I was taking care of my mom and was her decision maker. She had a hx of lung disease , got COVID and had no symptoms, but there was extensive damage to her lungs as a result of the COVID. She was hospitalized 21 or so days, became demented (confused), not sure which. Constantly took her mask off (non rebreather type) and would not eat. Her chest xray was heart breaking. She and I had several discussions about end of life care. So after much discussion I took her home. Seems she didn't trust my siblings for various reasons. Taking her home would allow her to spend time with her family and friends. At some point it looked like she was doing great, so I talked to the hospice nurse about putting her in a chair instead of laying in the bed all day. Finally with the hoist I was able to get her up. She said she was happy. After that one day she seemed to go downhill. I question myself about taking her out of the bed. I question myself about putting her in hospice. A few days after the chair incident she never woke back up but was constantly gritting her teeth. Her mouth was clamped shut. We gave her morphine every 2 hours and I sat with her for so long I got severe edema in my legs. I propped up my legs on her bed because I didn't want her to die alone. I left the room to eat and got back she had passed. She was alone. I wanted her to get better so I could bring her home to be with me and she wanted this so much, but she was never able to travel back to my home many states away. I have been in therapy over the course of this last year, but on those quiet nights doubt and fear creep in my life. Has this happened to anybody else and how did you get back to your pre-death / pre-care taking days? I feel stuck because I don't know if she thought I had given up on her and died sad because I never got to ask.
I’ve wondered if had I been there that day, she would still be alive.
We stayed by my grandmother's side and she so wanted to die, but she was never left 'alone' long enough to give her the chance to pass over.
One Sunday morning, my mom slept late and was preparing to go to the NH and got the call that gma had quietly passed in her sleep. Mother felt horrible--but we reminded her that GG had talked about Gpa coming to see her (he had died 36 years prior!!) and she wanted so much to go with him, but mom was ALWAYS there. Once she had a chance to be alone, she left with him.
This is not an unusual situation. I hope you can find some peace, and soon. Your mother knew she was loved, you showed that by your actions. You have nothing over which to feel guilty.
We're not the only species that grieves though. Elephants have their own method of grieving a lost member of their group. To me it's a reflection of bonding, care, close relations, and more aspects that make us not just human, but living beings.
I still grieve for my mother, sister, and father, who died 20, 19, and 4 years ago respectively. I don't think I'll ever stop that, but at least now I can emotionally and cognitively reach for the benefits I gained from having them in my life, and rely on those benefits to stay with me for the rest of my own life. In addition, I often think of what I learned from them, and how I can use that to be a better person.
Each died at times when their lives were becoming more challenging than a human being should ever have to face. The same situation applied to my father. And while I won't say that I was grateful they didn't have to suffer any longer, in fact I was. It was traumatic to see them struggling so desperately.
It was especially painful to see my sister grapple with the effects of metastatic cancer. She was a runner, taught exercise classes to seniors, but w/i a month of her death, she had lost the ability to walk, or even stand. That was so painful to both my father and me, and I know it was devastating to my sister. Honestly, and frankly, I wouldn't have wanted any of them to have lived longer and suffered. Quality of life is important; by the time they died, there was no quality, only pain and frustration, and probably fear.
You mentioned that you didn't want your mother to die alone. I understand that. I felt the same way. My mother passed overnight in a rehab facility. My sister, father and I had visited her the days before, when the roommate was coughing and clearly ill. My father and I were in the ER the following day; my sister stayed with my mother. We're relieved though that Mom didn't get whatever the roommate had and suffer through that.
My sister passed in a hospital hospice area with my father and I holding her hands; we had fallen asleep overnight, but I felt movement in her hand just before she died, and woke my father.
My father managed to stay somewhat alert while I spent time with him on his last day. He died just after I got home. One of our practices was to call each other when either of us returned home from an outing. I knew that he had waited until I would have gotten home, then departed.
I remember often though of the good things they did, our times together, and how much I learned from them that I can adapt now while I still have a chance to do so. That's my way of coping: a little bit of the good each of them did will be factored into how I live the rest of my life.
And taking action on those plans is comforting, reinforcing and helps counter the sad days. That's what I would recommend: cherishing your mother and her accomplishments, and using those to help others.
"The "grieving experts" tell us we often stay in these "what if" and "if only I had"s in order not to pass into the finality of death and the grieving of it. We allow ourselves the magical thinking that there is something that we could have done to change it, almost as though there STILL IS SOMETHING we could do to change it: some time machine to take us back.
There is also a sort of hubris that we are/were/could be in control of death. That we have some god-like power to change the inevitability of death, and the finality of the grieving and terrible loss.
The word "guilt" is often used to replace the proper word, "grief". As though we are felons and evil doers who did some malice aforethought that caused all this, and as if we could--if we wished--go back and change it.
But guilt belongs to real evil doers, and they almost never feel it.
You are human with human limitations and with a whole lot of love. Hopefully there will come soon some real relief that your Mom is free and at peace and you need not fear for her, suffer for her, be terrified at watching her decline, terrified you cannot do enough, might do the wrong thing.
If you need help with your grieving, do seek out grief counselors and workshops. Often Private Practice Licensed Social Worker is a good choice, one in hourly practice who works with life transitions.
There are always pictures that come back to haunt us. As a nurse I can tell you that people often wait until loved ones leave the room and then die. Cannot fathom why that it. I am so grateful to you for taking your Mom home where she wanted to be. I had to fight to take my 85 year old brother home. He passed only days after with Hospice.
For most of us those polaroid snapshots of "I should have done this" or "I shouldn't have done that" become more and more brief, fewer and fewer visitations, and we accept that we did the best we could.
You have my very best wishes and so much sympathy. My heart goes out to you.
Believe me when I say you are not that powerful, we are all born to die, the how and the whatever's are not ours to decide.
Many people wait until a loved one is out of the room, that is not the least bit unusual. Have you thought that was her wish? Surely might have been.
Guilt is driven by fear, what is your fear? Conquer the fear, regain your life.
People can rally, only to get sicker again as the disease progresses.
These things were outside your control.
What you could do, you did: bringing Mom to be with family. Making her comfortable. Sitting in the chair for a more normal day "She said she was happy".
Honestly, it sounds as good as it could be. A good passing as they say.
I would suggest trying to avoid dwelling & overthinking the hospice decision. Do not make the error of thinking choosing hospice is signing a death certificate. Sometimes people in grief mistakenly believe modern medicine is some sort of magic that can prevent death. It can't. If nature decides it is time - it is time.
"quiet nights doubt and fear creep in my life". I read once that the brain thinks over problems in the quiet of night, yet the problem-solving parts are in down time. So the doubts stay in a loop.
Once you know this you can use a few tricks to concur it. I think one way out is to shift focus into gratitude.
Be grateful you were blessed to support & care for Mom.
Be honoured you were nearby when she passed. (Many many times a person waits until their loved one leaves the room).
Be thankful for her life. Then send some love to her memory. To mindfully reschedule those looping doubts until daylight. Then acknowledge them but re-write over them again with gratitude.
Next is to look for a way to find solace. Some like to light a candle & pause, place flowers at the grave or plant a memorial plant in your own garden. Or have a favourite photo to smile over.
Letting go is hard. Rather than giving up on her, I'd prefer to think "giving over to mother nature".
May you find peace.
She died when she wanted to and when it was time.
You did nothing to hasten her death.
You allowed her to die at home in surroundings where she was comfortable and happy.
I do hope you contact the Hospice and avail yourself to the Bereavement Support that they offer. Some may be in a group, some may be private. This is different than many therapists.
I think there will always be doubts about all sorts of things.
did I do all that I could.
is there anything I could have done different.
what did I do "wrong".
It has been over 5 years since my Husband died and I still recall the feeling I had the morning he died. I heard him make a noise and I started to get up then he was quiet and I fell back to sleep. the thoughts that have been in my head....What if I had gotten up...what if he was calling for me....what if ...
there are no "What if's"
The feeling I had...he had been on Hospice for almost 3 years, I had watched him decline for years the last month was more severe and the last week or so was especially heartbreaking. So I was prepared..I knew he was going to die..I had told myself that the tears I was crying were selfish...that they were for me not for him. He would not want to have continued to live as he was the last year, (hell not the last 12 years! he was not the smiling, laughing person he had been, he was a shell) But that morning it felt like someone had ripped out my heart and stomped on it. so as prepared as I THOUGHT I was I was still not ready.
The feeling is there but it fades, not as sharp and painful as it was in the beginning. Kind of like a scar from a deep wound. It is painful to even look at in the beginning raw and red. then as time goes by the red fades and eventually it is dulled. Sometimes touching the scar you get a sharp twinge of pain but that subsides.
From a quote I keep over my computer...
Grief never ends
But it changes.
It is a passage
Not a place to stay.
Grief is not a sign of weakness,
nor a lack of faith,
It is the price of Love.
((hugs))