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LO passed after difficult decision
Posted: Tuesday, December 28, 2021 9:35 PM
Joined: 12/28/2021
Posts: 1

My terrible Christmas:
77M, stage 5/6.  Diagnosed in 2015 but had cognitive decline since 2012ish. 
On 12/18/21, went to ER with diverticulitis and a rupture in colon. The options presented were: major surgery with colostomy bag, "Hail Mary" option was to use antibiotic treatment along with a possible abcess drain, or enter hospice care as he would be killed by sepsis/infection.
The family decided that night that they were not going to do the surgery.  If making it out of surgery with no major progression of the dementia, and getting through rehab/recovery, the colostomy bag would play a huge burden on his seemingly short timespan before reaching late stage. Last time he was hospitalized he frequently tried to rip out his catheter and IV tubes, and we know he'd have been confused by the bag, fidgeting with it, make him need constant care, and reduce his quality of life.

 We tried the hail mary approach of the abcess drain and antibiotics and for a day it almost worked, with the doctor telling us there is a chance the rupture could wall-off and he could recover.  However the next day he took a turn for the worst - he started vomiting up frank and was in immense pain with no luck on strong pain medication.  Sundowning was also setting in hard each night as he was climbing out of the bed not knowing where to pee and security guards/ nurses would have to get him back into bed and then sedated with heavy doses of pain medication.  These awful events predicated what his life would likely look like entering a nursing home with late stage Alzheimers and a colostomy bag that he wouldn't know how to use.

It can be noted our LO father suffered an ill fate with Alzheimer's back in the late 1980s early 1990s before he passed.  It was an immense burden on the family as he declined and could not take care of himself, wandered often, got loud and violent, stopped speaking english, and became a shell of his former (great) person.  LO had expressed throughout his years he did not want to ever end up like his father with late stage Alzheimer's, and also had in the living will to not do invasive treatments like this Surgery if he was in his mental state.

Therefore, the family stopped treatment and he entered EOL care in 12/22.  This involved a continuous morphine drip for 5 days until his breathing slowed and eventually stopped and he passed 12/27.  I like to think he was not in pain during those days, but they were immensely difficult for us to watch (we rotated shifts to be by his side 24/7), as he became weaker and weaker and less responsive.

This was a horrific situation for my LO and my family.  

I do not know what to gain from this post, other than I would not wish any of this upon my worst enemy.

Needing support during tough times.

Posted: Tuesday, December 28, 2021 9:55 PM
Joined: 7/30/2013
Posts: 6066

I'm so sorry for your loss. I had a similar situation with my husband in February of 2020. He was already on hospice for advanced Alzheimer's disease. One morning, he suffered a seizure and fell. He managed to break both of his shoulders. The right side was far worse than the left. In the hospital, the orthopedic surgeon half-heartedly suggested shoulder replacement surgery. I declined. I didn't think that he would even survive such a surgery. After a few days in the hospital, he was transported back home by ambulance. Hospice was wonderful. They helped clean him and had him on a lot of medications for pain and to keep him calmer. He died four days after he got home. He was never really aware of anything that was going on. I was just happy that it was over and that he is in a better place now and no longer suffering. I would recommend grief counseling. I started seeing one several years before he died. She helps me a lot.
Posted: Friday, December 31, 2021 2:26 AM
Joined: 6/12/2016
Posts: 2479

I'm very sorry for the loss of your Loved One. I believe you and your family made the most loving decision by not having the surgery. It was a loving and kind decision. You are not alone, we are here for you. Please keep posting, let us know how you are doing.
Posted: Sunday, January 2, 2022 11:17 AM
Joined: 4/1/2014
Posts: 5213

I am sorry for the loss of your dear father. Thank you for sharing your story because it will help other people looking for experiences with Alz, death and hospitalizations. It's never the right time to lose a parent, but we all do, so many of us understand the big hole in your heart when they are gone.

 I hope you will recover your joy of life quickly. It takes some of us longer than others, but we all do, mostly likely from the advice our parents gave us as we were growing up. They wanted us to have a good life, a happy life, a full life.

 I wish you continued healing and hope you'll come back often to tell us how you are doing. And we are here for you if you have set backs, too.Take good care of yourself and your family.


Posted: Tuesday, January 4, 2022 8:30 PM
Joined: 10/10/2021
Posts: 1210

My condolences to you and your family on the loss of your Loved One. I can relate to what your loved one said about never wanting to go through what his dad did. My husband has Alzheimer’s, he had an older brother who had Alzheimer’s, my husband said then he never wanted to go through that and he sure didn’t want to die the way his brother did. And here we are now, we too have medical power to not do anything to prevent dying. I pray I don’t have to use it, but I will for his sake. My prayers are with you and your family. God bless you and your family.
Posted: Wednesday, January 5, 2022 10:21 AM
Joined: 12/4/2011
Posts: 21306

Thinking of you....