55-year-old Early Onset: HOW do people pay for memory care?!?!

Mollykazoo · April 9

Hello,

I am looking ahead to the impossible-to-predict future and feeling miserable. I'm so confused about some BIG questions. I understand that, as my husband's dementia progresses, we will make adjustments, try to keep him and other family members safe, and keep him at home as long as possible.

I understand that SSDI will replace SOME of my husband's income and that he will be eligible for Medicare when he's 57. I understand the the CELA who we will see later this week might rearrange our money to protect it and that, as a result, my husband MIGHT be considered low-income and then receive Medicaid (???). We are not wealthy, but we do have a home with equity, three cars, and some retirement savings. We also have three kids (21, 18, and 11) with a small amount of college savings for each.

My question is if/when it is time to get DH in a memory care facility, how in the world will I pay the $7000-$9000/month?? Are there ways for middle class people to get support for this? This is especially a concern since we have such a young child and I understand the dementia can lead to unpredictable or violent behavior. If that happens, I will not be able to continue to have my husband at home.

HELP!? I'm so worried.

Molly

Marta · April 9

These are questions to pose to the CELA. Medicaid is different in each state, but in general it is required to spend down assets. Medicaid looks back five years to determine whether assets were sequestered.

Belle · April 9

Hopefully others will come along and respond as I don't have a lot of experience in this area. There doesn't seem to be a whole lot of help outside of self-funding, Medicaid and possibly Long Term Care Insurance. If your husband was ever in the military is some additional help there but even that is pretty limited. Your CELA should be able to help at least let you know if you qualify for Medicaid.

Maybe there are some programs in your state that would be helpful? There is a daycare program in our county but my DH is not 60 and they won't take folks under 60. There is a private pay program in our area but it has a long waiting list and is probably 1 hour plus round trip to get there.

upstateAnn · April 9

You are finding out a sad truth. In this country, old people with dementia, have very little value. I live, fortunately, in NY. We pay high taxes, but there are provisions for items like subsidized home relief, etc. This costs money. If you complain about taxes, okay. Without them, however, no services like these are possible.. I support more aid for people like you. Unfortunately, we have an election where a large number of the voters want MORE tax cuts. Meanwhile, it breaks my heart to see this. However, many believe that we are on our own. We must pay down our savings, etc. I am among the fortunate ones who planned for this and have adequate funds to pay for memory care when the time comes. I would gladly pay more Medicare and social security taxes to assist the less fortunate. However, I do not see this happening, especially in States unlike NY, Meanwhile, a Senate candidate in . Wisconsin said folks in nursing homes should not have the right to vote because they will die soon. Sorry for the rant, but I am very sad when I hear the economic struggles of folks in my support group.

LindaLouise · April 9

https://alzconnected.org/discussion/comment/205103#Comment_205103

This is a sad truth - and the more I learn, the sadder it becomes. For example, imagine if you got any other disease, and were told to exhaust your own personal funds before there would be financial help from insurance of any kind. Our LOs do have a real disease, and have paid taxes into our system for a lifetime, yet the financial help they need for the care they REQUIRE is not available. Also - if you need a very, very expensive new drug for Alzheimer's, there is strangely money for that, but if your caregiver needs a few hours of respite care, or your family needs some help with LTC costs, that is not an option. I realize that this is not helping with the question - How do people pay for memory care? - but the fact that it falls on the families of those unfortunate to get this disease, is so sad. People pay for care by using savings, using Medicaid, which often tries to recoup their costs later, or finding a job to pay for the costs. This is often very hard to do when people/spouses are older…

jfkoc · April 9

Health care is simply not free. I have Medicare A,B,D,F as well as a Long Term Medical Policy.

I think a lot of the problem stems from a lack of knowledge of what "might" be needed. I know that was true for us until we did estate planning. We had all kinds of insurance but not any medical protection.

When my husband had a radical proststectomy (sp) years ago at at Barnes-Jewish the total bill was under $10. This was post estate planning.

Yes, we paid monthly for a period of years for insurance but saved thousands when care was needed. I now pay for LTC annualy what one month in a facility would cost.

It is all a gamble but thesse are the odds I have chosen.

Now if Medicaid becomes the default method of payment you will be able to get care but in my opinion yu will not get the choices and/or kind of care you might want.

juliemjh · April 11

I can really relate to your post and with the exception of our childrens ages feel I could have written this post myself. As of January we lost our medical insurance due to my husband being out on longterm disability with early onset, he is 59 and was dxd in 2020. He was just recently approved for ssdi and with that he will qualify for medicare in 2 years. what do we do in the meantime? I'm sorry we're all having a reason to be on this site.

M1 · April 11

Hi julie. Go to healthcare.gov and buy a plan. You may qualify for a tax benefit because of reduced income. Unfortunately, if you dont, plans can be quite expensive for those of us in the pre Medicare years. I freelanced for several years at that age and had to buy my own coverage, at age 62-64 it was $1200/month (i did not qualify for any subsidy). But I considered it way too risky to go without coverage.

55-year-old Early Onset: HOW do people pay for memory care?!?!

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