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My 92-yr-old mother who was in late stage dementia is now actively dying. I am sitting here with her now listening to the horrible gurgling, rattling labored breathing. I constantly read on this forum about those who are with their loved ones at the end, holding their hand when they died. How can anybody do this??!



i love my mother with all my heart but I am having a hard time with this. Nobody talks about this, only how glad they were to be there in the end. She sounds as if she is drowning. Yes, I knew to expect this as part of the dying process, but reading about it and living it are totally different things.



i know she is not supposed to be aware of what she is going through and she is on morphine and Ativan, but that does not make her shallow labored breathing any easier for me to hear.



i can hear some of you now saying “Why don’t you just leave?” I really don’t want her to be alone. I’m not sure if I could forgive myself if she were alone when she passed. Some “experts” say she can sense if I’m here. All I know is this part is really, really tough. She has not had anything to eat or drink for 6 days. Her heart is strong and she is a fighter. I am told this part of the dying process (shallow fast breaths with gurgling, rattling sounds) could last as long as 24 hours!



I don’t want to have regrets but this is so hard. I know a lot of you must have been in this situation. Any advice?

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Yes. Speak loudly and clearly to her as you smooth her brow, rub her arm, and run your hands thru her hair. Tell her how much you love her, and thank her for all she's done for you throughout your life, as your mom. Kiss her cheek. Turn the music up in the room to help drown out the sounds you don't want to hear. Say all you need to say to her, and that you know the rest of the family is awaiting her arrival now so they can have a big reunion. Then leave. Go home and have a glass of wine and wait for The Call. She's not alone. She's already left her body. Her soul has transitioned to the other side where she's at perfect peace now with God. ALL you're witnessing is the death of her mortal body which is hanging on and struggling to take its final breath. The essence of who she IS is watching you suffer, at her bedside, from above, and sending you strength for this final farewell.

This is exactly what I did in my mom's final hours. I did not want to be left with that final memory of her gasping to take her last breath. So I left before she did. And went back to sit with her after she passed and all was quiet.

My deepest condolences, dear one. Sending you big hugs from across the miles
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texasrdr22 Apr 2022
Lealonnie1, I know you just recently went through this so thank you for sharing your experience and wisdom. I did exactly as you suggested for the entire day until she passed at 11:45pm on Palm Sunday. I was able to hold her hand and kiss her forehead as she took her last breath. I want to think that she knew I was there, but I'm not even sure that is physically possible.

I am sad but relieved that she no longer has to fight this cruel disease any longer. Thank you for all the wise counsel you have given me throughout this journey.
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It is with both sadness and joy that I tell everyone that my precious Mother passed away at 11:45pm on Palm Sunday. I will miss her every day of my life but am thankful the Lord saw fit to take her Home and end her battle with this cruel unbeatable foe known as dementia.

And, yes, I was with her when she took her last breath and am very glad I was able to be with her.

Thanks to everyone for all the advice and wisdom that you have provided for me throughout this long journey.
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My mother died at home in her flat, with me on a truckle bed just outside her small bedroom. I’ve forgotten the name of the end-of-life breathing, but it did last for several hours. I knew what it was (a gurgle in her throat that she could no longer swallow), and it didn’t worry me. Since then I have become much more used to wearing industrial ear plugs, and I might put them in if I was in the same position again. The doctor visited, bent down and spoke quite loudly in her ear, and she responded. Hearing is the last thing to go. Mum actually died in her sleep in the night while I was also asleep just outside (in the space of a couple of hours). Those ‘BBC deaths’ (the Beeb is particularly good at them) which are so quiet and quick, are just crap.

The sounds didn’t bother me because I understood, and I was glad that the end was coming. Don’t be afraid, don’t be upset. There is nothing you can do wrong now. Cope the best way for you both, for the little time that’s left. Lots of love, Margaret
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texasrdr22 Apr 2022
Thank you, Margaret. I am glad you were able to be there when your Mom passed away, even if you were not in the room with her. I still am amazed how my Mom went from great blood pressure and oxygen levels on Saturday to death rattle breathing and passing away on the very next day. Maybe Saturday was her "rally"?

I did get to the point where I considered the awful sounds she was making to be a welcome indication that the end to her suffering was near.
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I'm so very sorry that you have to go through this.

I can empathize. I sat with my mother for 4 days while she "transitioned". I also listened to that horrible "rattle". I get exactly where you're coming from.

And I freely admit that I probably did everything "wrong". I didn't play soft music and talk to my mother. I just couldn't. I was afraid that I would break down, and I was terrified that her hearing me in distress would compel her to "come back" - for lack of a better way of putting it. I had an excellent relationship with my mom so I didn't feel like there were things I had to say for either of us to be at peace. My mom had zero fear of dying, so I didn't feel compelled to need to relieve her of fear. She enjoyed quietness in her house so I didn't think that music was a necessity. I just sat with her. Was it enough? I don't know. I do know that I don't regret not doing any of the things that I read in the hospice pamphlet about things I could do while my LO was actively dying.

And I will also freely admit another thing. Worse than the rattle, worse than the phases of dying to me was the tedium. I know that sounds absolutely cold hearted. But the days of sitting there, the minutes blending one into another while listening to each damn breath, wondering if that was the last...if you ask me what my vision of hell is, I think that might be it. The timelessness of waiting. Being caught between your guilt at wanting to leave and your compulsion to stay.

I had just woken up from a brief nap when my husband came into the room, and about 2 minutes after that my mom took her last breath. It was such a relief that the waiting was over, I don't think the grief really hit me until the next morning. I was just so thankful that it was over. It's really the only guilt I feel at this point, and frankly that fades every day. I know that I did the best I could through the entirety of caregiving and at the end of the day, that's all anyone can do or should expect of you.

(((hugs))).
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texasrdr22 Apr 2022
Notgoodenough, it is if you were reading my mind! Everything you wrote was EXACTLY as I felt and wanted to express but couldn't. I did not play music because Mom wore hearing aids, did not have them in and could not have heard it anyway. To me, the horrible breathing soon became a familiar sound - one that I hated and dreaded but somehow recognized it as a sign that her suffering would soon be over.

I did talk to her about our 73 years together and let her know I was proud to be her daughter and that her kids and grandkids would be just fine, largely due to her presence in our lives. She knew I loved her with all my heart and that it had been my honor to care for her for all these past years.

Yes, I do feel guilty for wondering each and every day why God had not taken her. And, honestly, I have not cried yet. I know I will when my adrenaline wanes, but I have always known that dementia was a fatal disease and that, at some point, this would happen.

I did everything I possibly could including putting my life on hold for all these years to try to care for my sweet Mother to the best of my ability. I am thankful that I was there for her and able to see her journey through to the end.

Again, thank you for the wonderful message. I truly think what you posted should be part of every Hospice "book" in the world.
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Texasdr
May you find peace on your mother's passing. I was with my mother when she passed away on Mother's Day 2014. I will always be grateful I was with her when she died. She suffered from end stage COPD and finally her lungs could no longer sustain her life. She died peacefully with her family surrounding her and comfortably sedated until her last breath.
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texasrdr22 Apr 2022
It must be hard to have lost your Mother on Mother's Day. I, too, am grateful that I was with my precious Mom when she took her last breath. I would not describe the experience as peaceful, but it was not violent either. I took solace in remembering what the Hospice Nurse told me and what I read that the rattles and gurgles didn't bother Mom at all. Still, it was not an easy sound to hear. I'm glad she is in a place now where her breathing is just fine!
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texas,

I'm so sorry for what you're going through. I know how hard it is.
I want to tell you something though. I was a hospice caregiver for several years. Many times a person holds on when there are people around. They stay tethered in this life and won't depart for the next.
When the loved ones take a break and the leave for a while, often that's when they pass. They wait until they're alone. No one is really alone though. Death is what follows life and after that is peace and a place beyond all pain and suffering. Your mother's loved ones will bring her to her peace.
God bless you.
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texasrdr22 Apr 2022
Thank you. I had heard lots of stories about people passing away when loved ones left the room, even for just a few minutes. I had gone home earlier in the day to shower and eat but she did not pass while I was gone. As it turns out, I was glad I was there with her, but would never want to go through that again.
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I know it’s really hard. I just went through this with my dad on November 2, 2021. I had read and hospice told us that day to talk to him because the hearing is the last to go. There is no way to tell you how to get through all of this unfortunately. The thing that helped me the most was knowing he had lived and done a lot he was. 88. All I can really say is to pray and ask god to help you through this even if you don’t believe he will be there. I hope you are not alone if nothing else if you can rely on hospice to help you they are really great.
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texasrdr22 Apr 2022
Thank you for your reply. Turns out I was not alone as the two caregivers at the Residential Small Group Home where Mom was came in and sat with me.

Actually, I had made up my mind to go home for the night and come back the next day. As I was saying good-bye to one of the caregivers, she asked me to come with her to check Mom's vitals one more time before I left. We did that and she and I started chatting and, one thing led to another, the time passed and, lo and behold, I was able to be there and hold my mother's hand as she passed.

That caregiver somehow knew that Mom's time was near and wanted me to be there. I am eternally grateful to her for getting me to stay.
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Texasdr
I am glad you and mom are released from this difficult passage. Wishing you peace and rest.
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texasrdr22 Apr 2022
Thank you for your kind words.
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She may be gone now, but my step dad was given medication for his breathing when it got bad in the hours before he died.

I know of three people who waited until everyone was gone before they let go and died.

If it is causing you distress, give yourself permission to step away for a while.
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texasrdr22 Apr 2022
Thank you for sharing your experience with this and for your practical advice. Mom is in a much better place now where breathing is not an issue.
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I know that was terribly hard for you, but know that the memory of those torturous last hours will fade from your memory a month from now and will be replaced by the happier memories. That's our mind's way of getting us through the hardest times.

Peace to you.
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texasrdr22 Apr 2022
You are right. It was hard. While I am thinking now that I will never forget those moments, I know the mind has a way of blocking out hurtful things. And, as you say, there are an abundance of happy memories to fill my heart.

Thank you for the hope.
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