Feelings after stage 8, no my DW isn't there yet.

ghphotog

I was looking at my DW last night as she fell asleep on the couch while we were watching TV and thinking to myself how heartbreaking it is to see how she's changed as a person with this disease and how far removed she is now from who she used to be. I felt such empathy for her but at the same time glad she doesn't realize or understand the changes. I guess that's the only saving grace about dementia. At least one of us is spared the truly horrible reality.

I remember about 10-12 years ago she was worried about Alz as both her parents had it. Her father died early in life from it. She was scared and I tried to reassure her that she would most likely be OK. Just because her parents had it doesn't mean that she will. I told her if she did end up with Alz that I would be there for her. Fast forward, here we are deep into it and now I'm here for her just as I promised I would be.

The point is after seeing them change and suffer for sooooo long I think when the time comes for stage 8 that both of us would be relieved it's over. Maybe she would look down in her right mind and then understand what the journey was truly like for both of us and would want me to be relieved as well. Either way I don't know how I'll truly feel when we cross that line.

So if you and your loved one have crossed that line and you, as the the survivor, are struggling with how you "should" or how you are "supposed" feel and you don't feel that way. Please please don't feel guilt because you don't feel a "certain" way. Easier said than done I'm sure but just remember you were the hero to them. If they could look down in their right mind you will forever be their hero.

gampiano

Hello,

Thank you for sharing those thoughts. Our 55th anniversary is coming up on the 21st, and i've been so busy with care giving and all the financial stress, that i actually forgot about it. This mornng i received a text from someone who was at our wedding with "Happy 55th" as the heading. Recalling the promises we made to one another, and reading you beautiful passage has been my therapy for today.

Sending gratitude,

Maureen

Ed1937

Thanks for the thread. It is thought provoking. I don't have any regrets about how I handled things, including my call to let her go. I'm comfortable with that. I'm just not comfortable without her, and I'm hoping to be reunited again.

mrahope

Sometimes I think we're never going to make sense of our feelings about losing our LO, because it's hard to tell when we actually have lost them and what it means when they are no longer physically present. In a moment of clarity a few days ago, my DH said, "I'm nothing but trouble. I'm not sure why you want me around." It was so sad. All I could say was, "You are my life's companion. I would be so alone and sad without you.". It was truthful, but I realize I omitted that there would be a sense of relief from the constant interruptions, the anger, the fears for his safety, etc. This experience is like a tide going out. We know that it's going, and can do nothing to modify it's direction, only keep ourselves from getting swept away.

M1

Appreciate this thread too. I have been feeling such weight this week, wondering when it will be over, how will i ever rebuild any life after this ordeal, i sure don't see a path forward. Maybe trying too hard. but wishing nonetheless.

Jeff86

I must admit my mind goes there at times. Watching my DW slowly disappear, before my eyes, has been the agony of my life. And it goes on, and on. I experience grief every day, as I look at my DW in stage 7. How she would hate to see what she has become.

I guess we each experience or will experience stage 8 differently. I’d like to believe it will bring relief, but somehow I suspect it won’t be that simple. When I look at my DW now, it brings an aching tenderness. When she is gone, all that will be left is the finality. The completion of the long act of disappearance. I regard the coming void, the emptiness with dark anticipation.

Battlebuddy

When my husband passed away 6 weeks ago, everyone said it must be a relief. It was. But I kind of got annoyed with people saying it. Geez it’s not just relief I’m feeling right now. I get to feel everything everyone else feels when their husband dies. ( sadness, loneliness etc. )

But having said that, I do think that we start grieving when our loved ones are diagnosed. So we grieve as we go through this journey. A good chunk of grieving is already done. For example , my husband had been gone a long time. So to miss him and wish he was here I have to go back many years for a memory of that.

Bottom line I think we feel a mixed bag of emotions, but hopefully are ahead of the game as far as grieving goes

toolbeltexpert

Wow you all said it so well and I see how different is is for each of us and sometimes so similar. As our lives wain away we wish for the peace for our lo journey to be complete without having to go the hard way down.

What it will be like when my dw is finally gone? I have grieved so much that it is just like it's already over, but it's not! My heart is so heavy, I am trying to see what life looks like post 8 but it's not!

Meeting people is tough, I say I am in " no woman's land" because I am still married but not. It's my take on "no man's land" a place nobody goes but me stuck in time.

Let me tell you today's world of meeting someone has changed soon much. Online dating? Really! Somebody liked me? till you fill in your situation then they ghost you.

People want honesty and they say they want a friend someone to do life with but if that was the case I would already have a companion. No man's land is where Iive! I do understand that women have to live within the morals they setup and the death do us part clause and all the stigma that goes along with "seeing a married man!"

Please don't try to let me know whatever you think about my journey, it's mine I only answer to one, that is God and we have no secrets.

Doing life alone is no Bueno.

I am thankful for all the friends I have that I can talk with and visit but the emptiness of a home with no one to enjoy it is just no fun.

Now I feel so selfish, my dw is stuck in her body somewhere and it's just a 5 minute loop. Slowly wasting away, the start of more falls, the beginning to want to sleep more often still ambulatory but so slow. I pray we don't go the whole road. I see how it looks to go to the end.

Sorry I rambled, I think of you all every morning in my prayers.

Stewart

ghphotog

Stewart, no man's land is where we are. My life continuesly revolves around babysitting a grown person physically but a child mentally. We are in this 24 7 365. I can only speak for myself but I sometimes look forward to her crossing the 8 line but I also know it will be a very confusing time for me and I also will be bombarded with so many different feelings Guilt and remorse for thinking I could have done better, sadness and empathy for her struggles and relief it's all over, then the reality of my own loneliness again. I will enjoy the freedom of being alone for a while but I also know what deep loneliness feels like and expect to feel that way again. Hope I can handle all of it but I still have a long way to go.

Davegrant

This week I came to the realization that my wife is not the same person she was before this disease. This was actually a relief for me because my brain kept telling me the current behavior was related to previous behavior one way or the other. I could not figure it out but couldn't stop trying or blaming her or myself. My DW has anosognosia so I have been using my brain to figure this out. It hasn't worked, hence the relief for me. Hopefully this acceptance will make me a better caregiver or at least a more peaceful person.

Dave

Beachfan

Everyone’s passage into stage 8 is different and unique and deserves respect. Like Battlebuddy, my DH was gone from me long before he passed. By the time he was placed in a MCF, 17 months prior to his death, he no longer knew me, family, or friends. He was content wherever he was, with whoever cared for him; he just “was”. I was released (not relieved) from the burden of 24/7/365 care and able to slowly reclaim some semblance of normal life. His physical passing brought to me a finality that I was expecting, but never fully understood. I am never again able to touch him, feed him, stroke his face, his hair, just sit with him quietly and I miss that. I loved him so.

For me, stage 8 has not been incredibly different. The kids and grandkids are a constant source of pleasure; good books, music, quiet times on the beach, reconnecting with old friends all provide solace. Sometimes, late at night, I watch a video tribute that my daughter-in-law set to music and the tears quietly flow; DH is “whole” again, young, vibrant, we are all happy and complete. We had a great ride; I am eternally grateful for all we had. Blessings to everyone just starting the journey, struggling midstream, or hovering near stage 8- - the sun will shine again.

Just Bill

I'll share my experience with stage 8. I feel like a fish that has been on a stringer for a long time and the fisherman felt sorry for me and cut me loose. There is this huge lake but I am stuck comprehending which way to go. I want to go everywhere at the same time, paralysis by analysis. Yesterday was day one and I spent most of the day reflecting on the past 3 and a half years. I have always done that after an athletic or musical performance, evaluating what I did and how I could have done it better. As a machinist every day is a performance and I have the same ritual when I work as a continuous improvement drill. I think the hardest thing for me was watching her die. Watching her breathing contractions reduce to off was a visual I will never forget. She was struggling to breath and in distress and there was nothing I could do about it. Afterwards I felt I had let her down and felt guilt. I meditated on the scene and I didn't shut off her life force, the disease did it. Nothing could have been done, nature was taking it's course. I wanted to be there so I could keep my promise that the last thing she was going to see before checking out was my ugly face. I kept my promise but I will always carry that harsh visual of nature being nature. I don't feel guilt now but that was my first reaction. As a caregiver it's your job to catch them when they fall. There is going to be one time when they fall and you cannot pick them up. Other than moments of losing my patience and getting angry and saying things I regretted as soon as I said them I have no problems sleeping at night. Could I have done a better job ? Of course. She was my primary focus for 3 and a half years, nothing mattered but taking care of her. I made promises to her and kept all of them and that makes me feel good. If I could offer any advice it would be; behave in the moment the way you want remember behaving in that moment when you reflect on your behavior when it is over. You will remember everything.

Ed1937

"I am never again able to touch him, feed him, stroke his face, his hair, just sit with him quietly and I miss that." That is something I never thought of before she died. But that's exactly how I feel every day now.

Buggsroo

I can relate to this. My husband is still in the hospital, he really doesn’t know me but is happy when. I come. He holds my hand and I am glad I have that. My life is on hold and I guess I just keep putting one foot in front of each other. I am tired a lot, m’y mon went back in hospital but is now out and on the mend, I was laid off from my job, so life ambles on. I have been grieving a lot for my husband and it is weird because he still alive but isn’t.

Grief is often close to the surface, I find I get a lot of joy from flowers, butterflies and big sleepy bumblebees. As I am of English descent I went outside to tell the bees I lost my job and my husband isn’t coming home, weirdly enough it felt good to talk to them.,

ghphotog

Very thoughtful comments by those who have finished this race and those still trying to make it to the finish line. We have nobody to hand the baton off to and no matter how winded we are and slower we become.

We all will be different and we all handle being in "no man's land" differently. Right now I'm in my office at work where I take my wife with me for an hour or two at the most. She is crying about things that make no sense. Asking me if I know where she lives and can I take her "home". She cries all the time and it's heartbreaking. Being a constant emotional support day in and day out trying to reassure here I'm here and it will be all right. I've been trudging along this way for years now and honestly I care deeply for her but I sometimes just wish it was all said and done but we carry on.

ButterflyWings

What everyone here has said. We are 6E/early7 and it is easier yet harder than the prior stages. Easier as DH is more manageable, yet harder on my heart as his body follows his mind in slipping away...while I try to make the best of an unthinkably depressing situation. Simply put, he is not himself any more, on any level, as we know. Such beautiful, heartbreaking expressions each of you have shared here. Your words say what I feel.

I can relate to so much, even the anticipation of what you dear fellow travelers in Stage 8 are feeling. As I sit here next to DH since he cannot be out of arms' reach due to fall risk, it is no life for me yet it is what he needs and deserves. So I am honored to be who I said I would be, to this love of my life. Or rather, to this poor soul who is a mere shadow of the one I married until death do us part. Little did I know that vow should have been "til dementia do us part". Because his disease has surely separated us almost totally, just as it has removed him even from himself.

Bill, I missed your recent news and am so, so, sorry at the loss of your beloved. May she rest in peace and may you be reassured always of how well you did in giving her safe passage on this long and lonely road.

An extra cruelty for DH and my situation is, absentee steps and sibs have decided to make a legal play for guardianship now that they believe the end is near, and apparently think there is something in it for them in terms of assets if they can bypass his DPOA. I have no words for the low life haters that are dragging us (mainly me) through this (DH is oblivious), while billing it to my love's non-existent "estate" (meaning me). The extra weight and stress this places on me at a time when it is hard enough watching my LO disappear slowly but surely, while also managing the physical and emotional heavy-lifting that accompanies late stage dementia... well, it is why I am not posting much lately. But please know that I log in and read when I can, and am with you all in our unique club that I hope and pray will celebrate a cure one day -- at least for those who are coming behind us in the future. And may no one else have to also endure greedy in laws or other relatives when surviving dementia as a spouse or partner caregiver, is enough all by itself.

JeriLynn66

Oh @ButterflyWings , I am so sorry you have this terrible additional burden.. keeping you in my prayers ❤️

ElCy

My DH passed 5 months ago. Though I prayed for his death so his suffering would end, I didn’t realize how hard his passing would be on me. I miss him every second of the day. I also didn’t realize how lost I would be as my role of caregiver was no longer needed. The purpose of my life was suddenly gone and I now have to find one again. Though I went through anticipatory grief while he was alive, mourning is much sharper without him. I am utterly broken.

ghphotog

I'm very sorry EICy.

I think that's exactly how I'll feel someday. Lost for a while. This caregiving becomes your identity after a while. Everyone that knows you associates you as a caregiver to someone and not an individual person. Some people have never known us otherwise. "oh yes I know him, he takes care of is wife with Alz. . . "

ButterflyWings

(((ElCY)))- I can feel your heartache and pray for your strength during this period of transition at the end of a long hard road. My sincere and heartfelt sympathy on the passing of your dear husband. Bless you for all your loving care and dedication to helping him navigate this cruel disease.

As your new purpose is emerging, may you have plenty of grace and healing for your understandable grief. Your forum family is here for you.