Early Onset Dementia Can't Get Help

TedLeger

My wife is in the final stage of dementia. She is only 60, turns 61 on April 22. So she is still too young to be on medicare. It is going to take us a while to get her on medicaid, because I have to sell 2 of our vehicles, put my work van under a company name instead of just using it under my name, and a few other things. But she needs help now, not 3 or 4 months down the road.

I know it would seem that by now I would have had everything completed because she has had dementia for a number of years. The problem is she is so young half the doctors/psychiatrists/neurologists said she had dementia the other half said it was some type of  serious stress caused from her oldest son, my stepson, passing away 8 years ago. From that point onward she started changing and now we finally got an official diagnosis just a few months ago saying she indeed does have dementia. And she is in the final stages, I have to bathe her, she can't communicate at all, she doesn't remember my name or anyone else's except her brother and one of her cousins. And she can't look at them and say their names, she just calls everyone by their names.

We have really good health insurance. The problem is everywhere we turn, health insurance will not give us what is needed to care for her until she gets on medicaid, and can go into a long term facility. Her primary care physician finally was able to give us a referral for home health. They came by to assess her today and told us that all they can do is come by once a week and get her vitals. 

We have been married 24 years but I was 22 and she was 36 when we got married. So now I am only 46, and have quite a few years left ahead of me to work. I can't be home with her during the day so my mother has moved in to help. But she is limited in what she can help her with because my wife is almost 20 years younger than her. And my wife is in such a state of confusion that she barely will let my mother help her with anything.

I am trying to see if there are any exceptions that can be made for her age. Even those with early onset dementia usually are 65 or older once they get to this stage. It's like there is no programs out there for those of her age. Her condition is going downhill extremely quickly. And at this rate we won't be able to take care of her by ourselves. 

If anyone has any solution to this issue please help. 

aod326

Hi Ted. I'm so sorry that you're in this situation. With my husband, we didn't know what was wrong as his degeneration started with seizures. By the time he died, of EOAD, he was just 60. Your wife absolutely is eligible for Medicare, on the basis of being disabled by her condition, and in fact you should be able to receive back-payments to when she became incapacitated. A diagnosis to back this up would be great, but my husband didn't have a diagnosis until autopsy, and he got Medicare payments. (He was still covered by my insurance as primary.)

One important thing about Medicare is that hospice services, and supplies such as incontinence needs, are provided totally free of charge. While the number of hours of care differs by hospice, you'll find this extremely helpful.

Other than Long Term Care Insurance, insurance won't cover you. The services most dementia patients need are what's known as "custodial services". If she had an additional illness that required skilled nursing care, then she'd be covered. (Frustrating but true.)

In terms of Medicaid, I advise you to see (or Zoom with)  an elder care lawyer as soon as possible, often referred to as a CELA. He or she will be able to advise you regarding Medicaid, as well as other things. Moving assets such as your car into another name - company or individual - isn't likely to help you as Medicaid has a 5-year look back period, for exactly this reason. If you're like me you may think you have to have almost nothing to qualify for Medicaid - that's not the case. Depending on your state, you will be able to retain quite a bit.

One last thing. If you need additional medical support, you need to look for a geriatrician, or geriatric psychiatrist. I know your wife isn't geriatric, but they are the ones with the expertise. You may struggle to get someone who will accept your wife because of her age, (I did), but it may be worth a try. 

Sorry for the long answer, but I know how lost one can feel. Very best of luck.

Crushed

is she on social security disability?

  

60 falcon

Ted, I second everything that aod326 said.  My wife is 62 now and she was 58 when she finally got her diagnosis.  She qualified for SSDI and got two years of back pay for benefits and automatically received Medicare coverage.  My wife might be slightly behind your wife as far as symptoms go, but not by a whole lot.

TedLeger

I really appreciate the comments but my wife cannot get SS Disability. To get that you have to have worked 5 out of the last 10 years. She hasn't worked but for a few months since we got married 24 years ago. I am certain that also affects whether she can get medicare as well. We have tried with a lawyer. They said she isn't eligible. 

She will be eligible for medicaid once I get everything in order but that still can take months and she needs help as soon as possible. I keep hitting a dead end at every turn it seems.

JoseyWales

Welcome Ted, I'm so sorry you're here.

Early onset is its own horror. My DH is 58 and just went into memory care. Luckily he qualified for SS disability, but even that only goes so far. I'm 54 and still have to work.

I'm going to tell you what I'm doing to qualify for Medicaid, but know that this is different for every state. I can't tell you how important it is to get an elder care lawyer now to help you. Even then, the first one I started with gave me bad advice and I had to start over. 

There is a 5 year lookback. Transferring assets will haunt you. On the advice of my lawyer, I did get our vehicles out of DHs name. It doesn't change the fact that they're still assets, but now I don't have to worry about his name on them. I also took the house out of DHs name. Surprisingly easy. Again, it's still an asset, but easier to control now. 

In my state, anything in my retirement accounts (not linked to my DH) is mine and doesn't count as an asset for Medicaid. My house doesn't count as an asset. What does count is the value of what's in his retirement accounts, our saving and checking and our vehicles and anything else we may have of value (like a second property). With the help of my lawyer, I have transferred his retirement account into my name. That would have been IMPOSSIBLE without a lawyer. Again.... this is MY STATE. Yours may be different!

Seriously, call a lawyer now. I feel pretty confident in most financial matters. I do my own complicated taxes. I have always taken care of the retirement accounts. But on qualifying for Medicaid, I had NO IDEA how to do it. While my lawyer is pricey, I would have lost several times that amount and had a much bigger headache if I had done it on my own (or even on the advice of that first lawyer!) 

I wish you the best. Doing this while working is a nightmare.

TedLeger

Yes I actually went to a lawyer and they said my wife will qualify for medicaid. I have to sell two cars and a number of other things. The biggest problem is the time it's going to take to do everything the lawyer said to do. She needs the help now, this stage of her dementia suddenly came on and it put us in a bind quickly.

I mainly need to find some temporary help until she can get under medicaid and get in a nursing home. I appreciate the help

jmlarue

Since Medicaid has a retroactive benefit, it may be possible for you to find a custodial care home who would accept her sooner if you assign the cost of her care to be guaranteed from those retroactive benefit payments. The retroactive benefits are what makes it essential that you pull out all the stops to get her application filed as soon as possible so you can have a definitive answer on property that must be sold or any spend down in assets. You may find that it's less problematic than you think.

As far as immediate in-home care, do look for organizations in your area like the Regional Council on Aging to inquire about low cost, no cost care. The disability is the qualifying distinction - not necessarily age. Here is a link to my local service agency so you can see what services might be available in your state or your area: https://www.nwrcwa.org/aging-disability-resourcessenior-info-assistance-programs/#section2  These organizations exist across the U.S.

Additionally, reach out to some of the charitable organizations like Catholic Community Services or other faith-based groups (Lutheran, Methodist, etc). If nothing else, they might have volunteers who can give a few hours a week providing respite care visits so you and your mom can have a break. Housekeepers are much cheaper and easier to find than caregivers. You can relieve some of the stress by hiring a weekly housekeeper to take over household chores. Also look into the availability of food services like Meals on Wheels to provide at least one prepared meal a day for your wife. This program asks for donations as a daily fee, but if you feel you cannot afford to donate, no one expects you to.

One final thought is to contact your local senior center for a list of charities/organizations that may be of help to you. Our Senior Center says they provide services to anyone 60 and over. Even so, no one is going to ask a person for proof of qualifying age.

JoseyWales

I had to wait almost 4 months longer for placement than I wanted to because of all I needed to do to get DH to qualify for Medicaid, so I get where you're at. I was able to hire someone to stay with him while I worked. It was expensive (although I hired someone private pay so it wasn't as expensive as an agency) and took all my take-home pay plus a little more of savings, but I knew it was temporary. 

Did your lawyer have any ideas for immediate help? If you didn't ask, try asking them. Call your local Alzheimer's Association, too. Both gave me leads to call for help, although in the end neither gave me anything that helped. 

I'm sorry - no matter how much advice we can give you here, I'm sure you probably feel like (and probably have!) done it all. Like I said.... early onset has its own special problems and just sucks.

TedLeger

I appreciate all the answers to my questions and concerns. As of today she was able to get on Hospice. That's a start. I am very appreciative of the help. Until we get on medicaid it will be very helpful. Thank you all for your concern and care.

sunshine5

Good luck! May God give u strength to cope!

jmlarue

Hospice is a good start. It can open other doors to help while you're working on the Medicaid angle. Wishing you an easier road forward.

Mint

Glad you found a little help.