Devastating disease: Mentally, physically, emotionally, socially and financially

RetiredTeacher

DH has been exhibiting executive function deficits for a long time. He was diagnosed with MCI 4 yrs ago and he is getting worse cognitively, physically, socially. Finally getting an assessment this Friday. I have accepted that he has dementia, (his mother died from ALZ and his brother too last year. I understand it is a long painful journey and noone escapes the final chapter. With millions of people and families affected by this, must we all be decimated financially by this disease as well? It is so tough to watch our loved ones slip away a little more each day and the thought that we will lose everything we've worked our whole life for is staggering. Memory care is extremely expensive. The thought of using all our savings and having to sell our home that's paid off to finance care in the later stages makes me wonder how I will survive. Do I have to rent an apartment or move in with my adult son? Do I have to go back to work to pay to live in an apartment after we paid off our home?? How do others do it? I'm only 67 and could live another 15-20 yrs. Never expected to be in this boat after we planned, scripted and saved. Pls let know how you do it. Many worries for the future.

LindaLouise

I am in pretty much the same situation - also a retired teacher, 68 and we saved and lived frugally to have a debt free retirement with some cushion. Now - it seems that we are penalized for doing exactly this - our spouses have a disease where they will or do need full time care and we don't qualify for Medicaid. The requirement that we spend down to our last dollars in order qualify one of us for Medicaid leaves the healthy spouse in a terrible spot. It seems so odd that my options are to provide the care myself, or spend more than $8000 a month for LTC. The middle options - day care or home care, are really hard to find in my area, so not really options. I live in Washington State, a community property state, so there are no protections. Would love to know if I'm missing something…it is a very scary place to be when you thought you had done the right things along the way…

trottingalong

I’m 67, my husband 80. Like both RetiredReacher and LindaLouise, I’m in the same boat, our home is paid off, we have a small nest egg and have lived frugally all our lives so we could enjoy our retirement. We live in a small remote town in Northern California. Very few options for help with Alzheimer’s patients. No day programs, no geriatric doctors, etc. besides that, we love where we live. I refuse to sell my home and bankrupt myself. Looking into facilities, the cost would bankrupt us and our money would be gone under a year. Then I would be forced to sell my home and live off a small social security check. It’s overwhelming. After consulting an attorney, the 5 year look back for Medicaid would not work for us. We have no family nearby. The nearest adult child is 7 hours away. So I plan on doing what my 90 year old FIL did. Take care of my DH and pray he doesn’t get aggressive. It’s depressing and frustrating.

Iris L.

There is long term care from Medicaid for middle income people, distinct from low income Medicaid. Jo C used to post about this. The care is to provide a safe, simplified life for the PWD and respite for the caregiver. You might meet locally with others in your situation. Ask your local chapter of the Alzheimer's Association, Area Agency on Aging, or senior center for advice and connection to local resources and support.

Iris

RetiredTeacher

https://alzconnected.org/discussion/comment/207705#Comment_207705

You and I could be soul sisters! We did exactly like you did. Frugal, thrifty, saved for the future. Did everything right....didn't count on being bankrupt in retirement! I will do everything I can to keep DH home as long as I can and pay for some respite care so I don't go crazy. Hopefully his behavior won't become violent in the future. If he needs to go to MC, I would consider a second mortgage or reverse mortgage before i sold the house. Neither are pleasant options when our house is paid off. Praying God has a plan for him that doesn't leave us destitute.

Nowhere

Deep breaths. Since 1988 each state has community spouse (that’s the healthy spouse) impoverishment laws. I was a teacher who retired early to take care of my husband who is going on seventeen years with first MCI diagnosis and now experiencing stage six Alzheimer’s. He’s been on Medicaid for almost five years and living in a memory care facility for four years. His care was about $9000 a month when he was in a nursing home, but recently he’s been accepted in a memory care assisted living community and the monthly is about $4500. When he was in the nursing home, his cost was almost his full social security amount, but now in assisted living he pays almost half of his monthly social security amount. Yes, there is spend down, and the community spouse is allowed to keep half of the cash assets up to a certain amount depends of each state’s laws. Also, the community spouse can buy a new car, if desired, and gets to keep and live in the house. You won’t have to move, unless you desire to. I’ve moved twice since placing my husband. All the proceeds from my house were reinvested into the new house. I do not have a mortgage and just bought a new car. My SS and teaching pension are mine to spend as I wish. I can return to work if I like, sell my house, if I need funds to live as I grow older, and when I pass, the two states he has received state aide (Medicaid) will seek to recover their costs through estate recovery. Our children are aware that they won’t be getting an inheritance. And I am very grateful, that I can continue to live my life and not become impoverished by this costly disease!

I suggest if you have doubts and concerns about your state’s Medicaid laws and your financial future that you meet with a facility social worker or your Area for Aging (agency worked with me to apply for Medicaid and didn’t cost anything) and ask about your state’s Medicaid laws so that you can begin planning. Perhaps do an internet search for your state’s Medicaid community spousal laws. Best wishes for your financial security moving forward.

gampiano

Hello to all of you. I have been in the exact same position, and i cared for my DH at home until the end. He died in October, at home, with hospice —thankful for them, they were my saving grace. Every situation is different, but i did a few things to help us stay in our home and gain some income to pay for private care givers, part time. I re organized the house and had the master bedroom and bath upstairs professionally cleaned and painted, and rented it out . The tenant used the front entrance to come and go,( which we never used,) and we basically lived on the first floor , which became necessary as his disease progressed . I also put a small fridge and coffee maker up there, so it was like a dorm room set up. The tenant was gone all day , working so we had very few interruptions. Rents are high where i live, and housing is scarce. This cash income really helped, and I'm still renting out that space. Just food for thought.

Now I'm seriously thinking of renting out the whole house and leaving the U.S. Our healthcare system is beyond bad, and cruel. Looking for other options. Stay tuned.

harshedbuzz

@RetiredTeacher

Please see a CELA in regard to Medicaid planning. This is the safety net that can spare you some of the financial consequences of this disease for your lifetime. This is what Nowhere is describing as being a "community spouse".

HB