Caught in the crack

yazoorose

My 1st time to be here. My almost 70 yo husband was finally dx'd with AD about 2 months ago although we had started the process 3 years ago. I had a bout with colon cancer last year that put his problems on hold. Btw I'm cancer free. So I don't even know where to begin. He had to stop working a month ago and it's really hit us hard financially. We don't qualify for him to be on Medicaid...he didn't qualify for disabilty because he is past retirement age..all he has is Medicare. So if he has to go to a nursing home I have no idea how we will pay for it. Anyone dealt with this? This is breaking my heart.

gampiano

Hello Rose,

I am so sorry that you are going through this experience. My husband has ALZ, and like you, we had indications well before he was officially diagnosed in 2021. We are also in the same financial position more or less, but we do have supplemental insurance and my husband gets VA healthcare. Unfortunately, the "system" doesn't serve us very well, it;s either be broke or go broke in the U.S.. and we could never afford memory care, nursing home, or any other facility. Your heading, "In the Cracks" is an apt description .

Here are a few things Ive tried, and i can only pass them along. You will also get advice about going to an Elder Law Attorney, getting a POA and Health Care Proxy. These docs are important. Also the attorney will have some advice about finances.

So, here is a small list of things that could help you:

Contact or visit your local Council On Aging. They have a list of resources that you might want to use. I avoided Meals On Wheels for the longest time, and now i'm so grateful for those food deliveries each day.

The service is free, contributions are suggested but optional. Do yourself a favor and sign up.

Also, there may be a day program in your area for persons with memory issues. We tried that for a few months. I loved the program but it wasn't a good fit for my DH, who is a bit of a curmudgeon. It's definitely worth exploring however. Also very affordable. Your husband might like it, plenty of people do.

The same organization may have a list of caregivers in your community. This can be expensive, but you will need someone even if it is very part time. I wish I could afford more help, as i really need it, but i'm working on a plan that might be helpful i'll keep you posted. Also, there is a website Called CARE.COM, which might have a list of people in your area, They are charging all different rates and i found a wonderful person through this service. She only comes 2 Sundays a month for 6 hours, but it so helpful .

I also started to order my groceries online from my local supermarket chain and have them delivered! Until recently my husband and i would go to the market together, but only for small shopping. Again, i should have started this 2 years ago.

Also, want to say that i'm glad that your cancer treatment was successful and wish you good health going forward. Please keep posting, there is a lot of good information here. I tried to make this post mostly informational, because you need that right now.

Sending strength your way,

Maureen

toolbeltexpert

Hello Rose, Maureen has given you lots of good advice. The area agency on aging turned out to be the biggest help I found. They guided me into the Medicaid process which as most find out you will be broke or so close to it unless you have taken steps to protect your assets and it's different in every state.

So I started the Medicad process and as I was spending down our assets they changed the amount I needed to spend, I was lead to believe my 401k was mine but when that changed I studied hard and a lot of factors played into my decisions.

First was Medicaid facilities were in my area all older facilities and charged approximately 8500 a month. They did not have specific or dedicated mc units. They were a general population of skilled nursing rehabilitation folks with pwd in the mix. My wife spent just over a month in one of these type facilities. 8750 for 31 days

The facility I wanted was only 3659 a month but was personal pay only, it has a specific mc unit that is locked down has its own court yard and dining area and living room area dw is in a semi private room, the food is good it has cna's trained in dementia care. It is not fancy but the care in great. There were some really fancy places that started at 5500 again personal pay but as many have said a pwd doesn't really get to appreciate those luxuries.

So after realizing that our farm of 30 yrs would most likely be gone "asset wise" after I died, you can keep your home under Medicaid and after your death the money spent on care will come from the proceeds of the estate and at 8500 min it wouldn't take very long to wipe out an small estate.

The other thing to realize is if you take Medicaid you will lose his social security check except for appox 50 $. That's a considerable sum when you start talking about yrs.

So I made the decision to sell our farm, I downsized into a new home and banked enough for at least 5 yrs of care at the highest level, probably more though.

When I added everything up, that was the plan I went with. Not easy in so many ways but I got the choices I wanted.

Dw has been gone from home for over a yr now and that is another part of the equation. It is so hard to be alone after 45 yrs of being married. The dynamics that come into play are the hardest things I have ever done bar none..

Yes Rose it is heart breaking in so many ways. I am glad you are cancer free and you need to continue to think of you and your health. I know right now you might not see a clear path because each of us has a unique setting. You can do this, others will surely chime in with their experiences.

Sorry I was long winded

Prayers for you and everyone are lifted every morning and I know that God hears our prayers

Stewart

Ed1937

Hi Rose. Welcome to our little family, but sorry you need it. This is really a supportive forum, and you'll be glad you found it.

I'm glad your problems with colon cancer are in the rear view mirror now, but sorry dementia is taking a toll on your financial situation.

There is a lot of help available, but it might take some digging to find it. Check for any programs available in your state that might be supported by the federal or state government. There may also be other help through other local sources. If you tell us which state you are in, someone might be familiar with some resources for you. We will help whenever we can. Just let us know what kind of help we can give you.

yazoorose

Thank you all so much for your comments. What info I do have lined up with what you all told me. Praying about it for now..you know that line "if you want to make God laugh, tell him your plans"?..but hoping to sell house and make a little money...then move to TN where children are...and use what money we have to pay rent. It's so expensive there! We have enough for about 5 years with him at home. At 65 and him 70..we will not outlive a mortgage and renting seems easier since he can no longer safely or common sensically do anything but most simple maintenance around home. He can screw in a light bulb still, do some chores like vacuuming and folding clothes. Sad for a man that was in hardware business for 50 years and was the "go to" problem solver for many people. Anyway if we get closer to kids I will have some help.

I wish you all the best with your loved ones. And Im so happy to be a part of this group. Wendy

toolbeltexpert

Wendy I live in middle tn. And I know of another member who lives west of Nashville. We are happy you found us.

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Ed1937

Victoria's advice may be the most important piece of advice you ever get. Please heed it.