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Caregivers Who Have Lost Someone
My Sweeties Last Hours Haunt Me
This is my first post to this special board. I am confused about my sweeties last hours. We were on the cardiac floor of the hospital not the palliative wing so I think I wasn't informed of what I experienced on Saturday. Kind of when I had my first MRI and I was told it was going to be noisy and then when I was in the tunnel I freaked out because it wasn't noisy it was scary noisy.
I had read that the gurgling is not disturbing to the LO and more to those gathered around. If that's true, then I wholeheartedly agree but I can't imagine how that is true. My sweeties morphine was topped at four units and within the last hour or so he was given Ativan.
It seemed that for about an hour his breathing got very fast and loud then he transitioned into deep heaving/sucking for air. His pupils were not visible but eyes were open. It was absolutely an awful thing to watch. I suppose he was comatose at that point but again I am not convinced that he was not in extreme pain. I was tempted to put a pillow over his face to smother him just to release him from what I projected as him having pain. I did continue to tell him to find peace, etc. and climbed on top of him so he could feel my presence to safely make that step.
I know each experience is different. When I witnessed the death of my grandmother, I recall some breathing difficulty but nothing as violent as my sweeties.
Sure it's over - I need to let go and not blame myself - but one of the many reasons I return to this board is to learn that my experience is not so unique which then comforts me. I keep googling and do not find any reference to the type of experience I had.
By chance, I saw your avatar name on this spot this afternoon.
Hmm... For some reason, I usually do not come here. I guess because I feel I have not "lost someone." ... I understand what it means, but it is hard to wrap my heart around the word "have lost someone." I do not believe in either heaven or hell... I believe only on the eternal memories of the heart. My husband is my immortal beloved. Immortal in my heart...
Google: forensic pathology... it might give you some scientific answers.
My husband's last few hours still haunt me also... On Thursday, it will be two years... Today, I was on the floor, on the same spot where he died - sudden cardiac death on that fateful morning. I was kissing the floor. Feeling his presence. Talking to him. Crying. Sobbing. I was asking him for forgiveness even though I know rationally that I was a good care-partner... I continue to search for answers. To what? Who knows!... And at the same time, I have accepted his last breath. I keep hearing myself saying to him, "You are dead now. Your body is gone for ever. I am your widow. Isn't that something... Reality, eh?"... For me, it has been difficult to accept the shock of "nonexistence"... The meaning of zero... He was cremated... He lives only in my heart.
Dear e-friend, this is your time for mourning and for grieving. Do it deeply. Your way. Hopefully, you will find your own answers, in due time... Right now you are in-shock. Your beloved's death was sudden. Keep talking to your beloved sweetie. It could help soothe your mind. And comfort your heart... Yes. Let his love for you be your solace.
A difficult time ahead... For some of us, terribly difficult... It is easier, for others... There is no "normal" way. There is no right way. There is not specific frame for the length of time for grieving. Experts speak of the different stages of grieving... Grieving is a process. A very personal process. A process that is uniquely individual.
Hugs. And my tears with your tears.
I'm very sorry for your loss.
My mother was on Hospice and died at home. She had congestive heart failure as well as dementia. The day she passed she took a sudden downturn and died at 6:00PM.
Although the last 20 minutes were peaceful the rest of the day was a nightmare. I thought we were prepared for anything since we had hospice, but I don't think my mother was free of distress that day.
It got so bad I kept everyone out of the room and called hospice multiple times, as well as my sister who is an ER nurse. It was she who told me how to deal with the pulmonary fluid that was flowing out of her mouth.
I have assisted several people passing and I've seen peaceful and difficult deaths.
My mother passed in August. The terror of that day is not in my mind as it was the first 3 months or so.
I have to believe the discomfort of dying doesn't follow the person who has passed.
Now I think of her smiling and laughing.
I hope you find peace.
Nothing you are talking about happened here. My husband's death was calm with me and his daughter at this side.
It is still a vivid memory that seems to linger. Still waiting for all the good memories to take over.
I wonder if reliving the actual death is beneficial. I know I try to think of something else when it comes to mind.
Thank you for responding. I realized that there were some significant facts I left out thinking that "everyone" read my posts on the spouse board. My sweetie was on morphine drip at the time, scopolamine patch and they injected Ativan into the IV. The floor had a palliative care person but since it was the weekend they had to page the on=call person before taking any steps to increase meds, etc. The cardiac charge nurse was almost thrown out of the room by DIL, I was ready to tell him to shut up, since he was talking about Rich as if he wasn't there. we were very careful not to do that.
One of the motivating reasons that I post on this site is to release euphemistically, rather dump, what's blowing my mind. I find that once I write about my experience, thoughts, fears, angst, etc. I feel better. It's a purge. I can go on with less obsessiveness over the particular concern, most times.
I stopped going to talk therapy around a year and a half ago. I felt my therapist "betrayed" me because when I discussed leaving my sweetie prior to diagnosis she was supportive, as she should be. When I learned he had dementia I felt she should have caught that. Now that's absurd, He wasn't her patient. Plus her hours were after five and with sweeties schedule and my fear of leaving him alone at home, combined with my participation here, I felt okay with stopping. But I think it's time to restart and reconcile my feelings with her.
I never thought I would get past poop incontinence but I did. One of these days I will believe rather than just tell myself, that my sweetie took his last breaths with the same fervor he devoted to his science.
Another thing of concern to me is that we have dear ones with dementia who read the forums....all are open to everyone. Some posts could be extremely frightening to them and really also to a caregiver who is just looking ahead. I know I would be horrified.
Yes, I do know I do not need to read things that are upsetting
I apologize for my posts, I'll delete them. I think I was maybe trying to find my way through these feelings, maybe I need to work on that more privately.
Hi, there. I'm so sorry to hear about your husband's passing.
I was very fortunate as my husband passed away in his sleep, nice and cozy in his bed. Dickson had pneumonia for the second time, and we decided to keep him in his room rather than bundle him up during one of those nights when it was 2 degrees outside, and transport him to the ER. It was a difficult decision, but one I knew he would welcome.
I think it can be very common for people to experience many of the symptoms that your husband experienced toward the end of his life. Over and over again I've heard that people are not in any pain when this occurs. You can post on the Caregiver's forum and ask Stephanie Z to comment on your experience. She is the Director of Nursing at a facility and is very experienced.
And who knows, whether a person is going quietly or experiences changes in body temperature, heart rate, and breathing, they may actually know that the transition is happening for them and are welcoming this event. Buddhists believe that it is important to have a "good" death, one where the person has no anger and where the mind can easily transition from one nest to the new nest. It sounds as if your husband was able to accomplish this.
We can spend the rest of our lives with "should have, could have, and would have". I'll bet that everyone on this discussion board is angry with themselves from time to time for saying something unkind, or not responding fast enough to a need, or just thinking that we weren't the best caregivers for our loved ones. We cannot let this happen as it is a waste of time and just a vicious cycle of sadness.
Hugs and please take care of yourself, Debra.
I debated whether to post this topic initially for many reasons. I didn't want it to resurrect difficult feelings and thoughts. I greatly appreciate everyone's responses. They highlight that as my sweetie would tell me, there is more than one way to do something when justifying why he didn't do something "my" way.
So how do we prepare others who follow in our footsteps? Frankly, I was not prepared for what I experienced but like I said in another post, this was his way. I guess I need to respect and accept that.
When I was a little girl, my mother learned that her best friend committed suicide. My mother was sitting on the couch. She kicked her legs and screamed so loud and sorrowfully then broke down in emotional tears. I had never seen her like that before. That was a haunting experience that I have never forgotten. I didn't do that when sweetie passed. At one point I did raise my voice prior to his last breath when I said something about the neurosurgeon who did not properly diagnose him so we could have been prepared for the development of symptoms and prevent the falls that led us to where we were. I don't know who, but someone in the room tried to calm me and rubbed my back gently. It worked.
I don't know where I'm going with this. Just babbling for now.
Dear Agent 99,
I have not been on this board for about a week. I am so sorry to hear of you lo's passing.
Yes, the breathing is normal for many. The medical term is called chain stoking. The breathing will increase with difficulty and in rate then taper off to where they do not breath for what seems like a long time. Jerry, too, had this for about a hour or so.
Jerry had the "death rattle" and I informed the nurses who dismissed it as nothing. As a RN, I knew he was getting closer to the end. The rattle is when the person who is passing can not swallow the thick mucous that is in the back of the throat.
Yes, it is terrifying and very disturbing to those that are watching. However, knowing your husband was on morphine and his pupils were dilated so you could not see them, I can assure you his body was there, but his spirit was not. As you said, he was probably in a coma and could not feel anything. Regardless, if you are a believer or not, (I am), the drugs would have had him so "far out of it" that he would not have felt any discomfort or pain.
I believe, that by the time the body is at this stage, the spirit has left and is making it's journey to a more beautiful, peaceful life. I know when I was with Jerry, and he was passing, I could feel his spirit. It was a very calming and peaceful feeling. I believe with my whole heart that he was passing and leaving this world, then his body passed.
Please, do not blame yourself for anything. You were a great care giver, friend and spouse to your lo. He knew that.
Big, giant hugs,
I haven't posted about this yet but the posts from the rest of you are helpful.
Thank you for sharing.
Someone elsewhere acknowledged that our minds (normalcy) think about, feel guilty or ruminate about the day of death or the hours or experiencing or witnessing the death. It's odd how the mind does it without our conscious choice.
I don't think that you should delete your post. This place is for everyone that choose to be here. The connected was designed with you and me and others in mind; the good, the bad, and the ugly. My Mommy left me on Dec. 29, 2015 while I was at Bible Study, oh I often think I should have missed that Tuesday night Bible Study but that is what she taught me from childhood to love the Lord and love the Church so some how I think that somewhere down inside of her she knew that I wasn't there.
My first time on this thread....it's only six weeks since my Ron left me. Tomorrow is his birthday and at the moment I'm a mess. I went out today to buy furniture for my new home, did get some, but had a bit of a meltdown in one shop...what a stupid thing to do today
Ron had the "rattle" a few days before he passed, but, because he was on palliative care...final care here in Australia......the nurse put him on meds to stop it, so he was quiet and peaceful when he went. We weren't there, but I arrived about 5 minutes after he went and spoke to the nurses. He had someone with him obviously, because when I got there he was still warm and had colour in his face, but they had prepared him, and he just looked so peaceful. No more confusion, no more dementia, a lovely final memory
I just went through what you describe a week ago. It was really hard to see and hear the rattle and so hard to forget. My mom was at the hospital and then on hospice at the hospital. I had read about the dying process but going through it is so hard. I don't believe my mom was aware or in any pain at all since she was on medicines and it was just the process of the body.
Wishing you peace.
I watched Joyce die for a week, she was very still with labored breathing, eyes closed and very hot to the touch. Just when I thought it would never end she drew few short labored breathe and I thought the end had come only to see her take one final breath a huge heave and gasp then it was over.
It's been 2 years and I am still haunted by the final moment
Take care, Leland
I helped with my mother in law in hospice at our home and she died in October. The morphine helps slow down the breathing and they aren't in pain. For one who was diagnosed with EOAD a few years ago I can say at least they aren't in prison any longer. Consider their death a blessing! Not knowing when I will be in this stage of life is at this time difficult for someone who has always been a control freak! I do not want my family to have to see me or have to care for me in this state so the sooner I go the better for everyone. I am not suicidal I just don't want my family to have to life in this prison with me
I am sorry for your loss.
When my dad was dying, my 3 siblings remained by his bedside for two days.
At 11:00 p.m., my brother wanted to talk with us about funeral music. We left his bedside to go to the dining room where the computer was (dad was in the living room and rooms are open).
Two minutes after we left, we could hear that dad's rattling noise had stopped. He had died.
I believe that dad wanted to die alone---and he chose to 'protect' us from seeing him die.
I've heard that people can 'choose' when to die. I believe it.
Maybe your husband wanted to spare you, too, as his gift to you??
I believe it too. I sent my mom to a NH for a 5-day respite stay. I was concerned about how I was going to continue to take care of her alone when she returned home because she couldn't walk nor could she even stand by herself or even with assistance. I was seriously thinking about placement because caregiving not only took a mental toll but a physical toll as well. A half an hour before she was scheduled to return home, she died. In my heart of hearts, I believe she chose to die there as to protect me because she knew I wouldn't be able to handle seeing her die. Although I feel guilty for not being with her when she died, I think it was her gift to me.