On the finances of memory care

Crushed

Memory care is expensive no doubt about it.  People with spouses fall into different groups 

1) there are people who cannot begin to afford it  at all

2) there are people who can afford it for some limited period of time  

3) there are people who can "afford" it for a limited period of time  at the expense of putting themselves in group 1
 4) There are people who can afford it for a spouse for a lifetime  At the expense of putting themselves in group  1 or  2  
5) there are people who can afford it for both for a limited time ( Generally due to LTC
6) there are asymmetrical situations where the spouses situations are not connected
  7) There are people who can afford it for both spouses for a lifetime

 with a diagnosis of dementia you have  to take a very cold hard look at your situation  and decide where you are

This is the Raw material for seeing an elder care lawyer

The cost of memory care  is routinely $80-120,000 a year.    DW will be in care 5 years in October  Dementia costs dwarf all other forms of medical care. 

for analysis you have to do it as assets or income  and convert  one to another.   If you are both 70 the Actuarial  annuity value of your assets is about 7%   so a million dollars in assets produces an annuity income of about $70,000  Add that to pensions and SS and you know where you stand .   About 90% of the USA is in groups 1 ,2 and 3  

 

  

Jo C.

And the answer is . . .?????

This is a heartbreaking dynamic.   Virtually no Medicaid for most all of Memory Care Facilities.  Significant profit making venture for the one's who own the MCs to be sure.

When DH and I are of an age, if one of us needs Memory Care at $10,000 per month, (figuring increase in costs), we could maybe squeeeeeeak by. What happens to the other spouse if still alive, how long that squeak time would last is unknown.  If only one has  a high end need then we could continue to hang on by a mere thread for some time.  If the other party has significant needs, well . . .

If both of us needed Memory Care - we would be out of luck in at $240,000 per year. Except we could have our house sold (which is paid so no mortgage to pay off ) and that would carry us for a short while along with retirement pension and savings.  What a debacle and a great problem for our adult children.

Right now, in our area, cost of Memory Care is $8,600 per month for one person.

A couple who used to be our neighbors have had a need for both of them in Memory Care. Husband was a highly successful man at the top of his game in his profession but was retired. Wife did not ever work.  He ended up with Parkinson's LBD and recently passed away, and his wife has Alzheimer's. So both of them were in Memory Care and she still is. 

Wish there were a way for Medicare to arrange for some coverage for this, but I cannot see that ever happening.

Long Term Care insurance is SO hard to get, and SO expensive.  Some companies have left the market place and others have increased premium rates so high they are no longer affordable. As one gets older, the premiums can climb in some plans which again - not affordable.  We had applied for LTC Insurance some years ago when much younger,  but were turned down.  DH had Type 2 Diabetes well controlled by diet and exercise; he was denied.  I had one note in my medical record regarding pain in my left knee after an injury.  Despite my exercising and daily walking, I was denied coverage based on that. 

There is such a huge healthcare gap that grows and grows each year, especially for the aging.  Medicare cannot even get its act together for heaven's sake to even change the Hospice admission criteria for dementia which is SO out of date and lacking in reality that it leads to many not able to get onto Hospice when they really need to be.  They also still persist in demanding three 24 hour days in an acute hospital before a person can qualify for skilled care rehab; but then they permit inpatients to be changed to outpatient status even with longer stays of 10 days, two weeks and whatever in the acute hospital, AND this change can be done retrospectively which wipes out any inpatient days.  No three 24 hour days; no skilled care.  It is a scandal but no one is making noise.

I do not know what the answer is to all of this.  We need to pay attention to who we are electing into office.   Still . . . I do not hold out hope.  The elderly and the disabled are simply discarded out of hand for any interest for even a semblance of assistance.

Seems to me that how great a nation is, can be seen by how they care for the aged and disabled.  Think of the Down Syndrome adults; 97% of them will develop Alzheimer's Disease; many early onset.  It is a huge population.  What happens . . . .?  

Demanding NHs do this and that is necessary; but it puts the onus on the providers of care which is important, but it does not do one whit to assist the elderly in need who are caught between that proverbial rock and a hard place at an age when trying to deal with it all is futile mega stress.

Knowing the human toll this takes; I am so sorry for all of it . . . .

J.

Rescue mom

So what’s going to happen for those people in the first couple groups? My states Medicaid is so incredibly not even close to the need, the wait lists in FL are so large as to essentially be nonexistent. Most other states are better, by numerous measures, and they’re still falling short.

Moving away  from friends and family at this point isn’t realistic. I seriously wonder what people in their 50s (just in general) and younger—many of whom can barely pay housing, current health care, maybe child care? Then try to save money? —will do.

A therapist once asked me, very seriously, after several sessions regarding my need for help dealing, why people keep their LO at home so long given the difficulties.  She clueless about the financial costs. I first thought she was feigning, as a tool, but i believe she was indeed clueless about that.

 She though Medicare would cover much of it, and also had no idea of the cost of any/most facilities….and this is was a middle-aged professional in a practice with several others, including geriatric psychiatrists. 

But my point is that I don’t think many people realize the potential costs. We’ve heard even here from caregivers who thought for years that Medicare would work. If you’re not in the minority affected, then it’s easy to “overlook.”

Crushed

but then they permit inpatients to be changed to outpatient status even with longer stays of 10 days, two weeks and whatever in the acute hospital, AND this change can be done retrospectively which wipes out any inpatient days.

Amazingly I have good news on this one point

Court Rules Medicare Beneficiaries Can Appeal Switch to Hospital Observation Status

March 1st, 2022

 

A federal court has ruled that hospitalized Medicare beneficiaries who were switched from inpatient to observation status can appeal the decision, making it easier for them to receive coverage for subsequent nursing home care. The ruling appears to bring to an end more than a decade of litigation on behalf of Medicare recipients. 

  https://www.elderlawanswers.com/court-rules-medicare-beneficiaries-can-appeal-switch-to-hospital-observation-status-18678

 
  
 

Vitruvius

In my ultra high cost of living area $120,000 a year is the bargain end of the spectrum of costs. I called over a dozen in my area and have visited 8. $120K is the lower end, $150K mid range. The highest I talked to was $185K, neediness to say that was not one  I visited. These are not high end resort type places, just normal facilities like you find everywhere else for half the cost.

This isn't even for the cost of any kind of individual aide. 

Some of the mid range of these were not for profit run by religious organizations. There were a couple slightly below $120K but that pricing was from late last year so I suspect they've gone up now that inflation is raging. These low end places seemed pretty tired looking to me but the care still seemed good. 

A few had one cost for almost any amount of care, except two person assists, needing oxygen, etc. But most had tiered pricing so the cost goes up as your LO needs more care.

And most facilities seemed to be understaffed at that!  They should be discounted because of that.

So when you lament your situation be aware that it could be worse. 

Crushed

So what’s going to happen for those people in the first couple groups? My states Medicaid is so incredibly not even close to the need, the wait lists in FL are so large as to essentially be nonexistent. Most other states are better, by numerous measures, and they’re still falling short.


The plan in the STINGY states has always been to dump the patients onto MORE GENEROUS  states /   They do it with medicaid. homelessness  and special education and a number of other social benefits.  If you are sufficiently cruel the sick poor people will leave  or you buy them a bus ticket and send them .  Florida has a bigger population than New York  but half the social spending

I don't have a macro answer.  but anyone facing dementia in their family must must must be realistic

 
 

Jo C.

As the link said . . . it is a complicated process and may require an attorney . . . 

One can appeal, but it does not mean that one will win, and if an attorney is required that is an expense.

The link says Medicare payment to nursing homes - that is NOT for custodial care, it is for Skilled Care that has criteria for medical necessity and that three 24 hour days attached to it.

J.

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Crushed

I fully agree that this is a disgraceful regulatory work around  the Two "sophisticated " parties

Hospitals and medicare  have agreed on a procedure that dumps all the uncertainty on the on the poor elderly sick schmuck.  

Vast campaign  contributions  and endless health care propaganda  contribute to convincing people that no change is possible and if you try to change anything you will be ground up for dog food.

I've  worked with health care systems in the UK and Germany

 In 2020, the U.S. spent 19% of its GDP on health consumption (up from 17% in 2019), whereas the next-highest comparable country (the United Kingdom) devoted 13% of its GDP to health spending (up from 10% in 2019).  (Germay is 12.5 %

Most of the extra cost in the USA is higher profits and administrative waste  
 
Germany for example has more ICU beds and  Hospital beds than we do at much lower cost. 

 



  
 

Fairyland

 I work in the UK health service and dearly love it. However it doesn’t provide personal care. It’s more for acute issues.

It provides about the same for dementia as the US - uneducated professionals who do things like talk to the PWD alone and expect them to remember instructions, appointments etc; disastrous hospital stays that make the condition worse, and no money for care once the acute hospital stay is over.  PWD have to sell their home if they own one (surviving spouse is protected as in most of the US) and spend down to be nearly bankrupt before the state provides funding for up to 4 fleeting visits a day (basically toilet and maybe a sandwich), then once that is fully proved to be a failure, usually after an injury or elopement whilst unattended, whatever care facility has a space.

The health service was already insufficiently funded  before CoVID19, using increasingly long waits and lack of availability instead of costs to patients to ration care and keep costs down. Now it’s really frightening, and people are left, sometimes to die, while waiting to be transported (free ambulance rides woohoo! but very long queues- hours and hours), or admitted, due to sheer pressure of patient numbers. It’s unsaid but i.e. kids will get priority over crumbly old folks for timely attention, when that choice is forced on the staff. That’s how it should be IMHO, but no one likes it.

I guess this happens too in many US places too, for those with no insurance or money or families with means and will to help.

I wanted to bring my dual national mom home to the UK with me last year after over 60 years in the US, but had to abandon that plan when I compared the current situation in the UK with the superb care she has had so far for cancer and strokes, despite the pandemic. But, she is on old Medicare and still has funds. She didn’t want her life extended for no reason (full DNR on her request not mine), but she had quality of life, at least until last week’s stroke #2- time will tell how bad it was, but it wouldn’t have actually killed her, so I’m glad she got treatment promptly to minimise the damage, and is next being given appropriate rehab without me having to kick up a massive stink like I would here in Blighty nowadays.

If my father hadn’t obligingly died several years ago without getting dementia, mom would not be in such a good position- still is in danger of outliving her funds though.

The pandemic is an unmitigated disaster for healthcare in the whole world.

Bill_2001

This is a great thread. Thanks to Crushed for posting it.

Anyone that has read my posts in the past knows that the cost of dementia care is a real sore spot with me. Spousal caregivers are truly stuck, as we cannot just "sell everything" to pay for care, since we still have our own futures to prepare for.

That said, I really don't think anything will change anytime soon. We as a group use many tactics to survive this ordeal without ending up sleeping under a bridge. We call Certified Elder Law Attorneys (CELA) and do the best we can to prepare. We save, save, save. We put off a care home for as long as we possibly can, and then some. We use medication to mitigate symptoms. We buy the best incontinence products and manage as best as we can. We use Adult Day Care at much less cost than a care home, as long as that works out. We put off our own retirement and juggle caregiving to keep the lights and stave off those care home bills as long as possible.

Let's get to the root of the problem. I will try not to sound morbid.

Dementia has no cure and likely will not have one within any of our lifetimes. And modern medicine allows us to live too long. Yes, I said it. We are living too da*n long.

A friend of mine, well into his 80s, said it best: What ever happened to plain ol' death? It has worked fine for millenia, then we come along and try to cheat it. We are losing. LOL

Keep It 100

Rescue mom wrote:

So what’s going to happen for those people in the first couple groups? My states Medicaid is so incredibly not even close to the need, the wait lists in FL are so large as to essentially be nonexistent. Most other states are better, by numerous measures, and they’re still falling short.

https://www.pilotonline.com/government/virginia/vp-nw-statehouse-health-seniors-20220521-ot7ynwnzvvh77mwp32u5ho46yu-story.html

I was interviewed a couple mos ago for an article related to the issues I experienced here in Virginia--where hundreds of  Alz/dementia patients are ending up in our psych hospitals each year, further advancing their decline in an inappropriate environment, and preventing needy mental health patients from receiving the bed/care that they need. I was able to avoid this nightmare because I had the means to place Ray in a private facility -- I shudder to think what would have happened otherwise. 

Jo C.

And not a single valid meaningful bit of work towards actual meaningful, concrete assistance coming out of our elected representatives and those who are in lofty places writing, changing and making decisions - it really is painful in how it affects those left without . . . . yet; it has, as always, been the huge middle class that has carried this nation on their shoulders.

It is truly a scandal of monumental proportions.  Not even an ongoing onslaught from evening news . . they may do an "emotional" piece, once in awhile, but no one in a position to do so are putting fire to the feet of those who are in a position of making a differance but choose not to.

Sometimes I despair when seeing the damage that is being wrought . . .

J.

J.

Ed1937

When I read threads like these, I feel like I just won the lottery. My wife just went into MC recently, and we just started filing for Medicaid. Although I never thought we could be approved, our attorney is sold on the idea that it will be finalized by sometime in August.

Here's why I feel like we won the lottery. The MC she is in is very nice, care is very good, and the people working there are, in my wife's words, "really nice people". And they accept Medicaid, but they have to be sure you have the finances to private pay for a while, in case Medicaid is denied. Cost of residing there is about $4500.00 per month. We had to furnish the room, and we're responsible for personal items such as towels, blankets, bar soap, etc. When I see that many (most?) MCs will not accept Medicaid, and the costs for residency are much more than hers (must be a regional thing), with long waiting lists, how could I not feel like I won the lottery? We are indeed, fortunate.

Jo C.

Ed, you do indeed have a basketful of blessings in your situation with your wife.  That facility is beautiful, (I saw the link), and the dedication of staff and the programs sound exemplary.  The cost is amazingly low - I wonder how they do it - do you know if  they are a for profit or a not for profit?

I also wonder, since you must provide the towels and sheets, who does the laundry for those items as well as her clothing?  Since noted in prior Posts that she can wet through her nighttime incontinence garments thereby wetting her bedding, how many changes of sheets and other bedding did they ask you to provide?

Your situation is really and truly marvelous; I am so glad for you and your dear wife.   Wonderful if Indiana is one of the states that will reimburse up to three months of private pay when Medicaid is approved; that would be a very nice outcome too.

Blessings indeed and much to be grateful for.

J.

Ed1937

Jo, this is a for profit facility. Yes, I'm lucky again. Reimbursement up to 90 days. But like Yogi Berra said "The game's not over till the game's over". That just means that she's not approved until she's approved.

They do all the laundry (included with monthly cost), and they labeled her belongings. i didn't have to do it. They did not say how many sheets to bring, but I brought 3 sets with pads. If they need more, I'm sure they'll let me know.

Jo C.

Gosh Ed; I understand how much you miss your beloved wife.  Necessity arose, and once again you rose to the occasion, and I am delighted for you, for your dear wife and your family in that this is truly a good and graceful situation on many levels.   How I wish it could be so for everyone.  You have done amazingly well in all of the challenges as they arose.

Do you feel your Elder Law Attorney was pivotal in much of this?  How did he/she help the most?

J.

Rennbird

I live outside DC.  The people here care more about their dogs.  They would have never in a million years left their dog at a Veterans Facility.  Of course it is my own fault.  I lived in La La Land.  My husband was adopted with no health history.  I will never get over is horrendous experience.  I was so naive.

Crushed

Fairyland wrote:

 I work in the UK health service and dearly love it. However it doesn’t provide personal care. It’s more for acute issues.

Ive taught health care risk management in the UK you are correct
Important to remember that the USA spends twice as much on health care per capita and gets only very  slightly better results(its 50% more as percentage of GDP
 

 

Stuck in the middle

That's a good article, Keep it 100.  PWDs in mental hospitals, mental patients in jails.  

In a public lecture, a local psychiatrist who sees patients in jail said our county jail is the largest mental hospital in our area, and said being there at night is like being in a mental hospital at night - people crying, etc.  So, it's not just Virginia.

Last month, we opened a new, larger jail.  And so it goes.

billS

Like Ed I feel extremely fortunate. Here between Sacramento and San Francisco I had my choice of MC facilities ranging in price from $4,500 to $6,500 a month. All have very good reviews. My wife and I had signed up for long term care insurance way back when it was affordable and we were in our peak earning years, thinking it would save us from exhausting our investments if we needed care in the future. In the meantime we continued to be very frugal, growing much of our own food, ignoring the latest must-have fads, fixing/buying used instead of buying new and doing very little traveling. And lucky for us, as out business prospered my wife got us set up with a reliable investment firm and our nest egg grew. 

Then a few years ago the LTC insurance figured out they were losing loads of money and started raising rates exponentially. After consulting our investment advisor we realized we would be better off self-insuring based on portfolio projections, so we converted the LTC policy to a paid up fixed payout amount. So now our LTC will cover about one year's worth of MC costs before it is exhausted. After that I will pay out of pocket and with continued frugal living on my part hopefully we will be okay. 

For now my wife is safe and well cared for and quite content in the facility, and ironically we are able to afford it because she was the one with the foresight to invest and live frugally. Sadly she is the one being punished by this dreadful disease.

Stuck in the middle

That's happening to all of us, Bill.  I was recently notified that my LTC policy will increase again in 2023.  I plan to try to keep it, since DW is nearing qualifying for benefits.

Crushed's Group 5 is a shrinking population, I suspect.

Ironically, I bought LTC because I have a family history of stroke and I didn't want DW to be impoverished if I needed a NH.  Now it appears she will use her policy and I'll have to cash mine out.