Guilt - please help

Jamaicabound

My DH is nearing the end.  He has been bedridden since May. I would get him up when I had assistance.  He has developed horrible bedsores. When we get one under control another one starts.

I cannot let go f the guilt that I should have been doing more  so they did not get this bad.  Is it inevitable that this will happen?  The hospice nurse tells me it is but I continually blame myself and am making myself crazy with guilt. How do I stop?  

M1

Jamaica, he is dying.  He has had a long, long terminal illness.  You have NO control over that.  It is time for morphine, pain control, and comfort measures.  It is a terrible, difficult thing to have to witness the death of someone you love.  Hold his hand, tell him you love him, let him go.  

I don't know if that helps; it is intended to.  There is nothing you can do in the face of nature and biology, so let go of the guilt.  Let Hospice do their job, I hope they are helping you.

Peace to you.  Don't drive yourself crazy, there is life for you on the other side of this hard, hard experience.

Cynbar

Please don't torture yourself about this, Jamaica. Bedsores are often part of the dying process. There is even a name for this ----- Kennedy ulcer. It's caused by the skin and the circulation slowing down, breaking down. You can google it for more information. Sounds like you are a devoted wife, and you now have hospice onboard. Lean on them, ask any questions that come into your mind, but they will guide you through this stage. We're all praying for you.

The "other" one

Jamaica, please try to let go of the guilt ( I know that's easier said than done). If hospice says it's normal, believe them.  We had placed my father in law in a small, extremely attentive nursing/assisted living and he still had bedsores near the end.  They could not have been more attentive and proactive and there was experienced, round the clock staff trying their best.  He had all the latest equipment that is used to prevent bedsores.  I'm sure you've done all that you could, but  it's awful to feel so helpless.  Please be kind to yourself and  allow yourself to just  be present with him.  That is most important now.

Beachfan

Jamaicabound,

What M1, Cynbar, and the “other” one said…..and more. You have cared for him at home; there is no more you could have done.  I, for one, don’t have the emotional strength to do what you are doing.  I can offer you nothing but prayers.  Stay strong, let go of the guilt and  concentrate on just loving him.  

sandwichone123

Sometimes bedsores are unavoidable--even actors with unlimited money and help have gotten them at the end of life. There is absolutely no way one person can prevent them. To provide adequate care to a person in this situation requires shifts of workers 24/7 around the clock providing care at least every two hours. That is not a gig for any one person, or even most large families.

Turnergirl

Jamaica--

I too share your guilt and misgivings as my mother passed away on November 6th with a significant stage 4 bedsore that had started and grown exponentially worse in the last 7-10 days of her life. She was in a SNF that had not been perfect but had seemed to be very good overall. She'd been bedbound since November August 2019, and I visited her every couple of days if not every day until the pandemic lockdown began in March 2020. Even without my ability to be there every day her skin had remained ok--until this past month or so. She'd begun to eat much less and sleep more toward the end of September, and her decline continued from there.

The hospice nurse and the wound care nurse both told me that the bedsore was a part of the dying process and that it had gotten so much worse so quickly because without taking in nutrition the body was unable to heal itself. So there wasn't anything that could be done; I almost wish the wound care nurse hadn't even been involved because my mother was already dying and some of the repositioning that she suggested may have caused her undue pain or discomfort. I felt guilty about that too, but I'm working with it. I think the wound care nurse had to be called because my mother was in a SNF--but had she been at home or in AL or MC I undoubtedly would have called one too. So I can't second guess that either. 

In the last 3-4 days of her life I did understand more clearly that the main objective was to keep my mother comfortable, and to let her know that I would be ok without her (I am an only child and she raised me by herself). On the afternoon of Saturday the 6th, several hours before she passed, the nurse and aide came in to reposition my mother and I told them no, it did not matter, just to give her the ativan and morphine that would make her comfortable. I could not bear to see them try to move her again. 

I truly understand how you are feeling, but I want to add to the chorus--no guilt. The sore and its inability to be healed are just this latest painful part of a painful journey, and none of it is in your control.

And thank you to the others who've posted here about similar experiences with bedsores and the process of decline. Your words have been a comfort to me too,  as I definitely struggled with the very same questions.

abc123

Please let go of the guilt. What you described happened to my husband too. This is not your fault in any way. I agree with M1 about using the medication to ease his pain. Some patients needlessly suffer because the caregiver is afraid to use the heavy medications. Maybe you could try to gently rub lotion on his hands and feet. 

I’m sorry this is happening to you and your husband.