my father has parkinson’s w/LB dementia & REM sleep disorder, macrocytic anemia, severe osteoarthritis, etc, etc.
my mother has CVD (history of heart attacks, calcified aorta, prolapsed valve, persistent afib, persistent PE, etc.), COPD, severe osteoporosis, MGUS, mixed dementia, etc, etc.
both have long-covid.
i started PT caregiving in 2014. i started FT caregiving in 2021, & am soon marking the third year (1,095 days).
in this time, my parents have had 24 ER runs, 13 hospitalizations, 10 rehab stays, & dozens of urgent care visits, plus at least a dozen in-home rehab rotations, & at least a dozen at-home rounds of antibiotics. they have dozens of doctors between them, all who require in-office visits to “comply” w state script renewals & insurance demands (what this means, idk).
my parents income falls just outside the financial range (a few hundred dollars) to qualify for medicaid, but isn't enough to cover in-home help. we’re “lost in a gap.” i didn’t know this was possible before choosing to spend down their savings in an attempt to qualify them for medicaid, so i could place them in a facility. as a consequence, they’re now out of money, & i'm their default eldercare plan.
in addition to the repercussions of spending down their money, not qualifying for medicaid, & still being alive w intensely expensive medical needs, we live in a filial law state. so, i'm now also financially responsible for them.
adding insult to injury--making this situation more gross--from childhood, my mother drilled it into me that my sole life purpose was to be their caregiver when they were old. i've given up everything to “obey” this irrational demand & their selfish expectations, which is to be together at home, despite it truly being too much for me to handle.
no one asked if i could do this or if i would. i am an unwilling, resentful slave.
i don’t have the energy anymore to beg for deserved & due services from my parents unsympathetic doctors or their reprobate medicare advantage plans (garbage plans they were conned into buying before i came on the scene). i’m versed in america’s penchant for institutionalized "benign neglect", which comes in the form of “delay, deny, wait until they die” business practices, from both the medical field & health insurance companies.
daily i wish they would die. just die in their sleep, so i can be free. chances are they’ll live forever.
i’ve given up or lost everything: my mental health; my physical health; my emotional stability; my financial security; my social outlets. i’ve become a lonely, angry & bitter old woman. i don’t recognize myself anymore, & my life before this… seems like a fantastical fiction story.
i’m well aware that +40% of dementia caregivers die before the people for whom they give care. that’s a stat for one-on-one care. having two parents w dementia (& myriad complex healthcare issues), i anticipate them outliving me, & frankly… i don’t care. whether they die or i die, i don’t care… just so long as this ends.
my own PCP recently dx me w stress-related cardiomyopathy & stress-related kidney injury. my BP is uncontrollable, even w meds, & my weight has skyrocketed since starting eldercare FT. my adrenal glands are shot. so, i’m on my way to becoming one w that +40% caregiver death stat.
i will never recover from this. what they’ve done to me, what the state’s done to me by codifying “filal law.” i'll never recover & don’t really suppose anyone truly cares but me.
i’m sick of words like: anhedonia, alexithyma, anosognosia, confabulation, capgras, cricketing, diogenes, dyschronometria, encephalopathy,
facitious disorder, garrulity, hypomimia, othello syndrome, punding, serotonin syndrome, sleep drunk/confusional arousal, showtiming, sundowning, etc, & the extra demands they bring.
while lurking in past, this site offered some answers & some comfort. idk how i’ll survive another year of eldercare, but thought it might help to finally formally join.
thanks for reading.
These are NOT normal situations. You are not going to get your parents into a situation where they owe money to a nursing home and can't pay it! In addition, you don't have the assets/income to do so. The cases DO NOT involve children not routinely paying for their parent's support; they involve the failure of the parents to keep a financial commitment.
As others have explained (I am not an expert in this area), there are ways to become eligible for Medicaid other than spending down your assets. Additionally—and again, I am not familiar with this point—it sounds as if the application was for in-home Medicaid, not Medicaid to cover long-term care. From what others with more knowledge have written, your parents may qualify for Medicaid for long-term care. Since you are ready and willing to have your parents go into long-term care, if you applied only for them to receive in-home Medicaid, you need to determine if it makes sense to reapply for Medicaid for long-term care.
Hope this helps!
I am in a very good Medicare Advantage plan through United/AARP. I chose the PPO, which has reasonable o-pays, do that I would have a choice of doctors in the plan without a referral, and for a slightly greater co-pay, an out-of-network provider. There is no co-pay for the primary care provider. The related HMO required a referral and that you use only in-network doctors, for which there is no co-pay for visits. I have considered joining the HMO because the physician group is very good.
If you are looking for extensive in-home care or long-term-care coverage, that normally requires long-term care insurance, which it's too late to purchase now. I believe if your parents were eligible for Medicaid, there might be some limited in-home care, as well, but I am not at all expert on that topic!
A. Fear of Filial laws.
Nup. I don't buy it.
A. Fear. Yes. But of what?
I’d suggest that you do some more investigation before letting your life continue to be ruined by assuming that you will have to pay for all this and you can’t afford care. It’s not one for an inexperienced lawyer, who will start with the same websites. You could approach your local Politician, who in turn might check with the relevant civil law section of your state government.
As a last resort, I’d think about personal bankruptcy. If you have little yourself in the way of assets, going bankrupt would definitely mean that you aren’t going to get sued!
Ignore the hen pecking and please come back and vent all you need, you are in a really tough place and there are people here that hear your desperate plea for this to end. I pray that you do not become a statistic and have a good life after caregiving.
I vouch for everyone that what they say is truth, about the law, you are talking about never being used.
There is no place you could go that could give you better information. I guarantee if they ever heard of this happening they would tell you!
You are beyond burnt out, burn out causes PTSD, you can't possibly be thinking correctly, are you sleeping, eating. All that can effect your logical thinking.
I don't say this to hurt you , I say this because I care. This is the last I will say, and my last effort to help you.
Again, listen to my friends!!
Best of luck
What you need to do is see an Elder Lawyer. Have your parents assets split. He can help u get them on Medicaid.I can't believe that two people with their health problems cannot be placed on Medicaid. The next time they are in the hospital, even better Rehab, tell the SW you need them evaluated for 24/7 care. If its needed, tell the SW they need to be transferred to LTC because you can no longer physically care for them. Then, the NH takes over their care. No more trips to the doctors. There should be one or more associated with the NH.
This is enrollment time for Health insurance. You may want to get your parents back on Medicare with a supplimental. Call your Office of Aging and ask if they can help you choose the correct policy for Mom and Dad.
You're free to insist on filial laws being valid and all that chit, but if this were me in such a spot, so obsessed and worried about such laws, wanting to die to get out of this mess, I'd MOVE to a non filial state. Or hire a real CELA and set up a trust for the overage in funds, and get the parents placed immediately.
But you are just looking to argue these points you're fixated with. So good luck to you. Come back to the forum when you actually WANT a solution to your problems.
Anyway, I'm sorry, I had a feeling we were not going to be able to convince you otherwise so I don't know how much more we can help. I really do wish you peace and wellness.
Or, is this you just living the life you say your mom planned for you? Because you are in the drivers seat with that and no matter how it looks now, you DO NOT have to prop up her desire to remain in their home together.
There are lots of laws that are on the books that can be enforced at any time, maybe you could move away and leave no forwarding address. That would take away the threat of you, who obviously, can not afford to pay for their care, being prosecuted or dunned for their care bills.
Oh by the way, PA medicaid allows you to reduce their income by subtracting their large medical bills.
I would encourage you to try and get them back onto regular medicare with a good supplemental, it was far less expensive to go that route with my dad and it meant he was getting better medical care because he didn't have expensive copays and deductibles.
Truly an abnormal situation. his mother was also around 60 years old and had two broken legs from an auto accident. So not at all the same as anything else on this website.
It sounds like she moved to Greece to avoid paying her bill.
also, in that bill “There are certain exceptions to the law. A family member will not be held financially responsible if s/he does not have sufficient financial ability to support the indigent person”
I’m going outside on this beautiful day to ride my bike.
It will take supreme courage for you to stop racing your parents to the grave but I hope you do.
After reading your answers I think you may have bought into this big conspiracy theory that we are all going to be paying for our parents care because of old filial laws.
You site "your parents attorney" out there with dire warnings.
To me this is entirely nonsense. But then I create hurricane's so what do I know.
While you may see some cases of a very wealthy child being held to pay for very poor parents, and that being one out of thousands and thousands...well, perhaps you can find us and post us but not happening to YOU. And guess what; it has NEVER happened to anyone posting on AC either.
I would stop your obsession and worry about filial law. Unless you are enormously wealthy this is not a concern.
Having read your responses to us I find that I can no longer take very seriously your post to us. You seem obsessed by one subject that isn't very real. I think I can probably be of very little help to you. I wish you well with others.
Please use these attorneys who are ranting on about filial law (tell them to relax because it will be good business for them) to write you a good care contract for caring for your parents and to write a Miller Trust for you so they can be placed.
You AND your parents will be long gone before children in this country are forced to pay for their parents in nursing homes. When one of us IS asked to pay you can, instead of lurking on site (your words) come back and say "told you so."
You think masks and guns are a problem? Trying telling young George he is going to be paying for Irma and Fred's care in the nursing home! Yikes! I am afraid we would bring out the pitchforks over THAT one.
I have seen these Filial Law rants here one too many times. They are nonsense conspiracy theories.
All, of course, I M H O.
Good news is if parent's income is too much to qualify then you need to see an elder law attorney for a QIT or Miller Trust. People can be "asset poor; income rich"; there are ways around that. Igloo is best source to PM here, and if you're lurking you've seen her oten. You'll find her post yesterday to someone inquiring about QITs (to access go up to timeline which is blue and says AgingCare on the left. Go to the search (magnifying glass) press. Type in "Q.I.T." and Igloos answers about Miller Trust. Research Miller Trust and QIT trusts online.
Bad news is that this income for these two will go to their care if/when you choose placement.
#2.
Filial law is NEVER invoked.
Take it off your worry list.
I think in the last two decades across our nation there has been ONE and ONLY ONE instance of it being invoked, and in this case parents were very poor and son exceptionally rich. Let go of filial law.
#3.
Your parents could "drill" anything" into your childish head; fact is that you are now an adult, and your choices are your own responsibility.
You are throwing your life on the burning funeral pyre of your parents, and it is a slow burn.
Many choose to do this. You're not alone. But you cannot both knowledgably do something bad for yourself and still claim that your parents or "the system" has broken and martyred you. They haven't.
#4.
You're very smart and capable. That's clear from all you wrote us witnessing your words here and your descriptions of the care you have given.
You've told us your doctors told you that you now have SERIOUS heart disease due to the stress of your daily life.
I cannot imagine that anyone could/would do what you are doing/have done over three years without ending broken. And broken seems to be where you are now.
Your problems are enormous, but they're not insurmountable if you WANT change. You will need a good therapist (not one of those online go-tos paid 30.00 a session and overpaid at that).
Perhaps think in terms of licensed social worker in private practice as counselor as they are well versed in options, in contacts, in life transitions work.
See also an elder law attorney about financing care for your parents.
I'll ask you now a difficult question:
You've told us you have cardiomyopathy.
Let us say you succumb to this tomorrow. You are now dead and gone.
What do you suppose would happen to your parents?
I think you will conclude that life would go on for them. They would be moved into care by the guardianship of the state. They may die earlier than in your care, but you already wish them to be dead, so that's not awful. They have little left on the upside.
What I mean in asking you that question is that you are expendible.
We all are.
I may not sound it, but I am truly sorry for what all you are going through. But this didn't happen overnight. It was built much as though a set of lego blocks were poured out onto the floor three years ago, and over time you built of them a home, designed by yourself that you find, looking at the finished product, you loathe.
Smash it and start again, or come to the conclusion this is self-limiting.
You wish for your parents deaths daily. I'll will be honest with you that you're not alone in that. Many are very relieved when their parents die, when they have no longer to stand witness to their losses and ills and when they are not themselves beset by their 24/7 needs.
I said some hard things here--they are my humble opinion. Nothing more. If they don't help you at all, kick them to the curb.
I wish instead of landing this heaping plate on us now you had piecemeal fed us your problems starting three years ago. I was here then. So were many others. If you've been lurking then you know that.
I wish you the best of luck. This is in your hands, and in no one else's. I hope if I did nothing else I relieved you of worrying about that silly filial law thing. Look up the cases in your state. Betcha you can't find ONE.
Please take care of yourself
i'll respond only re: fililal law for the moment. per my parents atty, pennsylvania is a "test stage" for future codification and enforcement in the nation. we're the first state in which the law is now code and is being enforced en masse.
for further information re: this "test stage"
https://www.paelderlaw.net/pennsylvanias-filial-support-law-children-can-be-held-responsible-for-parents-unpaid-nursing-home-bill/
https://www.rkglaw.com/pennsylvanias-filial-support-law-what-is-it/
https://mcclaw.com/pennsylvania-filial-support-law/
https://attorney.elderlawanswers.com/filial-responsibility-rule-means-son-not-father-must-pay-pennsylvania-elder-law-firms-bill-for-negotiating-penalty-reduction-18368#:~:text=A%20Pennsylvania%20trial%20court%20rules%20that%20the%20son,nursing%20home%20under%20the%20state%E2%80%99s%20filial%20responsibility%20doctrine.
and, this is the case that set the ball rolling for the law to receive attn:
"Son Liable for Mom's $93,000 Nursing Home Bill"
https://www.elderlawanswers.com/son-liable-for-moms-93000-nursing-home-bill-under-filial-responsibility-law-9873
per my parents atty, people in other states don't know what's coming for them. the aging population that will fall in the gap (a sweet spot teased out by very capable actuaries reviewing population information and state treasury information) will grow, and nursing homes that won this "test stage" in PA are on the move to other filial law states with the same. with 12 or 14 states left, this will--in time--be just enough "precedent setting" law to move filial law onto the national stage. politics aside, as long as "corporations are people" and there remains no regulation, a lot of people are "in for it" as boomers age. we'll be solidly in the mire for genX... but--more importantly--for millennials who, in number, look quite like boomers.
in short, pennsylvania is a "test stage" for a new kind of money grab on the part of corporations running nursing facilities.
Let's take a minute and consider everything you've written here. Even if you are in a 'filial law' state that does not mean you are qualified to take care of people in such a condition. Make sure you always use this as your reasoning. Now if you're the person in charge of them legally, you can put them both in a nursing home.
Trying to save their assets and not spend them down on care for them is not worth the sacrifice you're making which will probably end in the ultimate sacrifice - you passing before them.
No home or inheritance is worth your life. No amount of money is worth it.
How about if you reach out to Medicaid and talk to someone? Sometimes Medcaid makes certain exceptions. Sometimes a family caregiver is allowed to remain in the home if selling that home to 'spend-down' the asset will displace them and cause a hardship. You won't know unless you communicate with with a Medicaid employee directly. Or retain an elder law attorney to help you.
Wishing your parents dead is not going to help your situation. Taking some action towards getting them placed will.
Scampie in the comments pretty much gave you a blueprint on how to get your parents out of your care and to get yourself the mental health care you need. You will not be held responsible in any state if a psychiatrist says your mental state does not permit you doing round-the-clock caregiving for two invalids anymore. You may also qualify for SSD/SSI disability because of your mental state. The mental health facility you go to or even if you check yourself into the regular hospital for a psych evaluation, their social workers can put you in touch with vital services you need. Like housing assistance, food stamps, Medicaid, etc...
I was an in-home caregiver for 25 years as employment and an unwilling, unpaid careslave to my abusive mother for several years. I'm speaking from experience when I tell you that when a person is on duty 24/7-365 with no help and no respite, especially when you're a dementia caregiver, it will create the perfect conditions for abuse. A worn out caregiver at the end of their rope can be a dangerous.
Please take some action to help yourself. You have to come first in your life before your parents. Good luck.
https://www.elderlawanswers.com/son-liable-for-moms-93000-nursing-home-bill-under-filial-responsibility-law-9873
https://www.elderlawanswers.com/son-liable-for-moms-93000-nursing-home-bill-under-filial-responsibility-law-9873
I do have a question for you, I am wondering if either of your parents are Veterans?
If so they may qualify for some help through the VA. And it is possible that the VA will pay you as the caregiver. Please check with your local Veterans assistance Commission and see if they are qualified for any services or benefits.
Have you checked with your local Agency on Aging to determine if they qualify for any help?
And the local Senior Service Center may also have programs that will help.
Last but not least...Hospice. They both may qualify. Hospice will provide you with all the equipment that you need, all the personal supplies. You would have a Nurse come 1 time a week and a CNA that would come 2 times a week. And a Social Worker would be assigned and he or she might have ideas or suggestions to get them both into a facility that would meet their needs.
And one other thing off your plate...once Hospice is involved no more hospitals, no more rehab. Any necessary medications would be ordered by Hospice and the trips to the doctor would be eliminated.
Hospice is not just End Of Life. As long as there is decline that follows Medicare guidelines a person can remain on Hospice.
Apparently you missed that part. But it's not too late to get started on that journey of caring for yourself, as you matter too in this equation.
It can't just be all about your parents like it's been thus far, or you are right....it will be you dying before they do.
And as a former caregiver of my late husband for 24 1/2 years of our 26 year marriage, it breaks my heart that you have sunk to such a low.
I hope you are seeking a good therapist or counselor, along with being on some anti-depressants, to help get you out of this funk, as there is light at the end of tunnel if you'd just look for it, and joy to be found along the way.
And seek out a local caregiver support group as well, as mine literally saved my life while I was caring for my husband.
Your parents now require more help than you can provide and both need to be in a care facility of some sort. And if money is an issue you can apply for Medicaid for them. And then call your local Area Agency on Aging and see how to quickly get them placed.
No where is it written that a child must give up their life for their parents. NO WHERE!!!
So please start taking better care of yourself today. Start with baby steps....sitting outside and enjoying the beautiful fall weather with a good book, or taking a short walk around your neighborhood, or going to church(that certainly can't hurt)or doing some of the little things you used to enjoy but have been kicked to the wayside.
YOU MATTER! AND YOUR LIFE MATTERS! So start acting like it!
God bless you.
Parents will groom their kids to be the garbage dump of all of their problems they don't want to deal with.
You've done all you can for them. They are old people. Now it is time to take your life back. Once you do, don't beat yourself up with guilt for taking care of yourself.
We take care of other people and do it well. Problem is this, who will be there for us when we get sick and down on our luck?. Propping other folks up giving them a false independence will strip you of your independence.
You can have a life, and I believe if you did the right things you can improve your health. You are at the end of your rope, I suspect that you have been there for a long time.
Get your parents in a facility, ASAP, and start taking care of you. It's way past time. We care about you, but you have to care about yourself in order for us to give advice, and for you to take the advice.
Everyday we take time out of are life to throw out a life saver to people, it's up to them to grab the life saver.
I read a book once about a little girl that was born only to be her sisters donor. I can't remember what was wrong with the sister, but these parents had another child just to keep the first daughter alive. And everyone thought it was horrible, which it was, but isn't that exactly why so many of are parents had us, not to have children but to have someone to take care of them. I hear it all the time from mom, "oh they didn't have any kids, Who is going to take care of them" I truly hope this mentally ends someday.
Wishing you the best of luck.
You also may not know that there are different qualifications for community Medicaid, and Nursing Home Medicaid. If you have trouble applying for NH home Medicaid for your father, have a Medicaid caseworker help you, or an attorney. If there is a medical necessity, there will be a way to financially qualify him for your state's LTC Medicaid program. Speak to your father's neurologist. Your father's neurologist will tell you he needs a NH once he reaches a certain stage. My father's neurologist did.
At the end of the day, it is up to YOU to decide what to do. I wish you well.
https://www.paelderlaw.net/pennsylvanias-filial-support-law-children-can-be-held-responsible-for-parents-unpaid-nursing-home-bill/
https://www.rkglaw.com/pennsylvanias-filial-support-law-what-is-it/
https://mcclaw.com/pennsylvania-filial-support-law/
https://attorney.elderlawanswers.com/filial-responsibility-rule-means-son-not-father-must-pay-pennsylvania-elder-law-firms-bill-for-negotiating-penalty-reduction-18368#:~:text=A%20Pennsylvania%20trial%20court%20rules%20that%20the%20son,nursing%20home%20under%20the%20state%E2%80%99s%20filial%20responsibility%20doctrine.