How does one afford the cost of assisted living and/or a continuing care community? I'm so naive, I thought that in a few years, at age sixty, I could easily transition to a continuing care community. I have been living in my family home over the past several years while on my SSDI for my SPMS.
But, unfortunately, I can't see how I can easily afford $2,500+ a month for care. Would medicaid assist in costs. Although I am still at the "you look so good stage" my fatigue, vision, cognition, balance and bladder are very problematic at that is NOW.
In four years, my condition would be worse, even if I use the proceeds from the sale of the house, how does one pay for assisted living? Thanks for sharing your tips for long term care costs.
Written by
DM0329
To view profiles and participate in discussions please or .
I'm beginning to realize that all the acclaimed support for the disabled and seniors is nothing more than smoke and mirrors. I'm always hungry (except when friends come to my aid) I have to fight for everything it took 3 YEARS to get an appointment for an eye appointment and some new glasses. I still am waiting for the actual glasses. It's a fight for every single little benefit that big brother touts as "extra" it's more BS to go with the MS BS
I wish I had some tips bit honestly the percentage of the disabled and homeless is on the rise and I live in constant fear of it. Will be watching your post to see if there are some for me too
I can't offer any advice. My 80-year-old mother has a great income of 3 gov't pensions and her SS, and she has enough money in Savings to make you gasp. She started checking on the prices of local facilities and discovered that even after selling her current house, she'd be completely broke within a year. I honestly don't know what people do. We have tentative plans to move her in with me when the time comes, but she'd have to sleep in my very tiny living room.
The best I can suggest is to look into home healthcare and unlicensed handymen, and maybe set up appointments with your local SS and Welfare offices to find out what's really available to you. Also see if your county has a Bureau of Aging that might be able to offer advice. I think it's cheaper to have someone come into your home to provide care, but it wouldn't be affordable if you needed help 'round the clock.
I miss the days of big families that were able to take care of each other. My great-grandmother never had to leave her home, and everyone who possibly could took turns to see that she had 24/7 care for the last year or so of her life. She got to die in the same bed where she gave birth to 10 children.
My thoughts are with you, so please keep us posted.
What I have learned is that's the way it is structured so Healthcare gets ALL your money then the "extra help" kicks in and eventually when I end up in assisted living I will get an allowance of like 40.00 a month from my disability and health care gets the rest. It's a dirty dirty deed the way they have it structured
That's my understanding, too. I believe my ex-husband learned all that the hard way. Unfortunately, he could have stayed at home but thought he was taking the easy way out. Old folks' and disability care has become a sad joke these days.
The only way I've seen regular, middle class people afford residential treatment is to have disability insurance (which it is too late to get now), have excellent insurance and pensions, or go onto Medicaid. Even people who have money in the bank have ended up using it all up for healthcare. wound up on Medicaid anyway. ugh.
i am managing by having an aide one day a week and working full time. very little savings that will last maybe a year if/when i stop working. social security is not enough to live on. i wish you the best DM. the system is not set up to care for the disabled or aged or both. I don't want to become a burden to my child. Not sure where this will go. thanks for the topic.
Because i was stay at home mom after being a nurses aid i didnt qualify on my own but had to wait until 67 not 65 for soc sec. not on disability with MS because denied and i was told not to try..couldnt walk and had the usual anti phone call...i can get assisted living without poss selling home but here in states a fee per month in Boise is approx 4000 a month with added food, assistance sheesh...if i had that..id have help in. without husband eventually more assistance after jumping thru red tape....here i lay in bed today greatful for this bed. im sorry we dont have better news but..keep on keepn on and let us know. HOPE
After working in a health field what happens is you have to spend down all your savings then you are eligible for Medicaid which pays for your nursing home care and you only get a small amount around 105. dollars a month to keep out of your social security. They get the rest. If you get really good pensions then the better place you can live in an assisted living, if it's enough to pay the monthly. But how many people have that kind of continuous monthly income.
You have asked the million dollar question. Depending on which state and country you live in, the answers may be different. There are different levels of care, as well. Planning ahead is one major step. Call Medicaid, Social Security, and even your state legislator. Get all the information you can (also knowing that Medicaid, SS, Medicare can all change in a moment). Get a 5 subject notebook and keep notes. Write down questions as they come to your mind.
$2500 sounds like a deal. In my area, the cost of living could easily double that. Don't forget about home healthcare. Daily nurse visits. Some people move in with a relative and have nurse support.
Keep us in the loop if you find out anything good.
I should add that I am on assisted living at home currently. That part of the extra benefits I do qualify for at no additional cost. Well other than the yearly renewal interviewd and hoops that I have to jump through to keep the benefits. It has gotten better over the last 2 years though. Now DHS has an app that they can monitor my bank accounts so they know my expenses. So I no longer have to go through a boatload of paperwork. I am on Medicare and the "extra help" is Medicaid. However I'm not allowed to have more than 2000 dollars in my bank accounts. Which that hasn't been an issue for a long time. 😖
Well, I don't have that issue as I only have Medicare (Pennsylvania didn't expand Medicaid) and I was dx at age 26, started tx at age 29, and "retired" at age 45.
I am a bit under 130% of the FPL (federal poverty level) threshold. But, the family home is my only asset, and it's my primary residence (so it doesn't count) but my fifteen-year old car does. LOL
Fortunately, the make holds it's value, so if I'm "lucky enough" to go to the CCC, I can shuttle it up and sell it to throw my CCC costs. Assuming I can still keep it on the road for 4-5 more years?
Socialization and a community of care sounds priceless to me! 🙏🤞😅
Yes social interaction is a must. I became far to much a hermit/recluse type and it ended me up in a psych ward last October. People are not meant to spend long periods of time in isolation.
Sooo fkn true! Yes; I really lost my mind in 2022 due to the 2020, 21, 22 Covid shut ins. MS causes social isolation anyway and the Global Pandemic really messed with me too.
Socialization, gratitude, and humor are essential. And a rescue animal helps, a dog, a cat, a bunny, a pig, whatever. 🤣🤞
As I found out when I was a single working mom, and my mother was no longer able to live independently, her monthly costs were more than my monthly paycheck. Those lovely retirement places, the ones with apartments and dining rooms and on and on and on...are still more than I can afford even with long term care insurance. The places available for those dependent on government stipends are often grim and grimy places where the old are sheltered, sometimes not much better than abandoned animals. As I finish my 83rd year, this is constantly on my mind. I have zero illusions about what awaits me if I live too long.
I simply wish you the best as you're wrapping up your 83rd year. Although the MonSter gives us all a crappy roll of the die, I pray you still celebrate "Life." 😇🙏
Thanks to everyone for replying to my post. Indeed this issue is more complex and confusing than it should be IMHO. Unlike Allen, I am NOT dual eligible.
I like the idea of a CCC (Continuing Care Community). I am happily divorced and have been living in my family home since my father's death in 2009. FMV is about 180K. But, everything fluctuates and the basement floods during heavy rains. I will sell it AS IS I suppose.
In four to five years (Age 60 or 61) is the EARLIEST than I can move to an assisted living place. I know home care is cheaper, but I live alone (with my new BFF my rescue kitty) and only family (a shitty brother is in FL and I'm in PA near Pittsburgh).
I'm looking at a CCC (no buy in option too) so I figured I can use 100% of the home assets to pay for my care. But, even if life expectancy is shortened 7 years due to MS (woman's current live expectancy is 77ish? in the USA?).
Age 70 at least, right? So, I'm looking at FIFTEEN-TWENTY years at least? But, it's the FINAL STAGES OF MS WHERE WE ALL NEED THE CCC: CONTINUING CARE COMMUNITIES.
Again, I think it's a great option. Age in place; and die in place so to speak. It's just me and my kitty. Sign me up! And switch me off. Just Kidding!
I think I would be happier even though I don't look age 56, assuming that I won't look age 60 or age 61 with invisible disabilities, but I feel my rollator coming upon me quickly too. And, can't you get a rollator of some sort from MSAA as well?
A community is vital to wellbeing; isolation hurts, no? The socialization would be very helpful. My fatigue and cognitive dysfunction killed my career at age 45. Eleven years later it's so much worse now, but y'all get it right?
Pennsylvania did NOT expand Medicaid, so I only have Medicare, but I do get "Extra Help" for my MS Meds only (but that's huge as the donut hole is several thousand dollars right?). But, I am blessed in many ways (that I have the family house to leverage).
Again, thanks for sharing your views. I appreciate it greatly! As they say, "Misery Loves Company." 😂🙏🤞😽
After helping my parents find assisted living, I think I can offer some advice. We toured many places and depending on what type of apartment one prefers, the monthly fee in my area for an upscale place starts around $3000/month and goes up from there. For them, that included meals, laundry, housekeeping once a week, twice daily well checks, emergency call necklaces, social activities, transportation to doctors, shopping, church within a certain radius, exercise classes in gym and heated pool, and a limited number of meals delivered to the apartment if they were ill. Extra fees were charged depending on the services needed, such as medication management, transport, showering, dressing, etc. There was a cap on the fees per month. Until my stepdad needed hospice care, no extra services were needed fortunately. There was nursing care available around the clock and also a connection to several doctors, although we stayed with my parents’ doctors.
My stepdad had a long term care policy that he had purchased decades ago, and that paid 80% of their monthly fee. But, I do not think long term care policies are the answer anymore, The policy he had is no longer offered, and my mom had a policy with the same company which just offered a buyout because they expect to go bankrupt. People are living much longer than expected when these policies were written, and they are very limited in what they will cover and how dependent one must be before they will pay. My mom has carried her policy for years and even at age 89 with serious issues it still could not be activated because she can eat, bathe, and dress herself (she now lives in Independent living and still gets meals, laundry, housekeeping, and activities).
So in my experience and having toured many of these places, my advice would be to seek out a not-for-profit facility. The ones I have seen are just as beautiful as the for profit, and although there might be a buy-in, even if you run out of money they continue to support you for the rest of your life. Some places pro-rate your buy in and refund your money for a period of time if you move out, and some guarantee 90% return, just something to look into.
I agree that the most cost effective plan is to remain in one’s own home if it is safe and possible to do so. Also, hospice care is available in any of the places I mentioned, at home, in assisted and independent living. My mom is now on hospice care and doing very well, but at no cost to her they provide supplies, visits from RN, CNA, social worker and chaplain, they order her meds so no trips to the pharmacy, and they have a doctor on call. One does not have to be near the end of life to receive hospice care. Hospice is a terrific resource and I suspect it is under utilized because people think one needs to be near death.
I know this is long-winded so I will just recommend a book called “The Fragile Years.” It is a great resource and explains options none of us might consider, and also addresses these financial issues. And, as an added thought, don’t forget about Meals on Wheels. No one should go hungry.
Thank you so much for your learned responses. You've walked that path and known what I should look out for, and I need all the insight I can get. FWIW I will check out your recommended book, "The Fragile Years."
And, I wonder if my $23 a month in food stamps (because my monthly medical care is more than $35 a month in Pennsylvania) would continue if I move to a CCC?
And my "liquid" assets are below the $6000 threshold, so Pennsylvania pays my monthly Medicare premium, but most importantly, I qualify for "Extra Help" for my very expensive MS tx. That pretty much sums up my assistance, but that is priceless IMHO.
Again, thanks so much for your input. Blessings! 🙏😇🤞
My husband and I have worked hard are entire lives. We have a beautiful 28 acre farm with the gorgeous house on it, a lake house nearby, and a mobile home park to bring in some extra money. We have 4 children and refuse to let the government take everything we own if I have to go to Assisted living. My best advice to you is Talk to an attorney to get your legal options to protect your inheritance and/or funds available to you.I agree it's not fair that we work our entire lives. and when we get ill we are simply at the mercy of the government and legal systems. Please check with your attorney because there are financial ways to protect you're inheritance from the government forfeiting it from you to pay for your care if you go to assistant living. Fancy59.
This is a topic I like to avoid because it's mightily depressing. If you don't have long-term care insurance, or a lot of savings stashed away, I don't see how anyone could afford a nursing home or assisted living facility.
Even those with long-term care insurance end up paying quite a lot.
I've been on Medicare/Medicaid throughout my 40+ years with MS, and if/when I end up needing to go to one of those places, Medicaid covers it but there are restrictions. For one thing, in the two states I know anything about (WA and OR), you go only to Medicaid-approved facilities, and those are the ones with the lowest quality of everything. I've visited people in these places, and I wouldn't like having to be there.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newbie to community but not to MS
Are You Taking Care of Everything?
Careful what you wish for 
who is willing to care
Hi I sort of new and have no experience with being in a community
