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?
16 Answers
Helpful Newest
First Oldest
First
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.
ADVERTISEMENT
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.
Peace to you.
Thank you for the hope.
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.
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.
I am glad you and mom are released from this difficult passage. Wishing you peace and rest.
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.
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))).
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.
I am so sorry you are losing your mom. May The Lord give you strength, peace and courage during this difficult time.
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.
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.
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.
Praying for you tonight.
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
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.
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.
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
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.