G

Merla

O

towhee

Once you have a diagnosis of dementia, you cannot get private LTC insurance. Even if you could the cost for someone after the age of 65 is prohibitive and most plans now only offer a specific amount benefit, not an unlimited one. I do not know about your state LTC insurance but I strongly suspect that the benefit is also limited.

Most people who live long enough will end up on medicaid. So it is important that you find out about the medicaid benefits in the possible states re assisted living and memory care. Also, that you familiarize yourself with the medicaid rules re assets, income, and distribution of assets. An Elder lawyer can help here.

I don't quite know how to put this, so I am just going to say it. Even though your mother is healthy, 20 years is on the outside of life expectancy. Plan for the average, and plan for the care needed for the different stages.

harshedbuzz

Once a person has a dementia diagnosis, they are terminally ill- full stop.

While it is possible to live 20 years beyond an Alzheimer's diagnosis, in reality being diagnosed that early would be extremely rare.

That said, I hear you on the frustration of managing resources in the context of a dementia diagnosis because of the uncertainty around progression. During the end stages of my dad's dementia, I had 2 aunts and the mother of a dear friend who all had dementia-- the differences in life span post-diagnosis were stunning. The ones who I would have considered "healthy" actually died sooner in the disease than the ones with poor health.

Look into Medicaid as a safety net. While Medicaid funding is federal, states can decide whether Medicaid funds can be used for a MCF vs a SNF. In my state, a PWD would need the level of care offered in a SNF to be covered while 6 miles away and across the river, MCF are covered albeit with significant waiting lists. A CELA is the best person to discuss this with.

HB

MN Chickadee

It's extremely unlikely your LO will live 20 years. My mother lived with Alz for about 15 years total which is unusually long, but the first 5 years she was competent and in control, could live independently and couldn't get it diagnosed (she was in her 50s and doctors didn't take her complaints of memory issues seriously for a while.) She would have been unable to live alone at around the 5 year mark, so AL followed by MC facility would have been necessary for about 10 years if she couldn't stay with family. A PWD who is physically healthy won't stay that way. The brain starts destroying the body as well. They deteriorate in many ways. So while it's good to plan ahead I think 20 years is extremely unlikely. I would see an elder law attorney for Medicaid and financial planning. Sounds like you will need to switch your LO to long term care medicaid eventually.

Quilting brings calm

I made the decision that I would do what what was best for them ‘now’. I can’t predict the future, but I can determine what their present needs are. My decision was a AL. They have been in an AL for four years now and have enough savings for three more. After that it will have to be an SNF and Medicaid. Mom is 85, and step-dad is 83.

Yes, some people live 20 years, but most don’t. Alzheimer’s is the slowest progressing dementia, and the average lifespan after diagnosis is 8-10 years

https://www.dementiacarecentral.com/aboutdementia/facts/stages/

Jo C.

Hello Merla, it is important to know that Medicaid is different from state to state in qualifications and what is covered. You will want to know for each state you are considering what the qualification criteria are for LONG TERM Medicaid which is different from regular Medicaid. If you look online, use the term, Long Term Medicaid AND be sure to use the current year in your search as things change from year to year. By the way, in all probability, the train has left the station for Long Term Care Insurance; once diagnosed with dementia, that is usually a stop for most if not all companies for obtaining coverage.

Some states are more beneficent than others re Medicaid, but all have qualification criteria. Some states Medicaid will cover ONLY skilled nursing home care level of care which is nursing home level, and do not cover Memory Care or Assisted Living. Some states will cover a bit of care at home, not full-time; but that is fraught with all sorts of criteria and not all are able to get such a benefit. You are going to want to check specifics accurately.

States vary in all this, so you will also want to check into that for each state you are considering. If you are going to use an attorney to assist with all and sundry; be sure to use a Certified Elder Law Attorney (CELA); in the state in which she will be residing in. If there are no Certified attorneys in your area which does happen; then use an Elder Law Attorney that specializes in that and has been in business for a few years or so in the state of residence.

Best to get knowledge in place before needing to make decisions. When I began, it was quite a wake up call to get the specifics.

J.

FAHNJL

Find a CELA. If none are in range, contact one in your state and see if they can meet you on Zoom

Good luck.

yarnball

Quilting brings calmSep 19, 2023

I made the decision that I would do what what was best for them ‘now’.

THIS was a super helpful comment for me. I am trying to focus on "moments of joy" while also trying to figure out what is best for safety.