Author Topic: Strategy for end of life care: getting it and paying for it  (Read 1994 times)

4afriend

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Strategy for end of life care: getting it and paying for it
« on: August 29, 2018, 11:26:15 PM »
Hello Mustachians, I'm hoping to get some advice that I can share with my dad. My wife and I are working on our own FIRE journey, but my parents FI'd the old fashioned way, working until (past) retirement age. As background, we all live in the US in a somewhat high COL area.

We haven't had a chance to talk about their details yet, but I'm guessing their assets are in the low/mid seven figures, and my dad mentioned they are heavy in bonds right now because he thinks the market is poised for a crash -- something like 40% equities, 50% bonds, 10% cash / cash equivalents. Their house is paid off, and they share a car which is paid off. On the income side, they are both getting SS (I assume the max for both), and my mom has a pension. They worked in healthcare and have excellent cheap coverage as part of their retirement package, backstopped by Medicare. Crucially, their coverage only covers inpatient care: surgeries, shots, office visits etc. are all covered, but in-home care is not.

All in all, they are in a good position to live comfortably, travel and generally do as they please. But my mother has been diagnosed with Alzheimer's, and the whole picture has changed. I won't belabor the emotional impact in this forum, but it is an experience you wouldn't wish on anyone and is likely to go downhill from here.

Right now, my dad is the sole caregiver and my mom can still be somewhat independent, but he is getting stretched and he feels that she will soon need more support than he can provide alone. He has ruled out any type of retirement community -- his parents, my grandparents, ended their lives in a retirement community, and he didn't feel they were able to lead high quality and dignified lives there. His preferred solution is for them to age in place in their home with in-home care as needed; my sister and I can help, but in the one day a week range, not all week long. A cursory look suggests that in-home health workers in our area might make in the $20-$25/hour range; 24-hour care would rapidly consume even their substantial resources.

So, long story short:
-What kind of preparations have folks in the community made for this kind of eventuality?
-Are you aware of / do you have experience with any kind of in-home care or other alternatives to retirement / nursing homes for elder care? (Bear in mind this is the semi-feudal US health care system that we're talking about here, not that of a civilized country.)
-And (this is the softball question) are there any financial suggestions, bearing in mind my parents could (and hopefully will) both easily live another 20 years?


kei te pai

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Re: Strategy for end of life care: getting it and paying for it
« Reply #1 on: August 30, 2018, 03:14:30 AM »
Sorry to hear about your parents situation. I am not in the US, but as I understand it your family would be looking to fully fund care at home as long as is possible.
Would your parents be able to move to a house with attached, but self contained accomodation to offer to caregivers?
If they could provide housing in exchange for household help, and your mother got used to this, then as her care needs increased you could pay the carer for more hours and for being on call for your father.

lizzzi

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Re: Strategy for end of life care: getting it and paying for it
« Reply #2 on: August 30, 2018, 05:33:27 AM »
Whew, where to start. They are in a stronger position than many Alzheimers couples, because they have plenty of resources. Talk to your local Office for the Aging and the Alzheimer Association just for information and to find out what is available in your area. At their level of finances, they can private pay for services, and can pretty much afford whatever they need, although they may need some "case management" help to pull it all together. Alzheimers doesn't necessarily last for 20 years, by the way. Some people with the diagnosis can go much sooner than that. Get a good neurological work up to determine what type of dementia it is, if you have not done that already. There is regular Alzheimers, FTD, Lewy Body...whatever. What to expect and what meds to give can differ. After you get a definitive diagnosis, you're probably just as well dealing with the regular primary care physician for the day-to-day stuff. Being an Alzheimers spouse is one of the most miserable, difficult hands your father could have been dealt. Your mother will be in a cocoon of care, but Alzheimers is the one disease (other than maybe a traumatic brain injury or something like that) that can take the spouse right along with the patient. So make sure your father gets plenty of help and support from people who "get it", and that may not be the professionals. Look for support groups for Alzheimer spouses...not just for siblings, adult children, etc. There are Alzheimer spouse support groups on line, if he uses the computer. He's going to have a long road of loneliness, exhaustion, and drain on finances, even with enough money to pay for aides--or daycare, etc. He needs to consult a good estate planning attorney and get her name off things, by the way. Make sure he has a durable power of attorney so he can make the decisions regarding their finances. If she is computer literate, make sure he changes passwords and whatever so she can't get into their accounts and mess up the money. (So much to think about that I hardly know where to start. Others should be along with good advice, too.)

Pigeon

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Re: Strategy for end of life care: getting it and paying for it
« Reply #3 on: August 30, 2018, 07:13:17 AM »
Unfortunately, dh and I had to deal with Alzheimers on both sides over the past 5 years.  My best friend is dealing with it in two of her relatives now. I would revisit the idea of keeping your mother home permanently. My ILs had always talked about staying at home no matter what, from the time I met them many decades earlier.  They viewed assisted living as a horrible, horrible situation to be avoided at all costs.

My FIL had mild to moderate Alzheimers and suffered a fall that killed him.  Up until then, my MIL was caring for  him, it was doable at the time, but probably would not have been if he'd lived much longer.  It was very hard on her, but she was also resistant to getting in anyone to help with him.   We did as much as we could, but both work and had school aged kids at the time. 

After he died, MIL lived in the family home for a few years until it became increasingly obvious that she too was getting dementia and it became unsafe for her to be alone.  She was also resistant to getting anyone in to help.  After a few incidents, we had to have a bit of an intervention.  My BIL wanted her to move in with him.  She did and it was not a happy situation.  My SIL was saddled with taking care of her full time, while BIL largely ignored her.  MIL deteriorated quite a bit, was very unhappy, although she still was terrified of the idea of moving to a care facility.  It was a lonely, socially isolated situation for MIL even though she was living with them.  She cried a lot and was very disoriented and demanding.  SIL finally had enough.

I researched the memory care facilities in the area very thoroughly.  There are some horrifyingly bad ones.  There are also some surprisingly good ones.  We were able to get MIL into my top choice.  Although she wasn't happy about moving initially, she absolutely blossomed once she settled in.  The social aspect of it was tremendously good for her.  We visited several times a week, and she usually was surrounded with other ladies her age, and they'd all tell each other the same stories over and over again, but it didn't matter cause nobody remembered anything. She was happy again.  My one regret is that we let BIL bully everyone into having MIL move in with him instead of moving her to the memory care place earlier.

The staff at this place is amazing.  They have all sorts of little tricks to deal with the residents and make their lives happier.  My older daughter ended up working with their activities department during her college vacations.  Every day there is programming, a little exercise, outings for the more competent residents, time spent outdoors.  It's a surprisingly cheerful, homey place.

It wasn't cheap.  However, if you have caregivers in frequently, that's pretty expensive, too.  My friend did that for a year or so for her mother.  It's also a ton of work in scheduling and keeping things covered.  People with Alzheimers can be really difficult to the caregivers, and there can be a lot of turnover in a low paid, thankless position.

I guess what I'm saying is be flexible and realize that home really may not be the best place for your mother when things start to decline.  This is also going to be really hard on your dad.  Be sure that you can check in often because in my experience, the spouse who is caring for the patient will try to minimize how bad the situation is because any kind of change is scary.

Your parents are fortunate in that they have ample assets.  If your mom really does have Alzheimers, she isn't likely to live with it for 20 years.  Talk to her doctor.  While no one knows for sure, my BIL (who is a physician) told us that MIL was unlikely to live more than 5 years after diagnosis, and that ended up being true, although she was otherwise pretty healthy.

I'm sorry you are dealing with this, it's a dreadful disease.

marion10

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Re: Strategy for end of life care: getting it and paying for it
« Reply #4 on: August 30, 2018, 07:58:51 PM »
I am so sorry your family is going through this. I want to echo what others have said- eventually a faculty may be the best place for your mother, but hopefully not for a while. Definitely contact your local area Office on Aging and look for a Alzheimerís Care Giver support group. My MIL spent six years in a facility- she had multiple health issues beside dementia that I wonít go into- but for the last few years she didnít know where she was anyway.

Sailor Sam

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Re: Strategy for end of life care: getting it and paying for it
« Reply #5 on: August 30, 2018, 08:41:12 PM »

Abe

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Re: Strategy for end of life care: getting it and paying for it
« Reply #6 on: August 30, 2018, 09:21:52 PM »
Does she have a healthcare power of attorney and living will? At some point you may need that if your father has any health issues that preclude him making decisions. Aside from the cost issues of end-of-life care, older people are at high risk of being scammed, so there should be some limit on her access to their accounts. It may be a good idea to keep tabs on a semi-regular basis to make sure they haven't been phished. We did all of this towards the end of my grandmother's life, and it helped prevent major problems. How people managed to find out her cellphone number is unclear, since we never gave it out to anyone.

marion10

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Re: Strategy for end of life care: getting it and paying for it
« Reply #7 on: August 30, 2018, 09:38:30 PM »
Yes- I was going to add that- this is the time to consult with an attorney to get power of attorney  and healthcare issues straight.

Dicey

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Re: Strategy for end of life care: getting it and paying for it
« Reply #8 on: August 31, 2018, 07:47:57 AM »
Thanks, SS, sir, bat signal received. I have early medical appointments today, but will check back and read from beginning asap. Thanks for the ping. This disease utterly blows donkey balls for everyone it touches.

4afriend

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Re: Strategy for end of life care: getting it and paying for it
« Reply #9 on: August 31, 2018, 11:35:08 AM »
Hi all, thank you very much for the well wishes and the practical advice. You gave me a lot to think about and a lot of new information, especially around POA and healthcare POA/living will. I also didn't know about lifespan post-diagnosis...something I could have looked up but probably chose not to. While that is not the news I would hope for, it may change the financial picture, especially if they do wind up with 24 hour care.

Kei Te Pai, your suggestion of a live-in caregiver is interesting...I think they're not likely to move, but they do have a garage that could potentially be converted to an apartment. Not sure how common that arrangement is in this area, but definitely something to think about.

I'm sorry to hear that so many in the community have been touched by this disease, which as Dicey aptly put it "utterly blows donkey balls". Thanks for your thoughts and suggestions, and please keep them coming!

Linda_Norway

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Re: Strategy for end of life care: getting it and paying for it
« Reply #10 on: September 04, 2018, 02:39:01 AM »
My parents in law are in the same situation, although they have been enjoying 15 years of FIRE before MIL started to loose parts of her brain. In the beginning FIL took care of her himself. But gradually she needed more and more help all the time, causing FIL sleep deprivation. Now she is living in a home where they take care of elderly and Alzheimer people. It is situated 300 meters (330 yards) from they own home, where FIL still lives.
FIL still feels obligated to visit daily and often twice a day. He takes her driving in his car, where she promptly falls asleep. He has taken her along on trip, visiting us, visiting Copenhagen. These trips for for his benefit, living an almost normal life, but they were obviously strenuous for her. Now he sometimes travels alone, typically a week a year. And he gets MIL's brother to live in his house and visit MIL every day.
But at least, outside those visits to MIL, FIL can now live his life normally. He is doing his hobby, currently building a woodstrip kayak for us. When MIL was living at home, he didn't have this possibility, because MIL needed so much caretaking all the time, like not setting herself on fire with a candle. Living separately has made his life much more bearable.
They got some help from the Alzheimer association. For example they now both receive their old age pension for a single person, which is higher than what they got as a married person. This difference is paying for the extra overnight cost in the caretaking home, which charges hotel prices.

So, know what you do with inhouse care. The demented person will dominate the sphere in the house and change people into permanent caretakers. This does not give the remaining spouse the option to live a fully normal life. Also consider that the demented person will eventually need care 24 hours a day. That is 3 working shifts, very expensive is you have a hire 3 people per day. A caretaking home has these people during the night shifts, but divided over many more patients.

Sibley

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Re: Strategy for end of life care: getting it and paying for it
« Reply #11 on: September 28, 2018, 07:39:22 AM »
Never say never. Dementia will destroy everyone and everything it touches, so do NOT rule out aides, or memory care, or anything. My grandmother became violent during one stage of the disease. Even the memory care unit couldn't handle her for a while, how would my frail grandfather have managed?

For your parents, now, they need to make meet with a qualified elder care attorney and make sure all the paperwork is taken care of. Wills, trusts, POA, etc. They also need to think through, discuss, and write down their wishes for medical treatment, funerals, etc.

Support groups, therapy, or similar may be helpful in coping with the emotional impacts this will have - for everyone.

Pigeon

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Re: Strategy for end of life care: getting it and paying for it
« Reply #12 on: September 28, 2018, 09:36:25 AM »
Never say never. Dementia will destroy everyone and everything it touches, so do NOT rule out aides, or memory care, or anything. My grandmother became violent during one stage of the disease. Even the memory care unit couldn't handle her for a while, how would my frail grandfather have managed?

For your parents, now, they need to make meet with a qualified elder care attorney and make sure all the paperwork is taken care of. Wills, trusts, POA, etc. They also need to think through, discuss, and write down their wishes for medical treatment, funerals, etc.

Support groups, therapy, or similar may be helpful in coping with the emotional impacts this will have - for everyone.

I agree with this, especially the bolded.  It really can change a person's personality completely as changes in the brain get worse.  My FIL was one of the nicest men you would ever meet.  Low key, easy going and a genuinely good guy.  During certain parts of the day (after dinner), he would become agitated to the point of violence.  My MIL would be distraught and was unable to manage him.  This would have only gotten worse.  My dd works summers in the same memory care facility that my MIL later entered.  It is not uncommon for some of the men there to attempt to sexually assault the  staff.  These men were not like that before they got sick.

jodelino

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Re: Strategy for end of life care: getting it and paying for it
« Reply #13 on: October 03, 2018, 04:07:20 PM »
Sorry that your family is going through this. My spouse's side has the genetics for Alzheimers, and I have seen up close one rapid demise from a quickly advancing Alzheimer's, with good care in a retirement community, and one in-law currently being cared for lovingly at home by a healthy and vigorous spouse, through a long and gentle decline. In-home care may be in their future, but they are not there yet.

A different diagnosis, but I was able to keep my mother in her home as she declined from a rapidly-advancing cancer, while working full-time. I hired caregivers during the day ($20/hour) and I stayed with her overnight and weekends. Hospice was also great, and could at some point be another resource for your mother.

You asked about how members of the community prepare: My spouse and I have both been tested genetically and gotten results that don't necessarily predict the future, but are useful data (one of us with good news, one of us with bad news); we both purchased long-term care policies 20 years ago, when good policies were much more affordable than they are now (not sure I would purchase one in today's market); even though we have a marital division of labor, we each try to have good records and information-sharing so that the other could take over if necessary; we have all the basics of estate planning: wills, POA, health care POA. We discuss all of this with our (wonderful) adult children and with other trusted family members and very close friends.