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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.

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You were a very kind and loving daughter. I can’t imagine anyone hoping or expecting more. I hope you can believe it and be at peace. When it is your time, I don’t think you could ask the friend or relative or whomever is with you with you to behave any differently.

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.
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Msblcb Jun 19, 2024
Thank you so much. My mom was always a fearful person. My relationship shifted as I matured to one of protector, and trying to make sure she felt safe, even before her dementia. It is hard to break that feeling of responsibility. I certainly could not protect her from death. Thank you for your advice.
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I don’t think there is any way to know if a different response would have been easier for your mother. I’ve come to believe that what matters most is that we try to make our choices from a place of love and compassion, which you certainly did. I hope you can find peace and release from this sorrow you are carrying,
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Msblcb Jun 19, 2024
Thank you so very much. We never know the outcome of another choice, do we. We have to live with the choices we make.
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yes you did the right thing. At that point we are all helpless in a sense, and you do what you think is best at that moment.
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Msblcb Jun 19, 2024
Thank you, Karsten.
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I probably wouldn’t say ‘yes you are dying’, partly because I’m not even sure that it’s technically accurate. ‘Dying’ can sometimes be turned around, like watering a ‘dying’ plant. The irreversible ‘dying’ at the end can be quite quick. By that stage people aren’t usually talking. I’d probably say something along the lines of ‘I think we are getting closer to the end’, and follow it with something slightly different, like ‘are you in any pain?’.
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Msblcb Jun 19, 2024
Good thoughts. I do wish I had the presence of mind to respond more delicately.
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My friend's wife had Lewy body dementia. She no longer talked, and even though he visited her in her facility every day, she didn't respond to his presence or his news of the day or anything at all. Every day he told her that it was okay to leave this world, that he loved her but it was time for her to go.

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.)
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waytomisery Jun 19, 2024
In the weeks prior to my mother’s death it was as if her dementia got better to a degree . She was no longer angry , she became pleasant , a different person . She gave me her engagement ring to give to my daughter ( the only girl out of 8 grandchildren ) . She said she wanted to know K….. had it before she died even though it was spelled out in the will . The next few times I visited she would ask me if K has the ring and if K liked it.
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 .
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If an ugly thought pops into my head about either of my parents dying day, I immediately replace it with a happy thought of them laughing or celebrating a happy moment in life.

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.
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Msblcb Jun 19, 2024
Thank you! You are so very special. Always providing sound and honest advice. We are so fortunate to have you on the forum. I did love my mother so much. I suppose that love comes with an impossibly high standard. Thank you again for responding,
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I still have things that bother me about both of my parents passing a long while after, and I’m unsure I’ll ever be fully okay with it all. But mostly, it’s gotten better. I do think you were right to be honest with your mother, as I believe despite dementia the person is “still there” on some level and knows what is happening. In any case I fully believe your mother knew your love and care. Try as I do to make peace with the loss and know you had no role in the inevitable being any different
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Msblcb Jun 19, 2024
Thank you so very much!
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My mother asked what I thought happened at and after death, a few days before the end. She wanted to know what I thought, she didn’t want to discuss it further. For some hours before the end, she was out of it with a large morpheine dose to control cancer pain, so she didn’t have the issue of being upset when she knew it was actually happening.

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
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Msblcb Jun 19, 2024
Great advice. Just taking the time to write this for the forum felt healing in some way….voicing what my mind keeps telling me. I will write a script. Wonderful suggestion.
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My sister fought hard to live, had every medical treatment possible, but at the very end she said to her best friend that it was time for her to go. Her friend told my sister that yes, she could go, she had done all she needed to do, and would be remembered with much love by everyone. Sister then went to sleep and died the next day with her son holding her hand. I say this to you because I think your mom knew already she was dying. Like my sister, she did not want to die, but unlike my sister, with dementia your mom may have thought she had something still to do, thought she was younger, no one can know what she thought, but had she known her circumstances she might have gone more peacefully. So sad, but you didn't cause it. It was already there in her head.
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Msblcb Jun 19, 2024
Thank you. My mom was naturally fearful. That was just her personality. She always assumed the worse outcome. She was not a positive person. I loved her so much. Typical that caregivers feel that can fix everything, even a natural personality trait. Thank you for sharing. Very helpful.
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I don’t think you did anything wrong. My mom wanted to know everything.

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.
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Msblcb Jun 19, 2024
Your mom sounded like someone who embraced life, even when she faced death. Thank you for sharing.
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I agree with way that your mother did know she was dying.
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.
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waytomisery Jun 18, 2024
For what it’s worth as a nurse I would at times tell a resident in the nursing homes I worked in that it was “ ok to go “ if I thought it would be a relief . Some would hang on believing they had to keep fighting because of family expectations . Never had a bad reaction .
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I think everyone has one thing that really eats away at them for a long time.

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
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Msblcb Jun 19, 2024
Thank you so much!
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Your mother was agitated before you told her she was dying . She already knew she was dying , that’s why she asked .

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 ?
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Msblcb Jun 18, 2024
I have spoken to a therapist. I do really well for awhile and then it pops in my head. We have an aunt that is dying this week and times like this make my memory fresh and raw. I suppose time will help. Thanks for your reply. Very grateful.
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If you were my daughter, I would have wanted you to tell the truth. 🩷

You did the right thing. 🩷
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SnoopyLove Jun 18, 2024
Exactly, I think the OP did exactly right, as hard as I’m sure it was in the moment and now playing it and other things back in her mind as she reflects on the entire excruciatingly painful experience of losing a beloved parent.

Best to you, Msblcb! 😊
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