Eldercare is tearing my family apart

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My dad is in a Medicaid bed in a secure memory care facility that is a mix of Medicaid and private pay. His “household” looks like a college dorm with a common area surrounded by private rooms with en-suite bathrooms. The food is simple but prepared in the kitchen each day and the cook takes requests as much as he can. I just had our yearly call with his therapist about his goals for the year. I mentioned some of his favorite movies that she hadn’t know about; she said that she will rent them for him.

He is safe, well cared for, and seems happier than when my mom was driving herself into the ground trying to care for him at home. It did take a long time on the waitlist to get this spot.

Hang in there, OP.

It sounds like your Dad is in a good place. Is it near DC?

It really does sound like your dad is in a good place. I'll bet your mom is doing a lot better, too.

They are up near Baltimore. Mom is much better and moved into independent living with lots of activities appropriate to what she can do, which she could not do if he was still with her, like museum trips. Both are in places with religious connections and I think that that’s an important difference. These places are non-profit.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My dad is in a Medicaid bed in a secure memory care facility that is a mix of Medicaid and private pay. His “household” looks like a college dorm with a common area surrounded by private rooms with en-suite bathrooms. The food is simple but prepared in the kitchen each day and the cook takes requests as much as he can. I just had our yearly call with his therapist about his goals for the year. I mentioned some of his favorite movies that she hadn’t know about; she said that she will rent them for him.

He is safe, well cared for, and seems happier than when my mom was driving herself into the ground trying to care for him at home. It did take a long time on the waitlist to get this spot.

Hang in there, OP.

It sounds like your Dad is in a good place. Is it near DC?

It really does sound like your dad is in a good place. I'll bet your mom is doing a lot better, too.

They are up near Baltimore. Mom is much better and moved into independent living with lots of activities appropriate to what she can do, which she could not do if he was still with her, like museum trips. Both are in places with religious connections and I think that that’s an important difference. These places are non-profit.

It's a blessing that you were able to help them both find good living situations. It seems sad that they have to live apart after so many years together. Do they see each other frequently?

[Anonymous]

Anonymous wrote:

Anonymous wrote:My mom,- dad have good pension, medical care and insurance. They moved in with my brother and pay him. The running of the house cooking etc is done by staff my brother hired. They all benefit. My parents have a separate suite. I

This is exactly the set up my SIL had with her parents. Worked out beautifully, especially since my SIL is a nurse.

Presumably, there are many medical things she is able to do as a result. I don’t think I should have to undergo medical training for my dad to get decent care. If in home care can’t be decently subsidized, there need to be more facilities.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mom,- dad have good pension, medical care and insurance. They moved in with my brother and pay him. The running of the house cooking etc is done by staff my brother hired. They all benefit. My parents have a separate suite. I

This is exactly the set up my SIL had with her parents. Worked out beautifully, especially since my SIL is a nurse.

Presumably, there are many medical things she is able to do as a result. I don’t think I should have to undergo medical training for my dad to get decent care. If in home care can’t be decently subsidized, there need to be more facilities.

She never did anything medical, but the knowledge helped her learn sooner when things might not be right. Home aids do not have formal medical training either. Anyone in need of true medical care can either get outpatient or might need a nursing home.

[Anonymous]

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I was hoping that by seeing how much they’ve uprooted my life and made me miserable, they’d concede to outside help

You CAN NOT be afraid of Mommy and Daddy not liking you. You have power over your own life.

Seriously, this is absurd. Middle-aged adults are letting their parents run their lives.

It's not absurd. These are difficult conversations and some of us are wracked with guilt at the thought of our parents moving to facilities or institutions where we don't know how the care will be. Sometimes these responsibilities also sneak up on you a bit; you start out by handling a few things and the list keeps growing. OR, in many cases, a parent has a fall or illness and you care for them during that time and, guess what? They don't get better or they never get back to the level they were before the event. All of a sudden you realize that you are still doing everything and the parent has gotten comfortable with the care they're getting. It's not simple or easy.

I’m OP. This perfectly describes my situation. It started with manageable help like a ride to the doctor or the grocery store and then quickly became a 2-3 nights a week obligation of care. Over the last couple years, it has morphed into a full time second job located an hour away from my paying job and family. Once DH was diagnosed, I thought my siblings would help me get our dad into a place. Instead they say how amazing it is that he can have his independence thanks to me. He doesn’t have independence. He has someone who helps him avoid diaper rash and scurvy.

Man, I am so sorry OP. I hope the scripts someone posted way upthread help. I know you may still have feelings of guilt, but there's only so much one person can do and your husband, your partner and father to your child/children, deserves the amount of care you have so far been able to give your father.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Only child here doing elder care for 1 parent. I wish we could be as kind to sick/ aging humans as we are to dogs. Some need to be put down but dont qualify for the very narrow right to die criteria (6 months to live and of sound mind). Alzheimer’s, dementia, and other physically slower deteriorating diseases are very common and it’s purely the greed of aging care industries that these people be kept alive and spoon fed at all costs so they can continue paying $9-15k a month for care. Sorry for the rant I’m just so over it and it’s more cruel when you know your family member in their “right mind” was the person who always said “I don’t want to end up like that/ please just kill me if I’m ever like that, etc”.

I totally agree. Medical greed is bankrupting our country and extending lives in truly miserable ways. We need to majorly rethink all of this as a society.

You can always refuse food or medical care. It is not greed.

If you have Alzheimer's and are not competent to refuse, then no, you can't. And any caregiver that tried to refuse food or medical care on behalf of their elderly parent with Alzheimer's or dementia would be prevented from doing so, even with a medical power of attorney.

[Anonymous]

^^maybe not all medical care, but certainly routine intervention to keep the person alive with the exception of DNR.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Only child here doing elder care for 1 parent. I wish we could be as kind to sick/ aging humans as we are to dogs. Some need to be put down but dont qualify for the very narrow right to die criteria (6 months to live and of sound mind). Alzheimer’s, dementia, and other physically slower deteriorating diseases are very common and it’s purely the greed of aging care industries that these people be kept alive and spoon fed at all costs so they can continue paying $9-15k a month for care. Sorry for the rant I’m just so over it and it’s more cruel when you know your family member in their “right mind” was the person who always said “I don’t want to end up like that/ please just kill me if I’m ever like that, etc”.

I totally agree. Medical greed is bankrupting our country and extending lives in truly miserable ways. We need to majorly rethink all of this as a society.

You can always refuse food or medical care. It is not greed.

If you have Alzheimer's and are not competent to refuse, then no, you can't. And any caregiver that tried to refuse food or medical care on behalf of their elderly parent with Alzheimer's or dementia would be prevented from doing so, even with a medical power of attorney.

Yes they can refuse and often do. At that stage you are best getting legal guardianship and then you have full rights to refuse for them. You can do it on a poa depending on the nursing home.

[Anonymous]

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Anonymous wrote:The elderly person is NOT a toddler. They are an old person in the process of losing their independence because their minds and bodies are getting old and not working the way that they used to. They stay at home because that is what feels familiar and safe to them. The idea of moving into a strange "old folks home" is scary and foreign to them - it also involves giving into the idea that things are, in fact, changing for them. So they dig in their heels and are at once dependent on the person/people who help them to stay in their homes while also feeling resentful/guilty/shamed by needing their caregivers. They come off as combative/rude/entitled because they are desperate to stay in their familiar environment.

That doesn't mean that the home in environment is appropriate for them. It doesn't mean that the caregivers aren't put under incredible stress/strain to the detriment of their own health/sanity.

You have to try to step back and look at the situation with an objective eye. For instance, is it reasonable for your parents to expect you to leave your own family/home/work/life to camp out on their couch every night in order to make it possible for them to "live independently" in their own home?

People like you amuse me to no end. You spout psychological platitudes and offer no real solution to real world problems. Real life is a lot messier than you describe, and there’s often a lot of spoons trying to stir the soup, oftentimes worrying about their own inheritance. The people making the toddler comments are addressing the actual behavior they have to work with, not the feels behind the behavior. Understanding the feelings changes nothing.

No. I unfortunately dealt with this in my 20's with one parent and have a parent in their mid 80's now. They have required very different types of help.

One thing that I learned all those years ago was that I can not do this alone. When things get tough they get very, very tough and others can't always drop their lives to help out. I am so very lucky that my living parent decided to downsize and go into a retirement community where the residents have plenty of activities and help with cooking/cleaning/laundry/errands, etc. I can go on vacation without worry. I have no guilt because my parent told me a long time ago that this is what they would want.

I am cognizant of the example that I am setting for my own kids. Only 30 years ago (just yesterday!), I was falling in love with their dad. In 30 more years I will be in my mid 80's, myself. Life flies.

It's so so so good for you that you learned that you can't do it alone and how lucky you are that your living parent chose well. And so mature of you to do the same.

Now tell all these good people who parents are NOT making those decisions how to solve the hell that they are in. If you can't? Stop talking.

I don't have the answers. I can only say that you learn through doing. You learn what your own limits are and learn what you can and can not expect yourself to handle.

The problem is that once the family caregiver reaches their limit, the elderly loved one and often the other relatives are accustomed to the status quo. It’s a much bigger shake up than than if the family caregiver had refused from the start. I admit that part of my resentment toward my sibling is that he never helped out, but a decade later, no one expects anything from him. In contrast, the expect me to figure out a way to make it work because I always have before.

It will always be more than you though. More physically taxing. More emotionally draining. More financially devastating. Take what you thought it would be and imagine that doubling every 30 days.

https://www.latimes.com/opinion/story/2020-02-16/doctor-patients-send-home-to-die

Right. I know that I will not be able to provide eldercare in my home. I also can not provide respite care. I have been clear about that from the get go. Thankfully, that is not expected.

I think that people agree to this out of duty and the goodness of their heart w/o realizing how mentally/physically/financially taxing and just plain overwhelming it can get. And it can go on for years.

You need to be able to lead your life. And you need to know your limits.

You should selfish. You could and choose not to.

Are you my sister-in-law? Sounds like it. I think my brother and SIL thought I would happily provide care in my home for free while preserving their inheritance, while they did nothing to help. Nope. Not happening. I made sure our parent has
a clean, safe, comfortable assisted living facility with activities, medication management, and all meals provided. I visit regularly and help out in other ways. Bro has visited just a few times over a period of several years - and he doesn’t live that far away. If I don’t inherit a dime, that’s ok. My sanity is more valuable than any amount of money.

Sounds like money is important. If you do nothing why go on rants?

Not the PP but I'm beginning to see you for the narcissist you are.

I think it’s a,axing how when someone disagrees it then goes to name calling. You are ranting and not willing to provide care so no reason to comment as you are not helpful or supportive and have no clue what it is like.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Only child here doing elder care for 1 parent. I wish we could be as kind to sick/ aging humans as we are to dogs. Some need to be put down but dont qualify for the very narrow right to die criteria (6 months to live and of sound mind). Alzheimer’s, dementia, and other physically slower deteriorating diseases are very common and it’s purely the greed of aging care industries that these people be kept alive and spoon fed at all costs so they can continue paying $9-15k a month for care. Sorry for the rant I’m just so over it and it’s more cruel when you know your family member in their “right mind” was the person who always said “I don’t want to end up like that/ please just kill me if I’m ever like that, etc”.

I totally agree. Medical greed is bankrupting our country and extending lives in truly miserable ways. We need to majorly rethink all of this as a society.

You can always refuse food or medical care. It is not greed.

If you have Alzheimer's and are not competent to refuse, then no, you can't. And any caregiver that tried to refuse food or medical care on behalf of their elderly parent with Alzheimer's or dementia would be prevented from doing so, even with a medical power of attorney.

Yes they can refuse and often do. At that stage you are best getting legal guardianship and then you have full rights to refuse for them. You can do it on a poa depending on the nursing home.

I 100% do not believe medical personnel will stop food or water without a terminal diagnosis of some kind unless the person in question had very clearly documented their wishes while they were competent.

Refusal of medical care, to say, treat cancer or undergo invasive diagnostic tests I can see, but it's no huge secret that America's doctors are pro-treatment until the very end. I don't necessarily think it's greed. It's a mindset that giving up is failure.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Only child here doing elder care for 1 parent. I wish we could be as kind to sick/ aging humans as we are to dogs. Some need to be put down but dont qualify for the very narrow right to die criteria (6 months to live and of sound mind). Alzheimer’s, dementia, and other physically slower deteriorating diseases are very common and it’s purely the greed of aging care industries that these people be kept alive and spoon fed at all costs so they can continue paying $9-15k a month for care. Sorry for the rant I’m just so over it and it’s more cruel when you know your family member in their “right mind” was the person who always said “I don’t want to end up like that/ please just kill me if I’m ever like that, etc”.

I totally agree. Medical greed is bankrupting our country and extending lives in truly miserable ways. We need to majorly rethink all of this as a society.

You can always refuse food or medical care. It is not greed.

If you have Alzheimer's and are not competent to refuse, then no, you can't. And any caregiver that tried to refuse food or medical care on behalf of their elderly parent with Alzheimer's or dementia would be prevented from doing so, even with a medical power of attorney.

Yes they can refuse and often do. At that stage you are best getting legal guardianship and then you have full rights to refuse for them. You can do it on a poa depending on the nursing home.

I 100% do not believe medical personnel will stop food or water without a terminal diagnosis of some kind unless the person in question had very clearly documented their wishes while they were competent.

Refusal of medical care, to say, treat cancer or undergo invasive diagnostic tests I can see, but it's no huge secret that America's doctors are pro-treatment until the very end. I don't necessarily think it's greed. It's a mindset that giving up is failure.

The nursing home refused anything but purées at one point and would not give options if food was not ok. Believe what you want. The last week they refused everything. We basically lived there to get water and we brought in food. They refused treatment not us and refused outside doctors and hospitals. The joy of Medicaid. They’d lose the bed money for a hospital stay.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mom is caring for my grandma right now. It’s tough. My grandma refuses to hire 24/7 care, so my mom is her slave. I don’t know how much more my mom can take. My grandma is so selfish.

We have 24-7 in home care for my parents. It costs 15k a month. She may not be able to afford it

If she can’t afford expensive in home care then she needs to opt for an affordable center. If she really has no financial means other than SS and Medicare, the bill will be covered out of that at a decent facility. It’s unfair to destroy her daughter to have the experience she can’t afford.

Not to nitpick but to educate: SS and Medicaid will pay for your stay at a long term care facility, though much more difficult to find a bed at and will not be nearly as nice as a private pay facility.
Medicare you get at 65 (a few other ways but for this purpose it’s 65) and is there for hospital stays, subacute rehab up to a certain point, but is not the payer a nursing bed.
Medicaid has to be applied for, and be prepared for the nursing facility to take all of your SS and give you between $40-60/month depending on your SS benefits.

NP - I'm caught in the position that we can't depend on SS/Medicaid because dad doesn't want to lose his house because Mom's health is better than his and suspects will outlive him by many years. They have a couple cars (worth very little, but still more than 1 car). He has less than $75K left in his retirement plan (could be significantly less, I can't remember). So, they can't afford care, they don't want to lose the little they have, so our family is helping as much as possible. We're not at the point it's tearing us apart yet, but I can see it headed there soon since daughters (and their spouses) seem to "care the most", sons (and their wives) are less involved and one sibling is out of town. This is all so new to me, I'm so thankful for threads like this to educate me, give ideas, and let me know what we're in for. I have nothing to offer, but prayers for you OP and other posters.

PP here.
Medicaid can kick in for one spouse and not the other, and they are not going to kick one out of the house (why would they want 2 on Medicaid when they could only pay for one, ie) and there are all sorts of rules regarding assets and splitting with one healthy spouse.
I would start looking into that now (as I recommend for everyone) so you are armed with correct information when the time inevitably comes.

That’s why I pop into these threads to mention this, education and information is crucial.

As I recall, the well spouse can have the house, a car, and up to $96K in assets while the ill spouse gets long term care covered by Medicaid. That was my my uncle bought an expensive new car when my aunt went into memory care (after years of being jealous of those women in the TV who were trying to steal her husband). When he died--healthy--in an auto accident those assets were attached to recoup Medicaid dollars spent on my aunt. His kids found it a rude surprise but I expected it--it was probably in the late 80s or early 90s when they passed laws so that the well spouse wouldn't have to become destitute or the couple have to divorce for the ill spouse to get care.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mom is caring for my grandma right now. It’s tough. My grandma refuses to hire 24/7 care, so my mom is her slave. I don’t know how much more my mom can take. My grandma is so selfish.

We have 24-7 in home care for my parents. It costs 15k a month. She may not be able to afford it

If she can’t afford expensive in home care then she needs to opt for an affordable center. If she really has no financial means other than SS and Medicare, the bill will be covered out of that at a decent facility. It’s unfair to destroy her daughter to have the experience she can’t afford.

Not to nitpick but to educate: SS and Medicaid will pay for your stay at a long term care facility, though much more difficult to find a bed at and will not be nearly as nice as a private pay facility.
Medicare you get at 65 (a few other ways but for this purpose it’s 65) and is there for hospital stays, subacute rehab up to a certain point, but is not the payer a nursing bed.
Medicaid has to be applied for, and be prepared for the nursing facility to take all of your SS and give you between $40-60/month depending on your SS benefits.

NP - I'm caught in the position that we can't depend on SS/Medicaid because dad doesn't want to lose his house because Mom's health is better than his and suspects will outlive him by many years. They have a couple cars (worth very little, but still more than 1 car). He has less than $75K left in his retirement plan (could be significantly less, I can't remember). So, they can't afford care, they don't want to lose the little they have, so our family is helping as much as possible. We're not at the point it's tearing us apart yet, but I can see it headed there soon since daughters (and their spouses) seem to "care the most", sons (and their wives) are less involved and one sibling is out of town. This is all so new to me, I'm so thankful for threads like this to educate me, give ideas, and let me know what we're in for. I have nothing to offer, but prayers for you OP and other posters.

PP here.
Medicaid can kick in for one spouse and not the other, and they are not going to kick one out of the house (why would they want 2 on Medicaid when they could only pay for one, ie) and there are all sorts of rules regarding assets and splitting with one healthy spouse.
I would start looking into that now (as I recommend for everyone) so you are armed with correct information when the time inevitably comes.

That’s why I pop into these threads to mention this, education and information is crucial.

As I recall, the well spouse can have the house, a car, and up to $96K in assets while the ill spouse gets long term care covered by Medicaid. That was my my uncle bought an expensive new car when my aunt went into memory care (after years of being jealous of those women in the TV who were trying to steal her husband). When he died--healthy--in an auto accident those assets were attached to recoup Medicaid dollars spent on my aunt. His kids found it a rude surprise but I expected it--it was probably in the late 80s or early 90s when they passed laws so that the well spouse wouldn't have to become destitute or the couple have to divorce for the ill spouse to get care.

Clarification: the new car (not rolls royce or even cadillac, I think it was a Buick or Olds but a nice car) brought the remaining assets down to the 96k max, the car itself was exempt from the asset limit.

[Anonymous]

Anonymous wrote:We’ve already had rifts between one sibling and the rest. I predict a rift between “the kids” and at least one adult grandchild.

Just imploring those of you still sound of kind and body to make considerate and effective plans for your future. It is cruel for you to insist on aging at home if you can’t afford hired help. I know you think that your children will joyfully care for you, but you can’t predict what life will throw their way. I have reached the point where I can care for myself, my ill spouse, and my minor child OR I can make my dad’s dream of living on his own come true. He is a drowning man pulling me under. It looks horrible for me to step back, but I never agreed to do this. It was foisted on me mid-crisis and I am boeing honest that I’m in crisis now. Please, please do not do this to your children and grandchildren. I’m sure a bunch of the usual posters will chime in that they wish their mom or dad was still alive so they could do 40 hours of eldercare a week while also working full time, trying to help a spouse through cancer treatments, and raise a child. Fine. Can you take my place?

Truth! You are not alone. Elder care has destroyed the relationship between all my siblings and I've seen it in other families too. One or two siblings bear the brunt of the eldercare and it turns to hate. Do not even mention dividing an estate fairly.

[Anonymous]

Many of the stories here are of poor and irresponsible financial management by people, rather than of elder Care.