My mom died in 2022. I have been thinking about those last days and was wandering if anyone else experienced this issue. My mom was very calm and in hospice. We just established hospice a few days before she passed. She had dementia. I am not sure she knew who I was. She had forgotten all of her family.
The morning of the day she died, she became very agitated and ask me “am I dying?”. I was caught off guard but ended up telling her the truth, that yes, she was most likely dying and that I would be with her. She exclaimed “but I don’t want to die” and became very agitated. Fearful..holding on to the bed with all the strength she had.
The nurse checked for any signs of pain. There was none, I stayed with her, talked, played music etc. Eventually the comfort kit arrived and we were able to calm her down.
Did I do the right thing? Should I have told her or made her think she was just resting and would get better? I feel like my response brought on that terrible agitation and caused her distress…the very thing I tried to avoid in all my caregiving years.
Has anyone else faced this and if so, what did you do? I know that I could not control everything but having been a caregiver for many years, trying to “fix” everything so that she would be safe and cared for….I feel like I failed when it counted.
Traumatic and still upsets me 18 months later. Thank you for being great sounding boards. What a blessing you all are.
You did the right thing. 🩷
Best to you, Msblcb! 😊
My FIL was very anxious and agitated before the comfort kit arrived . He knew on some level he was dying but went into denial and He was calling us up in a panic because he could not roll over in the bed by himself . He called saying he was stuck and needed PT to come . He had known prior to catching Covid that he was not doing well , but had dementia and 1/2 the time would be in magical thinking and denial . We couldn’t go in person because he had Covid on top of other problems. If we were able to see him in person I think we would have told him the truth of what was happening .
You did nothing wrong . Have you considered seeing a therapist to help you through this ?
Something the should have, would have or could have done differently.
Your not alone. I should of got my dad the fish sandwich the day he wanted and not of waited . I'm sure you don't think I should carry that with me forever. Just as I think you shouldn't care that with you. So be kinder to yourself and don't let it eat you up, I'm sure it's not what your mom would of wanted.
When these thought pop in your head try not to focus on them. Do something, take a walk, or meditate.
Best of luck, find your inner peace
It agitated her to know that.
But many things agitated your mother at that time.
I WOULD, as a nurse advise people not to tell people that they are dying. You can never tell what affect it will have on them. I often here tell of my Hospice RN friend's caring for her own brother, dying of AIDS many years ago. He was by then very ill, in and out of coma, coming and going, speechless and she was cradling him. She did that thing that we nurses were taught and I never did, which was tell him "It's OK to go, N____. Move toward the light", and she says he looked at her in utter horror, as much as to say to here "What the HECK! Do you mean I am DYING". She has never said it again.
That aside, this bothers you now when it comes to you, and all I can say is let it come, and grieve it once again, and let it slide away again. If those who believe are correct then your mother is now in a place of perfect understanding. If I am correct, then dying itself is "the trip of a lifetime", and a wonderful experience. I have no fear of it, but many fears of living in pain or debilitated. I have seen many people leave this realm.
I recommend to any interested an article called "The Final Minutes" published in the Guardian. New scientific research. We have studied our first people passing into death on scans. The brain puts on quite a show, especially in the memory centers. You'd have to google it; sorry I have no link. It was re-printed in The Week, May 10, 2024 Volume 24 issue 1182.
As to memories of things that were so sad you cannot bear it--THEY never leave. For my mother it was the last move to care when she, who never asked all her life a single thing of me, looked at me and said "Is there no way I could stay in my little (ALF) place till the end" with such a look of sadness. She had two weeks to live. I didn't know, because had I known, of course I could have had leave that much longer. For my brother it was his last days, dying of sepsis and begging me to get him back to his ALF little room for the end on Hospice (which I managed to do in the first days of our lockdown. He, who never betrayed fear to me ever, who was always my big brother like a rock said "I am afraid".
I remember these things from my mother. From my brother. I let them come. I say "Oh, Francie." or "Oh, D." I mourn. I move on.
Our pain comes of loving someone. We know we tried to do the best we could with what we had, and we know when we felt we were failing them in their DESPERATION.
This is a part of life. A sad part. It's OK. It's the cost of the burden of loving.
She longed to leave this world She was so tired of struggling with Parkinson’s disease.
I am so sorry that you have been troubled by these feelings. I wish you peace.
I believe that your mom is at peace now and she would want you to be at peace as well.
I think that this memory will keep bobbing up for a very long time (my mother died in 1992, so mine has come many times). I think you need to ‘write’ a script for yourself, for when the memory comes again. Then go to your script, don’t relive the whole issue and all the things that might have happened differently. Perhaps along the lines of ‘She was frightened when she realised she was dying, so she held my hand and gripped hard to get strength from me. Then the medicos helped her to find the calm that we both needed. She had a long life and at the end she had a peaceful death’.
Lots of love, Margaret
There's no manual on how we're supposed to act or what we're supposed to say to a beloved parent as they're dying. Just like there's no baby book to cover every single hiccup our babies have in the first few months of brand new life. All we can expect of ourselves, in both situations, is to treat them with love. Which is what you did with your mother for a very long time, your whole life in fact. When she passed, she did so knowing what it felt like to be loved unconditionally, thanks to you, her beautiful daughter.
Please don't torture yourself for doing something wrong, because you did not.
One day he was saying his piece, "I love you but if you want to leave me, that's okay, because you'll be with Jesus." Her eyes flew open and she exclaimed, "But then I'd be dead!"
He was startled because she hadn't said anything in so long, but he told her, "Yes, honey, that's right." And she closed her eyes and never spoke again.
It wasn't too long until she passed. (True story.)
She was aware of her decline (CHF ) , as she told me she thought she would be dying soon and she did while taking her afternoon nap in her chair .
My MIL passed in 2017 of COPD. She was at home with a hospice nurse who alerted the family she was near the end. She was still conscious but in a stupor and having trouble breathing. When I sat alone with her I just reminisced about happy times. She asked me, “why is everyone being so nice to me?” I said we had heard she was having a hard time and we wanted to be with her. That’s as close as anyone came to acknowledging her end was near. She passed about 8 hours later.
My dad passed in May. He had Frontotemporal dementia and was also in home hospice. In January, he asked me “Am I dying?” And I said I was not sure but i thought it was possible. He said “I have had a good life so why can’t they just give me something to end it now?” I explained it was not legal except under very specific conditions in our state. He said, “why can’t we just do the paperwork then?” But he would not qualify as competent to give consent for MAID due to dementia which was too much for him to understand. I honestly wish they could have done it though, to spare him the suffering and indignities at the end. Anyway, for weeks after that, he told everyone he just wanted to die so why couldn’t they help him with that instead of bothering him to be cleaned, take his meds, ask him if he wants to eat or drink, measure his blood pressure etc.
He went from angry about that to just angry in general and he was very resistant to care despite being pretty incontinent and unable to walk. He just wanted to be left alone, denied he needed any help even though he was in a very weakened state, barely eating at all, and falling and injuring himself a lot. In the last 48 hrs he got aspiration pneumonia and was very agitated, gripping the bed, trying to get out, etc until they started the morphine every 2 hours which helped a lot. But he could no longer talk or respond at all.
I think the agitation at the end might happen in some cases and it has nothing to do with whether she asked the question or how you answered it. It’s just a feature of dying for some people, if that makes sense. Not your fault. If you had phrased your answer differently, she probably would have acted just the same.
There are things I wish I had done differently with my dad in his final weeks, but I try not to obsess about it. We all do the best we can. Including the dying person.