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. 

Stuck in the middle

In your place, I would talk to a Medicaid lawyer to find out what the spend down rules are in your State.  You may be able to get help by signing an agreement to sell the cars, for example.

This seems to be a great time to sell cars btw.  You can probably sell them to a dealer pretty easily.

TedLeger

Its more to it than just selling the cars I'm afraid. It will probably be months before we can get her on medicaid. I need some help right away. She is so hard to care for because she is in such a confused state. Thank you for the help. We are already working on this though.

SusanB-dil

Hi TedL - welcome to our little corner of this world...

Wonder if she would qualify for a hospice evaluation? 

Also - check the 'solutions' tab above, and there is a number you can call for ALZ assistance - you can call 24 hour Helpline at 1-800-272-3900 and ask to speak with a Care Consultant

TedLeger

I wouldn't think she would be able to get hospice care yet. But that's a guess on my part. She has lost about 25 pounds over the last month because she suddenly went to eating far less than she used to. But she is still moving a lot because of the disease. Just shuffling things around and rummaging. 

I called the Alzheimer's association they gave me the information that they could, which has led me to where I am at. Closer than before but not close enough. I do appreciate the help.

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TedLeger

Ok I appreciate the help. Yes I've been to an elder law attorney. Our biggest hurdle right now is time. I have to sell two cars and a number of other things according to the lawyer. So the issue is the 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

Iris L.

TedLeger wrote:

I wouldn't think she would be able to get hospice care yet. But that's a guess on my part. She has lost about 25 pounds over the last month because she suddenly went to eating far less than she used to. 

"Failure to thrive" as defined by weight loss is an admitting diagnosis for hospice care for PWD (person with dementia).  Hospice care does not mean death is within six months.

There is a type of Medicaid for middle income people.  Did the elder attorney discuss this?

There are many in your situation on the Spouse/Partner board.

Iris L.

SusanB-dil

Just a thought - would you have to actually sell the vehicles, or is there someone trusted that you could transfer title to? - so would be in name only...  but out of your name (even if for maybe $5.00 or something if a 'sale' would be required to show). 

TedLeger

For both disability and medicaid the government will look back 5 years to see if you have transferred anything in such a manner. I had a friend of mine his mother transferred her home into her sons name 3 years prior, and when they saw that she didn't qualify. It's just tough for many circumstances.

MN Chickadee

If she lost 25 pounds in a month there is a good chance she would qualify for hospice. Weigh loss is a big piece they look for. Can't hurt to have her evaluated. If she doesn't qualify right nw it is good to be on their radar regardless because things can change quickly. It wouldn't be a sitter or day to day care, but at least they would bathe her and their nurses and social workers would come in. They would provide any medical equipment she needs. Can you prioritize the selling of the vehicles and use the money they bring in to pay for some care? Either moving her to a facility under private pay as you wait for medicaid, or bring in some hired help to get you some respite? I see you have tried the Alz hotline, what about your local Agency on Aging? Sometimes called a council on aging or similar. Most counties have one and they will be tuned in with local resources. Are there any adult daycares in your area? Some are high acuity and able to handle nearly every stage of dementia like toileting, immobility etc. They tend to be very affordable compared to hired help in the home, and could be another way for you to get some respite to take care of the financial matters and your own well being.

numb

Ask about the medicaid waiver program with spousal impovershment. You can have alot more in assets and income to qualify for medicaid. Good luck.

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.