Will My Marriage Just Vanish?
This is just a therapeutic post on my part.
My wife and I were married 30 years ago, and we have lived in the same house the entire time. Our 30th anniversary came and went with no fanfare, as she has not understood any significant dates for over a decade. Dementia has destroyed ten and a half years of our marriage.
As many of you know, I am still working and my wife attends daycare three days a week. I have not retired yet, although I entertain the idea on a regular basis. Perhaps I hold onto the belief that retirement will bring some measure of relief in the working/caregiving juggling act that has worn me out so completely. However, I continue to postpone retirement simply because work still gives me a reason to get up in the morning, and the daycare staff is so good to my wife.
I stumbled into a bit of depression today as I contemplated my future. What will my life be like if my dear wife passes away before I retire? What about three months after that? I had a vision of myself getting up for work in this empty house after she has been gone for a few months. I would arrive at work, do my job, and come back home to an empty house. Foregoing retirement, would it feel as though my entire marriage never happened at all? My wife and I have not shared a single memory together in ten years, and we have not been making any real new memories.
Will my marriage just vanish? Will it feel as if it never happened at all?
I am already forgetting what she was like before dementia. Correction: I have already mostly forgotten what she was like before dementia. The thought of our entire marriage vanishing like a puff of smoke terrifies me.
I know we are all on this earth temporarily, and most of us will be forgotten at some point in the future. I just wasn’t ready to have that feeling today.
Thank you dear caregivers for reading and listening.
Bill_2001
Comments
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Oh, dear, Bill, I'm so sorry. You've helped so many of us with "The Cavalry Is Not Coming" and its updates, and I'm heartbroken for you that you feel this way. My own ordeal with DH was mercifully briefer than yours (first suspicion that something was wrong, 2011; formal diagnosis, 2018; institutional placement, 2021; his death, 2023). I can't imagine being in limbo as long as you've been. Hands across the miles to you.
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I have felt some of the same feelings. We have been married for 50 years. 25 of them I felt like it was as good as humanly possible. The last 25 has not been so good. Me wife did some things that hurt me deeply then came Alzheimer's. We could never rebuild what I thought we had because the disease wouldn't let her focus enough. I stopped working 3 years ago to take care of her the 2 years ago she had a stroke and moved to MC. I can't really remember the good times and how they felt. I am in an empty house most of the time. I go see her almost every day, but I don't really know if it is good for either of us. We have 4 kids and have done a lot with and for them. Now they are all busy and I mostly feel forgotten. Then I think about my grandparents and how none of my kids knew them or really anything about them and I think that is the way it will be for me soon.
I am sorry I have no encouraging words for you, but I get what you are feeling.
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Yes this is like a long lasting, meaningless purgatory. I know what he was intellectually in his former life, and I try to remember the feelings I felt at all the important events in our long marriage, but it gets harder as time passes and he becomes more and more just a shell of a person.
The only thing that keeps me optimistic and happy about life is that I am fortunate enough to have close contact with our daughters and grandkids and am very involved in their lives. Without that I would have nothing.3 -
Thank you for sharing your thoughts and feelings. My DH and I are both retired and it is a daily struggle to make everyday memorable. My DH is crossing into stage 7 and does not tolerate much . I was cleaning closets and found holiday and birthday cards my DH gave me over the years. It was the first time I felt like I remembered our old life. I hope your memories don’t completely vanish in a puff of smoke once your wife passes. Glad you posted
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Bill, you've been so helpful with your insights and wisdom. Depression is a real b*tch. I'm battling it myself. There are days I just don't want to get up to do anything. But there are days I have energy enough to get through the day. Just know that you have a purpose, even at times you may not feel it. Many of us feel you! Grieve is another b*tch. But then again, know that it, too, will come to pass. Five years ago, when this hellish journey began, I didn't think I'd be here today. Yet, here I am. You will get through it, too.
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Bill I’m so glad you posted, I think about your postings and situation ALL the time and I just wondered how things were going. They are posted on my fridge.
Constantly reinventing yourself whatever the situation, is draining plus the knowledge that it’s not going to get any better than this moment and to that it’s on the downhill slope no matter how slow.Have you seen ‘A Man Called Otto’ if not it’s worth a look if nothing else quite entertaining.
Do post again.
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It may not be that you cannot remember what she was like before dementia but rather that you ache so much to relive a second or two of that relationship. Would it be any different if she had passed suddenly 10 years ago. I think it's like any other memory we have - it's a memory of a piece of time. Try to hold on to that Bill. Even if it's replaying certain moments of time over and over. Your marriage happened, you loved each other, and now you are doing the most important thing you could ever do for her.
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Bill you are doing God's work by being there for your wife. May you and your wife be blessed.
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Bill, so sorry how this terrible disease has affected you and your DW. I have been caring for my DH since first noticing symptoms in 2015 and he is now early stage 7. I am truly blessed to have had my DH in my life and we had a story book marriage before AD. Most days, and hours of each day, I focus on being the best caregiver I can be, but every once in a while a memory will pop up, most times triggered from a song, and it’s bittersweet. The memories bring back the way we were and I know how real and how special it was but at the same time I am so sad because I miss him and the life we “shared”. I know it sucks dealing with this disease and being a 24/7 caregiver is hard, but our marriage and special love is why I do this day after day. I believe it’s why you do it too and that is your proof of your marriage and love for your DW.
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Bill, thanks so much for sharing what you did. My wife was just diagnosed three months ago and she's still pretty much her loving self. Your words brought home how special this time is and to make today count. Bless you, sir.
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Bill, i have only been on this journey for 3 years and already struggling with depression. I simply cannot think about what it will be like in the future. Most of us have photos of our wedding, places we've been and big events in our lives. Will they welcome you home after work? No, but they will remind you of happier times and the love that you shared. This was not a wasted life. Love is never a waste.
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Man, Bill. I cannot imagine suffering through this long. In some ways, I was "lucky". My DW progressed so rapidly, I couldn't keep up with her changes, though now recognize I had been dealing with its early stages much earlier than I realized.
I'm now in Stage 8 for four months and find myself fighting to remember her before the disease took her. The last year was so damn awful, I have trouble getting it out of my mind. Fortunately, I've also started remembering how we met and fell in love, but those images aren't the majority of what I see yet. I hope those images of our early years come back in more force. I'm working hard on it, but we'll just have to see. I couldn't even begin to do that while she was still alive. That's something.
Big hug.
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About 5 years before my husband died, I asked a VD widow about this. Will the good memories come back. She smiled and said, "Oh, yes!"
And then he finally passed away. It did indeed become easier to remember the good times instead of the nightmare of caregiving. The problem is, those memories were so distant. I can look at old pictures and smile, but it never felt like it had happened in the recent past.
So, my marriage hasn't been erased. It was very real. It was just a long time ago.
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@Bill_2001
I'm not a spouse, but I will report that my mom was unable to fondly remember anything positive from her 60+ year marriage when dad was in the later stages of the disease. She needed a year or two of space from the trauma of it all to finally access the memories of better times and take comfort and pleasure in them.
HB3 -
Bill, as always, your post resonated with me. In about three weeks, my DH and I will have been married for 59 years. I would say we are going to celebrate our anniversary but, of course, there is no real celebrating anymore. There will be a cupcake or ice cream for him and I will tell him it is our anniversary and he will smile but not really understand. Like you, I have trouble remembering what my spouse was like before the disease. I know we smiled and laughed and traveled but that all seems like it happened in another life. He has been in MC for almost 2 1/2 years and I still cry sometimes when I come home to my little empty house. It's a lovely little house and I would so like to share it with him but that is not to be. For now, I visit him often and leave feeling rather empty most of the time. We have been on this road a long time. I first noticed symptoms in 2011 and took care of him until January 2024. Hang in Bill, and all of us. Sending hugs.
Brenda
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Bill, I think it will come back to you when you are no longer up to your hips in alligators. At present, you are under constant stress, work in the day and caregiving otherwise. That affects recall.
I'm a year into Stage 8, and I can remember things from the '60s, '70s, etc., including some things I would rather forget. I think you will too.
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I have felt that too persevere there are moments in time that we hold on to like the image of our children growing up then coming face to face with our middle aged son or daughter, our own parents at certain times. For me at this time with DH at stage 6 or 7 old photos make me cry and I’m desperately trying to make new loving memories while DH is still at least able to walk a little and enjoy a milkshake at the beach albeit sitting in the car. The here and now can be so sad, confronting and weird I cannot bear the thought of looking into the future.
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Bill, you have helped me so much. My DH passed in August 2024. It took me a year to be able to remember due to grief. I made a list of ways I can honor his memory and it helped. I started writing about our life now that I can remember without falling apart. You will remember when you are ready. I can now smile at the memories. So thankful for the love we shared for almost 40 years. 💜
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It is my mom that has dementia. I can’t even imagine how difficult it must be for all of you with a spouse with dementia. I have found mom’s dementia has made me think a lot about life and death. What I value, what is important, what will things be like when she is gone, will I get dementia, how will my children respond, what if I have to go through this again with my husband (his mom had Alzheimer’s), he makes some mistakes is he just getting older or is it the very early signs. Life seems fragile. I sort through my moms house (she has saved everything) and see her entire life there. Keepsakes that meant something to her that I can attach no story to. A lifetime of memories. I feel out of touch with my kids and the younger generation as they seem so obsessed with stuff. Dementia is a slow in your face look at death. It has changed me.
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I am now several months into Stage 8. In some ways it feels like my 51 year marriage is a memory of a different version of me, a sort of parallel life. I think of my DW's passing as some sort of "reboot" or "reset" of my life. What happens from here isn't quite a continuation of what came before. My prior expectation of what a wonderful time we were going to have growing old together, that's the continuation of my former life.
I sit here alone feeling like I’ve always been alone. And yet at the same time I think of my DW almost constantly. I am surrounded by the remains of her presence, her untouched dresser top, her clothes in our closet, her personality in our decor. Photos and various memorabilia from our life together.
It’s called Cognitive Dissonance as I recall, the ability to hold two contradictory thoughts simultaneously. I'm not yet able to reconcile the two, so I just go with it. At some point I suppose the two notions will converge, or maybe not. Am I a little off? I don’t think so, I just think it’s the way we deal with such tragedy, each in our on way as well I suppose.
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Wow. Such a vivid description. I feel this way too. Thank you.
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"Dementia is a slow in your face look at death." Wow. Really good description. Totally agree, H1235. My mom is solidly stage 7 now. I'm an older mom myself of a young teenager. He told me yesterday that "people can die any time." I worry about what my mom's decline is doing to him and how the health issues of my middle age affect him too. He doesn't want to go see my mom now, and I really can't bring myself to push him to do it. It's excruciating for me, and I'm a 60 year old nurse who has seen many people die.
I remember when my dad was really ill, it was hard to remember him as he was in his vigorous years. Now that he's been gone for some time, the good times are easier to recall. I hope that it will be that way eventually for memories of my mom too. And for all of you who face the far more wrenching struggles of a spouse with dementia. Strength and peace to all.
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Bill, your post is heartbreaking. Your marriage will never vanish. It will always be a part of you. The memories might seem like they are fading, but I promise you, they are all still there. I had the same feelings when I lost both of my parents at a young age. The pain of the loss blocked out the memories. The same is happening to you. You are dealing with an incredible loss on so many levels. What I did after their deaths helped me remember again. I looked at the family pictures and remembered the memories that gave me joy. I wrote them all down. I talked to my sister and added to the list from what she remembered. It’s been over 40 years now. I still remember them, still see their faces, and still cry. That doesn’t go away. God bless you and your wife.
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Hold on to all good thoughts of your loved one. I can attest that my spouse was violent with his dementia. But sometimes you discover things that made you happy. It is in that moment of memories that will ground you when all else seems lost. I lost my DH 8 months ago but I still visit here and am grateful for others insight. You are not alone, although I know it certainly feels like it. Come back here often
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I am new to this forum. I have found reading posts has helped me so much knowing I am not alone in how I am feeling. We are in year six of diagnosis and I completely understand what you’re saying. I have found myself mourning the loss of our marriage and really the loss of my husband because he is not the same person he was just 10 years ago. I also am struggling with retirement because work is my only source of outside social interaction anymore.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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