Guilt - since passing

Rob's Daughter · June 16

Hello -

I've spent a lot of time on this site for years once both my parents were going down this path of dementia. So much help and information on the board "caring for a parent"

My mom passed in November of 2025 and my Dad in March of 2026.

They weren't the parents I knew. My Dad's journey was different than my moms. I don't think he knew me, nor where he was. My Dad needed help, he was having issues with making it to the bathroom in time, some anger and really assisted living was a blessing since I knew he was safe.. My mom wasn't happy about moving in to assisted living with my Dad. What I thought was going to be relief for her about his care turning to anger about being there… the food wasn't good, the people were slow… She didn't want me there, said "I could go". etc and then she started falling, losing weight and then hospice stepped in. I look back now and I think I was so concentrated on my Dad, I missed the signs that my mom was on this road too.

I'd visit weekly, for an hour at first and then slowly as they both declined, my time was shorter and shorter. My mom was so soft spoken and you couldn't hear her nor make sense of what she was saying. She had lost so much weight, she was a skeleton. So hard to look at, to be with. She'd lift a finger and point at something and I usually had no clue what she wanted or was trying to tell me. Closer to her death, I'd find them both in bed resting… I'd stay to drop off my supplies I had for them for the week, but wind up only staying a few minutes.

After my Mom passed, my Dad really didn't change much. The last conversation I had with my Dad, he asked me "Did Mom make it okay?". Not sure you could call it a conversation, but I guess it was a few words he said to me. I told him that she did. I'm trying to remember, but it was only a few weeks later that he passed too. Had trouble breathing , morphine was given and he passed a day later.

I've mourned their condition for years…. My parents were in assisted living since the Spring of 2023.

On the journey it was harder and harder to visit. To be honest I dreaded going. I always stopped in, but how could a daughter with such WONDERFUL parents not visit an hour? How could this daughter feel this way? What kind of monster am I?

I know it was a lot. I'm an only child. Hospice was wonderful taking to someone from my team weekly if not more often.

I feel guilty that I didn't spend more time with them. (but then I tell myself it wasn't them…. I had a great childhood and adult life with them… this isn't them)

Does any of this make sense? Is something wrong with me? I'm sad that they are gone, but glad they aren't suffering and glad they are together in peace.

Thank you for reading

RD

sandwichone123 · June 17

Hi RD, you know guilt isn't reasonable but it is common. While we are the person that found them a safe place to live and be cared for, we are not the person that decided they would be unable to live independently—the disease did that. While we are the person that visited and brought them the things they needed to be comfortable and cared for, we are not the person that made them unable to recognize or appreciate it—the disease did that.

I visited my dh twice a week at first, and I'd reward myself with a rootbeer float that first summer. Later I'd bribe myself with a donut or another treat—not because I didn't want to see him, but because I didn't want to see the condition he was in. I don't think you need to feel guilty for the times you spent and did not spend. You loved them and provided for them.

psg712 · June 17

RD, my heart goes out to you. Caring for one parent who is no longer the person who raised you and loved you is so tough, I can't wrap my head around how it would be to care for two at once.

My mom died ten days ago, so this is fresh for me. But I don't think anything is wrong with you. Caregiving for someone whose identity is dissolving into dementia is so emotionally consuming that sometimes you have to absorb it in very small bits at a time. You are not a monster. You are human, and you did the best you could with the situation you had. You were there for them even though they were no longer themselves.

I relate to your feeling of "sad they are gone, but glad they aren't suffering." I am thankful that my mom passed peacefully. I know I haven't yet fully realized her loss, as my recent memories are of the shadow of herself that she became. I feel that I lost my true mom in pieces along the way.

The people at her wake who were most comforting to me were not those who shared warm remembrances of long ago times, although I appreciated these. It was the handful of folks who had also loved and lost someone through dementia. The others didn't want to hear about her recent struggles. But those are the most real memories for me at this stage.

If I'm honest with myself, my grief is really about me, about the losses I experienced during her decline and the reality of now being without parents. But isn't that true of anyone who mourns a death? The person who died is now beyond harm. We are the ones who live on, who must adjust to their absence. I hope that you have faith and friends to sustain you. This forum is so great to connect those of us with similar struggles.

Rob's Daughter · June 18

Thank you @psg712 & @sandwichone123 for your reply and kind words.

So hard to believe they are both gone. Losing them both within 3 1/2 months was tough… However I do think how luck I am to have had them so long (57 years). Not ALL of my life was hard caring for them, just a few years. I need to remember "the disease did that"… and give myself some slack.

Thank you - RD

howhale · June 18

Such a terrible series of losses so close in time to each. So sorry for you. I suspect that all of us as care givers have some form and level of regret and guilt. I sure do. We did all that we could for them in the heat of the battle against this horrible disease but, in hindsight, I feel as if there was more I should have done or could have done or not have done. I think it is just the unfortunate grief we have afterwards and you have a double dose in such a short time frame. Yes, give yourself some slack. I will tell you however, that is easier said than done for us as care givers, spouse, children, etc. of loved ones taken by this disease. I try to recall those special moments (and there are always some even in the worst of it) when she had a good moment or a better day or smiled at me ,etc. The guilt and regrets still creep back in often at 10 months later. I encourage you to seek out in person or online Zoom type grief groups in which you can be open in expressing your feelings with others who have walked your path. If you do a search on here for Resources, you should find some to consider. If you do not have any luck there, feel free to message me and I'll pass on ones I know of.

Guilt - since passing

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