How can I do this?

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How can I do this?

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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?

End of Life Family Caregiver Grief

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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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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'm sorry for your loss texasdr22 🤗

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Thank you, cwillie.

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I dying person has already been disconnected from the outside world. Being there or not when she dies will make no difference. If you can't face seeing and hearing her last signs of life, leave. You really have no obligation to suffer for her. She did reach a long life, well beyond the expected life expectancy. This is not a premature death, it's perfectly normal. Not everybody can deal with this. I couldn't myself. How you treat somebody while alive is what counts, not when they are dying or after they are gone. Staying with a dying person to the end, is a ritual invented by our society. There is no scientific reason for doing it.

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What it boils down to, I guess, is what each individual chooses to do when a loved one is actively dying. Some want to be there, some don't. There is no hard, fast rule about this.

My mother knew I loved her. I had cared for her myself for the previous 6 years before she went to Memory Care. As it stands, I have no regrets about anything related to Mom. I did the very best I could for her and she knew it and appreciated it. And, basically, I was with her at the end more for me than for her. Thank you for your reply.

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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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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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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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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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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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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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Texasdr
I am glad you and mom are released from this difficult passage. Wishing you peace and rest.

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Thank you for your kind words.

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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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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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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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Can you play some soothing music to help with hearing each breath?

I am so sorry you are losing your mom. May The Lord give you strength, peace and courage during this difficult time.

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Thank you so much for the helpful advice.

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If you need to leave for your peace of mind, you go. People feeling guilty because someone died alone is not a realistic expectation. Every single one of us will die alone. It is one journey no one can take with you. If you can be there and it doesn’t mess with your head, certainly be there. If it is too much, you can kiss them, tell them that you are so proud of them, that this is so hard and they are doing so well and that taking the next step is hard but that they are not alone. Even when it feels like it is a jump, God is there (obviously this is different if you don’t have a faith). He is already holding them.

I sat with my mom for a day and a half with the rattle, it is very disconcerting. I am not as visual of a person as my DH… I have had a number of times where I have walked someone out of the world. But, it doesn’t stick as an image in my head. It does with him. He is a very strong and wonderful human being… we are just built differently. If it is more disturbing than meaningful to you, there is nothing wrong with going.

Our society has a strange expectation of control in these situations. No one can predict death and it really is a solitary journey. You can love someone deeply and not be there when they pass. Billions of people have passed on without someone with them and no one should have guilt because of that. I hope this make sense. There is nothing to “forgive yourself” for, it is a part of life, a very sad one, that you cannot control. Give yourself some love. I wish you all of the best.

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What a wonderful reply! Thank you so much for reaffirming what I really believed to be true all along.

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.

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((((( hugs))))). I was not with my mother at the very end. I got the call that she was dying, got a plane, flew down and got there late at night. ( I lived 5 hr. + drive away,) She was peaceful and recognized me. I stayed with her a while and the gave her a kiss and said I had to go and would see her the next day. I was too tired to stay all night. The next day there was an ice storm and the roads were terrible - buses in the ditch and so on. It wasn't wise to drive. I called the nurse and was told she had just passed. I was and am OK with that. You do what you can.

It's OK to stay if you need to and it's OK to leave if you need to. Sometimes our LOs want to be alone when they pass and will wait till anyone in the room goes for a break. Sometimes our LO passes when we are there. There's no right or wrong way. You love her and she knows that. You cared for her and she knows that. And she loves you.

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Oh my gosh! I can't believe all those things happened to you to prevent you from being with your dear mother. I was fortunate to have been only .8 of a mile away from my sweet mother and could visit any time I wanted on a moment's notice. I totally agree with you now that I have been through this experience: there's no right or wrong way.

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You’re a good son.

Praying for you tonight.

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Thank you. I am actually her daughter, but either way I appreciate your prayers.

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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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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 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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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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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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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.

How can I do this?

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