Anonymous wrote:

Anonymous wrote:My father lingered, mostly bed bound and mute with primary progressive aphasia (basically locked in syndrome) for an agonizingly long 8 months in a very expensive private skilled nursing facility.

My hot take in retrospect: we/I took too long to get him into hospice care. I really think that once a patient gets a dire diagnosis (dementia) the family needs to take a hard look at outcomes and what they want their loved ones last years -months-days to look like.

Put a Do Not Resuscitate order in place - have a copy of the order out on display and every family member needs to keep a copy. Stop all meds - my mom insisted my dad keep taking his BP meds (this prolonged his life). Initiate palliative care and transition to hospice.

My dad died 15 days into hospice care.

I can’t get assisted living to do this.

$$$$, I suspect.

+1
We had the DNR but BP meds were definitely the crutch that extended a low quality of life. Who gets to decide to stop administering? Not like the patient would think/know to take them.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This is why my plan is to kill myself if I get in this situation. I’d rather leave my money to my kids than burn through it all myself.

A lot of people think this, but the truth is by the time you’re anywhere near needing 24/7 care, you’re well past the point where you could make and execute that decision. Just functionally in most cases, ethics aside.

My dad wrote in his will that he wants all life-saving measures taken to keep him alive. No withholding anything regardless of the circumstances. I just don’t understand this mindset.

Some people are afraid to die.

PP this was my elderly mom. Had been hospitalized nearly monthly for her heart failure and had scheduled a cardiac surgeon appointment to extend her life. So this reminder was out but not her DNR. We think she hid it. She was newly under 24/7 care and became unresponsive. Aide called 911. EMS and police responded and honestly, blessedly slow-rolled their care while searching for the DNR order. Someone from EMS called me asking for her DNR order - I sent a screenshot. She died during the phone call. Absolutely traumatic experience

Anonymous wrote:

Anonymous wrote:Advice I was given some years ago is patients typically do not go beyond 2 yrs needing 24/7 care. I think this is where palliative care only, that decision needs to be made.

Mine is starting year five.

Major neurological disease excluded, why would you keep someone alive this long to suffer? Do they never get a UTI or the flu?

Anonymous wrote:

Anonymous wrote:Advice I was given some years ago is patients typically do not go beyond 2 yrs needing 24/7 care. I think this is where palliative care only, that decision needs to be made.

Mine is starting year five.

Mine too.

Anonymous wrote:

Anonymous wrote:Advice I was given some years ago is patients typically do not go beyond 2 yrs needing 24/7 care. I think this is where palliative care only, that decision needs to be made.

Mine is starting year five.

Yeah that might be average but I don't think it accounts for all kinds of bad diseases you can draw.

Anonymous wrote:

Anonymous wrote:I have a relative with 24/7 home care and they’re spending north of $350,000/year.

where is all of this money going? Why do we allow the middlemen to skim off so much cash from the actual provider?

It's going to pay the people! Duh. They don't even use a "middle man". There are 8760 hours in a year. $350k is about $40/hour. That's what it costs when you're paying people the going rate ($30ish), overtime, replacing people who are sick or quit, doubling up and hiring a van when you need to get medical care outside of the home, etc etc etc. It is a full time job for the other spouse or an adult child just to manage all the people.

I live in the DC area and my mother is in a nice-ish continuing care facility. She is now in memory care and they’ve indicated that due to them being a “level 3” facility, she can remain there in any condition other than if she needs a feeding or breathing tube. The cost is about $10k/month and she’s presently receiving the second to highest level of care (the highest level would be about a $1k bump and this would include manual feeding and hoyer lifting, if needed).

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This is why my plan is to kill myself if I get in this situation. I’d rather leave my money to my kids than burn through it all myself.

A lot of people think this, but the truth is by the time you’re anywhere near needing 24/7 care, you’re well past the point where you could make and execute that decision. Just functionally in most cases, ethics aside.

A cautionary tale: my MIL told FIL years ago that if she would k—- herself if she should ever get a diagnosis of Alzheimer’s.

My FIL was so afraid of her threat that he blatantly ignored her rapidly progressing cognitive decline and waited 2 years to have her see a GP and then insisted that she NOT be told anything about her condition. All the while MIL has agnosognosia - she’s unaware that there’s anything wrong.

MIL is now in mod-severe stage and FIL refuses all outside help. He’s done nothing to help her - no safety accommodations in their home, no enrichment activities, zero insight on disease progression- he’s in deep denial and a bumbling idiot. Meanwhile, MIL rots in front of a tv, wanders around the house, goes without bathing or showering for a week or more…

Honestly, the whole idea of enrichment for dementia patients is so over the top, as well as safety (except safety of others of course). As long as she doesn’t burn the house down and/or suffers from any pain, she is fine. FIL is saving you tons of money on care.
And, dementia patients rot by definition.
Nothing matters at this stage except safety of others and comfort of the patient

+1. Your FIL is keeping your MIL alive, which is incredibly difficult work day after day. You try it for a week and see for yourself. Be prepared to spend for full time care when he can no longer shoulder this burden, and then thank him for saving the money for as long as he did.

Most FT caregivers die before or soon after their partner.

As soon one parent died from Alzheimer’s, the other was getting dementia. It’s very common as are strokes. The stress is bad.

Anonymous wrote:My father lingered, mostly bed bound and mute with primary progressive aphasia (basically locked in syndrome) for an agonizingly long 8 months in a very expensive private skilled nursing facility.

My hot take in retrospect: we/I took too long to get him into hospice care. I really think that once a patient gets a dire diagnosis (dementia) the family needs to take a hard look at outcomes and what they want their loved ones last years -months-days to look like.

Put a Do Not Resuscitate order in place - have a copy of the order out on display and every family member needs to keep a copy. Stop all meds - my mom insisted my dad keep taking his BP meds (this prolonged his life). Initiate palliative care and transition to hospice.

My dad died 15 days into hospice care.

I can’t get assisted living to do this.

$$$$, I suspect.

Anonymous wrote:Advice I was given some years ago is patients typically do not go beyond 2 yrs needing 24/7 care. I think this is where palliative care only, that decision needs to be made.

Mine is starting year five.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If this hasn't been stated already -- even if he were to living in a facility, most facilities would require privately arranged and privately paid-for 24 hour care.

You are conflating someone in independent living who finds themselves in need of more care with full nursing care.

If the independent facility will even allow for additional care, then yes, you have to pay for it on top of the monthly facility charge. Not all will allow outside help. If the person is in assisted living, then they might need care augmentation. But if the person truly needs 24/7 care, then they need to be in a nursing home, which is 24/7 care. Though generally it is not very good care no matter how expensive the place is. I do know of people who have augmented care in memory care, but still, it isn't 24/7.

But isn't a nursing home more expensive than having 24/7 care in your own home that you own mortgage-free?

No. Being at home costs way more because you have 1-1 care plus you need someone to manage the workers and to fill in for any no shows.

You need a cook, diaper changer, activities coordinator, driver for medical visits, medicine distributor, someone to pu medicines from the pharmacy (they all come in on different days of the month so numerous visits required each month).

If needed, you might need IV, breathing equipment, or Hoyer lift.

You may need 1 or 2 people for transfer from bed to wheelchair or bed to somewhere else.

Thank you everyone. He is officially at home. I asked how the caregiver was going and he was very happy she brings him water lol. My brother said he finally seems like himself again and is much happier

I dont think he is ready for hospice he told me he wants to fight and get better. He will be doing a few times a week.

Someone asked whether he wants or needs 24/7 care. Maybe inbetween. I think he is too afraid to be alone right now since prior to hospitalization he had two instances where he couldnt stand up..but he is more stable now so we shall see.

And everyone is right it is his money and it has given me a LOT think about re my own planning.

Recommend finding a geriatric care manager locally. You can hire them hourly or maybe they have some kind of flat rate. They can help figure out all the options. It would save you a lot of time. They know the places, the prices, and which places/companies are trustworthy. They can explain hospice, etc. Essentially they are experts on aging. It's what they do. If your dad doesn't want to go, they can help you find a path forward. Spoiler: no one wants to go to an nursing home, situations evolve and they have no choice. When your time comes, you won't want to go either.

At 90, if he has the assets why not keep him at home. It's his money. Especially if he qualifies for hospice. If he were 70, I'd say something different -- you'd have to do nursing home just because they are so much cheaper than home care. But with his health condition and age, he doesn't have much time left (sorry).

Have relative in memory care. It's $17k month and she's been there for 6 years. I do have an unlimited LTC policy. I'm writing the checks and it helps me sleep at night. Many of the residents there have been there for 5+ years. We tried cheaper places, but the quality of care was awful so eventually had to go with the most expensive. It's her money, after all.

Anonymous wrote:

Anonymous wrote:Yeah what do families do when the money runs out?

The next generation goes into debt?

Medicaid? Nobody can afford $250k/year, that is 4-year college tuition.

Plenty of people can afford it. A sh&t shack in this area is $1m. The old person can sell it and pay for 3-4 years of full time care, which is not needed for that long in the vast majority of cases.

Anonymous wrote:

Anonymous wrote:Yeah what do families do when the money runs out?

The next generation goes into debt?

Medicaid? Nobody can afford $250k/year, that is 4-year college tuition.

4 year private college is now about $400k and rising.