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I’m not necessarily looking for advice, but just wondering if I’m alone or if others have felt the same way. My father (74) really went downhill in the last 5 years with his dementia. He is at the point where he doesn’t know his children and he has moments where he doesn’t know my mom. Most of what he says now doesn’t make any sense. He gets incredibly agitated about things, like when his grandkids are loud or if there’s a mess of toys left on the floor. When he leaves the house, all he talks about is going back home. He’s completely limited my mom in her life, she’s still very healthy and social and she still works, but I’ve noticed that she seems very down lately.


Anyways, my sister and her family and my family have done joint vacations for the last few years and my sister made a comment like, “hopefully dad will pass away soon and then mom can come on our vacation with us next year.” My husband seemed very taken aback by that comment and thought my sister and I were callous in “wishing” my dad would die. However, to us, it’s like he’s already died. There is nothing about him that is the same except every once in a while his sense of humor will come out, but he doesn’t have any concept of his family or of the life he’s lived. It’s taken an incredible toll on my mom and she needs to be able to move on with her life. I would never, ever want to make someone feel like a burden for being alive but I just want my family to be able to move on. It’s difficult to talk to my husband about because he thinks I’m being mean, but honestly, I already feel like I’ve processed the loss of my dad.

Our minister used to visit my mom and pray for her to reach her 100th birthday, one day I finally told him no, no please god, no - by then she was blind, hard of hearing, and as completely dependent as a newborn child. It isn't that we want them gone but that we want the suffering to end, for too many life has no joy or meaning any more.
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JoAnn29 Dec 30, 2018
Why would a minister feel that way.
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Honestly?

I felt relief. Enormous relief.

My mother was 89 and in her final year her dementia- which had hovered around the moderate level for a few years - had ramped up to a more severe level - thanks to a game changing fall.

In that last year, mom had pretty much stopped talking. Wouldn’t? Couldn’t? Who knows? She spent the vast majority of her time sleeping in her lift- recliner. When, on the odd occasion I would find her awake on my visits, more often than not she didn’t recognize me. Months prior to her cessation of talking mom had forgotten how to use her landline telephone- forget about a cellphone- so contact with her circle of nearly life long, close friends had all but disappeared. Worst of all was my mothers wasting away before my eyes. My mom had stopped eating. Her hospice doctor believed that she had forgotten how. Diapers, odd behaviors such as poop smearing, “hiding” her earrings in water bottles - still full of water and “falling” - on purpose, etc. were frequent. My mothers greatest joy - reading, most every memory I have of my mother has an open book in her hand or next to her - that was long gone.

In short - my mother had zero quality of life. What’s more - my mother, the one prior to the ravages of old age and dementia- would have been absolutely, completely and totally horrified by the shell of a person that she had become. I was relieved for her.

But - I won’t lie or be a hypocrite. I was also relieved for myself. For my own family - the ones I had come to neglect - the ones I had zero physical or mental energy for - due to the daily demands of looking after my mothers care - I was relieved for them as well as for myself.

Six years of looking after my mother - the first few including my father - had nearly eaten me alive. Daddy has been gone six years now, my mother a little over two years - and I am still not “myself”. Still struggling to find the person who was - prior to my caregivers hell.

Quite frankly, I shudder to think what would have become of me if my mother hadn’t finally passed when she did. Quite frankly? I don’t think there would have been anyone left.

So, yes - relief.
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My parents both have dementia and I also have the same thoughts that I don't want them to live on and on with dementia. My Dad has had dementia for over 7 years now. My mom 4 plus years.

I love them both and they are in a nice memory care but this is no life.. a shadow of their old life. Its so difficult to see them like this. Sometimes I think what a blessing it would be if they just didn't wake up one night...they would be in a better place. I do feel guilty thinking this way .. and its hard to admit this...but I am so tired of living in this dementia limbo. Their lives have become so small and limited.. as has my life. I know they are suffering and would never want to live on for years like this.

I would like to some day move on from all things dementia and being the responsible one.. I am heading towards my older years myself and would like to try to rebuild my life as best I can.. for however long I have left.

Of course I will still miss them and grieve when they are gone.. and probably will in some way want them to be physically back... but to be honest it will be a relief as well...but I grieve for them everyday .. and they are still here.. I grieve the loss of who they once were. ... and would give anything to get them back, to talk. to them.. even if just for one day.
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Enormous relief here too, Mother passed at age 106 after a lifetime of Borderline Personality Disorder and 6+ years of vascular dementia. She was more than ready to go. Her QOL was minimal the past few years. The stress of caregiving (POA financial and health), even at a distance, has been wearing on me, and the thought of having to do it much longer was getting to be too much. I am 81 and having to adjust ways of looking after myself, never mind another person.

It's not that we wish them dead, so much as we wish this very difficult phase of their lives would be over - for their sake and for ours. We don't love them any less for saying it.
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BlackHole Jan 1, 2019
Your last paragraph is beautiful.
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My Mom was 89 when she passed in 2017. She moved in with me in 2014 when she could no longer live alone. She had signs at least 3 yrs before that. She declined monthly. Her quality of life was gone. Who would want someone to live in their own little world for the rest of their life. Losing memories. Yes, I prayed that God would take her. She lived a good life, laughed and loved. My brothers couldn't even see her this way. She was gone long before her passing.
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I disagree with your husband and I think he should keep his opinion to himself. He doesn’t understand this from the same perspective. It’s easy for him to sit there and say you are being callous. I’m sure if the shoe was on the other foot, he would think differently. My husbands grandfather had dementia, it is really a terrible terrible condition. He had NO quality of the life the last few years he was alive. He stopped eating shortly after his wife died in the summer of 2014. If I recall correctly, he eventually got a feeding tube that year but when his wife died, both were completely bedridden and in a nursing home. From the summer of 2014 till he died in February 2017, he just laid in his bed, barely able to speak. I don’t understand why his children chose to prolong life (I don’t judge them for their decisions, I’m just saying here that I don’t understand their decision to prolong life. He was 93 when he died FYI, so he had lived a long life). No one ever visited him in the nursing home except for on his birthday. Why would anyone want that for their loved one? He didn’t recognize anyone. He couldn’t talk. He laid in a bed, sleeping almost non-stop for the last 2 years of his life. It was pneumonia that finally ended it all. If this had my father or grandfather, I would have prayed to God to take him. I wouldn’t have wanted my loved one to go on living that kind of life!
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jennyfrix Dec 30, 2018
To be frank-I miss dr. kevorkian and i hope that there is a man that can replace him. He helped so many people to take their lives their way. They chose their own lives and deaths, and i applaud them and him. I have a DNR-i am not at all a fan of prolonging life into the insane and bedridden stages of fake life on life support. How cruel that is!! All of the god fearing people think that it is sinful, but i do not. I am a loving person-too loving to think that suffering needlessly is okay -ever.
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It’s perfectly normal, acceptable and expected. When I was seeing a counselor, I brought this very thing up. He told me it’s ok to feel what I feel. Sending peace your way.
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My 85 year old grandfather, with good mental status and in good spirits but dying of congested heart failure, prayed for his own death. Grandpa had great faith, lived his life taking care of family and being kind and mentoring to many others. As a church elder, he spent his retirement years visiting anyone sick or shut-in. His only worry as death approached was that his wife of 65 years would be let behind and he won't be able to make sure she was taken care of as he wished. He extracted promises from children and grandchildren (mine was to take care of my mother, his oldest daughter), signed a DNR and continued enjoying visits with the friends that came each day. God seemed to grant his prayers because he had a sudden acute heart attack one morning and just had enough time to set his coffee down.

I have prayed for the end of suffering for those dying of cancer and those with dementia. The type of suffering may be different, but the pain is the same - only with dementia the pain goes on for years instead of weeks to months.

When walking through the valley of death/pain, it's normal to look toward the hills and plan for the days when you can walk there again. Don't let people who have not shared that walk through the valley judge your need to dream of the hills.
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katydid1 Jan 2, 2019
I love your last paragraph! Beautifully put TNtechie!!!
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I live with my parents, both of whom have dementia. My Mom's is worse. She has very little short term memory and sleeps in her lounge chair nearly all day, shrieking whenever she's startled from sleep. My Dad is the one who reaches out for her the most because he needs her (Dad is now blind and mostly deaf). Mom and I were so close in our younger years, but now it's her needs and demands that get to me the most. I often find myself wishing she'd go to sleep and not wake up. But I've had nightmares about that very scenario. In fact, I woke from a particularly intense one a few mornings ago, feeling disoriented and unsure whether Mom was alive or not.
Like most of us on this forum, I'd give anything to have my "real" mother back. When she does pass away, I'm certain the grief will hit me very, very hard. I do love my Mom; it's this brain disease I'm angry at. I believe Death will release my "real Mom", and my grief will be worse than my worst nightmare. Please don't feel guilty for wishing or praying for your LO's release from the prison of dementia. It's the only way you'll get them "back".
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I felt relief, not just for Mom but for myself. Even Twisted Sisters were relieved. Mom had dementia, diabetes, hydrocephalus, and spinal arthritis to the point she could barely walk.

She would beg me to help her not be sick. She had crocheted almost all her life, and her dementia progressed to where she could only hold the yarn and the needle. Ripped my heart out. I was honest with her that I and her docs and nurses were doing all we could, but there was just no cure and we could only make her as happy and pain-free as we could.

Wishing for a suffering loved ones' death or feeling relief after their death is not something to be ashamed of. It's an honest emotion. We all only want our LO's happiness and to be pain-free.
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