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

[Ginevra]

I’m listening to the book Die With Zero, and, while there are things the authors talks about that I whole-heartedly agree with (I.e., take the trip *now*, don’t just defer forever), I feel like the huge blind spot he either doesn’t see or just doesn’t think will apply to him is Alzheimer’s/Dementia. 
 

I feel like I had an object lesson when both my MIL and mom were declining and needed continuous care. My MIL had many resources. My mom had close to none. My mother’s final 2or so years were absolutely full of misery that could have been mitigated by financial resources. My MIL’s decline was wonderfully cushioned because she had financial resources. Also, her children had financial resources. 
 

Anyway…in the book, the author seems to chalk up whatever might be expensive end-care to Long Term Care insurance. I am not (yet) knowledgeable about this but I do not think LTCI just takes care of the whole bill and that’s that. 
 

I do NOT want my ending to look like my mom’s and I think financial resources go a long way towards mitigating that. But I’m open to learning about what I don’t yet know.

[maize]

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.

 

[Pawz4me]

My understanding is that very few companies offer LTC insurance now, mostly due to how much money the insurance companies have lost on it.

[J-rap]

I'm interested in this too, especially after going through all of this recently with my own parents.  

Can you explain why your mother's care in her last two years was miserable, and could have been better with financial resources? 

I have more information to add to this but would like to understand your own family member's experience better.  (Also, I'm sorry that it was miserable.  That must've been so hard to go through.)

 

[Carol in Cal.]

I have long term care insurance, and my policy has a daily maximum limit.  So if my expenses exceeded that, I would have to pay for them myself.  The limit goes up every year by 5%.  I’m very glad I have it, but I don’t figure on it covering everything I need, particularly if I need one on one caregiving at end of life the way my father did.  

Even with this, I think it is very important to have a nearby advocate to make sure that your care is good and appropriate.  Insurance and money only take you so far.  You need people, too, I think.  

Also, I’m not sanguine about availability of care going forward.  I noticed that almost all of the caregivers at the places I visited for my parents were born in another country, and I’m very thankful that they are here and helping people, but I expect at least intermittent shortages of caregivers in the future as the baby boomers take up all the available resources for quite a while.

I have not done as much as I should to keep myself healthy enough to avoid or postpone care, and that’s a focus area for me now.  

Edited June 19 by Carol in Cal.

[Terabith]

We looked into LTC insurance when we were both in our early 30s and it was pretty much completely unavailable.

[Laura Corin]

9 minutes ago, Terabith said:

We looked into LTC insurance when we were both in our early 30s and it was pretty much completely unavailable.

It's unavailable in the UK too. 

[Beth S]

My dh & I are planning to set aside the proceeds from the sale of our house for our Long-Term Care expenses.

I'll apologize in advance if this post sounds like a rant.....  😉

My FIL (& late MIL) have used their LTC policy proceeds for the past 5 years.
It has been a blessing, and has preserved their financial situation. 
(Their annual premium was $6000 per year, but it doubled recently.)
The problem is that most policy holders fail to realize the MOUNTAIN of paperwork required to be eligible for the monthly reimbursement checks.

They both separately had to qualify initially to be covered (which is complex), but every month TWO of their assisted care administrators also have to complete a form & provide the monthly bill.
Every 6 months, we are required to prove that the patient needs the care, which requires FIVE of us to complete forms (POA healthcare, POA finances, Primary Care Doc, All Medical Records, and ADL charts from their care facility.)
This has basically been my part-time job.

I don't know what the (helpless, qualifying) patients do . . . if they don't have a child who freely provides their time to submit all these forms.
It would be cost prohibitive to pay an estate planning attorney, or a CPA, or a CFP to complete these forms.

Just a heads up. 
But it's also sometimes impossible for a family member to care for the ailing parent!
There's really no easy answer, as no one knows what their future medical situation will be!
(So it's helpful to learn from others who are experiencing these challenges.)

ETA = Qualifying for hospice (even if death is more than 6 months in the future) is a welcome solution.
     There are lots of free, helpful resources there.

Edited June 19 by Beth S

[Ginevra]

10 minutes ago, J-rap said:

I'm interested in this too, especially after going through all of this recently with my own parents.  

Can you explain why your mother's care in her last two years was miserable, and could have been better with financial resources? 

I have more information to add to this but would like to understand your own family member's experience better.  (Also, I'm sorry that it was miserable.  That must've been so hard to go through.)

 

Several things:

1) My mother had severe dental decay for a couple of decades before she got to end of life. My mom (and dad) preferred to live in denial about this, presumably in part because they had no dental insurance ever and things like implants are very expensive. The problems with her teeth, gums and soft palate led to atrocious issues in her last two years. 
 

2) My mother had advanced Parkinson’s disease when she died. I cannot guess with any accuracy what care she might have gotten if she had better financial resources, but I can speculate it would have been better. 
 

3) This is the main reason: my mother would fall and get hurt, which would begin the cascade of bad situations. As you probably know, hospitals do not keep seniors who fell for long; their goal is to check off all the little boxes, so they can go to a rehabilitative care facility ASAP. Once at rehab, then *their* PT staff starts trying to check off the boxes to say they are capable of going home/going somewhere else. Medicare will pay for this care for 30 days, but not beyond. If there’s a spouse at home and/or adult children who can be pressured, they will be only too happy to check off those stupid boxes and get the bed freed up. 
 

My mom went home from the rehab facility a couple of times, which left my 81-year old dad (has his own health issues) to take care of her. There was no money/resources to pay for care or a facility or a visiting nurse. Believe me, I tried. I spoke to people on the phone numerous times, talked to my siblings about how we could contribute, brainstormed ideas for moving them into an apartment near us, and visited several care homes that were “affordable” - they were absolutely horrifying places in an undesirable urban area with spaced-out, decrepit residents sitting around staring at a TV set. 
 

In a short while, my mother would again go back to the hospital and the whole bonkers process would start over again. My mom ultimately went to my sister’s house for the last month of her life. This was hardly a great situation but this sister is the most available (HS mom to younger kids). Again, if there had been any financial resources to pay for an in-home nurse at minimum, it would have helped. I knew hospice would be helpful but I was the only one who was willing to accept what that means. My mother did not get hospice care until literally the day before she died, when she was totally incoherent and had lost the ability to swallow. 
 

If there had been money/financial resources, she could have spent the last year of her life in a very good care home, where we all could have visited her every day, but none of us would have to try and lift her, dress her, feed her, care for her wounds. OR, she could have gone home but had paid nursing help for part of the day so that much less of those things would fall on my dad or sister. 
 

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. 
 

Sorry for the novella. I hate how the end of my mother’s life went and I just passed the anniversary so I’m sure it’s on my mind. 

[Ginevra]

PS. There was also no funeral or memorial for my mother. None whatsoever. Some of this is probably reasons other than lack of money, but memorials do cost money and my dad would not have accepted, say, me paying for it. So it was deferred indefinitely and didn’t happen. 

[Shelydon]

Assisted living apartments or better quality nursing care centers are around $5500 a month here. People definitely do not save enough to cover that. 

[City Mouse]

My parents did not have LTC insurance, but they had saved a large amount of money for retirement years. My mom’s last few years were miserable, but that is because she was a miserable person; however, things would have been much harder for us( me and my sister) if they hadn’t had their savings and a substantial amount of social security. 

Their last months would have been about the same either way. My dad went to the state Veterans Home (skilled nursing) which I loved. (Iwould encourage anyone who qualifies to consider a Veteran’s Home) He was there about 2 months. My mom could have gone there, but she didn’t want to. She chose a decent affordable nursing home in her town. The plan was for her to spend down the rest of her savings then stay in the same facility on Medicaid, but she didn’t outlast her money. The only difference in level of care with private pay was that she was able to pay for a private room rather than sharing a room.
 

My DH and I are planning, or hoping, to have enough savings to do the same thing in our final years. I know from experience with my parents that staying in the home is not always a better option than a facility.

Edited June 19 by City Mouse

[Scarlett]

32 minutes ago, Ginevra said:

PS. There was also no funeral or memorial for my mother. None whatsoever. Some of this is probably reasons other than lack of money, but memorials do cost money and my dad would not have accepted, say, me paying for it. So it was deferred indefinitely and didn’t happen. 

In my view your parent’s refusal to make any changes or to accept help was a bigger problem than lack of money. 

[Longtime Lurker]

4 minutes ago, Scarlett said:

In my view your parent’s refusal to make any changes or to accept help was a bigger problem than lack of money. 

This is my parents. They have enough money but are refusing to make (enough) changes or accept help from anyone other than their children, three of whom live out of town and one of whom (me) has an adult child with special needs. However, I do think they are better off with the financial resources they have than without them.

To answer the original question, both DH and I have LTC insurance, thanks to a deal through DH's work a long time ago. Every 5 years or so, the premiums go up, and it seems expensive to me, but when I hear what others are paying I realize it's a steal. I am concerned about all the paperwork DD will need to help with just to get them to pay, but I guess it's better than not having it at all.

[Ginevra]

8 minutes ago, Scarlett said:

In my view your parent’s refusal to make any changes or to accept help was a bigger problem than lack of money. 

I’m sure it was. However, memorials do cost money. 
 

If my mother knows/knew there was no memorials for her at all, she is rolling over in her proverbial grave. My mother adored her friends and connections and I feel like I understand that, being precisely the same way. I want a memorial after my death. (Granted, I won’t know one way or the other. But to the extent I can impress this upon my family, I have said I would want a funeral, where friends can remember me, laugh, cry and share in one another’s lives.) If my mom knew she didn’t get this, she’s really miffed about it. 

[Sunshine State Sue]

My mom passed away 10 years ago at age 87. She suffered with dementia for the last 5 years of her life. Her care was $8000/mo when she passed away. If she had lived 8 more months, she would have been out of money and would have been booted out of the very nice facility. My brother said it was the best living hell money could buy - meaning life with dementia is a living hell but at least she was in a place that cared well for her.

Several years ago, our financial planner (Edward Jones if that matters) pushed hard for us to get LTCI. As I researched, I found that you had to pay until you needed it and they could raise the rates and/or lower the benefits between the beginning and the end. It just didn't seem like a good deal to me. It is interesting to hear about the mountain of paperwork required to be reimbursed.

Years later, I remember reading that if you have saved x dollars, there is no need for LTCI. I don't remember what the x dollars was, but we had saved close to that number. So, now when the financial planner tells me how much money I am going to die with, I point to it and say that is my LTCI.

This is a decent article that explains how to self-insure.

[Scarlett]

5 minutes ago, Ginevra said:

I’m sure it was. However, memorials do cost money. 
 

If my mother knows/knew there was no memorials for her at all, she is rolling over in her proverbial grave. My mother adored her friends and connections and I feel like I understand that, being precisely the same way. I want a memorial after my death. (Granted, I won’t know one way or the other. But to the extent I can impress this upon my family, I have said I would want a funeral, where friends can remember me, laugh, cry and share in one another’s lives.) If my mom knew she didn’t get this, she’s really miffed about it. 

Yes I understand. I was responding to the overall issue not just the memorial. But you could have paid for a memorial and your dad refused. That is not a money problem. 

[SHP]

I am in my 40's and I hate to sound pessimistic but I am not sure I will be alive in 40 years.

[Sunshine State Sue]

My plan for 80+

Me: 63 in decent health. Dh: 73 in excellent heath. I assume dh will be gone when I am 80 but ya never know. I assume I/we will move close to ds bc he will need to watch over me/us. I assume I/we will find independent/assisted/memory care community. I *think* there are some that will take you in if you can prove that you can pay out of pocket for 5 years and when you run out of money after that, they move you to Medicaid.

[Scarlett]

All any of us can do is the best we can do. We can’t predict how long we will live or what disease we might get that is horrible. We can care for our health and be reasonable about what needs to happen as we age and others need to care for us. We can stay out of debt, live simply, develop a network of people that we can help and who can help us. 
 

[Scarlett]

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. 

[Carol in Cal.]

The Medicare limit for rehab (with some qualifiers of course) is 100 days maximum, not 30.

Also, although hospice can be very helpful, it does need to be managed.  For instance in hospice you can’t be admitted to a hospital without relinquishing your hospice enrollment.  You can reapply for it when you leave the hospital but say you have a bad infection but want antibiotics but they have to be IV.  In that case, you would go to the ER, leave hospice, get admitted, get treatment, and then exit to either rehab or back onto hospice or onto private pay.  For someone who is really ready to die, it’s not terrible to say OK, we are going to let this infection run its course.  But for someone who is quite uncomfortable and the infection is making them miserable, if it can’t be managed with oral antibiotics hospice does not have much to offer except pain meds and anti anxiety drugs.  So it’s important to have someone watching out for that kind of stuff, and also watching to make sure that if the patient needs more pain medication than they are getting that that is requested.  Hospice nurses try to catch that stuff but they are only around 1-2X weekly for about an hour, and things can go south pretty fast in between those appointments plus they are in a hurry sometimes and can miss things.

[J-rap]

1 hour ago, Ginevra said:

Several things:

1) My mother had severe dental decay for a couple of decades before she got to end of life. My mom (and dad) preferred to live in denial about this, presumably in part because they had no dental insurance ever and things like implants are very expensive. The problems with her teeth, gums and soft palate led to atrocious issues in her last two years. 
 

2) My mother had advanced Parkinson’s disease when she died. I cannot guess with any accuracy what care she might have gotten if she had better financial resources, but I can speculate it would have been better. 
 

3) This is the main reason: my mother would fall and get hurt, which would begin the cascade of bad situations. As you probably know, hospitals do not keep seniors who fell for long; their goal is to check off all the little boxes, so they can go to a rehabilitative care facility ASAP. Once at rehab, then *their* PT staff starts trying to check off the boxes to say they are capable of going home/going somewhere else. Medicare will pay for this care for 30 days, but not beyond. If there’s a spouse at home and/or adult children who can be pressured, they will be only too happy to check off those stupid boxes and get the bed freed up. 
 

My mom went home from the rehab facility a couple of times, which left my 81-year old dad (has his own health issues) to take care of her. There was no money/resources to pay for care or a facility or a visiting nurse. Believe me, I tried. I spoke to people on the phone numerous times, talked to my siblings about how we could contribute, brainstormed ideas for moving them into an apartment near us, and visited several care homes that were “affordable” - they were absolutely horrifying places in an undesirable urban area with spaced-out, decrepit residents sitting around staring at a TV set. 
 

In a short while, my mother would again go back to the hospital and the whole bonkers process would start over again. My mom ultimately went to my sister’s house for the last month of her life. This was hardly a great situation but this sister is the most available (HS mom to younger kids). Again, if there had been any financial resources to pay for an in-home nurse at minimum, it would have helped. I knew hospice would be helpful but I was the only one who was willing to accept what that means. My mother did not get hospice care until literally the day before she died, when she was totally incoherent and had lost the ability to swallow. 
 

If there had been money/financial resources, she could have spent the last year of her life in a very good care home, where we all could have visited her every day, but none of us would have to try and lift her, dress her, feed her, care for her wounds. OR, she could have gone home but had paid nursing help for part of the day so that much less of those things would fall on my dad or sister. 
 

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. 
 

Sorry for the novella. I hate how the end of my mother’s life went and I just passed the anniversary so I’m sure it’s on my mind. 

I'm so sorry, this feels very unfair.  It seems like this is so hit and miss, and very area dependent.

My parents pre-planned a bit by getting limited longterm care insurance for my mother, but also had a plan to sell their home when needed.  That actually worked out quite well for them...  My mother's longterm care insurance didn't pay for much, but allowed her to have a private room (and still does). Once my mother went into LTC, my dad sold their home and moved into an independent apartment on the same campus my mother is on.  His Social Security payment paid his apartment rent, and their home sale allowed my mother to be in a nice LTC facility until her share of money ran out (in our state, it's based on 50% of total assets).  Once it runs out here, Medicaid kicks in (called Medical Assistance here), and they completely take over all costs, even at the private LTC facility.  I think you only need to pay for it out-of-pocket when you first enter.  If your money runs out, they can't kick you out.

My understanding of our state's Medical Assistance is that it would contribute even if living at home still, if your income or assets are under a certain amount.  You're right that dental care is very costly, and general insurance doesn't cover it.  Dental care is so expensive!

End of life options mostly feel horrible either way.  My dad was in the hospital, then in a nice transitional rehab facility where Medicare covered it for 30 days, then just partially covered it for awhile after that, and then he was transferred to the same LTC my mother is in, where he died three days later.  It all felt horrible, even though I think the facilities and staff involved did the best they could for him.  We wanted to take my dad home but his health was failing so quickly that we couldn't figure out how to make it happen fast enough.  I still have nightmares about how his life ended even though they were financially in a pretty good situation.

 

 

[Scarlett]

I am personally hoping for a fatal heart track for myself.  

[BusyMom5]

None of us can predict the future, but my DH and I have watched this play out several times the last few years and we've already discussed some things.

1.  Make the best decisions today- healthy choices, save and invest.

2.  We will probably sell our large home, downsize,  and move close to wherever our kids are.  We may have to do this a few times, depending on how things go.  Being near kids is essential IMO.

3.  Be clear with our Dr's and children,  and with ourselves, about the courses of treatment and options.  Quality vs Quantity.  

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.  

[J-rap]

22 minutes ago, Scarlett said:

I am personally hoping for a fatal heart track for myself.  

I'm kind of thinking the same!

[Bootsie]

DH and I do not have long-term care insurance.  We have not seen a policy that looks like a it is likely to be worth to cost.  We have savings and selling our house to fund care would be an option.  We don't have a particular "plan".  What we decide to do will depend upon whether one or both of us needs care, the level of care we need, and how long we thing the need will last.  DH and I each have relatives in their 80's and 90s who have had a child in their 60s move back in with them--not because the parent needed help but because the child needed help; these were not children with life-long care needs, but needs that have developed in their adult year.  So, we have seen a wide range of needs and ages at which help is needed--who knows what side of the equation we might be on in our 80s.  

[Laura Corin]

I don't know if they are available in the US - and they don't pay for pre-care home costs  - but my mum sold her house and bought a specialised care home annuity. It is only available at the point when you are being admitted to a care home and is based on your health at that point. 

That plus her state pension paid most of her expenses for the final four years.

https://www.payingforcare.org/buy-a-care-annuity/

Edited June 19 by Laura Corin

[Melissa in Australia]

4 hours ago, SHP said:

I am in my 40's and I hate to sound pessimistic but I am not sure I will be alive in 40 years.

I am 50

I don't think I will even make 20 more years. My health has gone completely. Every single day is now a  huge struggle 

[Laura Corin]

4 hours ago, Scarlett said:

I am personally hoping for a fatal heart track for myself.  

My mother hoped for the same.  But it never came.  And the hoping stopped her from making plans that would have given her more agency and improved her final years.

[Eos]

.

Edited June 20 by Eos

[TexasProud]

We do have long term care policies, but we bought them a really long time ago and the guy that sold them to us says that they don't sell them anymore.

They are going to have a very hard time getting dh off of this land.  He wants to die here. I will continue to gently bring up what if's to him. If they do happen, I hope I am alive so that I can be the bad guy instead of the children. I've already told mine that they need to make the decisions that are best for them, regardless of what I say.  My mom had a similar conversation with me 20 years ago, and it helped when I had to go against her wishes sometimes.  I know that her younger self would have agreed with my decisions.

I will also recommend a book my Aunt gave me called Being Mortal.  I  will probably reread it every 5 years or so. It helps you think about the kind of end you want. 

[hshibley]

1 hour ago, Laura Corin said:

My mother hoped for the same.  But it never came.  And the hoping stopped her from making plans that would have given her more agency and improved her final years.

This. 
 

My dfil 80 says that all the time. Also that he won’t use medical care to prolong his life while taking high blood pressure medication etc. high blood pressure medication prolongs your life. For most people it’s a long slow slope of decline like the frog in the pot not a single point of choice that you notice at the time. I really wish my in-laws would realize that and have a serious conversation with their children about their wishes and plans.

 

I think if you’re in your 50’s in the US (I am) it’s hard to envision having the financial resources for your long term care (even with being well situated for retirement). My sil father is paying 15,000 a month for a nursing home currently. After my mother passed I had a conversation with my dds about what I hoped for as far as care at the end with the understanding that what I hope for and what needs to be done are two different things. 

[Pawz4me]

8 hours ago, Sunshine State Sue said:

 

This is a decent article that explains how to self-insure.

That's a very good article, and correlates well with everything we've read and our investment advisor has told us.

[Ginevra]

8 hours ago, Sunshine State Sue said:

My mom passed away 10 years ago at age 87. She suffered with dementia for the last 5 years of her life. Her care was $8000/mo when she passed away. If she had lived 8 more months, she would have been out of money and would have been booted out of the very nice facility. My brother said it was the best living hell money could buy - meaning life with dementia is a living hell but at least she was in a place that cared well for her.

Several years ago, our financial planner (Edward Jones if that matters) pushed hard for us to get LTCI. As I researched, I found that you had to pay until you needed it and they could raise the rates and/or lower the benefits between the beginning and the end. It just didn't seem like a good deal to me. It is interesting to hear about the mountain of paperwork required to be reimbursed.

Years later, I remember reading that if you have saved x dollars, there is no need for LTCI. I don't remember what the x dollars was, but we had saved close to that number. So, now when the financial planner tells me how much money I am going to die with, I point to it and say that is my LTCI.

This is a decent article that explains how to self-insure.

Thank you; I will look at that article. 
That is the vague plan: to have money/assets sufficient to pay for memory care level help at a facility for myself and/or dh. We have some rental properties that could be sold or reverse-mortgages for this purpose, assuming we still have them if we find ourselves in that position. 
 

I do want to turn this from a vague plan to a real plan. 

[Ginevra]

8 hours ago, Scarlett said:

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

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. 

[Ginevra]

7 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. 

I know this is very controversial, and what will really matter is how my kids and/or spouse would think if it were me, but I am in favor of assisted ending of life with multiple doctor evaluation. It’s kind of crazy for me that I was allowed to end the life of my cat who had kidney failure, or my dog, who had bowel cancer, but we can’t legally choose this merciful ending for our humans. 

[Ottakee]

7 hours ago, Scarlett said:

I am personally hoping for a fatal heart track for myself.  

Well, my plan is to crawl into bed and just not wake up the next morning….just like my great great aunt did.

That said, I do think that at times all of our medical interventions prolong death but aren’t really saving a life.   I also have read the book Being Mortal and it is well worth reading.

I don’t know if I will be alive at 80.  My father died at 81, my mother at 78, my grandfather at 75 and grandmother at 79. I am working on a healthy, active lifestyle but my genetics don’t favor long lives.

[wathe]

1 hour ago, TexasProud said:

 

I will also recommend a book my Aunt gave me called Being Mortal.  I  will probably reread it every 5 years or so. It helps you think about the kind of end you want. 

I second this.  Link:  Being Mortal, by Atul Gawande.   

Death Interrupted by Blair Bigham is also good.  It's more focussed on the modern pattern of medical interventions that prevent death but result in very poor quality of life and why they have become the default and are so hard to avoid.

Edited June 19 by wathe

[Mrs Tiggywinkle Again]

My grandmother saved a lot and worked her entire adult life.  The house she built it the 1960s is worth god only knows how much now.  My point is she has resources, but it doesn’t matter because there are no in home caregivers that do her level of care.  She has late stage Parkinson’s and is total care at this point, but none of the home care agencies locally do total care.  They’re all struggling to hire workers and finding people who are willing to do incontinence care and bathing and moving people is impossible, so they just don’t do it. 

My family on that side tends to be very long lived. Historically, the elders were cared for by daughters and granddaughters, as it was a small town farm community for generations where people rarely moved away.  That’s changed in my generation, and whereas before my grandmother would have had the ten grandchildren and 17 great grandkids nearby to help her daughters with care, the truth is that it all falls 100% on my mom.  My aunt is going to work full time until her 70s, my one cousin close by is a single mom and I am the only one of my siblings who lives locally(and even I am 45 minutes away). They’ve found one neighbor lady to help two days a week.  It is a very different world from what my grandmother and mom grew up in.

My mom needs surgery and won’t be able to lift for six weeks.  She had planned to either put my grandmother into a nursing home until she found out none would accept her short term(and they are all full with waiting lists anyway) And that she needs too much care for any of our few home health agencies to come in and they are very understaffed anyway.

Essentially, just because you have resources doesn’t mean you can get the care you need, either.  I expect the staffing issues to just get worse.

[SKL]

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.

I have two daughters who I hope will visit me in my old age, to at least make sure the nursing home isn't abusing or starving me if it comes to that.

Meanwhile, it is probably a good idea to advocate for better care and oversight in state nursing homes.

(FTR I do have savings, probably more than most, but realistically I know it could run out rather quickly.  I think the more I save, the faster it would run out of people decided my care based on my savings.)

(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.)

Edited June 19 by SKL

[wathe]

I don't have LTCI.   I haven't seen a policy that would make sense for us.  Our plan is to use our retirement savings to pay for care as necessary (and to save appropriately, knowing that it will be expensive).  I also have a very open mind regarding MAID for my future self, should I judge my quality of life to be unacceptable.  And I have a very clear set of advance directives.

I initiate goals of care discussions in the ED frequently.   I'm always amazed by how many people do not have a clue about their own goals of care, or have not communicated them to family.   Especially people with clear, known, life-limiting illness -- late-stage metastatic cancer, or end-stage COPD etc.  The ED, while in crisis, is really not the best place to be thinking about this for the first time.

I also find it concerning how many people do not understand the limits of what CPR can accomplish.  It is not magic. It cannot reverse life-limiting illness.  It is very good at prolonging and, IME, maximizing suffering.  

Advance Care Planning Canada is an excellent free resource (used to be called Speak Up)

[Scarlett]

4 hours ago, Laura Corin said:

My mother hoped for the same.  But it never came.  And the hoping stopped her from making plans that would have given her more agency and improved her final years.

I didn’t mean I am not doing the best I can to take care of things. I just don’t want to live if I need 24/7 care. 

Edited June 19 by Scarlett

[Laura Corin]

2 minutes ago, Scarlett said:

I didn’t mean I am not doing the best I can to take care of things. I just don’t want to live if u need 24/7 care. 

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

[Ginevra]

51 minutes ago, wathe said:

I second this.  Link:  Being Mortal, by Atul Gawande.   

Death Interrupted by Blair Bigham is also good.  It's more focussed on the modern pattern of medical interventions that prevent death but result in very poor quality of life and why they have become the default and are so hard to avoid.

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. 

[SKL]

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?

[Ottakee]

23 minutes ago, wathe said:

 

I initiate goals of care discussions in the ED frequently.   I'm always amazed by how many people do not have a clue about their own goals of care, or have not communicated them to family.   Especially people with clear, known, life-limiting illness -- late-stage metastatic cancer, or end-stage COPD etc.  The ED, while in crisis, is really not the best place to be thinking about this for the first time.

I also find it concerning how many people do not understand the limits of what CPR can accomplish.  It is not magic. It cannot reverse life-limiting illness.  It is very good at prolonging and, IME, maximizing suffering.  

Advance Care Planning Canada is an excellent free resource (used to be called Speak Up)

I have talked a lot about this with my friend who is a hospitality in ICU and another friend who is a hospice nurse.   How often times medicine is just prolonging death and often increasing suffering and not saving a life.    
 

my MIL was diagnosed with pancreatic cancer and she was a kidney transplant patient.  I called hospice the very next day and she had a very good quality of life those last 7 months…..including going out to eat just a week before she passed.   Same with my mom.  She lived a full active life until the last 10 days when Covid took her.  Her hospice care for 4 months gave her a very peaceful and good end of life.

 

[Scarlett]

1 hour 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. 

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.  

[Scarlett]

1 hour ago, Ottakee said:

Well, my plan is to crawl into bed and just not wake up the next morning….just like my great great aunt did.

That said, I do think that at times all of our medical interventions prolong death but aren’t really saving a life.   I also have read the book Being Mortal and it is well worth reading.

I don’t know if I will be alive at 80.  My father died at 81, my mother at 78, my grandfather at 75 and grandmother at 79. I am working on a healthy, active lifestyle but my genetics don’t favor long lives.

Oh yes, I think I am going to change to your plan. Going to sleep and not waking up would be better than a heart attack.  

[Scarlett]

7 minutes ago, Laura Corin said:

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

Yes, I already have something along those lines.