The guilt of having this thought on a regular basis is really tearing me apart. Caregiving has been really hard - I'm an only child, single, no kids, with a time-consuming job that I hate but which pays well enough that I can spend money on their care (home health aide, I take over FT when he has his days off) and employers who threatened to fire me in violation of state law when I said I may need some leave time.
I understand what is causing these thoughts, it is the ongoing sad situation I want to end, not my parents lives, but the thought still comes to me often and it's making me feel absolutely terrible. Everytime I try to read about these thoughts in an article, it says that you may "sometimes" have these thoughts. I have them daily and then I feel terrible. Are others in this boat?
My mother also hates her own life, and the dementia that is wasting away her brain.
If you had malice and evil in your heart against them, that would be one thing. This is quite another. You hate the EFFECTS that aging and disease is having on all of your lives.
Let me make a comparison: you say you don't have children. I have 2. I love them dearly, and am so very glad we had them. But, when they were infants, and I was taking care of them plus working a full-time, stressful job, plus commuting, there were moments that I wished I hadn't had them. Vehemently. When you're working on only a few hours of sleep, and you are dealing with a fussy, crying baby - well, it's enough to make anyone tell themselves "my life would be so much easier if I had never had this baby!" It didn't make me a bad mom; I didn't neglect them, I sacrificed myself for the good of them. It wasn't my thoughts that made me bad - I only would have been bad had I followed through with actions.
And caregiving for chronically ill adults is worse in this way: with babies, there is a light at the end of the proverbial tunnel. Every day means one day closer to independence; unless you are raising a child that has some sort of health issues of their own, you know that the caregiving responsibilities will shift, and your kids will become old enough to do for themselves. You will never get to that point with a chronically ill parent. And, unfortunately, when you're dealing with elderly parents, the end of caregiving isn't one filled with glow of a job well done teaching your children independence. The end of caregiving is full of heartbreak and guilt, whether the end comes due to death or placement in a facility.
You are entitled to your thoughts. They don't make you a bad person, an unloving daughter. You are doing a thankless, stressful job that seems like it will never end; a job that always leads to thoughts of "I didn't do that well enough; I should have done that differently; why didn't I do such-and-such sooner", and so on. You are doing the best you can in what is very nearly an impossible situation; please don't beat yourself up over thoughts.
I would encourage you to consider a different solution which would probably require your parents to qualify for Medicaid. But since you have been paying for all their needs I think it would be a wise investment to consult with an elder law attorney to discuss Medicaid qualification for your parents. My MIL is in an excellent facility in LTC and is receiving the same care and attention as private pay residents. She actually has more social engagement than she would in my home (since I too am still working full time). Your parents would get the care they need, closely monitored by you, and you get your life back -- everybody wins.
It may help for you to provide the ages and health condition of your parents, and whether you are their PoAs or not. There is much to learn from the very savvy and experienced forum participants. I wish you peace in your heart as you consider how to improve your situation.
Her best days are long gone! She’s 95! She has end stage Parkinson’s disease and is bed bound in a hospice house
She is ready to be with my dad in the afterlife.
You’re not wrong to feel as you do. Sometimes the patient would welcome death. We only want the suffering to end. No one is wishing anyone dead.
You need time for yourself. I do not want either of my children caring for me in my later years.
I did care for my parents and it is emotionally and physically exhausting!
We are human beings. You are experiencing GRIEF, not guilt, or should be. My brother was diagnosed with probable early Lewy's Dementia. He was well enough to know EXACTLY what was ahead for him, and he and I BOTH were able to talk together about wishing he did not have to take that long slow slide with loss after loss after loss, from dignity, to control, to loss finally of mind and all that makes us who we are.
And the sad truth is that you long for it to be over for YOU as well. It takes over your life until your life is nothing but exhaustion and bearing witness to the indignities visited on those you love, with NO HOPE, and with no end assured.
What you feel is human and normal. We are not SAINTS. If we were someone would have to shoot us full of arrows and send us to heaven where we could spend ETERNITY trying to make everything all right for everyone on earth.
Please understand your human limitations. Mine are so rigid that I would never have attempted what you are attempting to do, so if hell awaits us then I will be there a good deal sooner than you will.
My heart goes out to you completely. PLEASE be gentle with yourself. Accept your humanity. You are doing the best you can.
My parents and I have always been very close - they have been excellent parents to me. They were, however, very stubborn and not at all realistic about their living situation and this almost overwhelming burden is kind of the outcome of it. I tried to talk them into independent-to-assisted living for a good ten years, and they would not budge at all. At this point, he'd probably have to go to a nursing home, she's not really nursing home level and TBH I'm not willing to separate them like that so the assisted living ship has probably sailed. Medicaid is not an option as my dad has a state pension, which precludes medicaid. State pension is of course not enough to pay for the expenses of aging, though.
Their conditions (they are 85) are largely physical. My mom has spinal stenosis and severe arthritis, my dad has a variety of heart/lung problems and really only eats liquids/nutritional supplements now. His mind isn't what it used to be, hers is pretty solid. But I don't think they really have the capability of seeing/understanding how huge this obligation/burden is to me as they have both gone through that stage of aging where you don't so much see other people's issues as you worry about your own. As someone in the responses said, like toddlers. So although we can have reasonable discussions about other things, discussing the issue of how this is becoming too much for me doesn't really get anywhere other than them feeling bad and me feeling frustrated.
First off, thank you for being brave enough to post this. I'm guessing most of us have thought this more than once...it's a terrible thing to care for aging people, and obviously even worse for them. I try to hide my frustation (mostly at the healthcare system) from my elderly parents, but sometimes, frankly, it's them I feel frustrated with. They are the ones going through the pain, sadness, helplessness, loss of freedom, fear, etc. If any of us could be altruistic 24/7, I'm sure we'd stay in a place of deep compassion.
I send you much love and goodwill. An end-of-life doctor I know said recently, "Dying is hardest on the living." Stay the course. It will end eventually.
I always knew dealing with elderly parents would be an emotional morass, I don't think I was prepared for exactly how big and how deep the swamp is...
I used to work in a Memory Care ALF as a front desk receptionist last year. A Catholic deacon would come in every Sunday to pass out communion to those residents who were interested. He & I got talking one day about our mother's, both 92 at the time, both with dementia, both miserable & complainers, living in Memory Care themselves. He told me how he prayed daily for his mother to die. I was surprised to hear him say that at first. He went on to explain that he wanted his mother to finally be at peace, to be out of pain, to stop complaining, and to be with God where life would be good and she would be whole again. He had a broad smile on his face when he spoke those words. Right then & there I knew there was nothing wrong with ME praying for MY mother to also die and finally be at peace herself, after 94 years of chronic complaining & misery.
There you have it.
No need to feel 'terrible' about wishing peace & contentment for your aged parents. There is nothing good at all about advanced old age, for anyone, let's face it.
Not that you have all the leisure time in the world, but consider getting some therapy to help you. This isn't to get you to stop having those thoughts, but instead to hand you some more rope before you've reached the end of yours.
I often find myself wondering how I'll feel once my mother passes away. She's been suffering from seemingly unending health issues as well as dementia since 2014, and while I'm emotionally exhausted, I can't imagine how exhausted she must be. (The one blessing to dementia, though, is she has no idea how unwell she is.)
My greatest problem is making the conscious effort to remember she's my MOTHER, not a generic dementia patient who looks vaguely like the smart, funny mother I once had. Especially during the pandemic lockdown when I couldn't see her in person, I've found myself drifting away from my connection with her, and that upsets me. She's drifted away from our connection, so it's up to me to maintain it no matter what, and it's exhausting.
I lost my dad in 2018. He had no dementia, got sick, and died in six weeks. It was heartbreaking, because I lost one of my best friends. We were talking together the day before he died. I lost my mom about seven years ago, but she's still here physically. It's very hard, because I don't recognize her anymore.
You're not alone in your thoughts. Just don't BE alone with your thoughts. Find someone to help you with the stresses of your daily life.
Dad had been wanting to die for a couple of years and was unhappy - as he needed more assistance the more miserable he was. In January 2019 he went to hospital with CHF plus other heart problems. At that time he decided not to pursue any further active treatment. When he got to SNF he quickly declined and his dementia worsened. I remember one day sitting with him while he was half asleep and trying to get out of his wheelchair. I held his hand and spoke softly to him for about an hour (he was profoundly deaf - but I think deep down he could hear me) and told him over and over to sleep; we would al be ok; it was ok for him to leave. During that time I prayed to God that if it was his will to take dad home. He was in SNF for 4 months and finally just let go and died.
Did I feel guilty about this, sometimes, but I wanted him to go on to a better life and be free of his ills. I do not feel this way towards my mother, she is relatively healthy for her age. I do realize at her age good health is a transient thing and can change in the blink of an eye.
I wish you peace and comfort.
1 - What other resources options are there for caring for your parents?
2 - You may not have other "family" but you should have friends that would be as close as brothers and sisters to help you shoulder this burden. Nobody should do "hard things" alone.
3 - I find strength in my faith in Jesus Christ. I am not suggesting you ditch everything you value, but investigate the strength and peace you can find through connecting with the divine. Maybe pray and ask for His help.
I can sympathize with you on both fronts: employer behaving badly and occasional guilty thoughts.
In my case my employer questioned as to how much time I would need off just days into my mom's cancer diagnosis. I eventually went on FMLA after being told not to and my job was conveniently eliminated months later. It's a lot but please document everything. No one should have to fight their employer and navigate a health crises at the same time.
As far as the guilty thoughts, I've occasionally questioned when is this all going to be over but then my faith quickly steps in.
It's tough, but just do the best you can. You are in my prayers!
They are angry at people who died years ago---yet the anger is as fresh as it was the day it happened.
It's beyond exhausting to deal with either of them--and circumstances (and out and out fights) have put both DH and myself in very distant relationships with them.
My MIL asked me to step out of her life a year ago and I have not seen nor spoken to her since. And I won't. Mother prefers I NOT be one of her CG's so I have to go in when she's not home--and she's pretty much a total recluse now, so I rarely see her.
I do pray that they can go. There is ZERO QOL for either of them. MIL is wearing SIL to a nub. I worry about HER! My mom has 5 living kids and we work it out OK, so she really doesn't do without. She's just wacky and sometimes really mean. You never know who you're going to see.
Dh said we SHOULD be feeling a sense of relief that we are no longer 'in' our mother's lives, but we both do feel sad that it came to this. Didn't have to--it honestly was what they CHOSE for themselves.
They are both 90 almost 91--and will live forever. Well, at least it feels like that.
I don't openly talk about feeling like this. People think I'm horrible.
I now know that there are other options and I have hire someone to take care of her when I go to work. I now know I am not selfish if I don't want to burn out doing everything alone. I too am an only child.
I do not wish her to die but I don't want to ruin my own life either.
Many hugs for you!
I, along with other respondents to your post, have had the same thoughts more than once during my caregiving years. Of course, down deep what we want is for the situation to come to end however that would occur.
Lealonnie relates a story of a pastor praying for his mother to die. If the clergy can pray for the death of their LO, why should we feel badly about wanting our own to find peace, comfort and happiness during and after the dying process.
I stopped wishing for my wife's death once I placed her in MC. I was free, was starting to get my life back and I wasn't so desperate. That's not to say I didn't visit (almost every day) or love her, it's just that the situation had changed and I could manage it. I did pray, however, that the Lord would take her during her last days in a coma. In the end, oddly, I felt relieved knowing that, somehow, we both were at peace.
I hope you, too, will find peace in knowing that you are doing your best.
This bothered me to read. A quick lookup indicates there are some restrictions, but FMLA is a Federal program.
"Covered individuals: Employees are eligible to take FMLA leave if they have worked for their employer for at least 12 months, and have worked for at least 1,250 hours over the 12 months immediately prior to the leave, if there are at least 50 employees working within 75 miles of the employee's worksite."
So, if you've been there at least a year and have worked 24+ hours/week, AND there are at least 50 employees, they can't fire you, esp not for asking. Several others have commented in various threads about taking it more in an "as needed" way, not a full 12 weeks.
"...to care for immediate family members (i.e., spouse, child, or parent) with serious health conditions."
You indicate parents, plural, so TWO people in immediate family...
Then there's that 50+ employee situation:
"Private employers with fewer than 50 employees are not covered by the FMLA, but may be covered by state family and medical leave laws."
There was no indication of which states have this provision, but your post indicates your state does have some law(s) in place.
Quite honestly I probably could have sued my company. A combination of the disability provider lying* to the "company" doctor AND him not taking the time to tell me what they said and ask for my side of it, just "ordering" me back to work, I was NOT given FMLA. The "company" nurse said they were outsourced, so not company employees and can't fire me, but I told her I'm not stupid - if he reports this, they could fire me without me even knowing WHY. I did find it in the disability company notes, but it was of no help at the time.
(*given subsequent dealings with them and hearing about what others dealt with, it is quite possible that this person just didn't read or analyze correctly, but in essence it was the same as lying. In some ways it was worse - incompetence! Later, when I had serious relapse that almost killed me, I was still in the hospital, on TPN feed and industrial strength antibiotics when I received approval letter for disability, but a ridiculous return to work date! They don't talk to your doc. They request office notes, look at the last entry and go with that! Jerks. All to save a freaking nickel, but in the end it cost them much more, as I was out from May to February. I used to sing the praises of the other parts of this company, having dental ins and an annuity with them. Once done with all this, ADIOS!)
Thanks for all this -- unfortunately my business is too small for FMLA. We're well under 50. But my state requires paid family leave even for small businesses, I was first entitled to it in 2019 when dealing with a health crisis for my father, and I was point-blank told to take all my vacation time and if I exercised my leave rights I would "win the battle but would lose the war."
The kicker? This business is a law firm. I'm a lawyer - in an area that is unfortunately totally unuseful in dealing with eldercare/elder law/employment issues, so I have friends who have helped me to get all the eldercare stuff in order.
Spoke to two employment lawyer friends when this blatant illegality was threatened and they said that if I did take leave and was later toss overboard, then they would threaten all sorts of claims and force a settlement agreement.
So I considered it, started to poke around about leaving and going somewhere else. Then COVID happened and it decimated the industry I work in which meant that getting another job that paid enough to help me fund some of my parents expenses was not going to happen (mostly a health care manager I pay because they have so many issues that flare up and need lots of calls to doctors/respiratory rehab clinics/labs to make appointments to come to their house and take tests) and the place I work was also not flush with money so any settlement would have meant they just dragged feet on paying.
So...yeah, law says one thing and life says another. (Which is basically all I have ever learned is true in all my years of law practice).