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.

My sister and I will be relieved. And we will have guilt about being relieved. That's all I will say.
Helpful Answer (4)
Reply to Segoline
golden23 Jan 7, 2019
Rocketjcat -
In response to your comments regarding my post:

“the post it came across as a death wish...”
” I feel this was a callous comment.”

Opinion or judgement?
Potatoe - potahto.

...and I was merely stating my opinion. Which - never in the slightest implied that no one else is allowed to express their differing points of view.

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Reply to Rainmom

IMHO, I've heard that people with dementia don't want to go on. So sad, but who could blame them really? Prayers going out to you.
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Reply to Llamalover47

Since I believe in life after death, I also believe that death is not a 'bad' thing, as most people perceive it to be. When quality of life is non-existent, what is the point of continuing life on Earth? There is none. Death is a transition to another existence, and something I prayed for on a daily basis when my father was dying. I'm getting to that point now with my mother, who's quality of life is going downhill faster than a bowling ball on an ice slick. I do not consider myself 'mean' for wanting a better situation for her......I consider myself loving & compassionate. Hopefully one day soon your husband will realize that death is not an end, but a new beginning that's pain free, where the disabled become whole again and peace is finally achieved.

Sending you a big hug & a prayer for peace.
Helpful Answer (4)
Reply to lealonnie1

I call it pre-mourning the soon-to-be loss of a loved one - my mom was 6 years in NH & I too would think about 'when the time comes' - you have lost you dad's spirit but not his body which will come eventually -

Your sister & you are being realistic about his decline but maybe you should explain this to your hubby in that you are not being callous but have chosen to not be an ostrich with your head in the sand - rather than excluding hubby make him a part of the discussion so he sees that you are just being realistic about your dad's situation
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Reply to moecam

I think I would want your father's life to come to a close purely for your father's sake. What he's living through, if it's stressful and burdensome for all of you, is utter h*ll for him. He no longer enjoys the security or love of those close to him. He doesn't know where he is or what he's supposed to be doing. His world is by turns frustrating and frightening. That's reason enough to want this to end.

Voicing hopes for the future when he isn't there, expressing this in a way that sounds as if you can't wait to see the back of him... It's just sad, and it really isn't like that. Perhaps it's a difficult thing for your husband to grasp. I hope your mother will be able to join you all on family vacations again, too. It's just sad that your father won't be with you then, as indeed he already isn't.

Does your mother have to wait for his passing? Is there no chance of respite breaks for her?
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Reply to Countrymouse

I have to say that this post has stuck with me - bothering me a bit. Not the post itself but the judging done by the OP’s husband and some of the comments here in a few of the replies.

Clearly, I don’t know any of the players involved but it seems to me that if these two sisters - along with their families choose to vacation together it suggests a closeness. I can barely make it through an occasional lunch with my brother.

So, sitting with her sister and her BIL - sister makes this comment. As the OP herself said - she feels much the same way. That the father they knew passed away a long time ago.

It seems to me that the sister felt that she was in a “safe environment”. One in which she felt she could express herself without searching for politically correct wording and worrying about judgement. Oops- guess not. Would it have helped if sister had added “you know what I mean”?

As sister did not add those few words as way of a disclaimer - I assume she didn’t feel the need to.

Without knowing the players involved its impossible for me to know for sure- but - I’m willing to bet that this comment was less about wishing and hoping for her father to die and more about wishing and hoping for her mother to live. To resume a life that allowed the mom to participate more actively in things beyond being a caregiver.

It seems to me, that this comment was about life - not death. And - she felt that the family members she made this comment to would know it, that - that is what she really meant.

Sure. I agree that this sentiment could have been made with better chosen words. But who among us hasn’t blurted something out without pausing to think that others may misinterprete it. Especially among people who one is comfortable with - people who you assume know you and the person that you are? God knows I have.

To me - judgement made about this comment - in this setting and in this situation is akin to judging how a person is processing their grieving of their loved one. And that’s just wrong - in my humble opinion. But that’s just me.
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Reply to Rainmom
kdcm1011 Jan 2, 2019
well said.
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I feel the same and have mentioned to my husband..... This is not the mom I knew, she just stares at us like she is looking right through us. She doesn't remember anything , what did you have for lunch, did you have fun at bingo? She says she hasn't been fed and no on invited her to bingo. (she is in a nursing home). I try to change the subject, because she gets very agitated if I tell her she did eat and go to bingo. Cannot comprehend the fact that she can no longer take care of herself. (in a wheelchair and paralyzed on left side from a stroke)

I agree that it is very challenging and it is almost like we are grieving them while they are still alive. This forum has been a lifesaver, I can now see that others are going through the same thing, and I have let a lot of the guilt go. I wish you the best.
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Reply to Gerip1092

My father was his old sweet self until his last days...he loved to smile, and laugh and hold your hand...I will always remember that about him....but yes he had his "Dementia" moments...where he would ignore us or refuse to eat or talk or get dressed or get up for the bathroom or come to eat. He also had Sundowners, so we were happy to have "Him", before the sun went down. Treasure the good memories....the laughs, the smiles, the silly things...soon enough that will be gone...Sadly. He used to swear at my mother and my sister a lot in those last days...I am glad that I got to spend those last moments with him, even though he could become a changed person...I just sat quietly beside him, holding his hand...until he turned to me and day my husband tried to put him in his wheelchair to which he refuse..and he called him an A-Hole...but then that night he was his old self again, and hugged may sound like your dad's "Dementia" makes him mean or nasty but I bet you he isn't all that....don't let it get you day your sister may regret that comment she made. It will all be over soon, and all you have will be isn't his fault..dementia is a terrible thing...I wish you the best.
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Reply to Chemoangel1967
rocketjcat Jan 1, 2019
I agree chemoangel, those words may come back to sis in the future. This was not said in the context of a deep philosophical family discussion about dads condition and its inevitable end, or how to support mom, the ravages of the disease, etc. In the post it came across as a death wish so mom could go on the normal family vacation. If she had said “I miss Mom and dad going on our vacations with us. I hope she will someday go again.” it would have gotten her message across in a more compassionate way. So I tend to agree with the DH that spoken aloud I feel this was a callous comment. We have had to not participate in our normal family vacations for a few years, but if any of my family had ever spoken those words, I would be mortified and very angry, but that’s just me.
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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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Reply to MountainMoose

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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Reply to Anjolie

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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Reply to golden23
BlackHole Jan 1, 2019
Your last paragraph is beautiful.
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I’m sure that what your sister said wasn’t exactly what she meant. It’s not like she’s waiting with baited breath for your father to pass so your vacation will be more enjoyable if Mom joins you. If he does pass near to the time you go, chances are Mom won’t feel like going along anyway. You may even need to cancel your plans.

I went down the dementia path with my mom. Her life near the end consisted of wild delusions and hallucinations. Always a prude and straight-laced, she talked about nothing but sex. She was paranoid and angry. She never really took it out on me beyond telling me once that she hoped my kids never “did this” to me. But, witnessing her decline was heartbreaking.

To to be brutally honest, when someone has dementia and has no quality of life, death is a blessing and a release to the entire family. If the patient could look at themselves, and what they’ve become, they would be mortified. They would not wish this experience on their loved ones.

Perhaps your husband has had no experience in his own family with dementia. And, if it should ever come up again, your sister might want to explain what she meant, and that was NOT that she hoped Dad would pass so Mom could have a good time.
Helpful Answer (13)
Reply to Ahmijoy
Janice58 Jan 1, 2019
I agree. I wouldn't hold that comment against my sister if she had been the one to say it. We all think things we don't say...she just said it and maybe didn't think a lot before she did. It's hard to know what to say sometimes, really.
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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.
Helpful Answer (25)
Reply to Rainmom

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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Reply to TNtechie
katydid1 Jan 2, 2019
I love your last paragraph! Beautifully put TNtechie!!!
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My mother was within a few short weeks of 95 when she began, with intense determination, refusing to eat.
I had helped her with her supper for her 5 1/2 years of NH life, and for the most part she had been a lusty eater.
Although she had stopped interacting verbally quite some time before, she was still vigorous with gestures, so the food refusal was jarring. One of the social service workers onsite told me that it was probably the result of her active resolve to shut down.
That was a tough aspect of her life to grasp, and I began to feel somewhat panicked that I might lose touch with how to make her comfortable, since she herself seemed to be turning away from her basics.
At that point, a wonderful hospice entered the life that she and I shared. When I would arrive in the afternoon, she’d be cozy, fragrant, and peaceful in her bed, on a gently moving mattress.
This was the period when I briefly agonized about losing her “for keeps”, but then there came knowing that as in their life together, my dad wasn’t far away, and would be coming to take her Home.
And I was then at peace, and he did just as I had assumed he would.
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Reply to AnnReid

My mother was 89 when she passed and couldn’t recognize me or my brother. She was miserable in the NH. All her sisters had died before her. She was belligerent , combative & not cooperative with anyone. She was not my mother in the sense that dementia in the end made her an entirely different person. She always took her meds and followed doctor’s orders as doctors were almost like gods to her.
She had one stroke that affected her mentation in late March of 2013. She developed pressure sores on her heels. Refused to eat (swallowing wasn’t effected).
A few weeks later she suffered a massive stroke which essentially made her unresponsive. She had been on hospice prior to stroke #1.
She passed away 4/23/13 quietly, appeared to be comfortable and with her kids close by.
We were sad (my brother and I) but relieved. It was best she passed on to become healthy again & to be with her family & husband.
Your husband shouldn’t pass judgement unless he walked in your shoes.
IMHO you are not being callous at all.
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Reply to Shane1124

Is there any possibility for your dad to be placed in an outside care facility at least during the day? Or for you and your sister to come up with a way to take care of your father taking turns to give your mom some relief? Can he at the very least stay in a dedicated facility or hire in house help while you go on vacation including your mom, who likely needs it the most?

I think there are always options at least something that can be done to help the entire family deal with the situation. I understand your husband’s reaction...he may also be wondering if that is what you will think about him if/when he is older and sick (joke!) but I believe you should talk to him, explain to him where your sister is coming from. No one, absolutely no one that has not walked in the shoes of a caregiver for someone with dementia or Alzheimer’s knows or understands the wide array of feelings and thoughts a person can have. All legitimate, and not up for judgment.

But I do believe you have reached this point of wishing the situation would change “forever”, because you haven’t found any potential relief for your mom and for all of you. Caring for a loved one with dementia requires the use of all resources possible to survive and keep giving our love to that person who needs us now, more than ever. Good luck finding some options!
Helpful Answer (8)
Reply to Rosses003

Your DH needs to think it through a bit more from his own perspective. Most of us don't want to live on to the point where we need feeding, toileting and don't recognise anyone - does he? Love for the people you love includes knowing when enough is enough.
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Reply to MargaretMcKen

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.
Helpful Answer (18)
Reply to Crafty789

Yes, this is a long slow death. My mom (almost 93) has gone downhill since major surgery 2 years ago. The dementia really kicked in and she’s now in a NH, blind from shingles last year, and in a wheelchair. She knows me and DH, but really doesn’t remember much about her very active & successful life. Sometimes if prompted she’ll recall something/someone and can still give appropriate responses to questions and conversations, is funny and is always singing. She also is very repetitive, anxious when I’m not there, and is sleeping more and more, but still eats 3 meals with help, and drinks fine. She’s actually pretty healthy otherwise, and I don’t know how long she will go on like this. If she had her faculties she probably wouldn’t want to live like this, but she tells me she’s very happy, so what do I know. Yes, vacations have been cancelled, and our lives have been put on hold. It’s sad and not fun. When can I get my life back? But will it be happy? Yes, I feel like I’ve processed the loss of her physical body. I try to think of her as she’s reduced to her “spirit” or her “essence” so to speak, and thankfully I can still find the beauty in it. And I’m trying to use this to learn something about myself, friendship, and grow my empathy and compassion.

There has only been a few occasions where I hoped she would just pass in her sleep. But I can’t say those words out loud. It must have been very shocking for your DH to hear that spoken. I hope your Mom wasn’t in earshot...she might not feel the same way. Yes, she’s down, depressed, worried about her future. But this is the man she once loved, the father of her children, and she may not feel the same way you kids do. Try to be as supportive as you can for her, as she cannot just “move on” and this may go on for years.
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Reply to rocketjcat

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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Reply to worriedinCali
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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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.
Helpful Answer (19)
Reply to JoAnn29

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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Reply to cwillie
JoAnn29 Dec 30, 2018
Why would a minister feel that way.
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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Reply to katiekay

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