My 91 year old grandma went to ER and was admitted due to a pneumonia, the doctors concluded it was aspiration pneumonia due to progression of Alzheimer, she was admitted. She was placed on antibiotics and they said it was working well. My grandma had been in a sleep state in the hospital even though she still ate and opened her mouth when asked to. Make long story short on day of dialysis while prepping her for treatment she bled from her access site and per doctor took 30 minutes to stop the bleeding, therefore, they didn't start dialysis. They called that same evening and said it was time for an end of life discussion. The following day, they allowed me to visit her (bc of end of life visit) and when I called to her it seemed she wanted to open her eyes but she didn't (At home she slept like this if left in bed all day but once you sat her up or took her out she would become awake). I spoke to a young kidney doctor, a hospitalist, and a social worker. The nephrologist had stated the bleeding was a sign of her body rejecting treatment. I had my doubts and thought maybe the antibiotic she was taking was affecting her blood flow, so I asked. They never gave me a clear answer. They just kept insisting that even if she made it through dialysis she would continue to worsen due to her swallowing. I insisted she had been sick for almost 2.5 weeks but her primary care doctor had stated to treated like a common cold. During all that time she had developed thick phlegm and that she had been able to swallow well before getting sick. But they insisted it was aspiration due to progression. They had a way to get to me and make me feel as I was putting my grandma through suffering. I asked what they would do if it was their grandmother and the kidney doctor said he would not continue dialysis as if she happens to bleed again she would immediately pass due to a massive cardiac arrest.
In the past my grandma would *sometimes* bleed at the END of dialysis and would need extra pressure before leaving but nothing serious.
I cant find anything online regarding similar cases to my grandmother's. Anyone else out there who has experienced similarities?
It took 5 days for my grandma to pass upon terminating dialysis, the most traumatic experience in my life. Her gasping for air, even though I gave her morphine and oxygen. I can't seem to get the images out of my head.
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.
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.
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.
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.
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.
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.
Please don’t beat yourself up! You did everything you could. Your mother felt comfortable & loved when she passed away. It wouldn’t be fair to her to prolong the suffering. That’s all they really want…is to pass away at home w/ loved ones & that’s how it happened. Hugs 🤗
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 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.