I am paralyzed with guilt. Mom passed 2 weeks ago in hospice care at the hospital - I was with her from beginning until she passed in my arms 6 days later. Prior to the ER hospitalization resulting in hospice, she had been in Restorative Care at a very caring, well-staffed, assisted living. After a hospitalization in January , she needed to get her strength back - after a short stint in a SNL ( neither of us particularly liked), when it was time for discharge, i was told at the last minute she was a 2 person assist - 24/7. I was working full time ( necessity) and had a caregiver lined up for when I was at work - I planned to take care of Mom evenings /nights /weekends as I had done for the last 5 years ...however, the doctor, therapists, etc., said it was unsafe for her and me with 2 people at all times....so we made arrangements for the Restorative Care facility - private room - month-by month rent - PT/OT 5x a week - 2x a day - 24/7 medical care, 2 person assist at all times...in the beginning, Mom seemed content - liked the therapists, made friends her age ( something she missed since moving with me 3 years earlier, great food, good care, etc...we planned a 2/3 month stint there ... then COVID hit - I was unable to do my daily visits and quarantine was not a good things for Mom...I kept asking her to come home, but she did not want to --wanted to finish therapy an try to get to a one-person assist ...a few weeks ago, she seemed to be getting more tired and weaker..still did therapy, but more difficult - I asked her to just stop - come home and let's re-evaluate after COVID. She said she needed more care than I could give her now at home and she was staying there ...the more I begged, the more she refused to talk about it. She started declining ...so I dropped off her favorite foods and called 3x a day to encourage her to eat, etc...I kept begging her to let me bring her home ..I had identified extra caregivers so I had 2 people 24/7 plus myself, but still Mom refused - saying she knew her caregivers there and felt comfortable with them and the routine, and did not want to start all over with new people...even if I was there evenings/night/ weekends...in hindsight, I know she just wanted to spare me seeing her decline so horribly ...anyway - fast forward to several Saturdays ago - she was taken to the ER - I met her there - and the slow decline led to her ultimate passing almost 2 weeks later. I keep chastising myself for not just bringing her home and getting the 2 caregivers originally - encouraging her to continue the OT/PT and Restorative Care a bit longer to see if she could get to be a one person assist ...then the COVID disaster threatened her already weakened mental and physical state. I should have overriden her wishes and just brought her back home and made it work...I know she was well cared for there for the 2 months she spent, and she truly liked her therapists and caregivers, but it was not home, not with me , with her garden at my house, etc...and I feel like it is partially my fault for the final decine...though ultimately, the CHF, paralysis form her stroke, and autoimmune hepatitis led to the final decline. Not sure how I will ever forgive myself for making that faulty choice to encourage her to keep trying therapy, when I should have just let her come home for hospice ...so my woulda/coulda/shoulda...I hope in time I can forgive myself for encouraging that choice for temporary restorative care instead of just bringing her home before Covid...so much emotional pain....
I think it’s natural to question the circumstances and decisions made when one has come out the other side of a difficult situation. I also think, that it’s normal to think that perhaps the road not taken would have been a better choice - with all its woulda’s, coulda’s, shoulda’s.
When - in fact, we have no way of knowing if that other path would have been better, at all. Certainly, every situation comes with its own set of benefits and pitfalls.
So - ultimately, we must learn to live with and accept the choices we made at the time. Contrary to that old saying “Hindsight is always 20/20” - sometimes hindsight is distorted by rose-colored glasses and self-doubt, when in fact you really did do the best you could at the time and in the set of those circumstances.
Please stop beating yourself up. Know that what you’re going through is a part of the “grief process”. If you find that you are really stuck in this “process” -
please seek out the assistance of a
grief counselor. The hospice organization that treated your mother should be able to help you to connect with one.
The last few days before my mother's death, my younger sister who is a doctor flew down to help me care for her. At least I had someone to help me figure out what to do and I wasn't alone with all those terrible decisions. I honestly don't know what I'd have done otherwise.
My mother wanted to stay at home, but in her place I don't think I'd have made the same choice. I'd rather die surrounded by experience medical providers than terrified family members. If my family members could be there for me while the medical folks provide the medical care, that would be the best scenario, I think. And that's what your mother had, Laurabelle. So maybe it was best after all.
Everyone has regrets - that's what the counselor told me. It's true - I have one relative who says - like you - that she wishes she had kept her spouse at home and not at nursing home. You have to trust that they know you well enough to understand that you had their best interests at heart and tried to do the best thing.
Yes the current pandemic is making everything so much more difficult and I feel for the people unable to be with their parents, or spouse, because of the lock downs.
You did what you thought was best at the time, and it was what your mother very definitely wanted. You think that she probably would have been happier if she had come back ‘home’, but you really don’t know how it would have worked out if you had gone down that different path.
What seems very clear is that your mother was near the end of her life. No choice you could have made would have helped her to live forever. Be glad that she chose for herself, and that she had any pain very well controlled. You should not be regretting that in any way.
My own experience is that there is always something to regret. Adrenalin keeps you going just before and after death, but then you cannot help feeling the pain of it all. The ‘foothills’ closest to you loom very large in your mind, but as time passes you will move back to see the ‘mountains’ beyond, and they are the good things to remember about your lives together. Be kind to yourself, and be grateful for the good times you shared. Lots of love, Margaret
Don't live with guilt and regret. You did everything you could for her and then some. I'm sure if she was able she would tell you this herself.
I know how it feels to live with guilt and regret. But you do what you think is best at the time and that's all any of us can do. Definitely allow yourself to grieve and then remember your mom with love and fondness.
I'll tell you something that I hope will comfort you. I lost 2 close family members in the last 3 years, my mother and my eldest sister. I was close to both of them and with them when they died and in the days and weeks leading up to it. One thing I learned is that it's impossible to avoid second-guessing yourself. If only I had done this or that or the other thing, maybe she would have lived a bit longer, or been a bit more comfortable or happier or more at ease. It's so traumatic, so painful, so awful that we can't help thinking that there must have been something we could have done to make it even a little bit better for our loved one. It's dreadfully painful to keep feeling that way when it's too late to do anything different. But I think it's almost unavoidable. And I think eventually you will feel the pain of losing her but you will not blame yourself. You gave all you had and you made your Mom feel how loved she was. In the end, that has to be enough.
I wish you peace and comfort as you recover from this terrible loss.