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miamac 07-11-2019 12:52 PM

Elder Care, the missing political conversation
 
The Strange Political Silence On Elder Care

I know we have a handful of caregivers here (probably more) and as one of them, I thought this was an interesting article.

Baden-Mayer, a freckled forty-five-year-old, put her house on Airbnb three years ago and moved with her husband and two kids into her parents’ home in Alexandria, Virginia. Her mom, who has Alzheimer’s disease, was no longer able to take care of her dad, who had suffered from heart failure. “I didn’t really have a good idea of what I was getting into, quite honestly,” she said, reflecting on what a truly frank conversation with her husband would have sounded like: “What do you think of living with my parents for about ten years while their health declines and they die?”
[...]
Most people assume that Medicare will cover the type of long-term personal care older people often need; it does not. Neither does standard private health insurance. And the average Social Security check can only make a medium-sized dent in the cost of this care, which can easily exceed $100,000 a year if provided in a nursing home. Medicaid, unlike Medicare, does cover long-term care, but only for patients who have exhausted their savings, and coverage, which varies from state to state, can be extremely limited. So the safety net you thought would catch you in old age is less like a net and more like a staircase you get pushed down, bumping along until you’ve impoverished yourself enough to hit Medicaid at the bottom.

I've actually had physicians (my own, not my father's) tell me "Why don't you put him in a nursing home? He has Medicare, right? You can get help at home." There is such a HUGE misconception about what it means to arrive at this stage and have just enough money to live but not enough to thrive. As my mom is dependent on his retirement, we can't deplete his resources to the point of getting help. So we do it all ourselves. I live with them, we combine our incomes and hopefully we make it through. I have nothing and even if my own health were stellar, I don't know how I would be able to hold a full time job with their needs. That means no retirement fund for me. This is trickle-down of the worst type. My mom worries what will happen to me when I'm their age because I have no children. I tell her not to worry about it, nothing to do. But I think about it.

sidewalker 07-12-2019 06:12 AM

Sadly we have been having these same conversations in my family. :(

choclgs 08-17-2019 01:58 PM

Quote:

Originally Posted by miamac (Post 7784808)
The Strange Political Silence On Elder Care

I know we have a handful of caregivers here (probably more) and as one of them, I thought this was an interesting article.

Baden-Mayer, a freckled forty-five-year-old, put her house on Airbnb three years ago and moved with her husband and two kids into her parents’ home in Alexandria, Virginia. Her mom, who has Alzheimer’s disease, was no longer able to take care of her dad, who had suffered from heart failure. “I didn’t really have a good idea of what I was getting into, quite honestly,” she said, reflecting on what a truly frank conversation with her husband would have sounded like: “What do you think of living with my parents for about ten years while their health declines and they die?”
[...]
Most people assume that Medicare will cover the type of long-term personal care older people often need; it does not. Neither does standard private health insurance. And the average Social Security check can only make a medium-sized dent in the cost of this care, which can easily exceed $100,000 a year if provided in a nursing home. Medicaid, unlike Medicare, does cover long-term care, but only for patients who have exhausted their savings, and coverage, which varies from state to state, can be extremely limited. So the safety net you thought would catch you in old age is less like a net and more like a staircase you get pushed down, bumping along until you’ve impoverished yourself enough to hit Medicaid at the bottom.

I've actually had physicians (my own, not my father's) tell me "Why don't you put him in a nursing home? He has Medicare, right? You can get help at home." There is such a HUGE misconception about what it means to arrive at this stage and have just enough money to live but not enough to thrive. As my mom is dependent on his retirement, we can't deplete his resources to the point of getting help. So we do it all ourselves. I live with them, we combine our incomes and hopefully we make it through. I have nothing and even if my own health were stellar, I don't know how I would be able to hold a full time job with their needs. That means no retirement fund for me. This is trickle-down of the worst type. My mom worries what will happen to me when I'm their age because I have no children. I tell her not to worry about it, nothing to do. But I think about it.


“It’s not Democrats and Republicans, it’s people who have been caregivers and people who haven’t.”


Since I began caring for my mother, I've learned these three highlighted points to be true. I was surprised by the number of eldercare professionals who recommended nursing home care when so facilities being understaffed and not equipped to manage care needs, especially when a resident needs one-to one care.

No one believed in this century many would be living beyond their 80s or experience as many chronic health conditions that we are experiencing. The cost associated with living a long life exceeds what many of us are prepared for.

Many of those offering advice, especially the experts, have not been caregivers before. Many times I've left appointments with more questions than answers and could have same myself the trouble of going to speak with them.

miamac 08-17-2019 02:45 PM

Quote:

Originally Posted by choclgs (Post 7789750)
Many of those offering advice, especially the experts, have not been caregivers before. Many times I've left appointments with more questions than answers and could have same myself the trouble of going to speak with them.

I went to a caregivers support meeting this last week and was floored, angered to be honest, at the misinformation the facilitator was giving. Her qualifications for leading the meeting are based on her end of life care for her boyfriend. If you ask her, he had dementia. So I was left to assume she knew what we're up against. When I said something about the lack of resources for respite care, she loudly declared that anyone with a dementia diagnosis can be put on hospice. That's not true. Hospice is reserved for a very specific period, namely the last 6-12 months of life as best predicted by a medical professional. So when I pressed her to explain more about this widely-available hospice care, she said her loved one passed in four months after his diagnosis. There are some MAJOR gaps in her story or her experience. I can't tell which one. I was relieved that another man there had been caring for his wife for over six years and could support me in assuring her that's not how it works. But what if he hadn't been there? Dementia is a generic diagnosis and can be made decades before passing. We're on year 11 with my dad.

We're finally looking into a day respite program. My dad will qualify for roughly 60 hours a month of care. We'll take him and pick him up and it's completely the opposite of his preferred lifestyle. He's a quiet, stay at home, watch documentaries kind of guy. But we have no choice. It's breaking my heart that we can't afford in-home care.

choclgs 08-17-2019 03:06 PM

Quote:

Originally Posted by miamac (Post 7789754)
I went to a caregivers support meeting this last week and was floored, angered to be honest, at the misinformation the facilitator was giving. Her qualifications for leading the meeting are based on her end of life care for her boyfriend. If you ask her, he had dementia. So I was left to assume she knew what we're up against. When I said something about the lack of resources for respite care, she loudly declared that anyone with a dementia diagnosis can be put on hospice. That's not true. Hospice is reserved for a very specific period, namely the last 6-12 months of life as best predicted by a medical professional. So when I pressed her to explain more about this widely-available hospice care, she said her loved one passed in four months after his diagnosis. There are some MAJOR gaps in her story or her experience. I can't tell which one. I was relieved that another man there had been caring for his wife for over six years and could support me in assuring her that's not how it works. But what if he hadn't been there? Dementia is a generic diagnosis and can be made decades before passing. We're on year 11 with my dad.

We're finally looking into a day respite program. My dad will qualify for roughly 60 hours a month of care. We'll take him and pick him up and it's completely the opposite of his preferred lifestyle. He's a quiet, stay at home, watch documentaries kind of guy. But we have no choice. It's breaking my heart that we can't afford in-home care.


That's the challenge with Alzheimer's disease/dementia. Finding the correct resources. I had to take a break from the support groups because it felt like a never ending cycle of grief and I was trying to get away from that feeling. My mother's beyond the point where she can go to a day program and I totally agree when it comes to in-home care. I do the best I can with what we have.

miamac 08-17-2019 03:26 PM

Quote:

Originally Posted by choclgs (Post 7789757)
That's the challenge with Alzheimer's disease/dementia. Finding the correct resources. I had to take a break from the support groups because it felt like a never ending cycle of grief and I was trying to get away from that feeling. My mother's beyond the point where she can go to a day program and I totally agree when it comes to in-home care. I do the best I can with what we have.

This is a group my mom usually attends and we had hired a caregiver to come in for two hours ($50) so we could go out together. It was definitely not the right place for me. Mom seems to get something out of it, so I support her in going. I have a friend who spent the last two years caring for her husband before he passed of stomach cancer and she's been my best go-to for support. If I can get out of the house, I'd rather spend it doing something light and not related to caregiving. I'm not naive to the path we're headed down and while advice on local resources would be great, I can tell that group is not going to be of much help.

sidewalker 10-23-2019 08:26 AM

There sure is alot of misinformation and confusion over how to set up things.
My dad is the primary source for how my folks spend their money.
While he's ok, we get quite concerned with his impulsivity.
Case in point.
He still drives. (he's 85)
And while he's not a crazy driver, he's not like he used to be. Not as sharp. He backed into a planter in a parking lot a few weeks ago. Not the first time he's done something similar. Not a huge deal and he seemed to be upset that he didnt see it.
it was in back of where he was backing out from (off to the side) since he likes to park in the handicapped spaces. (understandable for my mom who's mobility is not so hot)
Anyway.......he told me about it, and said he was not gonna claim it to insurance. Not a huge dent but the car isnt that old. I wanna say its a 2015?
So.........my dad was admiring my sisters new Subaru. He especially likes the back up camera. Says it is better than the one in his car.
After a few times of going in my sisters car and asking her all sorts of questions about it....he decides he gonna go talk to the dealership.

Both sister and I suggest he check out other dealers as well before making a decision. Like Toyota, VW, Honda, etc.
(he's been a Toyota fan for a few yrs now)
When my sister told me he was gonna see the dealer....I said he will come back with a care today. You watch.
Sure enough....they got a subaru crosstrek or something like that. Its a smaller suv with alot of the bells and whistles he wanted.
I was frustrated in that they really dont need a car like that, but ok. Just check out other cars too.
Its the exact same thing with everything with him and really sort of has been that way for quite a while now.

He does not want to do any homework, to see if its the best fit for them.


Did this with 3 houses. One in CA they wanted to sell to move to HI when they retired. Then from HI back to CA and then once they really started having health problems....they sold that place and moved into a rental my sister owns.
They have a trust.
They say they want to leave us something when they Kick the Bucket. (how they put it)
So we say....dad......what if you die first. He insists he wont. Mom will (cause he said so) My mom wants to go to an assisted living type place. Well that is super expensive and my father refuses to consider it. He even refuses to consider moving even tho the place they are living in now is difficult for my mom (shower getting in and out, and steps to get outside to either the car, or the laundry room)


All my sister and I want him to do is to maybe go see an attny who does elder care work. Review all his *stuff* See if it still works.
He wants his money accessible. Understood. But what if he cant make decisions any longer? He wont qualify for any assistance for *free* because he gets too much.
its so frustrating. Mostly for my sister. Ive resigned myself to the fact that when shits hits the fan.....and it will....he will be kicking himself over it.
None of us kids give a rip if there is anything left over to inherit. But we'd rather my folks be happy.
And trying to look up info is really tough.


Sorry so long. I guess this is more like a rant than anything else.


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