Has anyone heard of ending dialysis due to risk of cardiac arrest?

It is common to second guess everything after a loved on dies.

Now to your question, a good family friend had to stop dialysis due to concerns about a heart attack. He had limited kidney function, perhaps 5-15% and is still alive, but is very poorly.

A friend's Dad was on home dialysis for years, then he got lung cancer and it metastasized to his bones, they were breaking and it was excruciatingly painful. He chose to stop dialysis. It was expected that he would live up to 2 weeks, he died at home in 3 days.

Your grandmother was being kept alive in a body with a broken brain by artificial means, just as some have pacemakers that force their heart to continue to beat.

I am sorry you did not have proper support when she died. Please seek out grief counseling and know that your memories of her death will fade and you will remember when she was younger, healthy and did not have ALZ.

I am so very sorry for your loss of your Grandmother. I hope that on some level you can be happy that she had a long life and that you had the benefit of her love, and were able to provide her such loving care.
Mark Twain used to tease that there are only two things we cannot avoid. One being death and the other being taxes. He meant it as a joke about taxes, but the truth is that death is where we are all going. I am 80 now and I like to say that no one will read my obit and say "Oh. 80. She died too young". Or I tease that I have passed my sell by date.
I myself would never have dialysis at my age. It is in fact written into my advanced directive not to give it even temporarily under any circumstance. You can easily look up the statistics of how much more quality time we can get at a certain age by accepting dialysis, and the process is time consuming and onerous with many many complications. As to WHAT complications will occur, that varies much like our own fingerprints.
Pneumonia, in early nursing, was known as "The old person's friend". That's because it would "take" this person into the relief of final peace and rest. I am sorry that the visions you saw of air hunger were so disturbing. I am hopeful you had good hospice personnel to reassure you that the gasping you see is more of a body function reaction than anything else, and that there is little recognition by the patient him or herself that it is happening. When people come out of these situations later there is a total amnesia as to any discomfort or memory of much of anything other than some occ. foggy recollections of voices off somewhere, as though they were in a drugged state. That is even the case for those not receiving drugs.
Again, I am sorry you were so disturbed and so unready for the passing of your loved Grandmother. Nothing but time can wash away those last moments in which we experience such helplessness in the face of the certainty of death. But it will come to a time when memories will lighten and you will remember more the quality times of love you shared.
If you need help with grief counseling do allow yourself to have it.
As a nurse I have witnessed many pass throughout a long career. My own perspective is that now I have ZERO fear of death (though I admit to a lot of fear from the possibility of people making me stay through treatments that to me seem torturous and without much quality in the end. Our ends are inevitable. We lose things one at a time, even to our swallow, to our ability to respond to those we love.
I am sorry for your loss, and dreadfully sorry for your grief. Do find something to help. If grandmother loved roses, then plant some and nurture them. I used to write a journal I decorated, notes and letters to my much loved brother who exchanged long long letters with me any time we were apart. I used collage and pictures to decorate it, told him things I thought, things I feared and worried about, shared things I saw in the day, remembered things of our love lifelong. It was a great help. After about a year I felt the acute grief move from me. After almost two years I am left with ONLY THE LOVE. I will keep that until I go myself. My best wishes out to you.

Ineedsupport32

I am not familiar with cardiac arrest following dialysis. I did sit with an aunt who passed after coming off dialysis and her passing was peaceful in her sleep.
I am very sorry for the loss of your grandma.
Her passing was traumatic. I wish I could erase the recent memories and replace them with better ones when you and grandma were sharing brighter days.

Your grandma was blessed to have you with her.

“A central piece in grieving is the attempt to reaffirm or reconstruct a world of meaning that has been challenged by loss.” Robert A. Neimeyer
Your mind is searching for a different outcome. Your loss is heavy.

I read recently that grief doesn’t go away but that it “finds a place”in our lives. I’m glad you posted on the forum. I struggle with my own grief and your post reminds me that our loss is a part of life and that we all deal with it. Grandma no longer struggles for air. Wishing you peace.

I don’t have a medical background, but my understanding has been that death comes soon once dialysis is terminated. You were also told that continuing dialysis would risk death quite soon from a cardiac arrest. It’s very confusing, but the common line is that Grandma was close to death, one way or another. At 91, that’s a good life, and a quick death is not such a bad thing.

I hope that hospice was involved. If terminating dialysis was the choice, you would hope that they could help the process without the distress that you witnessed.

My own experience is that the images of end of life are always difficult to get out of your head. Sometimes trying to work out exactly what happened, and whether it could have been different, just extends the pain. Don’t dwell on it, just remember better times and happier memories. Best wishes, Margaret.

Dear ineedsupport32 - I am so sorry about your grandma's passing and for the traumatic experience you both went through.

My mother passed away less than 3 weeks ago, I believe from aspiration pneumonia, although we didn't know that on first day she slipped into a coma. On the second day, a nurse came to the house to administer IV, per her doc's order, told us after observing my mom's condition that she should be placed on hospice, and that IV wouldn't do anything at this point. We signed her up for hospice on the same day, and my mother passed a couple hours after that.

Like you grandma, my mother had Alzheimer's and was at the late stage. She had a cold a couple of weeks prior and developed a urinary tract infection. Antibiotics helped but it wiped her out physically, so much so that we had to ask the doc to stop the drug after 5 days. We didn't think her body could take it anymore. Due to the cold, she had a lot of phlegm and since she had trouble swallowing, I think it went into her lungs and cause aspiration pneumonia. My mother was breathing so loudly, I thought it was death rattles, but the nurse said that was likely due to having fluid in her lungs.

I went over in my mind many times, all the maybes and should haves. Maybe she was so weak from the antibiotics that she couldn't swallow, or maybe it was her Alzheimer's progression that cause her not to swallow. Maybe we should have called 911 and had her taken to ER. We should have known that she had fluid in her lungs from the sound of her breathing. We should have had a hospital bed sooner so she could sleep sitting up (bed was order the day before she died). And stupid me even tried to give her a spoon of water here and there thinking her mouth must be dry and that she was thirsty from not drinking and eating all day.

In the end, my mother passed away in her home after 2 days in a coma with her children, grandchildren, sisters and friends beside her. I choose to take comfort in this, and also that she no longer suffered all the terrible and dehumanizing symptoms of a late stage Alzheimer's disease.

ineedsupport32, I hope your traumatic experience will lessen in the coming days and that it will be replaced with peace and the knowledge that you had done all you could for your grandmother, and most of all you will only remember the good times you had with her and all the love you two had for each other.

As a recently retired hospice nurse, I wanted to add a different perspective on the noisy breathing at end of life. Yes, there is fluid in the lungs...partly as she was too weak to cough it up enough to swallow it or spit it out. So that is the cause of the pneumonia, and the cough which gets weaker over time, as she is actively dying.
There are also noises in the upper chest and throat.
Throat can be post nasal drip or saliva that ends up getting pooled in the space at the back of her throat..
Upper chest can sound moist as well.
At her age, the muscles that support the organs for breathing and swallowing are weak, and the nerves from brain to those organs that control breathing and swallowing (and prevent anyone from aspirating food/fluid into their lungs) are weakly connected. With Alzheimers, it is likely those nerves are like a faulty string of lights..on and off unpredictably. So, the epiglottis (flap that covers either the respiratory tract or the GI tract) is sluggish and inconsistent. Air and fluid go in the wrong places.

As she breathes, air moves over these places that are wet, and narrowed.
This movement creates sound waves...often misnamed a 'death rattle'.
Waves of air over fluid in an open space (wind across a large puddle) create movement of the water without sound, as the open space allows the moving air to flow. Inside the body, the moving air is more constricted.

Please try not to feel guilty or have regrets. Every death is different. Every body fails on a different timetable. And the hospital team would not have asked for an end of life discussion if there was a reasonable expectation that further treatment would have helped her in any way.

Even if your grandmother was not on hospice care, contact the hospital and ask for a list of bereavement support groups...every hospice is required to offer them, and hospitals and elder service agencies have them as well.
Your questions are normal ones, and talking about your experiences with others will help you learn more about how the dying process can be.

Extending the life of an Alzheimers/dementia patient who's unable to swallow is the cruelest thing to do, in my opinion, and something I would never do for my own mother who's 95 with advanced dementia now. I do not think the hospital or the doctors 'duped' you into ending your grandmother's life 'too soon', it was time for her terrible suffering to end and for her to be at peace. Witnessing the struggled breathing scenario at end of life is a terrible thing, I know; I saw it with my father who passed in 2015. My suggestion to you is this: when those end of life memories pop into your mind, replace them with happy memories of your grandmother in healthier times when she was laughing & the two of you were doing something together that brought you joy. Remember her in THOSE times rather than during those final 5 days. The mind tends to dwell on painful memories and needs to be redirected AWAY from those thoughts and onto better times so you can allow yourself to begin the healing process.

Under no circumstances should you blame yourself for ANY of what's transpired here with grandma. It was her time to transition and God took her onto the next phase of her eternal life. Many hospice nurses will tell you that 'she' was not in her body during those final days/hours when you heard her gasping for air; that her soul had already transitioned to the other side; it was just her BODY going through the dying process that you were witnessing. She, the essence of who she IS, was watching the entire experience from up above, and feeling sadness for what YOU were going thru. Take those words to heart, my friend.

Sending you a hug and a prayer for peace that God allows you to begin the healing process now.

Modern medicine prolongs the inevitable. I was so lucky my daughter was an RN and I was a member of this forum. My Mom was in her last stage of Dementia when she would not get out of bed. She closed her eyes and never opened them again. I then got the news she could no longer swallow. This is the first sign the body is shutting down. Dialysis is hard on the body especially if 91.

Taking her off dialysis probably did not cause the gasping for air that was the pneumonia. Without the dialysis toxins build up in the blood, you become septic and die from it.

I feel your Grandmother was actively dying. Nothing that the doctors did would keep her body from shutting down. Any extreme measures would have done more harm than good. It was her time. She lived a long life. Be a peace with that. If she was on Hospice, they have grief counselling. Even the Hospital maybe able to help u find a group.

Watching somebody die is not beautiful. Nobody dies with a healthy body (excepts by accidentes or suicide). Your mother had been very sick for a long time. It appears that she finally reached the point of no return. Dialysis wasn't going to save her. Yes, many patients suffer sudden cardiac death during dialysis due to electrolyte imbalance. Particularly those in critical condition. Your mother's death was not avoidable.