Concern about potential surgery

jscott · November 26

My DW has a condition that may require a hysterectomy or other type of surgery to correct a pelvic prolapse. I'm terrified that the surgery may accelerate her decline. To this point, nearly 5 years, she has done very well. We are still having a good life and she is happy as am I, although I live every day if fear of the future. She is in a moderate stage and still mostly takes care of her ADL's. She has advanced a bit in the last year but I would estimate that she is in mid stage 4. I can't bear the thought of her going through the trama of surgery and the potential of accelerating her progression. I'm so concerned, any counsel? Have other's experienced a loved one having surgery with good outcomes?

Maru · November 26

First point: will surgery increase decline? Possibly, or she may just experience a temporary change. Dementia patients do not always respond well in unfamiliar circumstances but may revert back to previou stage once back in their familiar environment.

Second point: there are non surgical ways to treat pelvic prolapse that may possibly help. Preventing her from straining during bowel movements, no heavy lifting and using a pessary. As she declines a pessary is not really an option. You can google what that is. And, of course , there is the option to do nothing, which will mean using adult diapers eventually. If the vagina prolapses, she can live with that but sexual intercourse will not be possible and then there will be cleanliness issues to deal with.

If you have to do the surgery, sooner is better than later. Good luck.

TrumpetSwan · November 26

As for a surgery in mid-stage (perhaps stage 4), my mother had a torn tendon in her hip that was not responding to any non-surgical treatment, so she had it repaired surgically. She was under general anesthesia and in a hospital environment for two days. All of the "what-if's" were scary and on my mind.

She made it through the surgery fine. She was however disoriented way more than normal while in the hospital and for approximately one to two weeks after being home. My dad did was worried. She did however return back to where she was before the surgery.

Since that time, mom has had a number of non-surgical hospital stays for various conditions. Each and every single time, it seems the same. She returns back home and sleeps most of the time, is very tired, confused and disoriented for one-two weeks. It has been scary to witness and we question what they did to her. However, she has gotten back to where she was each time after she settles back in at home.

It might be different for everyone. One thing I see that makes her condition way better is when she has someone with her in her room while at the hospital. Her disorientation does not get as severe. Having someone to talk to, hearing a familiar voice, and making sure she gets out of bed by walking down the hall or across the room I think really helps her not decline so much.

It is my opinion that hospital staff really do not know much about dementia, nor are they trained in how to manage patients with that condition, so it is largely on the loved ones around them to fill that gap. I am sure you have put much loving thought into this decision. I will be wishing the best for her and for you.

annie51 · November 26

My DH had hernia surgery when he was probably in Stage 5. I made sure all the health care workers knew he had dementia so they wouldn’t rely on his answers to questions and I also asked the anesthesiologist if there was anything different they could do the anesthesia based on the fact he had dementia - and they said yes (I don’t really know what they did though). When he came out of it he had no idea why he was in pain but they handled it ok. I took him home and he was compliant with the things we had to do (or not do) while he recovered, but he was still very confused as to why he was so sore. But it only lasted a couple of weeks as others have reported and he seemed to go back to his normal after that. I don’t know much about the surgery for pelvic prolapse but my DH’s surgery did not require a hospital overnight stay. If it has to be done, better it be done now. Good luck with this decision - so many decisions become harder with this disease.

dayn2nite2 · November 26

Is the prolapse so pronounced that it's adversely affecting her life? Is the person recommending the surgery aware she is in mid-stage dementia.

I had what is regarded as a very simple hysterectomy due to cancer and I was under anesthesia for about 5 hours. I do not have dementia. I would pause and carefully consider "what happens if we don't do that" and consult with her neurologist along with her GYN/urologist.

jscott · November 26

Thank you for the responses. As for my DW, the prolapse is significant but doesn't effect her life. There is no pain or other discomfort. We have two appointments next week to decide the best path forward. I have made sure that the specialist we are seeing is informed of her Alzheimer's. My first question is certianly going to be, what if we do nothing? At the same time, I only want the best for her. We've been married nearly 50 years and she is the love of my life. I know I'm no different than most here regarding the love we have for our spouse. Once we deal witht the GYN/urologist next week, I intend to consult with her memory care specialist. Thank you

SDianeL · November 27

my Mom had vaginal prolapse and already had a hysterectomy and was elderly. She had a colpocleisis procedure a surgical treatment, which involves sewing the vaginal walls together to hold pelvic organs in place. This is often considered for older women with severe prolapse who are not sexually active.

jsps139_ · November 27

My DH had 7 bladder cancer surgeries since his Alz diagnosis. They were all outpatient and each one was difficult for a few days or weeks due mainly to having a catheter at home. It was impossible for him to understand what it was. Thankfully he has been cancer free for 2 yrs now. He is in stage 6 with his Alz so I doubt I would agree to any more surgeries if the cancer comes back.

We also refused eye surgery 3 yrs ago due to the recovery where he would have to keep his head parallel to the floor for 2 weeks. The entire family agreed that would not be possible, and quite ridiculous to even suggest that for an Alz patient.

There was an MD on this forum awhile back. He was the caregiver for his wife. He once said that there was one word people needed to learn to say at the Dr’s office, and that word is, “No.” His post that day changed my relationship with my DH’s doctor (and even my Dr). I listen to their recommendations, of course, but I don’t always agree to everything they recommend, and I am not afraid to say “No.”

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