I am 44 and my husband is 52 with early onset dementia. I am definitely going through burnout.

What kind of dementia does he have? Some are assuming Alzheimer’s but I wanted to check because it may be a different type. Does your husband still work? If so, he may not be able to do so much longer. Maybe he would qualify for disability pay —though I believe this is typically not a lot. Do you work —not sure how that is possible if you home school your two kids. Do you all have health insurance? My heart goes out to you. I’m sure you realize that whatever form of dementia he has — it will progress, slowly or more rapidly. Longer term, it is fatal— but as others have pointed out, it could take decades. It’s difficult to get through the day now and it will get worse if he continues to live with you. It will affect you AND your kids. It’s not sustainable. You must find help or ways to adjust your life to cope.

Does he still drive and does he still have access to bank accounts, savings, retirement accounts, credit cards? Can he still use the computer and a smart phone? Do you ever leave him alone with the kids? All these are potential risks. Whomever diagnosed him, they should be able to advise you on whether he is safe to do these things or how to end them if he is not. And if it’s OK now, know that as he progresses it will stop being OK.

Is he on any meds to control symptoms? Is he cooperative with these meds? Does he sleep OK at normal hours?

I Second the adult daycare suggestion. I would also think about putting your kids in school so you can get your new life in order and find a job assuming you will need to become the breadwinner and insurance provider for yourself and your kids. It would be a good idea for them to have someplace else to go to be away from your husband and for them to have friends with dads who don’t have dementia and to have more exposure to normal childhood experiences. Other families who can take them to the park, etc. normal kid stuff.

the doctor’s office should either have social workers or be able to put you in touch with social workers who can help you locate resources to make all the changes you are going to have to make.

do you have any weapons in the house —- if so, this is another huge risk.

You say his family is no help. Do they understand the gravity of the situation?? Do you have other resources — your family, friends, church? I also second the suggestion for you to find a support group for yourself and possibly therapy just to have a means of processing your feelings. What you are dealing with is HARD.

I don’t mean to scare you or stress you out because I know when I was faced with all these issues (for my dad and he was much older when he was diagnosed, no kids in the picture) it all seemed totally overwhelming and impossible. But you have to prioritize your own safety and security (financial as well as otherwise) and that of your kids above all else because he is never going to get better. He will only get worse. Every year you spend trying to “make it work” with him still at home, is another year your kids will have in a bad situation. They are already losing the experience of a healthy dad no matter what. It’s so tragic. But think about when your older one graduates from high school in 7 years. Do you want them to look back on those years as “all about dad” and him getting worse and overshadowing their whole life? Or do you want to find a way for them to as much as possible thrive despite having a dad with early onset dementia?

The fact that you posted means you know you need help and you are looking to figure out next steps. You can do it! I am rooting for you.

Because early onset Alzheimer's can go on for 20+ years, you need to get your ducks in a row now. Make sure you have all your legal paperwork done before your husband gets too far along in his journey.
I would also look into an Adult Daycare Center in your area, as they are great for folks with dementia. Your husband can be there up to 5 days a week, 8 hours a day, and will be served breakfast, lunch and a snack, plus they offer all kinds of different kinds of entertainment to keep him busy.
Of course there is a cost, and if money is an issue, they do offer some financial assistance.
Because Alzheimer's is the slowest progressing of all the dementias, there will come a time more than likely that he will have to be placed in a memory care facility, but until that time comes, please make sure you're taking good care of yourself, getting in-home help to give you breaks and just make the most of every day.
I would also look for a local caregiver support group that meets in person or on Zoom. With you still having children at home the Zoom one may work better for you, although I will ALWAYS recommend in person if possible as there is something very powerful in being in the same room with folks going through the same or similar things as you.
This journey will not be easy, but you are stronger than you know and are going to be ok.
God bless you as you walk this very difficult journey with your husband.

Good Afternoon,

You need a Social Worker and call on the troops for all services to be brought in along with a "day respite" program. He is so young and this could go on for some time. You have to look at this long term and study your health insurance coverage.

Sometimes what you are presently doing may work for a period of time but then things need to change so that you will still be standing. You can't do this alone. Don't ask twice from family, if they are not going to help move on and find people or agencies that will help you.

Don't get stuck focusing on who refuses to help. It must be hard but you are in the middle of raising a family and caring for a sick spouse. I would also bring jn a caregiver so you can get out.

Yes. I do. Placement is the only option I can see for you that is fair to you and fair to your husband. I also feel that home schooling is not an option now for your own sake and for the sake of your children.

It is time to see an attorney about option, about division of assets, about what you must consider. This is horrific. A tragedy. I honestly cannot even begin to imagine what you, with your small children are going through.

Please go to Alz.org. Go to Facebook and get on Forums for Alzheimer's. Go to your doctor and to your local council on aging for some options and some pointers of how and where to seek help.

Your husband is lost to you and still living. This is the very worst catastrophe that can happen. My CPA lost his wife but didn't when an accident too her into a vegetative state for years. He was left with two small children. He had to divorce her in order to do division of assets or would have lost every single penny to her care while his small children needed caregivers while he worked. This is the nightmare you have entered and I could not be sorry.

See an attorney and get all the help you can. Your husband isn't even medicare eligible. He will need SSDI and placement for the safety and life of all of you.

Is he on disability? Can any of his income be used to hire a companion aid, or for some time at Adult Day Care?

Do you belong to a church that can provide volunteers to give you a break?

Consider contacting social services for your county to see if he qualifies for any services.

Do you belong to a homeschool co-op? Can any of the other parents take on teaching your kids for a while so you can have a break?

Have you looked for any local dementia support groups?

I'm so sorry that your in-laws are not helping. I hope you find the support and relief you need.