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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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".
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.
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.
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.
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?
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
Sending you a big hug & a prayer for peace.
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.
Sheez!