As the group knows, my Mom died 5/20 after a 5 year decline following my
father's death from colon cancer (she was his primary caregiver). CHF, Osteoporosis, multiple back fx., neck fusion, stroke (residual left side paralysis), final dx- autoimmune cirrhosis liver failure and failure to thrive (cachexia). I took care of Mom either full time or part time until her hospitalization in 1/20 due to internal bleeding. Weeks in 2 separate rehabs - needed 2 person assist - 24/7. Got to a one person assist and was planning on coming home, then developed and passed from liver failure within 2-3 weeks. She was planning to come home the end of May-me evenings/weekends - caregiver during the day when I worked (necessity). When she got sick at the end, I begged her to let me come get her and care for her at home. She refused. Even when taken to the hospital, she refused to come home for hospice. I think because she knew how traumatic it was for us caring for Dad during his final weeks and watching him die. I stayed with her for a week in the hospital under hospice/comfort care until she passed (she had a DNR and did not want artificial feeding, etc.) Through grief counseling , GriefShare , friends and family support, I have battled through the worst of my grief (which early on was paralyzing). However, I still have frequent pangs or remorse and guilt for putting her in rehab in the first place after her hospitalization (she wanted to come home and do hospice in January), but the doctors were not sure she was "terminal" and I fought tooth and nail until the last hospitalization to keep her alive (probably somewhat against her will). I can't forgive myself for not just bringing her home from the hospital, accepting her decline, and allowing her last weeks at home with me under hospice. The doctors and therapists at discharge said she was a 2 person assist...I tried to move her myself and couldn't. The plan was to try rehab for her to get stronger and back to a one person assist (she was livid about not having 2 caregivers with her at all times - even if I was one of them). She kept trying - even 3 weeks before she died, she was walking with a walker again (she had not been out of the wheelchair for over a year!) But during Covid, I was not allowed to see her-to see how weak, fragile, sick she was... I talked to her 3x a day every day - sent up her favorite foods, treats, gifts, goodies, clothes, but I begged her to just come home as Covid wore on...isolation was not good - though the staff, caregivers and therapists spend a lot of time and care on her - it was not me; she was not home. She kept saying a little more rehab - then she got sick quickly. She went from rehab to hospital to hospice...not the ending we planned or I hoped for. I regret not just bringing her home despite her arguments and protestations. I can forgive myself for so many other minor errors I made in hands-on caregiving for my father and her...but the rehab decision during COVID still haunts me...what if...I could have reversed her wasting disease - gotten her to eat better? What if,..I had gotten her to the hospital sooner to discover her failing liver ? Made sure she was not lonely or depressed? Even after all this time, I feel I let her down and failed her at the worst possible time - leaving her alone without me in her last few weeks (no on site visitation allowed during COVID), I regret listening to my family and Mom who told me she was safer there - medical care, 24/7 caregivers, Covid precautions ...the fact that she died during that time makes it so seem like my initial decision to try rehab (with her initial agreement) contributed to her death because I (the person she trusted most who watched over and protected her) was not there with her the last few weeks. I want to keep moving forward, forgive myself to some degree, and not remain "stuck" here. Everyone has helped me so much- help me find some forgiveness and peace in this last hurdle.
6 Answers
Helpful Newest
First Oldest
First
I know we all have our 'plans' for what the end of our lives will be like. And I would fathom that a good 99% of us will be wrong.
All we can do is to work through the grief and continue our lives in such a way that our LO's who have passed would be proud of us.
It sounds like your mom was really 'in control' of what happened, and of course, COVID made everyone edgy and anxious--sure didn't help.
Have you ever lived with a chronic illness yourself? It's draining and exhaustive and when life simply has no joy or reason in it---letting go and letting God take over (He's in charge anyway!) is probably the hardest, yet most important thing.
Your mom is free from pain, from the misery of day after day of just existing.
You did amazing to help her so much. Dwell on the good and not the bad.
You did the BEST YOU COULD through ALL of this situation.
Bless you for being a caring and loving daughter.
ADVERTISEMENT
Rehab was the logical choice for your mom. Covid was nothing you or any of us had control over either, and just contributed more chaos to many elders' situations in general.
Liver failure took your mom's life; not something you did or didn't do, so what is there to forgive yourself for, exactly? Trying to to the right thing? Caring? Covid was the reason you couldn't see her or be with her at the end, and many of us were in the same situation in 2020, thru no fault of our own.
I like Alvas idea about coming here to share your experience, strength and hope with others on the forum who are suffering. What better way to heal yourself than by giving OF yourself to others? Therein lies the peace you seek, or at least a good deal of it, I think.
At this point what you are doing in revisiting things already somewhat settled in your mind, is almost with purpose and by choice. And it may be a way for you to avoid the final loss and grief of letting go and moving on.
At some point you will have to sit down with yourself and understand that even if ALL of your worst suspicions are CORRECT (I don't think this is the case, but even if) there is absolutely nothing to be done about any of that now. And what, other than occasional sympathy, does it do anyone to dwell upon it? Certainly not your Mom. She is completely at peace.
It is over now, and there is no going back. And knowing how close you were, both you and I know what your Mom wants for you, know the great disappointment she would feel that now, one and one half years later, you remain in pain, and you still question yourself. It could only hurt her. And to what end?
So I hope that you will make the final step. That you will allow these thoughts to enter and will turn them then quickly and gently aside. That you will ask your SELF how many times you will allow these thoughts to harm you, for it is a type of self harm even if it is not a razor taken to mark up your arms.
I surely do wish you the best. You already HAVE forgiven yourself to a great degree, but there may always be times when you allow niggling thoughts into your head. You would not be alone in that. We all live with things in our lives we wish we had done differently, things that caused great harm, sometimes irreparable harm. But steeping ourselves in the pain of that once we have come to terms, once we have learned acceptance, does no good for any human, not ourselves, and others who must live in our sphere. Life is for living, for learning and for loving. Best to get on with that as soon as you can.
And one more thing for you to try. I do not see you overmuch on Forum unless to come to tell us where you are on your own journey. Next time these thoughts come to you, perhaps consider coming to Forum and answering the questions of others. You have learned and lived a lot. There are people here asking questions. You may help them with positive thoughts and helpful hints. Change what is your own pain into HELP for OTHERS. It may take you out of your own head, and help you to try to help heal others.
Best to you and good to hear from you on the forum for those of us who have followed your journey.
"When she got sick at the end, I begged her to let me come get her and care for her at home. SHE REFUSED. Even when taken to the hospital, SHE REFUSED to come home for hospice. I THINK because she knew how traumatic it was for us caring for Dad during his final weeks and watching him die."
That jumped out at me because she made very clear decisions, but you THINK you know what her motivations were. I assume she didn't flat-out tell you why she refused, or you'd have said so.
Give yourself a break. You're blaming yourself for not being able to change the course of nature and for not disrespecting your mother's wishes. Regardless of her reasons, they were HER reasons and it wasn't for you to choose for her.
As for trying to somehow change the course of her illness, that's just silly. Nothing you did caused her problems, and nothing you did exacerbated them either. People think they have far more power to change outcomes than they do. Even doctors can't stop the inevitable end.
Give yourself permission to let this go.
You know intellectually that our plans and hopes are just that "our plans and hopes" Quite often life has something else in mind. No one could have predicted covid.
I'm so sorry that you are torturing yourself with feelings of guilt and I do know that feeling of would of, should of, could of. But I think you always did what you thought was best at the time. That's all any of us can do and no one can do any better than that.
This feeling of being stuck will get better. I'm sure your mom would tell you that you did great by her if she could. I'll add you to my prayers.