responsibilities. They are most likely already exhausted.

It is not fair for a parent to expect their children to nursemaid a very ill parent.

Parents should plan for their own care early on by talking with an elder care attorney and following the attorney's advice. It is not too late, and perhaps by following the attorneys advice, your husband can qualify for full coverage of a facility with medicaid.

In addition, because you are still married to your husband and mentally capable, the children can not make decisions, without your input. So, if they want to put him in a facility and you do not.....their hands are tied.

Perhaps you can ask them to visit several elder-care attorneys with you. Beyond that, your request is unrealistic, and if you persist you may drive your children away.