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I’m in the same boat!! I adore my mother!!! I’m all she has and she reminds me daily. But I have no life! My children are angry because I chose to bring her to my home over the fear of her dying alone in a nursing home. My children won’t come around they think caring for my mother is killing me. My health is declining but my choice. My daughter is finally pregnant for the first time at 33 and wants me to share in all the excitement. But she’s mad I can’t leave my home. No one really wants to sit with someone on a Saturday or Sunday, I haven’t been able to attend church in person since! So many say “ just let me know I’ll be glad to help”, then where is everyone when you need it! I get so desperate my counselor is no help, the meds I’ve been prescribed are no help, I pray so and read my Bible so much that the words are becoming meaningless. I don’t want to think God is not listening, but I feel as though my only way out of this misery is to take myself out. There is much more to my story, my sister and her family nearly beat my mom to death, and when I found her she was nearly starved to death and so broken up. Both hips tailbone, arms, crushed feet, ribs, hematoma’s on her head. So I feel blessed I found her, but now 10 months later no funds except her small SS check, to help pay for help while I work a very stressful job, to come home and wash, change diapers feed, bath, and entertain her. I can’t keep this act up. And no where to turn!
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kels31 Apr 2021
Prayers for you, KB.
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Same feelings here in Italy! I often think this hard situation will end only with my death or hers...
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.
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Both my mother and my MIL are angry, bitter women.

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.
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Mannyar Apr 2021
That was a genuinely moving and touching response. I feel exactly as you do, and also have a mean, bitter mother who takes care of a very sick father. It is highly dysfunctional and my sister and I struggle greatly with how to deal with her insanity and temper tantrums, which now occur almost daily. I am exhausted and often feel exactly as you do about them. There are no good solutions to this problem, as a court would still adjudicate my mother as "competent" and allow her to remain "independent", which means mentally unstable yet unwilling to listen to anyone for advice or care. It is an impossible situation that has no real solution at this juncture.
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kels31,

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!
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kels31 Apr 2021
Thanks...already had a convo with an employment lawyer, so if the gameplaying shows up again, I know how to handle.
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Every. Single. Day.
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These thoughts are also because you sound like you are overwhelmed and close to burnout. You've also got to take care of yourself! Don't try to be a superwoman all of the time! Get connected with local social service agencies to find out what their (and your options are). It may be time for them to move to an assisted living facility if they are requiring a higher level of care than you and your one aide can provide. Are they able to have a conversation with you about this? If they can still understand, you may have to be honest with them about what you are capable of doing for them, given your other responsibilities. Their condition is likely to decline over time. You need to prepare now for this. Try to get the burden of the situation off of your shoulders so that the time you spend with them is joyous, loving and quality time.
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I can relate. My caregiver support group recently addressed this and it's known as anticipatory grief. I feel my life is on hold and that I'm holding my breath waiting (and hoping) for my 90 year old Mom with late stage dementia to pass. Then the guilt.
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These are thoughts of one seriously burn out. Stress will make you wish for others to just leave you in peace - even if it means death. Find peace, please, in your situation. Please consider

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.
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Oh my, I have thought the same thing a few times and have felt unbelievable guilt. It must be more common than we think. Perhaps burn out and fatigue. You are not alone. 🙁
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Yes, with my father on hospice. I never was a f/t caregiver. My parents were in AL until dad had to move to SNF because he had to many failings to stay in AL. Mom is still in AL and doing fine - fairly healthy for someone turning 88 in about a week.

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.
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Two months ago I started a thread titled, "Hubby is in the hospital, and I feel relieved, and I feel bad that I don't feel bad that I am relieved." I think many of us have been conflicted.
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I'd be surprised if anyone here didn't have those thoughts. You have your parents' care, plus a lousy job. You have plenty on your plate.

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.
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Please don't feel bad about your thoughts. I had hoped my mom would stay for a long time as alert with her Alzheimer's as she's been for the last few years, but die of something else quickly before the disease got any worse. After reading about what happens in the end, an end that goes on and on, I just don't want that for her. But now, after having covid, she's slipping so quickly and it looks that it will be the complications of end stage Alzheimer's that she'll have to suffer through. It hurts me to see her like this. But then I think maybe she is not suffering as much as I am. Maybe she doesn't even know what is happening. Mostly, I just want her back. I want her to laugh and joke and be sarcastic instead of staring into space. This is just so awful.
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There was the same question asked in 2012, and is still ongoing, with 679 answers to date! Here is a link to the question, "Is It Wrong To Hope Someone Dies?":

https://www.agingcare.com/questions/wrong-to-hope-someone-dies-150121.htm

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.
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Forgotten2 Apr 2021
Thank you for sharing what the Catholic Deacon said regarding death as a release. I remember my grandmother in the hospital, and as a minister prayed over her, I prayed for God to release her. Now, I am at a point where I pray for God to release my mother and me as well, even if it means my own death. It is so helpful to know that others have felt the same and that a man of God understands those feelings. Thank you, I needed that.
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Yes, daily. One "bright side" if there is one, to these kind of thoughts, is that it helps me to be more patient and kind knowing that it will or may soon be over. And that I will miss him and I will be full of ambivalence along with the relief and joy I have for him. I want to be compassionate and minimize regrets of this caregiving leg on the journey of life. We all are old enough to know, things never stay the same, and then you are on to the next season of life. I try to live in today, knowing that God will give me grace for just one day as it comes. Of course I blow it with frustration, but that is what I try and hope to do.
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Oh wow don’t beat yourself down as these are normal feelings...trust that you have plenty of company with you, you just don’t see or know all of the millions like u. This forum is great & I just discovered it. I am taking care of my mom now too but have 2 siblings & we rotate but it’s still so hard. I gave up my job, I live out of town so have to commute almost 1,000 miles back & forth each visit, but if I did not pitch in I just couldn’t live w/myself. Reading another’s response to your problem in that you are grieving & it’s not guilt is right on...trust that things will get better & tomorrow is another day!
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Hi Kels,

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.
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kels31 Apr 2021
Thanks. Of course as much as I daily think what I think, I read your post and thought "BUT I DON'T WANT IT TO END" because of the inevitable loss.

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...
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Thanks all. It helps to hear others deal with this thought on a daily basis..

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.
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Yep, I think that all the time. I've gotten over the guilt part, however. I'm an only child and responsible for my father who is now approaching 100 years old. He is also a person that never liked me very much. My life has been basically on-hold waiting for him to die. Luckily, three years ago I got him to move to assisted living and that took the day-to-day burden away. My husband and I have had plans to move to Florida where we have a home and where my husband's family all live but I've felt like we can leave here until my dad dies. Finally, I've decided that we are selling our big house, moving, and I'll fly back to check on him each month. If I keep waiting for him to die I'll be dead. So, yes, we joke all the time when he doesn't answer the phone that he's either out and about at his assisted living facility or he's dead. Either one is a good thing. So, don't feel terrible. You're just human.
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SeniorStruggles Apr 2021
This is a REALLY good point. I too am waiting for the four remaining relatives to kick the bucket before I pick up my former, much beloved life. Your input is precious to us all. Thank you.
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Why in the world would you not wish a peaceful end to what is an ongoing torment? As an RN I saw families over and over and over wishing for peace for their loved ones as much as the RNs wished for that as well.
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.
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My mom has this very same thought about herself and I don’t blame her one bit.

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!
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You will find many sympathetic "ears" on this forum. Please consider that perhaps you are approaching -- or are now in -- Burnout. You are trying to deal with an impossible load (and expectation). Many on this forum will confirm that it is not sustainable. Did you make a promise to your parents or to yourself that they would never be put in a facility? Your are not morally or ethically liable to carry out this promise, mainly because you literally won't be able to do it. There is a statistic from a study that indicates 20% of caregivers who take care of the needs of others at the expensive of their own die before those they are caring for. This is a very real and very serious thing to ponder. I don't blame you in the least for having the thoughts you have. I manage the care for 4 family LOs above the ages of 85 and I often pray the Lord will allow them to depart peacefully in their sleep sooner rather than later. I don't think this makes me a bad person, and you are not one, either.

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.
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I doubt if there are many caregivers out there that haven't had the same thoughts at one time or another!

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.

(((hugs)))
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SeniorStruggles Apr 2021
When I was a young married 22 year old woman, my firstborn fell asleep. I rushed to finally do some work-work, since he'd been fussy all day. One of our neighbors raced his motorcycle down the street and woke up the baby. I walked into the baby's bedroom, fell to my knees, grabbed the crib railings and shook them as hard as I could, sobbing, begging to go backwards in time because I wasn't ready for motherhood. I TOTALLY get what you're saying here. Now that I have four old people in my life, taking over every waking moment it seems, I think to myself, "I wish I had never moved closer to help you! I wish I hadn't given up my ideal life to come be your slavegirl! I wish I had never reunited with any of you! You don't deserve my help after the ways you treated me...." And more. The guilt is as profound as it is real. I hope reading NotGoodEnough's post and this reply comforts someone. It's a hard task we're doing now. )peace(
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You are not alone, I have had those thoughts myself, the disease is what you are wanting gone it happens to reside inside your loved one. The caregiver is the hardest thing to do and it gets emotionally that you feel you will break. It's good you hired help for your loved one it gives you a break. Just take each moment a breath at a time. Easier said than done I know, I have been brought to uncontrollable tears and shaking something fierce at the same time. My heart goes out to you, find comfort knowing you are perfectly normal and what your thinking is what you feel about that disease not your loved one.
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Every single day.

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.
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Every day.
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