Guilt

ElCy

My DH passed a little less than 3 weeks ago. I find myself often overwhelmed with guilt. Were the choices I made for him the right ones? Did I contribute to his fast decline? Did I contribute to his suffering?

I didn’t know I would miss him so as I often thought his death would be a relief for both of us. But now, I’d give anything to take care of him once again…

jfkoc

My heart is with yours....I understand,

I think we all look back and wonder what if. The fact remains one does their best with the knowledge they have.

As time progresses and I look back I know there are things I could have done better. I have regret...but I do not feel guilt.

Further, I will not beat myself up for the times I was impatient, the times I snapped or the many times I just wanted to run away.

Please, do not be hard on yourself.

-Judith

caberr

I'm sorry for your loss and understand how you feel. It's been just over 5 months for me. I have wondered if I should/could have done anything different. Our kids helped with the hard decisions and were behind me 100% but still doesn't make me stop wondering. But, in my head I do believe I did the right thing. In my heart not so sure.

Yes, I thought it would be a relief as well. It is for him but not for me. Thinking back, I can't believe how hard it was and how "lost" he was. When I think of him, I think of the good days years before he got Alzheimer's

You did the best you could. (we all did)

Shan

I’m just starting the guilt phase of this long, terrible journey. While caring for my mom I was too worried, exhausted, sad, angry, and so many more emotions to feel much guilt about decisions made in the moment. There were just so many decisions to be made with little to no notice as things changed on a dime and progressed faster and in ways we couldn’t control and didn’t want to happen to our LO. Now that my mom is in hospice with hours, days, weeks, nobody knows how long to live, (and I shake my head at the word “live” because she certainly isn’t living now and hasn’t had much living in her life these last three years since her dementia progressed), but now I actually have the time to reflect on the choices we made for her and I totally understand feeling guilty and questioning everything.

I’m working through my guilt too and my hope is that we all can give ourselves grace to know that this disease did not come with an instruction manual or a road map. We all made difficult decisions we never wanted to make completely from a place of love and caring for our LO. If we made mistakes they weren’t intentional and we all did the best we could.

Just Bill

I was stuck on the what if I did something wrong and was I the cause of her death guilt for a a week or so after. What helped me was the cause of death on the death certificate. It used big words to say heart stopped due to FTD. It didn't say heart stopped because of lack of food, water or too many or too little meds. Frontal temporal dementia ended her life, not me. Once the disease took over her life my job was to keep her safe, happy and comfortable. Guilt is actually arrogant in this situation to think my care giving skills were so extraordinary I could have prevented a terminal illness from taking her life. I also felt guilt for wanting her to die and then she did. I wanted her to die because she wasn't living just existing. I am clear that out of mercy I wanted her to die and looking back that was a feeling that should not generate guilt. It was out of mercy not malice. As someone else pointed out while she was in her final stages I thought her passing would be a relief. It was, but it opened a whole other box of emotions I did not anticipate. The finality of the situation is what hurts the most. Grief for me is twofold, one is the normal missing of someone as if they moved to a different country with no phone service. The second part is the knowledge you will never see them again and that is the part that hurts the most. When that pain comes I try to deflect it with gratitude for having the the gift of a sweet beautiful person for 41 years. I would rather have been with her for 41 years and lost her than never having been with her at all. I have feelings of grief but no more guilt.

tetwoman

https://alzconnected.org/discussion/comment/184504#Comment_184504

Bill - your words are truly a comfort to me, as I am also plagued by the what ifs and regrets and guilt. Did I push him to let go when I was angry or yelling or impatient. I don't want to remember the times when he didn't know who I was, or put on his jacket in order to 'go home'. Or mopping the floor at 2 AM while he wandered around the house. I felt that fighting for him to have end of life care was the greatest service I could do for him.Our sons agreed. But still……. I am so unbelievably sad at his loss - at my loss. A friend asked me if I would trade the 46 wonderful years together to not feel this pain and of course the answer is no. I will think of your words Bill, and hope the guilt fades.