How much to save for retirement

[glennds]

The existence of those commercials indicates to me that this is a serious and ongoing problem, rather than that bad stuff doesn't happen because of the threat of lawsuits.

Your conclusion is the intended goal of the commercial. Believe me, they are mostly opportunistic commercials for a lucrative area of personal injury law. There are times when nursing home patients are indeed abused or neglected. There are also times when the lawsuit is a money grab opportunity for the surviving family.
Either way the facility is always at a disadvantage and the reality is the downside of going to a trial is much greater than paying out settlement money which the insurance carrier will choose to do even if they facility feels the claim is defensible. This is because consent policies don't exist in that industry.
But my original point was that a truly bad provider can only last so long before they get sued into oblivion, cannot get malpractice insurance, or the State takes the facility over if the bad stuff is broad enough in scope. In the interim, yes, there is going to be bad stuff, but it can't go on indefinitely. Maybe it depends on your definition of bad stuff. If the expectation is that none of it will happen in any facility, it's not realistic.

The fact that terrible nursing homes exist would seem to indicate that the mechanism of state penalties / governor embarrassment is far from comprehensive, and I still don't see any guarantees that a well-run place won't turn into a terrible one over time.

Have you found guarantees in other areas of your life, besides the certainties of aging, death and taxes? Yes, there are good places and bad places and any of them could change. Buyer beware.

[Xan]

The existence of those commercials indicates to me that this is a serious and ongoing problem, rather than that bad stuff doesn't happen because of the threat of lawsuits.

Your conclusion is the intended goal of the commercial. Believe me, they are mostly opportunistic commercials for a lucrative area of personal injury law. There are times when nursing home patients are indeed abused or neglected. There are also times when the lawsuit is a money grab opportunity for the surviving family.
Either way the facility is always at a disadvantage and the reality is the downside of going to a trial is much greater than paying out settlement money which the insurance carrier will choose to do even if they facility feels the claim is defensible. This is because consent policies don't exist in that industry.
But my original point was that a truly bad provider can only last so long before they get sued into oblivion, cannot get malpractice insurance, or the State takes the facility over if the bad stuff is broad enough in scope. In the interim, yes, there is going to be bad stuff, but it can't go on indefinitely. Maybe it depends on your definition of bad stuff. If the expectation is that none of it will happen in any facility, it's not realistic.


My understanding is that most places are not really satisfactory. Maybe I have the wrong idea.

The fact that terrible nursing homes exist would seem to indicate that the mechanism of state penalties / governor embarrassment is far from comprehensive, and I still don't see any guarantees that a well-run place won't turn into a terrible one over time.

Have you found guarantees in other areas of your life, besides the certainties of aging, death and taxes? Yes, there are good places and bad places and any of them could change. Buyer beware.

No, but in situations where there isn't a guarantee, I don't like to pay up front. That's my main concern with the CCRCs.

[glennds]

No, but in situations where there isn't a guarantee, I don't like to pay up front. That's my main concern with the CCRCs.

That's a reasonable position as a consumer. When I was active in the senior living industry, mostly on the development side, there were some states where CCRCs were preferred models to the pay-as-you-go rental communities. And other states where the opposite was the case. It came down to culture.
The more conservative places went for the CCRC model because they wanted financial certainty. Examples were Florida, west of Mississippi, midwest. The more risk tolerant places tended to prefer the pay as you go model and CCRCs struggled to gain full occupancy. Examples were the sunbelt, west coast, PNW.

Neither camp is right or wrong. It's just a matter of preference.
For example, (strictly financially) if you bought into a CCRC 10 years ago, you are doing much better financially than someone who stuck with pay as you go because rents have escalated dramatically. It really is a similar metaphor to paying for term life versus a whole life policy.

Honestly Xan, in all these years I've not heard many stories of CCRCs going downhill. If anything most have been consolidated into large companies like Brookdale and if anything have gained infrastructure.

[Xan]

No, but in situations where there isn't a guarantee, I don't like to pay up front. That's my main concern with the CCRCs.

That's a reasonable position as a consumer. When I was active in the senior living industry, mostly on the development side, there were some states where CCRCs were preferred models to the pay-as-you-go rental communities. And other states where the opposite was the case. It came down to culture.
The more conservative places went for the CCRC model because they wanted financial certainty. Examples were Florida, west of Mississippi, midwest. The more risk tolerant places tended to prefer the pay as you go model and CCRCs struggled to gain full occupancy. Examples were the sunbelt, west coast, PNW.

Neither camp is right or wrong. It's just a matter of preference.
For example, (strictly financially) if you bought into a CCRC 10 years ago, you are doing much better financially than someone who stuck with pay as you go because rents have escalated dramatically. It really is a similar metaphor to paying for term life versus a whole life policy.

Honestly Xan, in all these years I've not heard many stories of CCRCs going downhill. If anything most have been consolidated into large companies like Brookdale and if anything have gained infrastructure.

glennds, I didn't realize you had insider information on the industry! Good to hear how CCRCs are performing in your experience.

[glennds]

glennds, I didn't realize you had insider information on the industry! Good to hear how CCRCs are performing in your experience.

Yes, I'm an insider alright.
I don't want to sound like I'm defending the senior care industry. Personally I think it's a quintessential Gordian knot. There are good facilities, and many great caregivers whose hearts are in the right places.
But there are also a lot of low grade providers who basically warehouse people and try to keep costs as thin as possible. It is very hard to achieve consistent high quality care with the employee pool available to these facilities. There are always going to be care problems, especially when employees no-show for shifts. The regulatory environment is stifling. It's a volume, numbers and efficiency game based on the payment system.

The residential Independent Living end of the senior care spectrum is pretty good which is why I'm much less negative about CCRCs. It's once you get into assisted living, skilled nursing and memory care where the whole thing gets more challenging. Sometimes on the same CCRC campus, the independent living section is great, but the skilled nursing component is abysmal.

[boglerdude]

Flu used to be called the Angel of Mercy for the moribund. Hmm.

Was going to say, why dont we build huge facilities on cheap land in the midwest, staff with immigrants. But I suppose surprise visits from family go a long way toward preventing abuse.

Gonna start running 5Ks, hopefully my heart will explode before dementia.

[Maddy]

The existence of those commercials indicates to me that this is a serious and ongoing problem, rather than that bad stuff doesn't happen because of the threat of lawsuits.

The fact that terrible nursing homes exist would seem to indicate that the mechanism of state penalties / governor embarrassment is far from comprehensive, and I still don't see any guarantees that a well-run place won't turn into a terrible one over time.

In my own (very limited) experience, I've encountered several glaring instances of neglect/abuse in supposedly great facilities. One involved a friend's mother with dementia who was berated and slapped by a caretaker over a period of time. Another involved a close friend with terminal cancer who, during a CoVid lockdown, was allowed to lie in her own waste for 6 hours at a time and whose water cup and call button were kept (intentionally?) beyond her reach. A third involved a client's father with Alzheimer's who burned to death after being given a lit cigarette and left alone outdoors.

The odds say I should have seen this much unless the problem is rampant.

[Xan]

The existence of those commercials indicates to me that this is a serious and ongoing problem, rather than that bad stuff doesn't happen because of the threat of lawsuits.

The fact that terrible nursing homes exist would seem to indicate that the mechanism of state penalties / governor embarrassment is far from comprehensive, and I still don't see any guarantees that a well-run place won't turn into a terrible one over time.

In my own (very limited) experience, I've encountered several glaring instances of neglect/abuse in supposedly great facilities. One involved a friend's mother with dementia who was berated and slapped by a caretaker over a period of time. Another involved a close friend with terminal cancer who, during a CoVid lockdown, was allowed to lie in her own waste for 6 hours at a time and whose water cup and call button were kept (intentionally?) beyond her reach. A third involved a client's father with Alzheimer's who burned to death after being given a lit cigarette and left alone outdoors.

The odds say I should have seen this much unless the problem is rampant.

Horrifying, Maddy. I'm curious how you found out about the situation with the friend's mother? Was the mother able to believably describe what happened?

[glennds]

The existence of those commercials indicates to me that this is a serious and ongoing problem, rather than that bad stuff doesn't happen because of the threat of lawsuits.

The fact that terrible nursing homes exist would seem to indicate that the mechanism of state penalties / governor embarrassment is far from comprehensive, and I still don't see any guarantees that a well-run place won't turn into a terrible one over time.

In my own (very limited) experience, I've encountered several glaring instances of neglect/abuse in supposedly great facilities. One involved a friend's mother with dementia who was berated and slapped by a caretaker over a period of time. Another involved a close friend with terminal cancer who, during a CoVid lockdown, was allowed to lie in her own waste for 6 hours at a time and whose water cup and call button were kept (intentionally?) beyond her reach. A third involved a client's father with Alzheimer's who burned to death after being given a lit cigarette and left alone outdoors.

The odds say I should have seen this much unless the problem is rampant.

Horrifying, Maddy. I'm curious how you found out about the situation with the friend's mother? Was the mother able to believably describe what happened?

I'd be interested to know also. Generally unless someone else witnessed it, it's nearly impossible to prove that it actually happened. And when the resident has dementia, she may think it happened when it didn't. Or the resident might say it happened to get more attention from a neglectful family who doesn't visit much. Or it really did happen.

There are thousands of stories like this. Maybe hundreds of thousands. I could write you a Anthony Bourdain style book on the inside workings of the sausage factory.
One tidbit; often times what you think is an employee of the facility is not even their employee. It is common that employees call off their shift, or no-show, and care facilities either work short, or turn to rental agencies for caregivers, kind of like how day laborers are used on construction sites.

The staffing agency rents these people out for more than they pay them and make a spread, usually about 30-40%. These people show up, don't know the facility, don't know the residents, and may or may not have had a background check. No facility uses these people by choice, but they become a solution of last resort in the face of turnover or call-offs.
The care in these places is mostly provided by CNAs (certified nursing assistants). This is a low barrier to entry job that pays a little over minimum wage. The licensed nurses are usually consumed with med pass, documentation, medical treatments. The CNAs are the ones providing the daily care (bathing, dressing, feeding, turning).

BTW, if you have a criminal record or drug problems, one of the few places you can fly under the radar and get work is in a care facility as a CNA.
There are those that do it as a career path to becoming a nurse, but many are in the job because they have issues and being a CNA or a fast food worker is one of their few options.
Imagine the state of mind of an employee like I describe who is a black single mother, was up all night fighting with her drug using boyfriend, then comes in for a shift where one of her residents is a racist, cranky old post-stroke man who gropes her where he shouldn't at every chance. And that man is one of 15 residents she has to bathe, dress, feed in the next two hours. Some residents are darling, others are combative.

Again, these things are more of an issue in the "care" facilities, not in the independent living settings. There's also a massive difference between the Medicaid facilities and the privately paying facilities. The government funded facilities will be operating on low reimbursement so their model is called "penny stacking" where keeping costs as low as possible is the only path to success or survival. These places are fed residents who have no other options, the majority actually.

The private pay facilities generate more revenue (by about 50-80%) so they generally have a better, newer facility, more staff and they tend to have to win their occupancy from paying consumers.

I've seen Medicaid facilities in some states where the state has mixed together nursing home residents with homeless population that aren't safe to be on the street and have nowhere else to go. Many have mental illness, so the whole place is kind of like an asylum warehouse you might imagine from a movie.

[sophie]

CCRC's are a response to an almost intolerable situation that is guaranteed to get much worse over the next 20-30 years. I agree that a CCRC could be a risk if it suddenly implodes or gets mismanaged, but that's true of just about any arrangement you might make.

My mother picked me to manage her care & finances, because she knows I'm level headed and will get the job done. My siblings on the other hand are too emotionally unstable to be of much use. As we speak I'm trying to deal with a completely unnecessary piece of craziness: my siblings decided (without checking with me) to all come piling into my mom's house this week along with a cousin and his family from north carolina. As per usual they didn't spare a single thought for how my mom would react. The live in aide decided to take the week off because she knows my siblings and didn't want to deal with them (and she's not the first aide to have that sentiment). So I started looking for a sub through the mini/private agency we use (a group of Russian/Ukrainian women from a church in central NJ - really a gold mine, anyone in the area who is interested PM me and I'll send info). Anyway, long story short, my sister decided she'd take over for part of the week but then proceeded to go absolutely nuts and drive off not one, but two covering aides. So I'm trying to broker the situation from a distance. But, I refused to come and act as the interim caregiver to rescue them from the crisis that they created.

If your family members are like this, then I'd say the CCRC is in fact MUCH less risky than putting yourself into their hands.

Seajay - I gathered you're in the UK, where things are a bit better than the US. However, I hear you on how hard it is to deal with dementia. Dementia is infinitely more difficult to manage than non-dementia conditions, and in consequence it has much higher out of pocket costs. I didn't realize any of this before I started dealing with my mother's condition, even though I"m a neurologist (and believe me, neurologists don't know that either even if they specialize in dementia).

Independent living in a CCRC btw is a great setup for dementia care. Just make sure you get an apartment with an extra bedroom to accommodate a live in aide. That arrangement can last a long time, potentially skipping memory care - which is nothing more than an assisted living unit with a locked door, for which you are charged a massive premium. Luckily my mother doesn't wander and has mobility problems from an old back injury. This is probably the single reason why you might need a move to memory care. Otherwise, dementia patients don't need certified home health aides or regular nursing care until they are in the advanced stages - at which time hospice is the most appropriate care path. Sitter/companions, who are not certified aides, are perfectly fine for dementia and are definitely less expensive.

It's also VERY important to hire privately and not through an agency, for one critical reason: giving medications. Agency aides are forbidden to administer meds, they can only "remind" someone to take them per Labor dept rules. This applies not just to prescription drugs but also stuff like Advil. This is a laughable concept for dementia patients, and darned if I was going to pay a private nurse to come and administer meds 2-3 times a day. A private aide isn't bound by agency rules and will happily give meds.

A hot tip for you seajay: if a person with dementia is more than usually grumpy and nasty, give them Advil. Chances are they have a pain somewhere but can't tell you about it. 20 minutes later their mood will improve like magic. I don't even ask my mom anymore, I just give her the Advil, and our aide is right with this program and does the same. I also have her going to an acupuncturist to deal with a recurring muscle spasm in her back - helps a lot.

[sophie]

The existence of those commercials indicates to me that this is a serious and ongoing problem, rather than that bad stuff doesn't happen because of the threat of lawsuits.

The fact that terrible nursing homes exist would seem to indicate that the mechanism of state penalties / governor embarrassment is far from comprehensive, and I still don't see any guarantees that a well-run place won't turn into a terrible one over time.

In my own (very limited) experience, I've encountered several glaring instances of neglect/abuse in supposedly great facilities. One involved a friend's mother with dementia who was berated and slapped by a caretaker over a period of time. Another involved a close friend with terminal cancer who, during a CoVid lockdown, was allowed to lie in her own waste for 6 hours at a time and whose water cup and call button were kept (intentionally?) beyond her reach. A third involved a client's father with Alzheimer's who burned to death after being given a lit cigarette and left alone outdoors.

The odds say I should have seen this much unless the problem is rampant.

Horrifying, Maddy. I'm curious how you found out about the situation with the friend's mother? Was the mother able to believably describe what happened?

Sadly, this is par for the course with most nursing homes. Something similar happened to my aunt, who is much more advanced than my mom is. The solution is to hire your own private aides. Obviously that gets very expensive. One of my sisters handles my aunt's care, and she arranged for 24/7 private aide coverage. Total cost is easily over $30K per month: $12K for the facility, and $25-30/hour for the aides, plus personal expenses. Now you know why I said you need $2 million to get through a dementia course???

[sophie]

I did have a great offer some months back for a live-in aide, but sadly Mother wouldn't have anything to do with that. Same for carers - refusal as 'get out - my son will do all of that'.

Oh how I relate to this too!!!!

It took my mother falling and breaking her pelvis to get an aide into the house. She still fought it tooth and nail, even calling the police several times. I tried calling the person a "housekeeper and cook" but that didn't fly...you could try that maybe?

Before I got the current live-in aide, I took my mom into my apartment for about 3 weeks to work on finding the right medications to keep her as calm as possible. CBD oil turned out to be a godsend, works really well and has virtually no side effects. It did require hefty doses (at least 180 mg of CBD oil a day, comparable to the dose required for epilepsy) but it literally saved us because I was about to give up and put her into memory care which would have been awful.

Even so, my mom threw the aide out of the house every day around 4pm when she started sundowning, like clockwork. The aide walked to a nearby Starbucks (through a hole in a town fence which I'm thankful they never repaired), watched her on Ring cameras that I shared with her, and returned after an hour with a blueberry muffin in hand. My mother always greeted her at the door with a smile and invitation to come in for dinner. That went on for about 2 months, then gradually it stopped happening. My mom still complains about having an aide, but sometimes she also says how happy she is that Sasha is there. So thank god for that! (another reason to hire privately...an agency aide wouldn't be allowed to leave the house, which simply would have caused my mom's tantrum to escalate to crisis point.)

[Maddy]

Horrifying, Maddy. I'm curious how you found out about the situation with the friend's mother? Was the mother able to believably describe what happened?

My friend saw his mother's distress over something that was happening--enough so that he was motivated to put a tape recorder under the bed.

[Xan]

Horrifying, Maddy. I'm curious how you found out about the situation with the friend's mother? Was the mother able to believably describe what happened?

My friend saw his mother's distress over something that was happening--enough so that he was motivated to put a tape recorder under the bed.

Awful.

[Xan]

CCRC's are a response to an almost intolerable situation that is guaranteed to get much worse over the next 20-30 years. I agree that a CCRC could be a risk if it suddenly implodes or gets mismanaged, but that's true of just about any arrangement you might make.

You can move on from other arrangements that might blow up, but if you've already handed your life savings to a particular CCRC, then you're stuck. No?

[vnatale]

An older article but related to this topic:

https://www.fa-mag.com/news/who-will-pa ... section=47

Who Will Pay For Long-Term Care?

[glennds]

Horrifying, Maddy. I'm curious how you found out about the situation with the friend's mother? Was the mother able to believably describe what happened?

My friend saw his mother's distress over something that was happening--enough so that he was motivated to put a tape recorder under the bed.

Did your friend catch anything on tape?

[Maddy]

Did your friend catch anything on tape?

Yes, apparently quite a bit.

[glennds]

Did your friend catch anything on tape?

Yes, apparently quite a bit.

Depending on how long ago this was, and what state it happened, your friend might want to shop that tape around.
If it is a state with enhanced remedies under elder abuse and neglect legislation, there will undoubtedly be a big herd of contingent fee attorneys who prospect in that area. With something like a smoking gun tape like you're describing, a goldmine might await.

[sophie]

Did your friend catch anything on tape?

Yes, apparently quite a bit.

Great idea about the tape recorder.

Of course, the nursing home could claim that the tape is inadmissible because I'm sure they have a rule against unapproved listening devices. And they'd probably win. I think you have to get permission from them for any monitoring devices.

There's also the issue that this is so common, I don't know what can really be done to prevent negligent care. It's just not possible to take care of patients who need a lot of attention with usual staffing levels, like 1 person for 20 patients is pretty typical. That's why I got less interested in fighting nursing homes than hiring aides.

It's also why people are increasingly going the "DIY" route. Move mom to an apartment, maybe independent living or maybe just a private home, hire aides, and there you go. It is a bit more work to manage medical appointments, haircuts, food etc, but once you have a system in place it should not be so difficult to keep it up. My sister has found that the memory care facility solves some problems but creates others, e.g. they call her a dozen times a day with every stupid little issue because that's their policy.

[stuper1]

Sophie,

Thanks for the helpful information you've provided here. You mentioned it's important to hire aides privately and not through an agency. I'm not clear on this terminology. When you say an "agency," are you talking about some kind of government agency or do you mean private agencies? For finding aides privately and not through an agency, how would someone go about doing that?

I'm not at the place yet where I need to hire aides for myself or someone else, but probably not too far away for my parents.

[sophie]

Hiring privately means finding aides who aren't employed by an company providing formal home care that is registered with the state. They may be entirely independent, but more often I've found that they work in organized groups with usually one person acting as a matchmaker. This gives them many of the conveniences of an agency, and otherwise lets them fly under the Labor Dept's radar.

Formal home care agencies are highly regulated and have high administrative costs. The aides get less than half of the fees you pay, so they tend not to have the best & brightest because they make a lot more money going the private route. It's safer in that the company does background checks, handles insurance & credentialing. It's also convenient, as they will take responsibility for finding temp replacements and handling the record keeping, plus of course you can deduct every cent you pay them. But, of course you pay a premium for that service. For example, we paid over $10,000 a month for a live-in aide from an agency, but only $7500/month for the private live-in we now employ. And, we had to hire a second private aide (another $1000 a week) to handle the stuff that the agency aide wasn't allowed to do, like giving meds. The tax deductibility is less for the current live-in because we agreed to a mixed 1099/cash arrangement, but the tax benefit doesn't close this gap.

The other downside of agencies is that they have to enforce Labor Dept regulations - and some of those are incompatible with dementia care. I gave you two examples already (needing to leave the house to defuse a dementia-fueled tantrum, and administering medications) but there are more. There are some agency aides who know this and quietly ignore the rules, but you can't count on that.

So bottom line: agencies are great for short term needs and for conditions requiring certified home health aides, i.e. the disabling condition is physical rather than cognitive. With dementia though, the disabling problems are all cognitive and the condition requires stable care for years. This is really best handled by hiring a private aide who will (ideally) stay with the person long term. If you can find one willing to work above board, the IRS allows you to pay them on a 1099 as a "sitter/companion"; otherwise, you'd have to make them a formal employee and deal with payroll taxes etc.

[sophie]

CCRC's are a response to an almost intolerable situation that is guaranteed to get much worse over the next 20-30 years. I agree that a CCRC could be a risk if it suddenly implodes or gets mismanaged, but that's true of just about any arrangement you might make.

You can move on from other arrangements that might blow up, but if you've already handed your life savings to a particular CCRC, then you're stuck. No?

Yes Xan you're right about that. I guess you'd have to ask each CCRC about what kind of escape hatch they allow if you need services they don't provide, but you probably don't have much recourse if they provide a service and you just don't like it for whatever reason.

Like I said though, there's a risk no matter what you decide to do. Let's say you go into an independent living apartment with an aide. Someone is eventually going to have to decide whether and when to move you to a higher level of care (presumably somewhere else) - and who will that person be, and how reliable are they going to be? And what might happen to you in the meantime? Plus, if you have dementia you'll fight any move tooth and nail, but I guess that's another story.

[glennds]

A private duty caregiver is a phenomenal solution with a lot of important ifs.

Assuming you could find the right person with the right personality for your particular loved one (maybe not an easy person themselves),
If they are willing to live in, then in theory you have 24/7 coverage.
But would the caregiver have a life of their own? Would they need days off? Vacation? If so you'll need a relief back up person. This might also be necessary if the primary person is sick or has an emergency.
But what if the loved one is capable of getting up in the middle of the night and harming themselves in say, the kitchen? You might need a person to be on duty i.e. awake, at night while the primary person is sleeping, because we all have to sleep.

Unfortunately these caregivers are not like Alice from the Brady Bunch. They come with modern day problems and issues of their own. It is not easy to find someone with no life, no issues, willing to have their life consumed doing private duty job caring for an elderly person.

Most stories I have heard involved illegal immigrants that did it because they had no other legal employment options and the nature of private duty care kept them out of the light so to speak. And if this is the case, you need to be comfortable paying cash under the table.

As Sophie points out, there is the issue we in the industry call "aging in place" which is to say, the person's needs are fluid and may change month to month, certainly year to year. The changes could be behavioral, but they could be medical too. So whatever solution works today will be temporary.

I don't know if they exist in every market, but there is an underground solution commonly called a group care home. These are a throwback to the old age homes of two generations ago. A house where the owner has taken in 3-4 elderly people and provides board and care. Usually each resident has their own room. If you live in a suburban area, there's probably one in your neighborhood and you don't even know. The well run ones are owned by nice enough people who will have made renovations to the house for this purpose, they will usually staff one person on duty at night, and probably two during the day. With a little luck, the 3-4 residents are compatible and will be a social group of sorts. The cost around here would be about $3,000/month, some less, some more. So not 1:1 care, but probably more like 1:4, but still much better than 1:20.
Some people get into this business as a way of having two or three single family homes as investments, and the profit from the board/care operation covers the mortgage and insurance plus some cash flow.
These operations proliferated after the 2008 crash because homes were so cheap.

[boglerdude]

^ https://www.seniorly.com/assisted-livin ... agher-home

For those in the NY area. My grandparents spent their last years there.