Regrets
As care givers for our loved one, our path was long, the struggle to provide care hard and overwhelming, but we did it as best we could. But now, as the dust of my loss begins to settle a little, my reflections and memories of our last few years flood over me. At times it just brings me to me knees, the tears flow unstoppable, the pain almost unbearable. What more could I have done? What could I, should I have done better? How much I did not know and how badly I floundered so many times in my efforts to care for her. Now, alone, so alone, and with the suffocating silence, my mind drifts back. As I look at her seat, I see her place in our bed, the chair at our table, her now empty closet, I see so many things I regret. Yes, I know the words. Everyone tells me I have nothing to regret. You did the best I am told. I appreciate their sentiments but it does not sooth my regrets, does not erase my failings, can not absolve me from my errors. And, as if the memories of my failings to her are not enough, older memories return. Memories of others who were in our care. Memories of the things I should have done better, more of, with more compassion come back now. I see their faces and I know what I should have done but did not do. The road together was so very hard for so long, but we were still together. Now, I am alone with only my memories of her and all the others we lost before. Try as I might to fill the lonely hours to help offset these consuming memories, there are always so many hours still unfilled when my memories take over. Perhaps in time I will find the way forward in this new, but unwanted, life without her. Maybe the regrets I harbor for so many I failed will slowly recede back into the deep vault of my mind and I will find peace. This place, this site and sharing feelings and struggles here helps me find a way to attack tomorrow. But, for today, I will see my long list of regrets over and over and will tell them all how sorry I am that I failed them. Stage 8 may be the worst of them all for some of us. Is this common or unique?
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YES! I feel the same way. And while I could not have written this myself, you expressed my exact thoughts perfectly. I have not yet figured out a way around these feelings, but please know you are not alone!
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I do relate to your post I have so many regrets and second guessing the things I did it did not do, the things I did not know, and that I am also navigating a life I did not ask for, and am so incredibly lonely without him. The silence is deafening, their spot on the couch now empty, that I can't sit on. It has only been 6 months for me, and if I hear one more person tell me I am so strong, now, all I can say is that they don't see me alone in the living room, trying to catch my breath, and to make sense of a life that I don't know how to live.
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Did I do my best? Yes.
However as I continue to learn I am caught up short with regrets.
My husband died 10 years ago but a regret can still bring me to my knees.
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I have some regrets, for sure. I was impatient too much, I'm not sure I did the right thing moving us away from more care and family/friends, I worry I gave the wrong meds, I regret not appreciating her more and starting stupid fights over the years. The times I was bad, I remember distinctly just how bad I was and it was pretty damn bad. After 6 hours at the emergency room one night, I rushed her into the car when she tried to escape the hospital for the 20th time that night, drove home with the windows opened and just screamed out the window with her sitting next to me all confused. Talk about a regret…and also sweet Lord…6 hours chasing a woman with dementia around and outside of an emergency room.
But, I'm fighting them hard, because to hell with regrets. I can't do a damn thing to change any of that now, just like I couldn't do anything to fix what was happening to my DW. We were all put in an unwinnable, heartbreaking situation and we survived.
I remembered in March that I had videos from our house cameras that had been stored. I watched a bunch of them -2 months worth from 3 different cameras. I found three where I could see the impatience in my face and body language. The rest were of me dancing for her or carrying her or trying to get her to laugh or eat. Or snuggling up to make her feel warm. I cried so hard realizing that yes, I had times where I was not at my best, but I'll be damned if I wasn't pretty damn good the vast majority of the time. It was a huge relief, to be honest.
I'm trying to move myself away from the regrets by reminding myself of my DWs spirit. She was warm, kind, loving, laughed easily and loved connecting with people. I am bound and deterimined to live the rest of my life as much like that I possibly can. I want that part of her spirit to live in me always if I can make that happen.
Hang in there. Stage 8 is no joke for me so far.
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That damn disease tried to destroy both of us in stages 1 - 7. It did for my DW and continues its' best in stage 8 to me. As always, the sharing others offer and the opportunity to just unload some of what we carry on as the care giver and spouse is much appreciated on this site. The life lessons we have as veterans of this horror must be shared in the hope that those just starting or anticipating this path can benefit and learn. There are other resources that are helpful, but you, here on this site, openly sharing, are the most valuable and beneficial resource they will find. It is almost funny sometimes when I sit quietly and reflect. I recall how hard these past years were and then dream how I so want another chance so I can apply what I now know. All my learnings down the drain as we only get one chance. So, I come here in hopes of some learnings carrying on through others for their benefit and I promote this site to anyone in this nightmare now.
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Thanks so much for putting into words what I've been feeling. The guilt, the second guessing, the what if I'd only - I know I did my best but with distance and rest I see more clearly what I wished I'd been able to do. That is hard to live with - and yet I know, in the moment, I was truly trying my very best to do what was needed to care for my DH. There was never a time when that wasn't my true desire, so I am hanging on to that. That empty spot on the couch is still heartbreaking for both me and my little dog - he will sometimes curt up there and just look at me, and I know he is missing my DH. Stage 8 is much harder and sadder than I expected - the feeling of relief that his suffering was over basically cleared the way for the grief to arrive. I'm working on feeling the gratitude for the wonderful years and life we had…
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As always, I find a bit of relief here among my fellow caregivers even now. I didn't realize there was a "Stage 8" after the struggle for our LO is over. It makes perfect sense. My mother died in November 2025 just after her 80th birthday. I find myself in envy of my friends and colleagues who still enjoy their parents well into their nineties. Alzheimer's took that away from me and from my mother. The regrets I feel always have to do with the years prior to MC when I tried to bend Mom's condition around my expectations. I thought I could control this damned disease by denying how progressive it was. After our LO dies, we do tend to look back at photos and journals and emails, just everything for clues. My sister and I knew there was something wrong eight years ago. I regret that Mom was struggling then, and I brushed it off. I regret that I was so rattled by the threat of COVID that I isolated her when she was most vulnerable. I regret that I felt overburdened when she broke her hip and stopped taking care of her house, her bills, her errands, everything. She was afraid, and I was afraid. Both of us became emotionally rigid as if we were tougher than dementia, as if we could simply fight it off if we tried hard enough. I regret that Mom probably needed more tenderness than I could give her. I can also relate to the second-guessing, especially once she was placed in MC. I look back and try to imagine me handling her living conditions, her medications, our visits, everything differently. It isn't guilt necessarily because I do sincerely believe I did the best I could. It's just that I get caught up in what-ifs. It's futile, I know. My only guilt recently has been that I'm not grieving harder. I want that cathartic breakdown, but all I feel is this hollow vacancy. I realize now that I've been missing my mother for eight years, not just the five months since her death. She's been gone so long. On one of her more lucid days, Mom sort of took inventory of her life, her contributions, and I promised to carry on her legacy as an educator and mother of daughters like she was. It was more of a goodbye than a lot of people get. I clutch onto that memory, allow myself some gratitude, and tell myself it's enough for now.
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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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