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How long?(3)
Posted: Monday, April 15, 2019 12:19 PM
Joined: 7/2/2014
Posts: 101

I am the caregiver for my dad who is 96, have been doing this for 9 years now. I want this to be over but I don't want my dad gone, does that make sense?
Johns baby girl
Posted: Monday, April 15, 2019 12:32 PM
Joined: 2/26/2019
Posts: 48

Yes, CD, it does.  It is so hard to watch someone you love go through this.  It is also so difficult to lose yourself in the process.  96 years is an amazingly long life.
Posted: Monday, April 15, 2019 2:58 PM
Joined: 10/9/2014
Posts: 591

Yes, it does make sense to me.  We have a family friend who will be 90 years old in a few weeks, who has end stage dementia. She has really gone down hill and no one knows how she is still alive. (Is on Hospice.)  We pray for her to be as comfortable as possible, but, know that that likely means she will go to her next life.  

And, my LO that I care for is also end stage dementia, though, she only in her 60's.  I have the same prayer for her, even though she's much younger.  I often wonder how I will feel once she's gone.  It's quite surreal to consider.  

MN Chickadee
Posted: Monday, April 15, 2019 4:02 PM
Joined: 9/7/2014
Posts: 767

I feel exactly the same way. The grief timeline is so different for family when dementia is involved. You do it little by little over the years and you come to a point where you just want it to be over but you also don't want your LO to be gone. Since I can't change anything I kind of wish it would just be over sometimes. I think it's a normal way to feel. Hang in there.
Posted: Monday, April 15, 2019 4:56 PM
Joined: 10/25/2018
Posts: 238

Absolutely makes sense to me. Once it was obvious my dad had full-blown dementia, my sincerest wish - after wishing this had never happened to him - was that he would have a sudden heart attack or stroke that would end his suffering. It didn’t end up going that way, the last few weeks were incredibly sad.
Posted: Tuesday, April 16, 2019 12:08 AM
Joined: 5/22/2018
Posts: 149

I also feel the same. I'll miss my mom and be sad when she's gone, but her wish since my dad passed several years ago was to be with him. She really wants to go. We try to just keep her comfortable, as happy as we can and content. She's 86 and could still live several more years. I feel guilty for even thinking at times that her wish would come true and her journey would be over, because I know that it's partly for my sake, too. But I know I'm also taking good care of her until that day comes. I've read on here that many other caregivers have felt the same as we do, which makes me feel less guilty.
Posted: Tuesday, April 16, 2019 1:27 AM
Joined: 4/19/2018
Posts: 49

I love my mother very much but I prey that she goes in her sleep before she gets in. The late stages of this horrible disease
Rescue mom
Posted: Tuesday, April 16, 2019 10:26 AM
Joined: 10/12/2018
Posts: 700

Yes, it makes sense. My mother lived to 98, and her last years were dementia miserable no matter what was done for her.  She outived friends and family, was bedridden, incontinent, extreme dementia, etc., in rare moments of lucidity she’d say she wanted to die, or she wished she could just go ahead and die. She was devout Christian and believed good things awaited, and this world was miserable. No matter what anybody did—and she had great care and medical help—she was ready to go on. Sometimes it just seems cruel to make these people stay. But sometimes  they just keep hanging on. It is horrible to watch.
Posted: Tuesday, April 16, 2019 10:50 AM
Joined: 7/2/2014
Posts: 101

I went to a friends mothers layout once, she had dementia when she passed. The daughter told me there are things worse than death, I really understand that now. Thank you everyone for letting me know I am not alone.
Posted: Tuesday, April 16, 2019 1:13 PM
Joined: 1/17/2016
Posts: 880

Oh my gosh,,, 96.  My mom passed a month after her 86th birthday.  I loved her dearly and took care of her for a number of years, but really... do we have to live so darn* long?  I always sent a prayer out hoping she would pass at a reasonable age from a reasonable illness.  Mom was about stage 5+ when she passed and although I miss her, she had a good long life and thankfully didn't make it to those upper stages.  This disease is awful!
Posted: Tuesday, April 16, 2019 7:05 PM
Joined: 7/6/2014
Posts: 1333

I prayed for almost  year for my spouse to be free from his dementia life.  He was alive but not living, no quality of life in any form.  And I do not have any lingering guilt because of it.  He has been gone for 5 months, at peace.  NO ONE SHOULD HAVE TO LINGER LIKE THAT.

Dahlke( Cynthia) 

Posted: Tuesday, April 16, 2019 8:21 PM
Joined: 4/6/2019
Posts: 20

My dad is 91 and I've been sole caregiver for six years. I hope he doesn't linger too much longer. It would be better for him to pass sooner than later. We all just want peace. I agree there are worse things than death.
Katy sue
Posted: Wednesday, April 17, 2019 9:07 AM
Joined: 9/24/2016
Posts: 235

My husband will be 63 this Good Friday, April 19th. He is in a nursing home and is stage 7b, I am told inches away from qualifying for hospice. His quality of life is so low, yet he still knows my face and voice and my touch. I’ve started to tell him when I visit that the kids and I are all ok, and that we have other people who will be there for us and take care of us. I want him to always know that it’s ok if he needs to go. We are ready, but the decision is not ours. I am resigned that there will be no hospitalization if at all feasible, and only comfort care through hospice. I prayed all along that he would go quickly early on from some other condition but that hasn’t happened. He was diagnosed in 2016 at stage 3, so our journey has been fast and i am indeed thankful that it will not be a long one as so many are dealing with. 

So yes, dear, it does make sense. HUGS.

Posted: Wednesday, April 17, 2019 12:11 PM
Joined: 10/24/2018
Posts: 244

Katy sue, you are so very very wise. And so very much too young for this. I am glad for you that DH still knows you. Is it comforting to you? I hope it's good rather than bad. 

My mom, stage 6 it seems but not hardcore yet, is almost 30 years older than your DH, and shows no signs of  physical dying yet. I think, though, that I'll start dropping a word every so often that we all have people to take care of us, and may start again telling her how wonderful she has been for all those who've been in her life. 

Thank you So Much for your post. May your lives continue to be love. 

Posted: Wednesday, April 17, 2019 1:07 PM
Joined: 9/2/2015
Posts: 8

You don't want your dad gone, but in reality, the dad you knew is already gone. I felt guilty wishing my mother would die and be out of her misery, but when she did die, I felt relief... for her first and for me second. While I miss being able to hug her, she wasn't herself and the mom I knew had departed prior to her actual death. She was my best friend, and now I remember all the good times we had. When my mind drifts to her last years, I get sad, so I make myself remember the good times again.
Posted: Wednesday, April 17, 2019 3:35 PM
Joined: 7/10/2017
Posts: 562

C D,

You have stumbled onto what I call "The Unanswerable Question."  Every caregiver gets this question.  It has no answer that is "right" or even "acceptable."  It goes like this:

"Do you want your loved one to die (and stop suffering/free you), or live on (and continue suffering)?  You can't answer "yes" to both parts of the question, since a "yes" answer to one part doesn't allow a "yes" answer to the other part.  It can also be framed so that no matter what you answer, you're a horrible person (either selfish or cruel, depending on which part gets a "yes.")

It's a question better left unasked and unthought about, unless you prepare for a guilt trip.

My answer is to avoid the question altogether and I just say, "I don't want my wife to suffer, and I will take care of her as long as I can."  This has got me through 15 years since symptoms started and almost 7 years as a 24/7 caregiver. It's not the solution for everyone, however.  People do what they can, and there is no guilt in doing the best you can.  Most people come to the end of the rope sooner or later, and placement can allow you to still care for him while allowing a bit of your life back.


Posted: Wednesday, April 17, 2019 6:44 PM
Joined: 7/19/2017
Posts: 28

I can totally relate -- my Mom will be 93 in a few weeks and has been under hospice care continuously for over two years now.  She survived a horrific accident which rendered her totally bedridden and accelerated her dementia to where there is no quality of life -- she is just existing at this point.  Fortunately, she has excellent care, but it's getting harder and harder for me to see her in this condition because I know I can't make her life any better or fix what happened to her.  I also know she would not have wanted to live like this -- before her accident, even at 90, she still had a life and expectations.  I just want her to have peace.
Posted: Wednesday, April 17, 2019 7:58 PM
Joined: 11/6/2017
Posts: 2

I'm reading how long this stuff goes on and I'm now more stressed and depressed than I thought I could get. My goodness, how can you handle it?! Nine years!!! You have every right and pretty much all rights for the end of time to feel the way you do. Ugh!
There's absolutely no way that I will be able to keep my mom in the place she is for nine years. Pretty much, in five years, all the money will be gone. I'll still contribute but I'm disabled as it is. I guess all I can think to do at that point is sell my house and try to get another few years paid for. Of course, that leaves me homeless but whatever. This really isn't going to end well for anyone.
Posted: Wednesday, April 17, 2019 8:15 PM
Joined: 4/6/2019
Posts: 20


Maybe she would qualify for some type of assistance. I think medicaid may be available when her money runs out. There should be an office near you that you can call.

Posted: Wednesday, April 17, 2019 11:39 PM
Joined: 1/11/2018
Posts: 78

Oh yes, it makes perfect sense.  How long?  Too long.

My mom is 98 yo and in end stages.  She lived a good life.  I want this to be over....for both of us.  She is no longer the person she was, that I knew and loved dearly.  She is the person she feared becoming.  She cannot return a hug or smile at my embrace anymore.  She cannot communicate in any way we can understand. 

Who knows how aware she is of her own condition.  My siblings and I will be sad when she is gone, and yet relieved.  Seeing her this way is sad beyond belief and is slowly draining us all physically and emotionally - and we aren't even direct caregivers, she is in a good memory care.  Moving forward in your own life is hard to do, when you are always on edge waiting for that next phone call. 

Posted: Thursday, April 18, 2019 12:11 AM
Joined: 5/22/2018
Posts: 149

 I just want to add that at night when I'm so, so tired after a day at work, and then taking over from the caretaker....I find myslef wishing I had nobody but me to be responsible for again and a good night's sleep. I miss being able to take a vacation and getting up on Saturday and going to do all of the things I used to.

Yes, someday I'll be able to again. But when? Years? When my health is gone too?

I think of these things at night when I'm exhausted. I don't regret being her caregiver, I really don't. I just have these thoughts and then I feel so selfish.

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