For almost 4 years now, I’ve been the sole caregiver for my husband with behavioral variant FTD. 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.
We have three adult children, two sons and a daughter, who are all at risk of having this terrible dementia, as it is the genetic form, but even though they hear me say how very difficult it is caring for their dad, and how I feel like I’m deteriorating along with him, they only advise that I hire a professional caregiver from an agency, or put him in a care home (a cost prohibitive option), but they never voluntarily reach out to me, to see if they can help me out in any hands on way, and give me a break from the 24/7 care. And they all live nearby. If I want any help from them, I always have to ask, and they usually will have an excuse as to why they can’t, or reluctantly give me a small amount of their time. I know they’re all busy with their lives, jobs and families, but their dad was always a good man who provided for them, and would help them out however he could. It doesn’t seem right that they can’t reciprocate more than just the occasional “stop by” and that they don’t seem to understand the devastating emotional and physical toll their dad’s dementia is taking on me. I don’t want to come across as a complainer or lay a guilt trip on them, but I’d really appreciate more help with the daily care of their dad, at least until I’m able to hire some in home care, which is difficult, because of his bizarre behaviors. Maybe they just don’t want to be with their dad, as they see in him, their possible futures:-(
Any ideas on how I can get my kids to give me assistance without making me look like the bad guy, would be so appreciated!
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.
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.
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
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.
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?
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
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."
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!
It's time to look into Medicaid and placement in a facility before you wear yourself down to a point of no return.
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.