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Unless it is a palliative surgery to make LO comfortable why prolong the life of someone with dementia?
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Reply to Hothouseflower
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olddude Jan 25, 2024
You nailed it right on the head. What the hell is the matter with these doctors?
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My husband, now 87 years old, had hip replacement surgery in December 2016, done under general anesthesia. In recovery at the surgery center it was obvious that something was seriously wrong--he was delusional, hallucinating and exhibited psychotic behavior. He was also extremely aggressive and combative. He was not like this pre-surgery, although he had been showing signs for about a year of mild cognitive issues. These conditions did not abate during his brief stay there, yet he was discharged home to my care. Anticipating challenges beyond my capabilities and our two-level house, I'd hired a caregiver to meet us at our house and provide support for a period of time. That lasted exactly two hours. After my husband attempted to push both the caregiver and me down the stairs I had no choice but to call 911. They arrived en mass and determined he needed hospitalization, so he was transported to our local, general hospital. He ended up being there for nearly a month, undergoing what could only be seen as experimentation with all manner of scary drugs--anti-convulsives, anti-psychotics, anti-depressives, anti-anti, etc. Nothing worked to calm him down, and I was required to provide 24-7, one on one companion care during his entire stay. I covered 12 hours of the clock, but talk about expensive! And the abuse he inflicted on these people kept any of them from returning for a second shift; I was in hiring mode 100% of the time. I pleaded with hospital staff to have him transferred to UCLA for psychiatric care with professionals familiar with this kind of situation, but was ignored. Finally, out of sheer desperation, I demanded that he be discharged to me, and thus began a years-long semi-recovery. I immediately engaged the services of a psychiatrist and neurologist. And they guided me on weaning him off the narcotics. After about two years, we reached a better place, but it was far away from where we'd been pre-surgery. After a few years of manageable chaos, husband's condition and behaviors began to erode and we were back to the post-surgery state of affairs. So, in mid-December 2022 husband moved to a memory care home in our city--probably the finest available. That lasted only 30 days, and on the second day I was informed that he was incontinent (this was a first) and needed boatloads of adult diapers. A few days later he needed a wheelchair (he was totally ambulatory when he arrived) During the 30 days I received 10 middle of the night calls about him falling or acting out aggressively including hitting and kicking staff and biting another resident. This resulted in 4 EMT visits to the memory care home, 2 trips to the ER and one hospital admission. I won't even spend time telling about the bedlam he caused in the ER and patient wing; again I had to provide 24-7, one on one companion. When he did return to the memory care home, the condition for staying was that he would have to have 24-7, one on one companion. This would cost me an additional $20,000/month on top of the $12,000/month room and board ($32,000/month total), with a minimum 15% annual increase. Too rich for my blood, so I ended our contract and brought him home. His continence never returned nor did his previous mobility. Mid-2023 I finally hired a weekday, daytime in-home caregiver, which has made a huge difference, but still I am left with two ruined lives and huge expenses not covered by any insurance.

My hindsight: If we had been advised that major surgery with general anesthesia for someone with underlying (even undiagnosed) dementia is highly risky, I think we'd have elected to skip hip surgery and use painkillers instead. The price we've paid (physical, psychological, emotional, financial) is incalculable. As we start year 8 of this living nightmare, I regret our decision every day and am bitter and angry that the legal and medical professions won't recognize that prolonging the life of someone with this terminal illness is inhumane.
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Reply to SuperWifeNot
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geddyupgo Jan 25, 2024
So sorry to read of your experience. Vast sum of money spent and your life in a bit of disarray also.
Wishing you peace on this very difficult journey.
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I will tell you our story...My mom was acting strange before she had her knee replacement, but we did not have anyone in our family with dementia, so it was never on our radar. We just thought she was being contrary...plus at the time she was not old...still in her sixties. After the knee replacement, all of those strange actions quadrupled and were amplified. Now she was getting lost while driving and seemed overwhelmed with every little thing. We then had her tested and found out she was in moderate stage dementia. My mom is now 83 and in a locked down, Medicaid accepting memory care. I know she would not want to live this way, so if she had some health scare and surgery was the only fix, I would not put her through that. I would not take extra steps to extend her existence with this horrible disease. She has suffered enough...we all have. I do not think the anesthesia from her knee surgery caused her dementia, but I do think it worsened her symptoms.

I don't know the details of your situation...age of family member, stage of dementia, severity of surgery, etc. I feel like all of those things are important when making the decision. Bottom line is that dementia and anesthesia are not friends...
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Reply to Jamesj
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My husband was in a similar situation during the pandemic. At this point, he had had vascular dementia for five years. Although his surgeon felt surgery was indicated and high risk, he felt that my husband would be very confused and the experience traumatic. Since hospital visitors were not allowed during the pandemic, my sons and I decided not to put my husband through the procedure. My husband passed away recently and the procedure was never performed. My sons and I feel we made the right decision.
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Reply to Grannie9
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My husband (70), who had at the time mild (now moderate) cognitive impairment and frontotemporal dementia, was encouraged to get heart surgery to replace a valve and do some other work at the same time three years ago. He would have had to be put asleep first for the tests and then again for the surgery. He was (and still is) capable of making his own decisions and, after reading articles to him about what happens to folks with dementia who are put under anesthesia, he decided not to get the heart surgery. I told him if he got the surgery, he'd probably eventually be living in memory care because of his repaired heart. His thoughts on the anesthesia were, "I've already lost so many memories, I don't want to risk losing more, especially so quickly." I'm glad he chose to not have the surgery because I honestly don't know who he would have been afterward.
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Reply to graygrammie
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cwillie posted you to a link that will take you to the most common problem we see posted, that being problems due to anesthesia. This is something that during my long nursing career I saw over and over again, and that MDs denied.
As I never saw the patients after hospitalization I never knew whether or not the patient improved once in home environment.
Let alone anesthesia or NO, we do see often that a person with some level of dementia becomes very much worse in hospitalization, or in any change of their habitual norm.
You have then also a debilitated and ill elder who is exposed to everything from very bad nosocomial infections such as pneumonia, other bacteria that are resistant to antibiotics, and you have a recipe for disaster right there.
Now add on that nutrition and healing is worse in the elderly, skin is at risk, and blood clot disorders are often lethal?
You are truly looking at recipes for disaster all the way around.
It is best, if you can, to avoid surgery, certainly of any elective kind.
Your MD will discuss ALL OF THIS and more with you if you ask him/her.
Best of luck.
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Reply to AlvaDeer
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Once my mom hit a certain age, her doctor said that no surgeries should be done. Mom and I both agreed with this decision.
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Reply to NeedHelpWithMom
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What type of surgery are we talking about? For anyone your wifes age the anesthesia will effect them. At 65 my Dad was operated on for a damaged valve. He told his doctor he had lost part of his memory. Dr told him the longer your under the more memory you lose as you get older.

For your wife anesthesia may make her dementia worse. It does werar off but seems to take longer when we r older. Being in the hospital may make her worse. Its called Hospital Delirium. People get it in Rehab too.

So depending on the surgery, I would think hard about putting her through it. Being in strange places with strange people may make her anxious and more confused. My Mom wanted no one to touch her especially male nurses. And is Rehab going to be needed. Hard to work with someone suffering from Dementia who can't learn.
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Reply to JoAnn29
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I can 100% agree with other comments made about undergoing surgery. My mom had hip surgery when she was 75 and another at 78 and lost her mind afterwards. I am 64 and am now terrified of getting surgery that could possibly help my severe back pain. After going through this nightmare of taking care of her I would rather die than be like she is. I also have no one to help with my mom and I have no one to help me either.

I have been dealing with this disease with my mom now for 7 long years. Looking back I wonder if she was already in stages of it prior to the surgery, but was hiding it. She always had notes everywhere. After the last hip surgery it was obvious she had issues. She is actually in better shape physically than I am, but her narcissist personality is still there. She is like dementia on crack and it has affected my own health in so many ways that I wish I was dead. She is delusional, makes up crazy stories, accuses everyone of abusing her, she is paranoid, mean, and will not shut up or sit down. So no way would I ever recommend anyone to prolong this agony.
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