S/o what happens if Medicaid doesn't cover needed assisted living?

[Laura Corin]

Spin off from here https://forums.welltrainedmind.com/topic/711132-where-do-we-start-with-assisted-living-when-on-disability/

What happens if Medicaid doesn't cover AL or if there are no AL places available? 

In the UK, people without money are assessed to see if they need AL. In general,  people paying out of pocket, like my mother, pay higher fees that subsidise government placements in the same homes. There are fancier homes with no government placements,  but my mother would feel uncomfortable in those surroundings.

[Scarlett]

2 hours ago, Laura Corin said:

Spin off from here https://forums.welltrainedmind.com/topic/711132-where-do-we-start-with-assisted-living-when-on-disability/

What happens if Medicaid doesn't cover AL or if there are no AL places available? 

In the UK, people without money are assessed to see if they need AL. In general,  people paying out of pocket, like my mother, pay higher fees that subsidise government placements in the same homes. There are fancier homes with no government placements,  but my mother would feel uncomfortable in those surroundings.

I hope someone will correct me but I don’t think Medicaid pays for AL.  It is either nursing home or nothing. Well not nothing exactly ….they will pay for a bit of daily help such as light housekeeping and cooking meals and helping the elderly one bathe etc.

It is called home health care.   It is often not enough help for a person living alone and it is also near impossible to find the aids to hire in certain areas. 

[Katy]

AL is never covered.  

AL is often considered a scam in the US.  The exception being if it is managed by a licensed nursing home.  Many of them are sold to families whose relative NEEDS to be in a nursing home but they are afraid of nursing homes and the AL apartments are newer and seem a bit nicer so they choose AL instead. Those attached to nursing homes have RNs visit at least once a day so they are pretty good at evaluating when they need to move to a higher level of care. If there’s no sign of dementia this often happens due to increased medical needs or a fall. 

Nursing homes can be seen as bad but many are very good.  You just need to look into state inspections reports and choose one with very few ongoing deficiencies. 

If you want to learn more about AL there is a very good PBS Frontline investigation into the fraud and deaths connected to them. Last I knew they still have it posted on YouTube. 

[Laura Corin]

18 minutes ago, Scarlett said:

I hope someone will correct me but I don’t think Medicaid pays for AL.  It is either nursing home or nothing. Well not nothing exactly ….they will pay for a bit of daily help such as light housekeeping and cooking meals and helping the elderly one bathe etc.

It is called home health care.   It is often not enough help for a person living alone and it is also near impossible to find the aids to hire in certain areas. 

Thank you. So Medicaid kicks in when someone needs serious nursing?

[HeartString]

10 minutes ago, Laura Corin said:

Thank you. So Medicaid kicks in when someone needs serious nursing?

If a person qualifies.  They have to spend down assets first, usually by paying out of pocket for however long one is able first.  There’s some sort of provision that protects some money for the spouse, but my understanding is that it is not very much protection. 

[Laura Corin]

Just now, HeartString said:

If a person qualifies.  They have to spend down assets first, usually by paying out of pocket for however long one is able first.  There’s some sort of provision that protects some money for the spouse, but my understanding is that it is not very much protection. 

That's similar to England, I believe. In Scotland,  the care side of things is paid for anyone considered to need it, but those with money pay the 'hotel ' cost until their funds are depleted. 

[TechWife]

32 minutes ago, Katy said:

AL is never covered.  

AL is often considered a scam in the US.  The exception being if it is managed by a licensed nursing home.  Many of them are sold to families whose relative NEEDS to be in a nursing home but they are afraid of nursing homes and the AL apartments are newer and seem a bit nicer so they choose AL instead. Those attached to nursing homes have RNs visit at least once a day so they are pretty good at evaluating when they need to move to a higher level of care. If there’s no sign of dementia this often happens due to increased medical needs or a fall. 

Nursing homes can be seen as bad but many are very good.  You just need to look into state inspections reports and choose one with very few ongoing deficiencies. 

If you want to learn more about AL there is a very good PBS Frontline investigation into the fraud and deaths connected to them. Last I knew they still have it posted on YouTube. 

I’ve never heard this before. AL is a viable option for those who can afford it. AL residents don’t get nursing visits as a default. There are different levels of care in AL, the higher levels require more staff involvement. The lowest levels have very little staff involvement. Not all facilities provide all levels of care. In many states, AL facilities are regulated by the state and have to meet stringent criteria, just like nursing homes. The apartments don’t necessarily seem newer and a bit nicer - that’s misleading. Nursing homes don’t have apartments, period. They have semi-private hospital style rooms. AL facilities have a variety of apartment sizes available, depending on the particular facility. The facilities we visited when choosing where my mother would live didn’t “seem a bit nicer” - they were a lot nicer. They were very private apartments & not clinical at all. She brought her own furniture, just like in a regular apartment. They were also better staffed, had much lower staff turnover and the food was actually quite good. If my mother didn’t like what was on the menu, she could order something else. 

As far as nursing homes are concerned, they vary wildly in quality. The inspection reports don’t tell the whole story. In the area where we live and where  my parents lived, they are chronically understaffed with residents that require nursing care & attention, sometimes quite a bit of it. This is quite unlike AL, where needs can vary from just needing housekeeping & cooking assistance to being bed ridden, depending on the level of care provided by the AL facility. 

I could go on, but I am out of time. 

[Katy]

7 minutes ago, TechWife said:

I’ve never heard this before. AL is a viable option for those who can afford it. AL residents don’t get nursing visits as a default. There are different levels of care in AL, the higher levels require more staff involvement. The lowest levels have very little staff involvement. Not all facilities provide all levels of care. In many states, AL facilities are regulated by the state and have to meet stringent criteria, just like nursing homes. The apartments don’t necessarily seem newer and a bit nicer - that’s misleading. Nursing homes don’t have apartments, period. They have semi-private hospital style rooms. AL facilities have a variety of apartment sizes available, depending on the particular facility. The facilities we visited when choosing where my mother would live didn’t “seem a bit nicer” - they were a lot nicer. They were very private apartments & not clinical at all. She brought her own furniture, just like in a regular apartment. They were also better staffed, had much lower staff turnover and the food was actually quite good. If my mother didn’t like what was on the menu, she could order something else. 

As far as nursing homes are concerned, they vary wildly in quality. The inspection reports don’t tell the whole story. In the area where we live and where  my parents lived, they are chronically understaffed with residents that require nursing care & attention, sometimes quite a bit of it. This is quite unlike AL, where needs can vary from just needing housekeeping & cooking assistance to being bed ridden, depending on the level of care provided by the AL facility. 

I could go on, but I am out of time. 

Frontline covered this, it isn’t just my opinion. 

I’ve worked at several nursing homes that have assisted living apartments. Both of them were fairly new at the time.

Your experience is not universal. I’m glad your state regulates AL.  Most states do not and it leads to needless deaths.

[skimomma]

I am in the thick of this as I care for someone who has dementia and is currently living in AL.  It is not a scam.  They needed a level of care that was more then could be handled by home visits but not yet to the level of needing a nursing home.  Examples of this type of care include medication administration, bathing/dressing help, meals, cleaning/laundry, and generally having eyes on someone.  AL is not covered by medicare or medicaid. In our case, we are self-funding the AL.  Time will tell what happens when the money runs out.  It could mean my person may end up in a nursing home when they might have still been ok in AL.  The thing that keeps me up at night is the shortage of medicaid beds in the local nursing facilities.  So, while medicaid does cover nursing homes, there is no guarantee that a spot can be found.  

[Beth S]

Both sets of our parents are in AL, private pay and high quality.
One pays rent, the other owns the unit.

Just a PSA as we all begin to plan for retirement . . . it's nice not to HAVE to live with your kids. 
AL still requires a lot of oversight from the children, but none of us could have housed either set of parents in our homes.

Here's our experience on Private Pay, which is what we all would prefer . . . BUT....

One set of parents has LTC Insurance, intended to pay for their nursing care, but I have literally spent 100+ frustrating hours over 3 years trying to keep up with the baffling maze of paperwork.  Of course the patient could never handle this on their own, so it falls to a family member.
We estimate they paid at least $120K over the years ($6K x 20 yrs) for the coverage, and we've managed to get $100K in reimbursement.
IMO, it would have been far better for the payments to be invested, and have them live off the proceeds.

I know I'm side-tracking the discussion, but Medicaid nursing home beds are indeed VERY hard to find.
And Private Pay nursing care is very expensive.
Everyone wishes they could just stay in their home and "age in place" . . . but that's not always safe or wise.

Our current plan is to set aside the proceeds of the sale of our house for this care in the future.

This has been yet another VERY helpful Thread.  Thanks!

Edited July 14, 2021 by Beth S

[skimomma]

1 minute ago, Seasider too said:

Is your person in a graduated facility, where there are both AL residences and SNF on site? In our research we found that to be the best way to avoid impossible waiting lists; AL residents got priority placement at a facility’s SNF when the time came. 

Unfortunately, no.  That was the goal when seeking a facility but we ran into three big issues.  The first is that the graduated facilities were significantly more expensive with self-pay-first requirements that we would not be able to meet.  Most were close to double what we are currently paying.  The second is that all of the ones we toured were much less independent at the AL level.  They felt more nursing home-like from the get go, which our person balked at.  For instance, all showering was scheduled and supervised regardless of whether the resident needed it or not.  This is not something my person needed and they were very (understandably) upset that they would be restricted to two supervised showers a week.  This is also probably why they were so much more expensive.  And third, the waiting lists were long.  My person needed to move ASAP.  The assistance they needed was not going to be manageable with home health care....specifically wandering and fire-setting risk.  So we took the gamble figuring it was better to solve the problem right in front of us rather than fret too much about years down the road.  Not that it has stopped me from fretting.

[TexasProud]

4 minutes ago, Seasider too said:

Is your person in a graduated facility, where there are both AL residences and SNF on site? In our research we found that to be the best way to avoid impossible waiting lists; AL residents got priority placement at a facility’s SNF when the time came. 

Yes this. We had my husband's grandmother in such a place.  They are not scams. They have different functions. In this facility, there are apartments. They can have cars. Many people start there. They have a small kitchen.  There is not any health care provided. That isn't the purpose. Now they might have a home health nurse that comes or something, but that isn't through the facility. Then they have inside rooms. You can sign up for ones that have healthcare and those that do not.  And you sign up for the level of care you need. Then you have the memory care wing that is completely locked down. They have 24 hour monitoring.  We knew quite clearly the level of care. I was up there all the time. It was as advertised.  The nursing home down the street, however, was abysmal. She had to go there a few times after surgery for short period of times and I couldn't wait to get her back to the other place.

[skimomma]

10 minutes ago, Beth S said:

 

One set of parents has LTC Insurance, intended to pay for their nursing care, but I have literally spent 100+ frustrating hours over 3 years trying to keep up with the baffling maze of paperwork.  Of course the patient could never handle this on their own, so it falls to a family member.
We estimate they paid at least $120K over the years ($6K x 20 yrs) for the coverage, and we've managed to get $100K in reimbursement.
IMO, it would have been far better for the payments to be invested, and have them live off the proceeds.

 

It is a rare unicorn but there were some good policies out there.  My person had one and it was very expensive.  But the company has been very easy to work with and has already paid out far more than was paid in.  There were some hoops to get it started but has been automatic and smooth sailing ever since.  It does not cover everything and it will likely run out well before my person passes, but without it, I have no idea what we would have done.  I can tell you that the wait for benefit approval was probably the most stressful time of my life.  There is literally no one in my family that could provide the level of care needed not to mention my person does NOT want to live with any of us.  

[Spryte]

2 hours ago, Laura Corin said:

Thank you. So Medicaid kicks in when someone needs serious nursing?

Yes, with a lot of paperwork and online activity, and lengthy phone waits to speak to people.  I’m not convinced that many elderly can navigate it on their own.  It isn’t an easy process. An attorney to help, in our area, requires $5K to make a plan, and $20K to do the application for you.  

If a person needs assistance cooking, making meals, bathing, day to day living, medication assistance… that’s not enough, IME.  What I witnessed recently is that people living in low income senior housing (not AL) functioned as best they could for as long as they could.  Eventually an emery would land them in the hospital, at which point they might go to rehab after for up to three months, which would be covered by Medicare.  Then home to manage alone with some home health care coming.  If they are unable to go live alone at all and need permanent LTC, I’d hope social workers would step in and get them on Medicaid and placed in a facility - but I never once saw that happen.  They always landed back in their apartment, and the cycle would repeat.

For ex: It took us nine months to get MIL on Medicaid, with massive bills piling up, and a lot of worry.  She’s been approved now, but something has gone wrong somewhere as she owes more than she should each month, more than she takes in. We are covering that difference while we try to sort it out.  Normally Medicaid would take all of her monthly funds except $40 for her spending each month.

As for the financials, they can have no more than $2K in assets, a life insurance policy that covers burial only.  Essentially they can’t get coverage until they are down to nothing.  

On AL, my ILs used their very expensive LTC insurance policy for that.  Also difficult to navigate.  But it covered years in AL and MIL had a better quality of life for it.  She was fortunate in that she didn’t face a waiting list for a Medicaid nursing home, because FIL was already there, a paying resident, and the nice facility allowed her in as a self pay for a few months as she finished up the LTC insurance.  Most people would face a different experience trying to find a nursing home bed.

[DoraBora]

2 hours ago, Laura Corin said:

Thank you. So Medicaid kicks in when someone needs serious nursing?

Yes, after income and assets are spent down.  There are rules about how this works.  If a couple owns a house, for instance, a surviving spouse can remain in that house until he/she must move to a nursing home (or until death).  A lien would be placed on the house until the debt to Medicaid is satisfied.

These rules are in place because some elders (and their heirs) prefer that the government pay nursing home expenses so that their money and property can be passed to those heirs.  People can hire an elder law specialist to help them plan how to pay for assisted living and nursing home care, or they can plan on their own -- abundant information is available online.  Unfortunately, many people don't want to plan, likely for the same reason many don't purchase life insurance or make wills.  It can be daunting, but it's not impossible.

By the way, Medicare (the US' health insurance for citizens 65 and older), will pay for the first 100 days of nursing home care following a three-day hospitalization.

[Laura Corin]

31 minutes ago, Spryte said:

Yes, with a lot of paperwork and online activity, and lengthy phone waits to speak to people.  I’m not convinced that many elderly can navigate it on their own.  It isn’t an easy process. An attorney to help, in our area, requires $5K to make a plan, and $20K to do the application for you.  

I applied for my mother here and it wasn't hard. There were concerns that she might be a danger to others as well as herself though. 

If a person needs assistance cooking, making meals, bathing, day to day living, medication assistance… that’s not enough, IME.  What I witnessed recently is that people living in low income senior housing (not AL) functioned as best they could for as long as they could.  Eventually an emery would land them in the hospital, at which point they might go to rehab after for up to three months, which would be covered by Medicare.  Then home to manage alone with some home health care coming.  If they are unable to go live alone at all and need permanent LTC, I’d hope social workers would step in and get them on Medicaid and placed in a facility - but I never once saw that happen.  They always landed back in their apartment, and the cycle would repeat.

My mum needed support but it wasn't extreme. As she was partly paying her own way, maybe the process wasn't so stringent though.

For ex: It took us nine months to get MIL on Medicaid, with massive bills piling up, and a lot of worry.  She’s been approved now, but something has gone wrong somewhere as she owes more than she should each month, more than she takes in. We are covering that difference while we try to sort it out.  Normally Medicaid would take all of her monthly funds except $40 for her spending each month.

As for the financials, they can have no more than $2K in assets, a life insurance policy that covers burial only.  Essentially they can’t get coverage until they are down to nothing.  

Here it's 18,000 pounds

On AL, my ILs used their very expensive LTC insurance policy for that.  Also difficult to navigate.  But it covered years in AL and MIL had a better quality of life for it.  She was fortunate in that she didn’t face a waiting list for a Medicaid nursing home, because FIL was already there, a paying resident, and the nice facility allowed her in as a self pay for a few months as she finished up the LTC insurance.  Most people would face a different experience trying to find a nursing home bed.

There are no longer any LTC insurance policies offered in the UK. They weren't profitable.

My mum bought a specialist care annuity when she entered the care home. This covers her fees. In most cases, people die after not very long in a care home. My mum is messing up the annuity company's expectations. 

[Spryte]

6 minutes ago, Laura Corin said:

There are no longer any LTC insurance policies offered in the UK. They weren't profitable.

My mum bought a specialist care annuity when she entered the care home. This covers her fees. In most cases, people die after not very long in a care home. My mum is messing up the annuity company's expectations. 

It really felt, to us, like the system here is designed to keep people out.  MIL was denied once, and I believe only accepted once we had the nursing home financial person helping us navigate things.  It sounds like it should be simple and clear cut, but it’s not.

I hope your mum continues to thrive and mess up the annuity company’s expectations!  It sounds like her care home has worked out very well.

My mom is living with us, because she’s not able to live alone but doesn’t quite fit the criteria for Medicaid LTC.  Her finances are a mess (fallout from undiagnosed mental illness and dementia), and I’m trying to help her get debt paid down.  Soon we will apply for community based care Medicaid for her, and try to get more help in.  But it’s daunting to realize that when she needs an LTC bed, there may not be one available.  For now, though, I’ve hired an aide to come in and help her bathe, and give us time out of the house as a family.  So liberating to be able to leave her alone.

[Laura Corin]

1 minute ago, Spryte said:

It really felt, to us, like the system here is designed to keep people out.  MIL was denied once, and I believe only accepted once we had the nursing home financial person helping us navigate things.  It sounds like it should be simple and clear cut, but it’s not.

I hope your mum continues to thrive and mess up the annuity company’s expectations!  It sounds like her care home has worked out very well.

My mom is living with us, because she’s not able to live alone but doesn’t quite fit the criteria for Medicaid LTC.  Her finances are a mess (fallout from undiagnosed mental illness and dementia), and I’m trying to help her get debt paid down.  Soon we will apply for community based care Medicaid for her, and try to get more help in.  But it’s daunting to realize that when she needs an LTC bed, there may not be one available.  For now, though, I’ve hired an aide to come in and help her bathe, and give us time out of the house as a family.  So liberating to be able to leave her alone.

I'm sorry that things with your mum have been so horrible. 

Mum has particular issues but was actually physically very strong for her age when she entered the care home. In particular her falls have never led to broken bones.

She refuses to participate in the 'silly' exercise classes or to walk further than she has to, so she's becoming very weak and wobbly. Being very strong minded served her well until she was in her eighties, but thereafter her unwillingness to take any advice has been damaging. It's her life to live as she wants.

[TechWife]

2 hours ago, Seasider too said:

I agree with you about the variable quality of AL, some places are quite nice. However, ime Medicaid won’t pay for it. MC policies may vary by state, but skilled nursing after asset reduction was all we could get enough assistance with to make a placement possible. And that’s for a person in need of long term elder care. I have no knowledge or experience on how policies may differ for a younger disabled person, in my state that’s handled differently. 
 

Some of the AL’s around here are deluxe! But, $$$$. 

Yes, you are correct, Medicaid doesn't pay for it. I didn't/don't dispute that at all. Disability services are handled differently here as well.

[Scarlett]

I really feel like with all of these Boomers aging something is going to have to give.  There are too many out there who do not have the option of family taking care of them.

[TechWife]

2 hours ago, Katy said:

Frontline covered this, it isn’t just my opinion. 

I’ve worked at several nursing homes that have assisted living apartments. Both of them were fairly new at the time.

Your experience is not universal. I’m glad your state regulates AL.  Most states do not and it leads to needless deaths.

Yes, regulations vary by state. Being that the Frontline report is several years old, maybe some things have changed - sometimes public reporting has an impact like that.

 

There is a brand new program through JCAHO for an accreditation program for AL. This has potential to be a game changer nationally. We will see if it takes off and if states begin requiring it. JCAHO is a bit more familiar to the general public than CARF, an org that also offers accreditation to AL as well as other facilities. Admittedly, neither org is well known to the general public.  Maybe the new certification will have an impact.

https://www.jointcommission.org/resources/news-and-multimedia/news/2021/05/the-joint-commission-launches-new-assisted-living-community-accreditation-program/

https://www.jointcommission.org/accreditation-and-certification/health-care-settings/assisted-living-community/

[LucyStoner]

Hospitals have been occasionally known to turf people with nowhere to go to the straight up street.  It’s pretty bleak.  

https://www.google.com/amp/s/www.baltimoresun.com/health/bs-hs-what-is-patient-dumping-20180111-story.html%3foutputType=amp

I know a man in his 60s who had nowhere to go after post surgery rehab and the rehab place released him to live in his truck on the street.  He died before anyone who knew him caught wind of his release and went to go help him.  

My dad is reaching a point where he needs assistance with daily living activities but he’s not at the point of needing nursing care.  The issue with home health is that they can barely keep the positions staffed and even when they can, the quality can be spotty.  

I’ve always said he could never live with us but he’s mellowed a lot, spends much of the day sleeping and my sons love him dearly.  We are looking to move to somewhere in the next year or so where he’d have his own bedroom and bathroom.  

Edited July 14, 2021 by LucyStoner

[Scarlett]

10 minutes ago, LucyStoner said:

Hospitals have been occasionally known to turf people with nowhere to go to the straight up street.  It’s pretty bleak.  

https://www.google.com/amp/s/www.baltimoresun.com/health/bs-hs-what-is-patient-dumping-20180111-story.html%3foutputType=amp

I know a man in his 60s who had nowhere to go after post surgery rehab and the rehab place released him to live in his truck on the street.  He died before anyone who knew him caught wind of his release and went to go help him.  

My dad is reaching a point where he needs assistance with daily living activities but he’s not at the point of needing nursing care.  The issue with home health is that they can barely keep the positions staffed and even when they can, the quality can be spotty.  

I’ve always said he could never live with us but he’s mellowed a lot, spends much of the day sleeping and my sons love him dearly.  We are looking to move to somewhere in the next year or so where he’d have his own bedroom and bathroom.  

I pray my mom mellows before she might ever need to come live with me.  Dh and I both agree we would need a separate dwelling on our property.....She would like her own place and I need my own space to retreat too.  I have been working for years to explain how an introvert works....I think she understands me better now.  She is not introverted.  At all.

[Scarlett]

13 minutes ago, LucyStoner said:

 

I know a man in his 60s who had nowhere to go after post surgery rehab and the rehab place released him to live in his truck on the street.  He died before anyone who knew him caught wind of his release and went to go help him.  

 

This is horrifying.  

[TechWife]

18 minutes ago, Scarlett said:

I really feel like with all of these Boomers aging something is going to have to give.  There are too many out there who do not have the option of family taking care of them.

I think that we will very shortly be in an elder care crisis. The oldest baby boomers are now in their mid-seventies. It's been my experience that quality of life rapidly decreases in the 80's. That's just anecdotal, of course. The alternatives to not addressing it are horrifying to me. It will be up to the younger baby boomers and the rest of us to address it.

[Spryte]

16 minutes ago, LucyStoner said:

Hospitals have been occasionally known to turf people with nowhere to go to the straight up street.  It’s pretty bleak.  

https://www.google.com/amp/s/www.baltimoresun.com/health/bs-hs-what-is-patient-dumping-20180111-story.html%3foutputType=amp

I know a man in his 60s who had nowhere to go after post surgery rehab and the rehab place released him to live in his truck on the street.  He died before anyone who knew him caught wind of his release and went to go help him.  

My dad is reaching a point where he needs assistance with daily living activities but he’s not at the point of needing nursing care.  The issue with home health is that they can barely keep the positions staffed and even when they can, the quality can be spotty.  

I’ve always said he could never live with us but he’s mellowed a lot, spends much of the day sleeping and my sons love him dearly.  We are looking to move to somewhere in the next year or so where he’d have his own bedroom and bathroom.  

That is tragic.  Our healthcare system is truly broken.  I’ve heard similar stories.  And wondered what happens when the elder in question loses their low income senior housing after being in rehab for three months. Which seems possible, from what I have seen. Something has to change.

There’s hope for mellowing out. I never thought my mother would mellow out.  Never.  We tried having her live with us a few years ago, and it was a disaster.  She ended up getting diagnosed and on meds, spent a year in a senior apartment with my help for meds and food, and really stabilized during that time.  She has regular check ups with the psych to keep her meds where they should be, and we can now coexist peacefully in the same house.  It’s never perfect, but it’s manageable for now.  Thank goodness, because there are no other options.  My brother won’t lift a finger to help her, that’s certain.  Unless you count phone calls with some supportive sounding words, that he can do.  But as far as visiting or actual care … nope. Thankfully, we have settled into a routine.

My FIL is also in LTC, still being covered by LTC insurance.  That will run out in the next 9 mid or so, so we will be very familiar with the Medicaid process in the near future.
 

 

[Scarlett]

12 minutes ago, TechWife said:

I think that we will very shortly be in an elder care crisis. The oldest baby boomers are now in their mid-seventies. It's been my experience that quality of life rapidly decreases in the 80's. That's just anecdotal, of course. The alternatives to not addressing it are horrifying to me. It will be up to the younger baby boomers and the rest of us to address it.

I was born in 65 and sometimes get lumped in at the tail end of Boomers.  I am only 20 years younger than my mom.....I hope I am retired before she needs serious care.  My step dad is 83 this year and seems ok, but I do worry that something could go bad at any moment. 

As for myself....I keep myself up at nights wondering what would become of me, with 3 sons (2 of which are step, but I know the youngest would not let me go without help) and no daughters.  I am hoping for a well timed fatal heart attack or something.  LOL....but not really.

[Laurie]

21 minutes ago, TechWife said:

I think that we will very shortly be in an elder care crisis. The oldest baby boomers are now in their mid-seventies. It's been my experience that quality of life rapidly decreases in the 80's. That's just anecdotal, of course. The alternatives to not addressing it are horrifying to me. It will be up to the younger baby boomers and the rest of us to address it.

We're going to need "FAL"...Family Assisted Living...for when those of us caring for special needs adults get too old to be caregivers!   

If I had a lot of money, I'd buy land and build intentional communities like this.   I wouldn't waste my money on space tourism/trying to beat the other billionaires into space.

[Scarlett]

Just now, Seasider too said:

One of our attorneys told us that is how most people approach planning for their elder years - he calls it “the drop-dead estate plan.” He said people do not like to face the fact that latter years are most commonly a slow decline in which assistance is needed. He said everyone does seem to think they are going to go from fully functional to just dropping dead one day in their 80s or 90s. 
 

I wouldn't exactly call it my plan.  But there is not much that can be done to plan now.  The options are super limited. At this point it will be what it will be.

[Carol in Cal.]

Here in CA we distinguish between memory care and assisted living.  

It is quite unusual to find the ‘continuum of care’ places anymore.   A lot of places have independent apartments, assisted living, and memory care, but for skilled nursing you have to move.

The newer LTCI policies cover home care if it’s licensed.  I know someone who had a stroke and used hers to pay for in home care a couple of times a week.  She could no longer drive but she could still function in her home if she had some significant help like that.  The helper took her shopping, cooked meals to put in the fridge for her, cleaned, and helped her shower safely.  

[Scarlett]

28 minutes ago, Laurie said:

We're going to need "FAL"...Family Assisted Living...for when those of us caring for special needs adults get too old to be caregivers!   

If I had a lot of money, I'd buy land and build intentional communities like this.   I wouldn't waste my money on space tourism/trying to beat the other billionaires into space.

My SIL, and her house mate have been working on an idea for years that is now in the works for real.  Both of them are going to care for their parents (my MIL who is widowed and the housemate's parents and one grandparent) . They are building a 2 story structure....one home about 1500 sf on each level...it will connect via breezeway to MIL's home.  MIL's home will be remodeled with an enlarged common area.  SIL and roommate will be on second floor of  new structure.  Room mates parents and one grandparent will be on first floor of new structure.  Back yard will be fabulous with zero entrance pool, fire pit, etc. 

SIL and roommate work for the same CPA firm (which is owned by family) and they can and do often work from home.  It is really an ideal set up.  Everyone who will be living there is on board (well the grandmother has fairly advanced Alzheimer's so she doesn't know where she is most days)  and excited as are most of the extended family.  I think one of Dh's brothers was quite negative about it.  

Very few people have that option available though.

Edited July 14, 2021 by Scarlett

[Scarlett]

6 minutes ago, Seasider too said:

Yea I get it, and that’s definitely part of the problem - the system is difficult to navigate. One has to prepare well in advance with a costly attorney’s assistance to get needed aid without first being absolutely destitute. Also, by the time someone really needs to have Medicaid for long term care needs, they are often incapable of doing all the paperwork needed to apply, has no family to assist, can’t afford an attorney’s fees, or made one poor financial decision in the last 60 months that disqualifies them even if they’re truly needy…. It’s just broken in so many ways. 

I am quite skilled at navigating the system.  But there is literally nothing to do at this point. I am not sure what well in advance planning you think could be done.  Or maybe I am not as skilled as I think and I am totally missing something I should be doing now.  LOL

[Laura Corin]

53 minutes ago, TechWife said:

I think that we will very shortly be in an elder care crisis. The oldest baby boomers are now in their mid-seventies. It's been my experience that quality of life rapidly decreases in the 80's. That's just anecdotal, of course. The alternatives to not addressing it are horrifying to me. It will be up to the younger baby boomers and the rest of us to address it.

Brexit is throwing the UK headlong into this. Many carers were from elsewhere in Europe, legally working here. Now they can't come.

[Carol in Cal.]

From what I have seen personally:

Married people and/or roommates prop each other up, often for years.  It’s far safer than living alone as you become frail.

Hospitals and rehab are under pressure to release people ASAP. They are supposed to release them into safe surroundings with follow up care, but they interpret that requirement much more loosely than most would consider reasonable.

The 100 days of Medicare coverage for rehab after hospitalization (3 nights) is largely theoretical.  Most people get a few weeks, not 3 months, even if they are still unable to care for themselves and still benefitting from rehab exercise.

Exiting rehab/skilled nursing, people usually go into assisted living or a ‘cozy family feeling’ care home.  Assisted living is often more wraparound and comfortable.  The care homes are more personal but accommodations are much less spacious and more crowded.  The decision rests largely on whether someone wants to be around the same people much of the time or not.

Home care is quite iffy in terms of quality and trustworthiness.  I consider it very risky locally, although I am aware of exceptions.  It has become increasingly difficult to staff here, since the COL is so high.

If I had to pick my ideal, it would be a little community of separate, very accessible homes, with large common facilities and a mix of privacy in the home but neighborhood/community feel in the paths and common areas.  Basically a village.  We actually have communities like that here, but generally they are limited to ages 55 and up, and usually they have manufactured homes with  no ownership of the land under them, so quite economically vulnerable to space rent increases or even having the park shut down to build condos.  

 

[Laura Corin]

44 minutes ago, Spryte said:

 

There’s hope for mellowing out. I never thought my mother would mellow out.  Never.  We tried having her live with us a few years ago, and it was a disaster.  She ended up getting diagnosed and on meds, spent a year in a senior apartment with my help for meds and food, and really stabilized during that time.  She has regular check ups with the psych to keep her meds where they should be, and we can now coexist peacefully in the same house.  It’s never perfect, but it’s manageable for now.  Thank goodness, because there are no other options.  My brother won’t lift a finger to help her, that’s certain.  Unless you count phone calls with some supportive sounding words, that he can do.  But as far as visiting or actual care … nope. Thankfully, we have settled into a routine.
 

 

My mum has mellowed too. I think her memory loss makes it harder for her to catastrophise at length and really dig into resentments. From when I was 11 when my dad left until I  was 51, my mum complained about him during almost every phone call. She no longer mentions him.

42 minutes ago, Scarlett said:

I was born in 65 and sometimes get lumped in at the tail end of Boomers.  I am only 20 years younger than my mom.....I hope I am retired before she needs serious care.  

My mum had me when she was 39, so her needing care coincided with my having to work full time and also manage teenagers. 

25 minutes ago, Seasider too said:

One of our attorneys told us that is how most people approach planning for their elder years - he calls it “the drop-dead estate plan.” He said people do not like to face the fact that latter years are most commonly a slow decline in which assistance is needed. He said everyone does seem to think they are going to go from fully functional to just dropping dead one day in their 80s or 90s. 
 

That was my mum's plan, but she lived a healthy life - Mediterranean diet, no car, lots of gardening - and has pretty good genes.

[Murphy101]

I have no idea how my generation and below can reasonably be expected to help their elders.  Most of us can barely pay our own medical bills and housing.  I suppose multi-generation housing situations will help a bit, but not really.  People go where the education and the jobs are and that’s often not also where the multigenerational housing option is.

[Carol in Cal.]

6 minutes ago, Seasider too said:

I don’t doubt that you are capable. But I guess I would suggest that anyone in middle life should be thinking about how their elder years are going to be financed in the scenario of being at the point of needing assistance. People do that through estate planning (with a costly attorney), setting up accounts in ways that assets are protected, trying to anticipate multiple housing scenarios, drawing up wills and POA documents… that sort of thing. 
 

To be clear, I meant that many people, by the time they reach the point of needing Medicaid for long term care, are already feeling the effects of dementia or other physical ailments to the extent that they are not really capable of gathering the necessary documentation and completing the lengthy, detailed application paperwork without assistance. 
 

In no way did I mean to insinuate that you are not mentally capable, today, Scarlett. 

Also, make sure that to the greatest possible extent your home is accessible and frail-friendly.  

[Spryte]

9 minutes ago, Murphy101 said:

I have no idea how my generation and below can reasonably be expected to help their elders.  Most of us can barely pay our own medical bills and housing.  I suppose multi-generation housing situations will help a bit, but not really.  People go where the education and the jobs are and that’s often not also where the multigenerational housing option is.

We need better options.  
 

It’s not easy to have elders who have run through their retirement savings, maxed out their LTC insurance plans, or had none of those from the start.  My family is learning as we go, and finding that resources and help are very limited for seniors. We are filling in the gaps for three elders - financial, physical, and cognitive gaps.  It’s time consuming, and expensive. That this often, as in our case, coincides with having kids in their teens, and perhaps braces then college expenses, if everyone is healthy… Just ouch.  Being sandwiched doesn’t bode well for our own retirement years, honestly, so this scenario could easily be repeatable unless things change.

[Carol in Cal.]

2 minutes ago, Spryte said:

We need better options.  
 

It’s not easy to have elders who have run through their retirement savings, maxed out their LTC insurance plans, or had none of those from the start.  My family is learning as we go, and finding that resources and help are very limited for seniors. We are filling in the gaps for three elders - financial, physical, and cognitive gaps.  It’s time consuming, and expensive. That this often, as in our case, coincides with having kids in their teens, and perhaps braces then college expenses, if everyone is healthy… Just ouch.  Being sandwiched doesn’t bode well for our own retirement years, honestly, so this scenario could easily be repeatable unless things change.

I think one of the main things is to try to eliminate the vague impression that so many people have that normal medical insurance covers that kind of care.  It’s largely untrue.  But people don’t see that until they are right up against the need, and then it’s too late to plan for it otherwise, usually.

[skimomma]

2 minutes ago, Seasider too said:

Yes, and/or be willing to relocate, even to a city where younger family members live who are willing to provide assistance. 

YES!  The person I care for refuses to move to my location and has taken the position that it is our duty to relocate to be close to them.  We are business owners so moving is not a realistic option for us.  And even if it were, we have other elders in our lives that we will eventually be caring for that do not live in that location.  Trying to take care of things from an entire day's drive away is really really hard and greatly limits care options.  I think we could have used home health care for a year or two more had we not been dealing with the distance.  As in, we could fill in for times when home health was not available or disrupted.  As it is, every medical appointment has me scrambling to find transportation and calling in to know what was discussed.  It is a mess.  But I know it could be so much worse so I count myself lucky.

[lauraw4321]

59 minutes ago, Scarlett said:

I am quite skilled at navigating the system.  But there is literally nothing to do at this point. I am not sure what well in advance planning you think could be done.  Or maybe I am not as skilled as I think and I am totally missing something I should be doing now.  LOL

If you want to qualify for Medicaid there are definitely things you can do now. Move assets to trusts, gift to kids, etc. But not everyone wants Medicaid (for good reason). 

[Spryte]

Just now, Carol in Cal. said:

I think one of the main things is to try to eliminate the vague impression that so many people have that normal medical insurance covers that kind of care.  It’s largely untrue.  But people don’t see that until they are right up against the need, and then it’s too late to plan for it otherwise, usually.

Yes.  I’m fairly sure that once upon a time I thought that assisted living would be covered by Medicare, if there was a medical need. In our area, a moderate assisted living facility starts around $4300/month, but that’s with almost no assistance, for the “independent living” side.  By the time all the needs are factored in, when it’s closer to true assisted living - it can run more like $8,000/month.  That’s absolutely out of reach for plenty of people who aren’t ready for full nursing care but are unable to live alone.  Some LTC policies will cover AL, at least, though I am under the impression that not everyone has LTC coverage, it’s very costly here.

I don’t have answers re: what needs to change, but clearly something different is needed.

[Spryte]

3 minutes ago, Seasider too said:

It’s like there has to be a human sacrifice every other generation. 
 

There, I said it. Okay, that sounds drastic but tbh it is a thought that has occurred to me in the past few years. Usually it’s a daughter or dil who has to forego any sort of post-child rearing career (or travel, or any sort of activity that takes place out of the house on a frequent basis) to tackle the needs of the elders. It's part of the high cost of our American independence and dogged self-reliance. 
 

I honestly wouldn’t have minded so much had relationships had been closer, more constant, and my elder not have been so completely reckless with regard to finances and other life choices. 

Well said!

[Scarlett]

53 minutes ago, Seasider too said:

I don’t doubt that you are capable. But I guess I would suggest that anyone in middle life should be thinking about how their elder years are going to be financed in the scenario of being at the point of needing assistance. People do that through estate planning (with a costly attorney), setting up accounts in ways that assets are protected, trying to anticipate multiple housing scenarios, drawing up wills and POA documents… that sort of thing. 
 

To be clear, I meant that many people, by the time they reach the point of needing Medicaid for long term care, are already feeling the effects of dementia or other physical ailments to the extent that they are not really capable of gathering the necessary documentation and completing the lengthy, detailed application paperwork without assistance. 
 

In no way did I mean to insinuate that you are not mentally capable, today, Scarlett. 

No worries, I wasn't offended in the slightest. But as to the bolded, we are already working pretty much paycheck to paycheck....putting as much as we can in a 401K now, but both of us had long term first marriages and our original 401Ks were destroyed by the divorces so our savings is very low now.  In no way would our simple savings pay for any sort of skilled nursing or AL.  

We are eyes wide open though as to how all of this goes down....we will certainly plan what we can.  I know MANY do not. For instance my parents bought their current house ( when we moved them to our town) when they were 79 and 72.  All three entrances to the home have at least 3 steps and their bedroom steps down from the rest of the house.  At the time I remember thinking how it was not the best choice for them, but we were exhausted looking at places over like a 4 year period and I was tired of being the bringer of unwanted comments.  Plus the yard is 3/4 acre.  Waaaay too much for my stepdad to keep up.  And although they can afford help, they won't hire anything done and yet want us to help.  I am very very grateful that they are financial ok at this point and have fabulous medical coverage (100%).  

My poor son.....he will be getting me.  And he and his wife are both only children.  And her parents are divorced too.  

[Scarlett]

43 minutes ago, Seasider too said:

It’s like there has to be a human sacrifice every other generation. 
 

There, I said it. Okay, that sounds drastic but tbh it is a thought that has occurred to me in the past few years. Usually it’s a daughter or dil who has to forego any sort of post-child rearing career (or travel, or any sort of activity that takes place out of the house on a frequent basis) to tackle the needs of the elders. It's part of the high cost of our American independence and dogged self-reliance. 
 

I honestly wouldn’t have minded so much had relationships had been closer, more constant, and my elder not have been so completely reckless with regard to finances and other life choices. 

Yes, this is true.  And I know my son knows I have not been wreckless with my finances and life choices.  

[Carol in Cal.]

45 minutes ago, Spryte said:

Yes.  I’m fairly sure that once upon a time I thought that assisted living would be covered by Medicare, if there was a medical need. In our area, a moderate assisted living facility starts around $4300/month, but that’s with almost no assistance, for the “independent living” side.  By the time all the needs are factored in, when it’s closer to true assisted living - it can run more like $8,000/month.  That’s absolutely out of reach for plenty of people who aren’t ready for full nursing care but are unable to live alone.  Some LTC policies will cover AL, at least, though I am under the impression that not everyone has LTC coverage, it’s very costly here.

I don’t have answers re: what needs to change, but clearly something different is needed.

Most modern LTC policies do cover licensed assisted living but:

—they are limited in length of coverage in general, so sometimes people want to preserve them for ‘the big need’ which is nursing home care

—The older people get, the more fiercely they seem to want to be cared for in their own homes

—Home care tends to need supervision

[Scarlett]

1 hour ago, Carol in Cal. said:

From what I have seen personally:

Married people and/or roommates prop each other up, often for years.  It’s far safer than living alone as you become frail.

Hospitals and rehab are under pressure to release people ASAP. They are supposed to release them into safe surroundings with follow up care, but they interpret that requirement much more loosely than most would consider reasonable.

The 100 days of Medicare coverage for rehab after hospitalization (3 nights) is largely theoretical.  Most people get a few weeks, not 3 months, even if they are still unable to care for themselves and still benefitting from rehab exercise.

Exiting rehab/skilled nursing, people usually go into assisted living or a ‘cozy family feeling’ care home.  Assisted living is often more wraparound and comfortable.  The care homes are more personal but accommodations are much less spacious and more crowded.  The decision rests largely on whether someone wants to be around the same people much of the time or not.

Home care is quite iffy in terms of quality and trustworthiness.  I consider it very risky locally, although I am aware of exceptions.  It has become increasingly difficult to staff here, since the COL is so high.

If I had to pick my ideal, it would be a little community of separate, very accessible homes, with large common facilities and a mix of privacy in the home but neighborhood/community feel in the paths and common areas.  Basically a village.  We actually have communities like that here, but generally they are limited to ages 55 and up, and usually they have manufactured homes with  no ownership of the land under them, so quite economically vulnerable to space rent increases or even having the park shut down to build condos.  

 

Like what my inlaws are doing basically.  🙂  They call it 'The Manor'.  By the time the older ones die dh and I might be heading there to live.

[Scarlett]

1 hour ago, Laura Corin said:

My mum has mellowed too. I think her memory loss makes it harder for her to catastrophise at length and really dig into resentments. From when I was 11 when my dad left until I  was 51, my mum complained about him during almost every phone call. She no longer mentions him.

 

Wow, that sounds exhausting!!

[Laura Corin]

7 minutes ago, Scarlett said:

Wow, that sounds exhausting!!

Well yes. It seemed normal at the time, strangely. 

[Murphy101]

1 hour ago, Carol in Cal. said:

Also, make sure that to the greatest possible extent your home is accessible and frail-friendly.  

This. I really wish that housing codes required all downstairs facilities to be handicap accessible. There are a LOT of people who could live at home if they had a home that was accessible. And for many they don’t find that out until they need it and remodeling can cost a fortune. And so they end up in a nursing home. And many don’t get to leave it. 

1 hour ago, Seasider too said:

Yes, and/or be willing to relocate, even to a city where younger family members live who are willing to provide assistance. 

And this.

many goal is that by 55 we are out of this house and in a 1 story handicap accessible house. And we would move to where the most kids are living if needed.