Let’s Talk Long-Term Care Insurance and/or what you think your plan is at, say, 80+

[Scarlett]

7 minutes ago, Ginevra said:

I have a notion that this is a reason my parents did not plan for this possibility - they thought that if you have a plan and resources, you’re just going to prolong the end stage for years. 
 

I have read Being Mortal and it may be time for a re-read. I don’t remember thinking it was very helpful, except for trying to envision my own plan. It did not help me with my mom. 

That is because you can’t control other people.  They made the choice they made .

[Ottakee]

3 minutes ago, Scarlett said:

Yes, I already have something along those lines.  

Same here.  
 

sadly my brother was in a situation where they intubated him and the facility that sent him to Er didn’t call us.  I found out 5 hours later when the ICU doctor called me for more information (totally unaware that we didn’t know).  My brother never wanted to be intubated and we would never have agreed to it…..but 5 hours later it was too late.    He survived but his last 6 months were not great and as horrible as it sounds, we all agree he would have been better off never intubated and just had care and comfort.

 

He had a DNR signed but the facility didn’t call us or tell the ambulance/ER.   

Edited June 19 by Ottakee

[Bambam]

An elderly (93 yo now) friend bought LTCI years and years ago. Over the years the premiums have more then doubled possibly even tripled and the coverage decreased and decreased. She needed it last year, but so much paperwork, and I think six months after moving into assisted living, they are still having trouble accessing those resources. The policy was bought to cover several years of care at a long-term care place originally. Now, it covers just under a year. I have no idea how much they paid in premiums for this, but I would be curious if those premiums would have been better invested in a nice return mutual fund at Fidelity.  Certainly they would have been able to access them.  

I'm not interested in buying an insurance policy that can change the terms. I'd be furious if I discovered my auto insurance policy now had a $10,000 deductible vs. a $1,000 deductible. I'd go shopping for a new policy - but I don't think LTCI works that way. You either accept their changes or you just cancel the policy thus losing all your 'investment'. I could be wrong, so if I am, someone let me know! 

[Scarlett]

My paternal grandmother died at age 57. My paternal grandfather only to 68. But my father lived to 81. 
 

My maternal grandfather died at 68 but my maternal grandmother died at 93.

My mom is 79 and very healthy.

So who knows. You really never know.  The best laid plans and all of that…..

[Toocrazy!!]

This is a really good conversation. Thanks for starting it. I too have read that book and got a lot out of it, but you’re right that we just don’t know how much we’ll need at the end. We all want the dying in our sleep scenario, but it’s not often how it goes. And most of us will need some form of caregiving, whether that’s a person or a facility. It’s a lot to think about. My parents are still living alone at 87 and 91, but they have a big village of employees and caregivers to take care of things. But us children and spouses are still super involved with medical decisions, drs appointments, staying when they’re in the hospital, etc. I only have one DS, so I can’t expect him to be responsible for all of that without anyone to share the load. I guess what can you do but be as prepared as possible and hope for the best. I think our money situation will be ok, but it does hamper the giving it all away while you’re alive idea for sure. The point about actual caregivers is a good one. I’m a terrible caregiver and probably won’t be a great patient either. 

[Pawz4me]

1 hour ago, SKL said:

This is a scary topic for sure.  I am not sure it matters how much you save up.  A life's savings can be gone in a very short time if that's what is going to finance medical / care issues.  In a way, it's almost more sad if you've saved up for many years only to see it swept away like that, and still end up in a state nursing home.

I guess I might as well just plan for the state nursing home.

 

Some states have their own nursing homes? As far as I know those don't exist here. They're all privately (corporate) owned, and each one dedicates X number of beds to private pay patients and X number of beds to Medicaid patients. The tippy top nursing homes are much harder for Medicaid patients to get admitted to because they dedicate a lower percentage of rooms for those patients. Or at least that's my elementary school level understanding of how things work here.

 

7 minutes ago, Bambam said:

An elderly (93 yo now) friend bought LTCI years and years ago. Over the years the premiums have more then doubled possibly even tripled and the coverage decreased and decreased.

My in-laws bought LTC insurance back in the 1990's. They paid premiums for quite a few years until they skyrocketed so much that they could no longer afford to pay them. There's no telling how much money they wasted, and that left me very aware (wary?) of the risks of LTC insurance. I hope now that there are caps on how much the premiums can be raised each year, but my understanding is that LTC insurance, to the extent it's even available now, is very much a "buyer beware" type of thing.

Edited June 19 by Pawz4me

[marbel]

My/our plan? Not much of one. We did look at LTCI at one point but it too much money for too little benefit. We are just planning on having $$$ saved and equity in our home, if we still have it. But I don't believe there is a way for a non-wealthy person/couple to save enough money to ensure they won't run out. We just have to do the best we all can with our resources. 

Mainly though I came here to say I'd love to normalize another term for "putting [someone] in a nursing home." I'm sure I've said it myself but it always makes me cringe.  My father died in a nursing home at it was not awesome. But my mother and I did not "put" him there. We had to move him there because there was literally no other place for him to live in a way that was safe for him and for my  mother.  Did he like it? No. Did he understand why he had to be there? Yes. 

I don't know, it just sounds so undignified. As in, taking away a person's dignity.  

Like others, I hope I go quickly and before things get bad where I need care. That's how it worked for my mother. But I also hope I have the ability to understand why my children might have to move me to a nursing home, and maybe not the nicest one, if that's what it comes down to. 

Edited June 19 by marbel

[Scarlett]

3 minutes ago, marbel said:

My/our plan? Not much of one. We did look at LTCI at one point but it too much money for too little benefit. We are just planning on having $$$ saved and equity in our home, if we still have it. But I don't believe there is a way for a non-wealthy person/couple to save enough money to ensure they won't run out. We just have to do the best we all can with our resources. 

Mainly though I came here to say I'd love to normalize another term for "putting [someone] in a nursing home." I'm sure I've said it myself but it always makes me cringe.  My father died in a nursing home at it was not awesome. But my mother and I did not "put" him there. We had to move him there because there was literally no other place for him to live in a way that was safe for him and for my  mother.  Did he like it? No. Did he understand why he had to be there? Yes. 

I don't know, it just sounds so undignified. As in, taking away a person's dignity.  

Like others, I hope I go quickly and before things get bad where I need care. That's how it worked for my mother. But I also hope I have the ability to understand why my children might have to move me to a nursing home, and maybe not the nicest one, if that's what it comes down to. 

I think I said it up thread and yes I would love another way of saying it.  My step dad number one was cared for by my brother in my brothers home  the last 6 months of his life except for the last 2 weeks when he had to go to the nursing home.  I don’t know how else to say it.  

[Lady Florida.]

13 hours ago, maize said:

Long-term care insurance has gotten drastically more expensive and harder to acquire in the past decade or so as well. Insurance companies were losing too much money.

 

This. Dh and I both tried about 10 years go and were turned down. In each of our cases there was one little short term, resolved health issue that caused them to deny us. They will find any tiny reason to deny you.

[SKL]

I think also that this is impacted by population trends.  My folks are in their early 80s and most of their 6 kids are around age 60.  Generally, 60ish is young enough to help and old enough to not need to dedicate all of one's waking hours to one's paid job and children.  We aren't retired, but if my folks needed someone to be physically there for them, between us siblings, we should be able to figure it out.

I have 2 kids who will be 40-50 when I'm 80-90.  I think it would be harder for them to make time for me at that age, unless we are living in the same house (which could happen, but it obviously depends on many things).  Two of my siblings have 1-2 kids who are about 30 years younger than they, and 2 of my siblings have zero kids.  How's that going to work?  Maybe we should make plans to all be in the same care home!

[Lady Florida.]

2 hours ago, Ottakee said:

I also have read the book Being Mortal and it is well worth reading.

 

This is an excellent book.

9 hours ago, BusyMom5 said:

 

The last one is one we have watched soooo many times now.  Someone has a bad injury, illness, heart attack,  stroke, cancer- Dr's "save" them, but their quality of life is so low- bed bound, oxygen, in-home health for a very long time.  At some point I think we need to be honest that we are getting old, dying, and stop preventing the inevitable.  I have loved ones in their 80s and even 90s with few issues.  I also have loved ones that were bed-bound with feeding tube's, catheters, and around the clock care for over a year.  Dementia has also affected my family and if that happens I do want put in a safe place and visited often.  

A living will is so important. It's not only for the patient but for the family. When MIL had a major stroke it was clear she wasn't going to recover. She was unconscious, on a breathing tube, and brain activity was minimal. It wasn't going to be possible for her to ever "wake up". Her living will said she didn't want to continue like that. She and FIL had known each other since they were children and would have celebrated their 69th wedding anniversary in a few weeks. He could not let her go. He said he just couldn't make that decision. Dh, his siblings, and the adult grandchildren all gently pointed out that he didn't have to make the decision. She made it for herself long before her stroke.

[Ottakee]

11 minutes ago, Lady Florida. said:

This is an excellent book.

A living will is so important. It's not only for the patient but for the family. When MIL had a major stroke it was clear she wasn't going to recover. She was unconscious, on a breathing tube, and brain activity was minimal. It wasn't going to be possible for her to ever "wake up". Her living will said she didn't want to continue like that. She and FIL had known each other since they were children and would have celebrated their 69th wedding anniversary in a few weeks. He could not let her go. He said he just couldn't make that decision. Dh, his siblings, and the adult grandchildren all gently pointed out that he didn't have to make the decision. She made it for herself long before her stroke.

Yes on the living will and make sure doctors have a copy, the hospital where they are likely to go has a copy and on and on.   
 

my mom had a DNR signed by her, her doctor, and witnessed.  That didn’t matter when she ended up in a rehab facility as they said they needed their own form and signatures.   We were scrambling around one evening trying to get it all done when she was not with it enough to sign herself and we didn’t want them to send her to the hospital overnight.   It was a mess that should not have been ….but they would not accept the papers she had signed a few months before as it was a different health system and my own medical POA hadn’t been activated yet.

[Faith-manor]

Plans are hard to make when no one knows what the future holds. We do the best we can.

We have socked away a lot of money in the 401K and IRAs. The house we have now is worthless. We will practically have to give it away. There is a guy in town that would like the property so he will give us what the acre is worth, and then knock down the house/150+ year old church. That sounds sad. But the reality of living is that it just is a gorgeous but ridiculously difficult building to maintain, expensive to heat and cool. So we don't have any equity here and will lose a ton of money on this real estate. However, the Alabama house just keeps going up and up. We will get a lot of equity out of it. We will give half of it to our dd for the rent they have paid to live in it, and then we will have that other half as a buffer.

Mark's mom's house is actually worth a good bit. He is inheriting it exclusively. His brother asked to have the trust/will changed to take him out because he feels Mark should get it due to being the primary care giver and also n doing all of the house maintenance since she moved here 18 years ago. His brother is a really sweet guy. He would be involved were it not for living 900 miles away. We will use that money to build our retirement home.

We may divorce on paper when Mark retires and split the savings in half. The $120,000 ish that the non disabled spouse can keep in the event that the nursing home spouse needs Medicaid is a paltry amount of money when one considers the loss of that person's social security from monthly income, the cost of maintaining a home and insuring it. It leaves elderly people in poverty. Divorcing ahead of the issue will allow each of to keep our half, use it for our care, and hopefully not impoverish each other if one needs a nursing home and the other does not. Best laid plans of mice and men. Hard to say if it will work. Of course we will keep "living together in sin". 😅 

There are certain conditions that I have in my "not willing to live with" pile. Though I am sure this is controversial for many folks here, I do plan to take advantage of Oregon's Death with Dignity Act which has been amended to allow non residents to receive assistance. I fully recognize that this is a very controversial topic, and there will be pushback here. I won't be responding to that pushback. I do have full support from my husband and kids should I someday make that choice. I have full support if I do not. 

Apart from that, our retirement home is bring planned to be very friendly to age in place, and reasonable distance to good healthcare unlike where we are now. It will also be a multi generational home so our adult kids can comfortably bunk in should they choose to, and be a place where if the economy did a very hard crash, and they needed somewhere to re-group, they would have that too. 

I do think what passes for "a system" is going to crash in about 10 years. It is already teetering with so many Silent Generation folks and early Boomers in need, and nothing is being done by the powers that be, head in the sand approach. 10 years from now the sheer number of folks in need of care is potentially just going to cause it to crash and burn. Gen X may end up without any options. With immigration so tight, there just aren't going to be care givers, and the number we have now is bizarrely low in relation to the need.

Currently, though my body is 100% resistant to losing weight, I make the big effort anyway, and am a fiend on the rowing machine. I figure anything I can do to increase strength, flexibility, and preserve mobility is a big net gain for my husband and kids.

[livetoread]

We have the resources to manage even expensive end of life care, not so much because dh makes a lot of money (he does fine but nothing eye-opening), but because our parents were/are wealthy, we've inherited and will inherit more eventually, and we've lived below our means and saved carefully. Just because we have the resources doesn't mean I plan to use them though. I have no intention of sticking around if memory care and/or intensive care is needed in my future. I'm doing what I can to be healthy, but if things are looking bleak, I plan on ending my life, and dh knows it. I haven't had that conversation yet with my anxious young adults because it would freak them out, but I will if the need arises.

We don't live in a state that offers it, and of course any memory diagnosis complicates that too, so I don't have a good plan on how to do it. I've been researching, and there are options, but nothing is perfect like assisted suicide would be.

[Frances]

3 hours ago, Ginevra said:

Really? I do and I don’t even know them. 
 

Your mom and aunt had to take care of your grandmother. Your aunt had to care for a bedridden patient in her home for several months. If I were called upon to do this right now, I would refuse. I am not home for nine+ hours a day. And we need my job for our own futures. 

Plus, had dementia been involved, the difference likely would have been very striking. Caring for a loved one with dementia in one’s home would be very different than someone having the financial resources to be cared for in a high quality memory care facility. Like there would literally be no comparison of the effect on family members and especially if it lasted for several years, the quality of care for the patient.

[Frances]

1 hour ago, Ginevra said:

I have a notion that this is a reason my parents did not plan for this possibility - they thought that if you have a plan and resources, you’re just going to prolong the end stage for years. 
 

I have read Being Mortal and it may be time for a re-read. I don’t remember thinking it was very helpful, except for trying to envision my own plan. It did not help me with my mom. 

Another good resource is a Planet Money podcast about a Midwest city where talking about and planning for death was normalized. They actually found that people chose less intervention and prolonging of life if plans were put in place well before they were needed.

https://www.npr.org/sections/money/2014/02/28/283444163/episode-521-the-town-that-loves-death

 

[Longtime Lurker]

1 hour ago, Bambam said:

An elderly (93 yo now) friend bought LTCI years and years ago. Over the years the premiums have more then doubled possibly even tripled and the coverage decreased and decreased. She needed it last year, but so much paperwork, and I think six months after moving into assisted living, they are still having trouble accessing those resources. The policy was bought to cover several years of care at a long-term care place originally. Now, it covers just under a year. I have no idea how much they paid in premiums for this, but I would be curious if those premiums would have been better invested in a nice return mutual fund at Fidelity.  Certainly they would have been able to access them.  

I'm not interested in buying an insurance policy that can change the terms. I'd be furious if I discovered my auto insurance policy now had a $10,000 deductible vs. a $1,000 deductible. I'd go shopping for a new policy - but I don't think LTCI works that way. You either accept their changes or you just cancel the policy thus losing all your 'investment'. I could be wrong, so if I am, someone let me know! 

Whenever our LTC insurance raises rates, they give us the option of quitting and getting back all premiums paid plus interest. I figure if they are offering that, then it must be a heck of a deal for them and it makes me want to keep paying the premiums. If they want out, then it is probably a good deal to stay in as long as possible.

 

[Ginevra]

1 hour ago, Scarlett said:

No they did not ‘have’ to. They chose to.  They could have put her in a nursing home at any point along the way.  But she did not need that level of care up until the very end.  And the ‘end’ was only a few months.  She had about the best of end of life one could hope for with her family taking care of her and other family coming home to see her.  

Somebody has to pay for nursing homes. And the nursing home financial office will exhaust every possible avenue as to who that “someone” will be. A few months of being the caregiver for an end-stage patient is extremely difficult and stressful - and that’s assuming there is someone who *can* provide that care. In my experience (purely anecdotal), the large majority of people who assume end-of-life care in their home is doing so because there are NO resources to do otherwise. 
 

ETA: and nobody knows when the 24/7 care will end. It is only in retrospect that someone can say, “Yeah, I could swing that for a month.” 

Edited June 19 by Ginevra

[Scarlett]

1 minute ago, Ginevra said:

Somebody has to pay for nursing homes. And the nursing home financial office will exhaust every possible avenue as to who that “someone” will be. A few months of being the caregiver for an end-stage patient is extremely difficult and stressful - and that’s assuming there is someone who *can* provide that care. In my experience (purely anecdotal), the large majority of people who assume end-of-life care in their home is doing so because there are NO resources to do otherwise. 

In this case it would have been Medicaid paying for it because she was poor. And she was kept at home until the end because they chose to do so and were able. Also because she was 93 with congestive heart failure so it was very clear she did not have long to live. 

[Longtime Lurker]

13 hours ago, Ginevra said:

The only resources my dad had was his house (which he needs to live in), a tiny pension from the company he worked for for thirty years, a little, teensy rough land lot (which was sold but sale was not completed until mom died), and Social Security. My mother never worked at a significant earning job, had no life insurance, no social security credit, no health insurance of her own, no savings account or IRAs, no assets in her name. 

I assume you know this since your Dad had SS, but I just wanted to mention this in case others were not aware. A spouse with no SS credits of their own can still get 50% of the amount of their spouse's SS (in addition to the spouse with credits getting their full amount) if they have been married at least 10 years. Also, when the spouse with SS credits dies, then the surviving spouse continues to get whichever amount was higher at the time of death. There are some complexities involved with whether you are or are not full retirement age when starting SS, but my main point is that a spouse with no SS credits of their own can still get some SS, plus Medicare, on the working spouse's record.

[Scarlett]

43 minutes ago, Frances said:

Plus, had dementia been involved, the difference likely would have been very striking. Caring for a loved one with dementia in one’s home would be very different than someone having the financial resources to be cared for in a high quality memory care facility. Like there would literally be no comparison of the effect on family members and especially if it lasted for several years, the quality of care for the patient.

True. Dementia is a different deal. My friend cared for her mom at home with dementia for 4 years and then she went to the nursing home. She (93 year old mom)  doesn’t know where she is though. 

Edited June 19 by Scarlett

[Ginevra]

3 hours ago, SKL said:

And I think I'm OK with sharing a room if I need to be in a care facility.  I just don't want to be neglected or abused.)

Of course we all hope to not be neglected or abused. But the things I saw at the rehab facility where my mom stayed were not good, even without rising to that level. For one thing, the floors were very dirty. I had nearly made up my mind to come with my own gloves, mask, and a bucket of cleaning solution and ensuring that the tiny corner where my mom lived had clean floors. But they released her before I did that. 
 

Also: the PT people. They will do anything to check those boxes - “Can dress herself? Check! (In a hospital gown…kinda)” So when I would evaluate how my mom was doing, it was drastically different from how they were checking boxes. 
 

Sub-standard food x100. And if this woman has no teeth and a hole in her soft palate - oh well! We gave her the food! We can’t sit there and make sure it makes it into her body! 
 

Sorry for the digression. I’m looking for good solutions but they are hard to find. 

[Ginevra]

2 hours ago, SKL said:

Am I the only person wondering if my personal retirement savings will be depleted because other family members haven't been able to save for their end-of-life needs?

No, you’re not. My dad is still living, so we will potentially go through the same merry-go-round at some point with him. The only difference would be that we could sell his house if he doesn’t need to live there. But the house is not very valuable. 
 

I am not taking responsibility for my siblings, though. Not to the point of harming my own financial future. 

[Ginevra]

2 hours ago, marbel said:

Mainly though I came here to say I'd love to normalize another term for "putting [someone] in a nursing home." I'm sure I've said it myself but it always makes me cringe.  My father died in a nursing home at it was not awesome. But my mother and I did not "put" him there. We had to move him there because there was literally no other place for him to live in a way that was safe for him and for my  mother.  Did he like it? No. Did he understand why he had to be there? Yes. 

I agree with you. FWIW, I do not notice that vernacular so much now, at least where I live. It is “moved to assisted living” or “moved to a care facility.” 
 

My own personal cringe is on the word “rehab,” because of the connotations with drug and alcohol abuse. I do end up using it (and do in this thread) though, because it is a bit much to type “rehabilitation facility.” 

[City Mouse]

1 hour ago, Ottakee said:

Yes on the living will and make sure doctors have a copy, the hospital where they are likely to go has a copy and on and on.   
 

my mom had a DNR signed by her, her doctor, and witnessed.  That didn’t matter when she ended up in a rehab facility as they said they needed their own form and signatures.   We were scrambling around one evening trying to get it all done when she was not with it enough to sign herself and we didn’t want them to send her to the hospital overnight.   It was a mess that should not have been ….but they would not accept the papers she had signed a few months before as it was a different health system and my own medical POA hadn’t been activated yet.

That is because there are 2 different DNR forms. The in-hospital DNR is what most people have completed. The out-of-hospital DNR is a different thing, and that is what is required at assisted living/rehab/skilled nursing. The paramedics have sad that they unless there is an immediate family member present or the out-of hospital DNR, then resuscitation will be attempted. Even with paperwork, if the family member present wants resuscitation, the paremedics/EMT will do CPR. 
 

My father did the out-of-hospital DNR as soon as he moved to assisted living. My mother would not even when it was not in line with her advanced directive, so I told the nursing home, that as long as my mom was capable to make her own decisions, I would not challenge that, but the moment that she was not able to make her own decisions that I wanted the nursing home to follow the advance directive to the letter.

Edited June 19 by City Mouse

[Ginevra]

1 hour ago, Frances said:

Plus, had dementia been involved, the difference likely would have been very striking. Caring for a loved one with dementia in one’s home would be very different than someone having the financial resources to be cared for in a high quality memory care facility. Like there would literally be no comparison of the effect on family members and especially if it lasted for several years, the quality of care for the patient.

100%. And, I am doing all I can to ensure my brain health but I am also aware that dementia has come for several family members and it is brutal. So part of my thinking of a “plan” (such as we are able to plan) is to plan for the need for memory care level assistance. 

[prairiewindmomma]

Who knows how life will play out for me, but I have advance directives in place already. If I get dementia and can no longer always recognize loved ones, I view my “self” as having departed. The body remains but the mind has gone. I plan to go onto comfort care only at that point. If I cannot feed myself with dementia, I will not be fed. I will stop a lot of the medications keeping me alive. Dying of pneumonia or a heart attack at that point is a blessing.

Having watched several relatives die with cancer, if terminally diagnosed I have no desire to go through that process entirely on the disease timeline and I plan to legally check myself out of mortality with medically assistance when I am ready. Death with Dignity is aptly named.

I already do not qualify for independently purchased LTC or life insurance. Getting diagnosed with RA in my early 30s screwed me over.

 

[73349]

4 hours ago, SKL said:

Am I the only person wondering if my personal retirement savings will be depleted because other family members haven't been able to save for their end-of-life needs?

We're simply not going to be able to help other family members. Launching DS may be a challenge, plus I'm leaning toward starting a new career in my early 50s (read: figuring out how to afford a master's degree) and potentially continuing to work at least part-time beyond 70. ETA: We do not have any extra rooms in our house.

Neither of my parents owns a home. I know my dad has saved some money; my mom has been poor nearly all her adult life, largely as a result of decisions she made before age 30, and her health isn't great at ~70. Our siblings are all younger and mostly unmarried and kid-free; we will not be in a position to help them and do not expect them to be able to help us or our parents.

Regarding LTCI, I think it's important to keep in mind that people are not necessarily 80+ when they need it. A car wreck tomorrow, early onset dementia, etc., are part of what we're insuring for. If my DH can't walk/use stairs at least a bit, he can't get into, out of, or around our house; and even if I can't, though presently he could still carry me, we would need to make drastic changes.

Like others upthread, I'm trying to pursue a healthy lifestyle to minimize chronic health issues in the coming decades. Dying slowly is expensive in so many ways.

Edited June 19 by 73349

[Faith-manor]

3 hours ago, SKL said:

Am I the only person wondering if my personal retirement savings will be depleted because other family members haven't been able to save for their end-of-life needs?

You are not wrong to think about this!

We are going to be I that boat soon with Mark's mom. She just refuses to accept the reality of her situation or to go along doctor and physical therapist recommendations. She truly does have an expectation that Mark and I will bleed ourselves dry to keep her in her hone or pay for assisted living at $5000 a month. Mark sat her down the other day (she has been told this multiple times over the years) and reminded her that we will not use our savings to pay for in home medical care and assistance nor assisted living. She will have to have whatever limited paid help she can get on what is left of her savings (15,000 which is much!) while she waits for a bed to open up at the county care facility. She just absolutely refuses to accept this, and has told our kids more than once that this will never happen because her good boy son will pay for her care.

We are NOT independently wealthy. And every penny we spend to care for her or my mom is a penny that isn't there for us when we need care, and transfers the burden from her to us to our kids. It is a legacy of hurt that is perpetuated. If we were wealthy? No problem. We would pay for it. Not only that but eldest nephew warned me that his father, my !@@##$$#@!! limited contact brother told his sons not to worry about him. He hasn't saved a dime (or should I say he has spent most of his dimes on get rich quick schemes that fell flat), but we are such good, moral people, we will pay for him and his wife too! What the hell? And how any of these people got the idea we are rolling in cash I will never know. Here is something interesting though. We live beneath our means, but when we decided to lighten up and live a little, we bought a used Compac 19 sailboat. We love sailing. We paid $3500. LOL, apparently the gossip in our one horse town of 200 people is that people who own sailboats are rich. By extension this means we are rich. Sigh. I would not be shocked if he thinks this way because my brother is NOT a bright bulb.

I should go get myself an entire Helly Hansen outfit and act like we belong to the private Regatta Club on the lake! If I am going to be accused of it, might as well act the part. 🤣 (My current sailing apparel is a pair of thrift store Sperry loafers, a Lands End swim top, swim capri from Amazon, and a Dollar General swim cover up with a windbreaker from a garage sale. My sailing cap did come from France courtesy of my sister.

So ya. It is a huge deal. Given that assisted living runs $3500-5000 a month, and nursing home at $8000-9000 a month, it is beyond wrong for elders to expect their kids or other relatives to pay for this. Even expecting several hundred a week in paying for household help is unrealistic. I can afford a once a week housekeeper for mother in law and someone to mow the lawn. But daily help and nurses is not happening without causing a cataclysm of problems.

[Annie G]

1 hour ago, Ginevra said:

 In my experience (purely anecdotal), the large majority of people who assume end-of-life care in their home is doing so because there are NO resources to do otherwise. 
 

That hasn’t been our experience, but it may be because of how our own parents did things. Ds’s grandmother was cared for by her two daughters- they worked together to do that. Yes, it was tough, but their generation felt staying home until death was the best. In the end, all of dh’s grandparents were cared for at home. Three of my four grandparents were but the fourth did enter a nursing home for her last year. 
 

When it came time for our own parents, the three that have passed were cared for at home. Dh’s mom had dementia and while it was rough, she rarely forgot who we were, and she absolutely benefited from being in her own home with her husband sleeping in the bed beside her. Should we have hired help? Absolutely,  but SIL refused.  Resources were available, but she didn’t trust outside help. Even hospice at the very end was was only about an hour three times a week. 
 

We’re now caring for my dad (92) with dementia. He’s still in his own house but has a lot of help.  Resources are available, but he wants to stay in his home and his kids are willing to help him do that. 
 

All this to say, home care isn’t necessarily done primarily due to lack of resources. But it shouldn’t be expected that kids can/will take on this huge job. 
 

 

[SHP]

3 hours ago, Laura Corin said:

My mother wrote a living will specifying what intervention she wanted and what she refused. It was extraordinarily useful.

Everyone should do this. And they should update it as life changes. 

My plans are different now than 20 years ago and will likely be different in 20 years. 

I look at them every few years and update as needed.

[Pawz4me]

I think it's likely that doing end-of-life care in the home because the family, or at least someone in the family, chooses to do so is an entirely different thing than when it has to be done in home because there is no other choice. Money doesn't buy happiness, but it does (for most things) buy choices.

I've only personally been involved in it when it was a choice, not a necessity.

[SHP]

In many places in the US fulltime unpaid caregiving is expected of family and friends. It saves the government money, but is a huge burden to most families. I am pro family providing care, but I think they should be compensated fairly. 

[Faith-manor]

3 hours ago, SHP said:

In many places in the US fulltime unpaid caregiving is expected of family and friends. It saves the government money, but is a huge burden to most families. I am pro family providing care, but I think they should be compensated fairly. 

And the other thing that is expected is skilled nursing care by untrained family members because it saves insurance not having people who should be in the hospital actually in the hospital or sending an RN to the home. What was expected of my mother by medical professionals because Medicare was absolutely unconscionable. She wouldn't stand up to herself and did it because I flat out refused and kept telling the social worker, "I will NOT take care of that wonky, very rare chest tube set up and crazy wound care". I said it over and over and over again. So they finally started the process for medicaid and a care center, but then my mother caved in. That physical care of him took years off her life, and frankly, without RN training and just the crash course of 5 minutes with a nurse educator at the hospital, a lot of things went very very wrong. It was a nightmare. So my advice is that all family members refuse to do medical care. If you want to cook, clean, and help them to the bathroom in order to keep them in their home, fine. But absolutely do not agree to anything beyond limited CNA level work. If it would be an Paramedic, LPN, ADN, or BSRN taking care of it anywhere else, then you shouldn't do it unless you have the training. I have horror stories to tell about folks who aren't nurses doing the nursing job. 😱

Edited June 19 by Faith-manor

[marbel]

9 minutes ago, SHP said:

In many places in the US fulltime unpaid caregiving is expected of family and friends. It saves the government money, but is a huge burden to most families. I am pro family providing care, but I think they should be compensated fairly. 

I don't know much about this, but here in PA at least (or maybe just my county?), people can be paid to be a full-time caregiver for a family member. I have personally known a few people who have done this. The compensation was enough for them to quit their jobs, though the people I knew were not in high-paying jobs in the first place. Anyway, it would be worth exploring if the need came up.

[Arcadia]

5 hours ago, Ginevra said:

but I am in favor of assisted ending of life with multiple doctor evaluation.

My late mom went on a “hunger strike” because euthanasia is not legal in my country of origin. She had said many times she doesn’t want to live beyond 80, as early as when I was an elementary school kid. Quality over quantity, and lessening the burden on children. My husband’s late grandma had dementia for close to twenty years, died when she was 100 years old. Where I am from, a domestic maid from Sri Lanka, Indonesia or Myanmar could be hired to look after someone with dementia for less than $1k per month. It is a lot cheaper than a memory care home there. My dad is 81 years old and he also rather have quality versus quantity. So he rather not have a medically prolonged life span if and when the time comes. 
We don’t know what are my in-laws wishes. We don’t know if they have advanced medical directives filed. We do know that they expect their children to “bare the burden” in return for bringing them up. 

[SHP]

17 minutes ago, marbel said:

I don't know much about this, but here in PA at least (or maybe just my county?), people can be paid to be a full-time caregiver for a family member. I have personally known a few people who have done this. The compensation was enough for them to quit their jobs, though the people I knew were not in high-paying jobs in the first place. Anyway, it would be worth exploring if the need came up.

Sadly, not available in my state and many others, some states forbid close relatives from being paid cargivers. 20 years ago it was more common.

It saves the sate money to keep people in their homes and force them to rely on unpaid family for their care. 

[Carol in Cal.]

For people who are saying that you want no medical care if you get dementia, have you observed people with dementia?  It’s a progressive disease, and the initial diagnosis is during a period when people are still quite functional.  I think it’s important to distinguish between ‘dementia’ and ‘severe dementia’ in defining plans.

Also, it’s helpful to stay on top of the current state of emergency medicine in reviewing final directives.  I had a distant relative who put a strict ‘no interventions if I’m unconscious’ rule in her directive—and years later she had a stroke and because of the directive they could not give her TPA, which probably would have prevented all long term ill effects.  Because of that, although she did survive, she was quite impaired and could not live alone for the following few years until she died, mostly preventably.  Her son was medical POA but could not get the TPA for her.

[prairiewindmomma]

—

Edited June 19 by prairiewindmomma

[JIN MOUSA]

I don't contribute much on the boards, but I have a lot of relevant experience with this particular topic. 

My mom is in her early 70's and was diagnosed with Alzheimer's about 4 years ago, and as much as the situation sucks, I can see that there is a lot here that is in our favor. Some of it is the result of decisions my mom made, some of it is because of decisions my sister and I made, and lot of it feels like just dumb luck.  

She had a lot of money saved for retirement ($1.x million) and also a universal life insurance policy with a long-term care rider. 

When she was diagnosed, she was living on her own a few hundred miles from family. The disease seemed to progress rapidly, and through the changes of moving to an independent living place close to me (we all would have been miserable with her living with me), not driving, and then adding companion care a few hours a day, she did fairly well going along with what my sister and I thought was best. 

We were able to plan ahead and get on a waiting list at a memory care facility before she needed it. We narrowed it down to 2 places, both requiring a financial application, which she passed. The decision came down to our final choice because they don't evict people if they have exhausted their life savings. They will help with the Medicaid process, and they have a benevolence fund that covers the rest. I don't think it's likely we'll get there, but I could not live with even the small risk of her being kicked out of a place, having no money, and needing a high level of care. 

After several months on the memory care waiting list a spot became available, but we didn't think it was time so we turned it down and stayed on the list. That repeated a few months later.

Then my mom started to get more anxious and things started to feel more precarious, so we tried to bring in more assistance during the day, more like skilled nursing, rather than companion care. That distinction meant that we could start to access the LTC rider on her life insurance. 

The way that works is that we had 3 forms that needed to be done - one by her (read: me acting as PoA), one by her doctor (indicating that she needs assistance with at least 2 ADLs or has a level of cognitive impairment requiring supervision), and one by the care provider (either in-home or a facility). And then there was a 90 service day elimination period where we paid out of pocket before the LTC reimbursement began. 

As that was processing and we were paying to cover the 90 service days, my mom became increasingly hostile to most of the caregivers, so we decided that we were going to say yes to the next memory care spot. 

Everything worked out in such a fortuitous way - a spot became open in memory care without us ever reaching a major crisis point with my mom, and the 90 service day period was satisfied right around when she went in to memory care, which is way more expensive than the few hours of skilled nursing that we were paying for. The LTC reimbursement almost seamlessly changed from providing for the skilled nursing care to providing for memory care.

So now the life insurance company sends a check of over $10k every month, and that entirely covers the memory care bill. The LTC payouts will continue up to the full death benefit, which I'm estimating will cover about 5 years of memory care, if needed. 

My sister and I were very nervous about her move to memory care and put a lot of thought and planning into how we would pull it off. Miraculously, it went really well and we managed to encode in her brain that her new space is nice and safe. And I have no seen her this calm and peaceful in years, probably even pre-Alzheimer's diagnosis. 

My husband and I have been working on our plan, and we got a new life insurance policy that includes the LTC rider, as that feels like the best of both of worlds of LTC coverage, but if it's not used for that, there is still a death benefit. 

Throughout this process I've been struck by how incredibly terrible our current system, or lack thereof, is. We basically just tell people, "Good luck!" when the reality is that if we are fortunate enough to grow old, most of us will need some level of care, and the burden placed on so many families is just unconscionable. 

[prairiewindmomma]

Adding…my directives are clear on temporary support (breathing during surgery, etc.) versus long-term support. I do agree that specificity is very important and helpful. We’ve spent a lot of time talking about guiding principles and the degrees of intervention. We’ve also been very pro-hospice…did that with my daughter and several others. It is in part because I have been so deep in medical caregiving for the past 30 years that I feel strongly about what I do or do not want for myself and what I am willing to ask of others.

[SKL]

Don't get me wrong, I count my blessings all day, but the amount I've already given to relatives "in a bind" has already cut significantly into my retirement savings.  And if my folks need anything that isn't covered by Medicare / Social Security / their working-class pensions, the majority of my siblings will look at me and say "we don't have anything, but you do, so ...."  I do think my folks try to do their best as far as planning, but ... besides never being well-off, they did sacrifice to raise 6 kids, including helping several of them out well past adolescence.

Thinking about it, my folks really never lived "their best life."  It was basically, work until you can't do anything much.  And I could say the same for some of my siblings.  Myself, I've done a lot, and I don't have much in the way of a retirement bucket list.  I'm getting tired of the crazy pace.  I think I will just pick a few remaining destinations and really go enjoy those, do a few road trips, and be done.  That should be good for my retirement funds.  😛

[Ginevra]

@JIN MOUSA I am so happy to read how things worked out for your mom. 
 

With the LTC rider: i was curious if, in order to access this, the beneficiary is changed to the facility, thereby transferring the entire asset to the facility? Don’t get me wrong; I would still choose that in your situation; I’m just wondering if the rider is separate or using it requires signing over the whole policy. 

[KungFuPanda]

15 hours ago, Scarlett said:

I often think about xh’s grandmother and my own. Xh’s grandfather said there was enough money to last until Jesus comes. They moved from a big house to a garden home. Then he died. Then she moved to an upscale assisted living. Then in the end she ended up in a nursing home sharing a room with another patient where she died. 

My own grandmother had zero money.  When my grandfather died she was only 65 but did not drive, nor work and none of her kids lived near her. My mom moved with my brother and me 2500 miles to help her. My mom’s help was to find services to provide for my grandmother. She got her into a small home that was paid for by HUD. She went to the senior center everyday for lunch and friendship. A bus transported her. She moved in with my aunt long before she really needed to but that is another story. She ended up with congestive heart failure and was bed ridden in my aunts house for about the last several months of her life. Family and friends trickled in and out to say goodbye. Hospice nurses checked on her. 
 

Both were 93 when they died. I don’t see how my xhs grandmother was better off for all of her money. 

 

6 hours ago, Ginevra said:

Really? I do and I don’t even know them. 
 

Your mom and aunt had to take care of your grandmother. Your aunt had to care for a bedridden patient in her home for several months. If I were called upon to do this right now, I would refuse. I am not home for nine+ hours a day. And we need my job for our own futures. 

Your mother was lucky she had people to provide, for free, the services your MIL paid for. It’s another system that runs on the unpaid labor of women. She could have been in a horrible situation if those women were unable to care for her. It’s an absolute gamble to do it this way. It’s also the part of the argument that is completely glossed over when young women say there’s no point in working because daycare, clothing, or vehicles are expensive.  LIFE is expensive and you have to tally it honestly. 

[Corraleno]

Just now, KungFuPanda said:

Your mother was lucky she had people to provide, for free, the services your MIL paid for. It’s another system that runs on the unpaid labor of women. She could have been in a horrible situation if those women were unable to care for her. 

This. The burden for care of the elderly has almost always fallen on daughters and daughters-in-law, and the reason this was even possible in the past is that so many women were SAHM. My mother was able to care for her aunt (who raised her) towards the end of her life because she didn't work and we (her kids) were old enough to not need constant supervision. But it was really difficult for her, and it was hard on us kids, too — we couldn't have friends over, couldn't use our own living room or TV, didn't have transportation to activities or friends houses, etc. That only lasted 6 months but it was exhausting for my mother, really disruptive to the whole family, and would have been impossible if my mother had been working full time. I would never want to put my children and their families through that.

[Clarita]

We have savings but sometimes I hear about how much medical care costs and I think there's no way someone could save up enough to live decades with the amount of help needed for what they have going on. 

I also don't have a lot of in-family experience with having to plan end of life because the majority of family members (including extended and on both sides) haven't needed prolonged care. To us a year is a long time. My grandma did survive 10 years in a coma, but  she is also in a different country where care is provided by the government as long as the children sign a paper colloquially called "delinquent kid" papers (meaning the children tell the government they will not care for their parents at all). My mom plans to have me sign those papers should she ever have to go to a care facility. Culturally for me (city with not a lot of space) there isn't a stigma about going to a care facility, in fact a portion of my mom's older friends have chosen on their own live in assisted living.   

[skimomma]

I have experience with LTCI.  My mother has dementia, lives in assisted living, and (THANK GOODNESS) had continued to pay for her LTCI policy even after the premiums jumped well above what she could afford.  She made many MANY terrible financial decisions as her dementia progressed but this is one I am glad she made.  It was not "smart" on paper.  It nearly broke her personal finances to keep that policy but it was a HUGE help to me when she had to go into assisted living.  She is currently on year 5 of having her assisted living fully paid for by LTCI.  It was a hassle to jump through all of the hoops to get her qualified to use it, but since then, whatever paperwork is required is handled by her facility.  I have not had to do anything.  There are policy limits and daily limits.  Luckily, my mom's facility is within the daily limits.  She will exhaust the total policy payout within the next year.  I have her on several waiting lists for memory care facilities that take Medicaid.  At this point, I am just crossing all of my fingers that she hits the top of one of those lists before her insurance runs out.  (and that I can successfully move an angry woman with advanced dementia)  If not?  No idea.  I do not have the resources to pay even one month of her expenses and she already requires a level of care and supervision that would be impossible for me to carry out.

Having had such a great experience, I researched it for ourselves.  As others have said, there are not many options out there anymore and what is available is too expensive for most people.  I even talked this over with a rep from my mom's insurance company.  They basically confirmed that the only reason the daily limits and premiums were accessible to my mom is that she bought the policy in the 1990s when they were much more common.  Had her policy been even a little bit newer, the daily limit would likely be half, if not less.  So, apparently that is off the table for us.

We do not have a plan for ourselves.  We are too preoccupied at the moment with taking care of other people.  We did discuss it with our own financial planner and he confirmed that actual policies are rare and expensive.  He suggests "self-insuring" using whole life insurance.  This is what we have done but we will not get anywhere close to saving what we would need in the worst of situations.

[Paige]

I really wanted LTC insurance after seeing a family member's terrible situation. I was prepared to pony up significantly for it because it's scary. We spoke to our financial planner and the bottom line was that nothing that is currently available is workable. The premiums are too high, the return is too low and uncertain, and we (Americans, generally; us, personally) have no options that make sense. I'm so jealous of my senior relatives who bought into it in the 90s with good plans. 

[Carol in Cal.]

About reducing benefits—I don’t think that the insurance companies can reduce benefits without consent.  They can raise prices and offer benefit reductions to reduce premiums, but that’s something that the owner of the contract needs to sign off on.  We have had two price increases but our policies are about 20 years old.  I’ve kept on paying despite the increases because the benefits are so valuable, and also because in our specific case once one of us dies the other never pays any more premiums, but the benefits continue and keep growing by 5% annually. 

[Corraleno]

I'm very lucky to be in a position to self-insure against longterm care, but I also feel like there's a point at which spending all that money on prolonging the end of life (vs using it to make my children's/grandchildren's lives easier) doesn't make a lot of sense. I hope that, if I am ever diagnosed with dementia or Alzheimer's, I still have enough clarity of mind at that point to choose to depart this world with some sense of self still intact.

I also have an Advance Directive and have made my wishes very clear to my kids. My FIL refused to make any kind of plan because he was sure he'd just drop dead of a heart attack one day so he didn't need to worry about such things — instead he had a stroke and spent four years in a nursing home, paralyzed, fed through a tube, unable to speak or swallow, before mercifully passing away. That is absolutely my worst nightmare and I have made my kids promise not to let that happen to me.

One benefit of self-insuring, vs paying for LTCI, is the ability to pay or gift family members if they choose to provide some of the necessary care, so at least they could be fairly compensated for it instead of expecting them to do it out of guilt or a sense of obligation.

Edited June 19 by Corraleno