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
Make a list of the things you really want/need each week. Be specific as possible.
Time for a family meeting!!!
Let them know that the finances do not allow a level of assisted living.
Of course they are scared. At this point your entire family is scared of the future ==you too. Time for them to deal with it, and also get a glimpse of what a medical condition AND caregiving options may be for THEM in later years.
Oh, you poor dear. You are experiencing disappointment from both your husband and your kids. You are a saint!
I don't dare tell his Papa. Life is very different. I have someone who can cut the front but not the back. I figure we live in the country and if it's not cut in the back....then we lose out on the beauty.....but it is what it is.
I don't have the heart right now to see your responses. Hopefully, you get some help.
It would be nice if mom informed them there is no more freeloading.
If they want money, they will get their butts down here and work for it.
Of course that will not happen.
If you are overwhelmed then it’s time to place your husband in a care facility. We have had to do this recently with my elderly mother and it’s the best thing we ever did. There is so much more peace for my dad and myself now. We can visit and know she is in good hands with qualified caregivers.
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.
I looked it up myself and just now use the "variant FTD" - 380,000 results!!!!
2) "...help is available but you have to seek it out with the help of professionals or you must get a caretaker..."
Plenty of suggestions from others to do this, but understand NOT everyone qualifies or knows what "professionals" to seek out, and many also don't have the money to pay for said professional help, a facility or a caretaker. Rather than regurgitating platitudes, more detail about who to seek help from, where to find them AND to know that in MOST cases Medicaid only covers NH. If the person doesn't qualify for NH care (yes, you NEED to pass the standards for that) and/or doesn't meet the Medicaid requirements, it's a no go. So, do you know of other magical places OP and others can seek help or hire people with no money to pay them? Speak up, ears are waiting!
3) Doing something and/or not letting it happen isn't as easy as saying this is my boundary, no one crosses it. If OP hasn't money to hire help, can't qualify for assistance and so on, what good is saying set boundaries and "Never, ever let that happen..."?
OP needs concrete advice, not a magic wish unicorn.
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
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.
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.
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 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.
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.
Unless our adult children are really handy AND wish to help, this is the best solution. Less chance of hard feelings, the work gets done, the help goes away until the next project and can be fired if they do a crappy job!
I would much rather pay my kids than someone else, but if they can't, won't, don't want/need the money, can't/won't do the jobs/tasks, then so be it. Hire someone local and make their life a little better!
I'm currently needing to find someone who can do the rest of the needed renovations (this place still needs a lot of work, not huge jobs, but enough to keep someone busy for a while!) I'm relatively new to the area, so I don't know anyone, but would like to find some person who's kind of a jack of all trades (like I was) who can likely do most of the tasks needed, for a reasonable wage, and don't bail on me! I am relatively easy to work with, can share tools and ideas, and be the "gofer' for many things. One day...
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.
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.
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!
Also, your children should not expect you to baby sit. That is something some grandparents do because thy enjoy it, but it should not be an expectation.
When they ask simply tell them that you are overwhelmed with the care giving for your husband.
Also, you should not be expecting help from your children. Your husband needs professional care, now.
Also, as you noted, your husband is becoming aggressive. This is not safe for you, your children or your grandchildren.
Unless your children are in the medical profession, they are not prepared to rise to the task of caring for an aggressive person with Alzheimers.
Protect yourself, and protect your offspring, by getting professional help or admitting your spouse to a appropriate facility.
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
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.
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.
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.
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.
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."
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