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.
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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.
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.
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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.
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
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.
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.
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 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!
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!
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