Surgery with dementia?

BookBuffBex

I posted earlier in the week about mom reversing her sleep cycles. On Friday she fell and hurt her head and back. She was released from ED as no fractures or anything out of the ordinary in her labs. Returned to AL where she was unable to stand and get herself off the toilet. When I left on Friday evening she was a "2 assist". Saturday seemed OK (found out later that she was throwing up Saturday evening) and about 2am Sunday morning she fell again, was brought to ED where her lab results were completely different and showed UTI and gallstones with gallbladder infection. She was admitted and is being treated with antibiotics. Dr's do not want to do surgery on her because of the ALZ/dementia. She does not report any abdominal or urinary pain.

I understand why they don't want to do surgery, but I'm concerned that she will continue to develop infections due to these gallstones. I know we need a GI consult, which I plan on requesting before she is discharged. I know surgery could advance her dementia; but I'm worried that just leaving the gallbladder leaves a big risk of reoccurrence of infection with sepsis. I guess what I'm really wondering is how do you decide what treatments are worth the risk? TIA

ButterflyWings

Did your mom have advance directives? Or any discussion of what her wishes might be in such a situation?

If I had no prior guidance, I would strongly consider the Dr's opinions, especially if they are advising against something and she is not in pain. What is your mom's age and current AD stage? Clearing up the UTI alone can make a huge difference. It is unbelievable what a silent UTI can do. Glad you found it.

In our situation, based on my LO's age, stage (late), and prior wishes expressed as "no extraordinary measures to prolong the inevitable" in the case of this terminal illness (Alz/dementia), we would pass on gall bladder surgery.

Jo C.

My goodness; what a difficult time this has been with so much happening. Having injured her back, I can understand your mother's inability to rise off the toilet, that would have been painful for her. Having the UTI treated will make a difference in other ways as UTIs can cause severe changes in behaviors, cognition and function.

The likelihood is that she may continue to develop infections and possibly significant pain regarding the gallbladder issue. It is a very good plan to have a GI Consultant see her prior to her hospital discharge and I would not permit her to be discharged without that being done. Gallstones are no joke; they can be extremely serious business and can cause multiple different significant and complex issues; but then so can surgery which would more than likely be done laparascopically.

You will know more and be able to make the decision for what to do or not do when you have all the facts at hand and the GI Consultant's input may be able to help with that. Being that dementia is on the plate, one would have to move very carefully and weigh the possible positive gains against the possible negatives as well as the quality of life issues for each possibility of choice.

NOTE: If it is decided that surgery is not a choice, then it would probably be to your mother's best interests to have her assessed for Hospice services. Hospice can be provided at the care facility level. Extra eyes, ears, hands and pain management focused on her comfort and quality of life with the circumstances that present themselves and support of family would be the Hospice mission. Medicare and other insurance covers Hospice services.

Sadly, there is no crystal ball to tell us what will happen. So; as said, one must weight the alternatives in our LOs best interests. Keeping someone comfortable with what you mother has is the priority issue. If you decide surgery is not the best choice, I again strongly suggest having Hospice come in and assess her for services which would be very helpful for all that is happening now and in the future.

You are a very loving and deeply caring person who is doing the very best that can be done. There is no perfection in this; only the best that can be under the circumstances with the challenges at hand. Once you have heard all the facts and information from one or more specialists both GI and surgical and perhaps even if you wish to consult her dementia specialist, then you will find it easier to make your decision. There is no right or wrong; it all has risk and you are doing the best that can be done leaving no stone unturned.

Let us know how you are doing and how things are going; we truly do care and we will be thinking of you. With warmest of thoughts being sent your way from one adult child to another,

J.

BookBuffBex

@Jo C. Thank you! And thanks for the reminder about Hospice. With so much going on I forgot that is an available resource that I can coordinate through AL. I appreciate the advice and support.

Jo C.

Hello BBB; thinking of you and your mother and wondering how things are going.

By the way; "Book Buff," that is an intriguing name; I am a person life long from childhood that loves and must have books; I continue to be a big time reader. We had no TV growing up and therefore, the library became a dear friend which was a real winner in so many ways.

J.

BookBuffBex

@Jo C. Thanks. She is still in the hospital but surgery is not being recommended. She was doing much better today and is insisting that she is being discharged. She keeps calling me & my dad to come get her. We have both blocked her for the night to preserve what is left of our sanity.

And yes, I am a HUGE book lover! I did grow up with TV,radio,etc, but I love words. In another life I would have become a librarian. I become completely immersed in the story when I read. My love of books and reading is something I learned from my mother, who sadly no longer reads but remembers that she loves books.

Jo C.

I am glad to hear your mother is feeling much better. Sage idea to wait to transfer her. I hope that things will settle nicely when she returns to her home at the ALF.

Have to smile - I have often said I should have been a librarian. If you blindfolded me and put me into an unknown place, I would immediately know if it was a library by the scent of the books. Love that smell. I too find myself immersed in whatever I am reading, and read pretty much every night and occasionally shorter times in the day. If I did not have a book I would feel very out of place. Prior to Kindle, I used to spend a fortune on books at Target or Barnes and Noble. Now I spend a fortune at Kindle. Nice to have that to get a book anytime, but I still love best to hold a real book in my hands.

I have always read to my grandchildren when they visited each summer. I still have two baskets of children's books and miss having a child to read to. One thing that makes me happy is when my now older grandchildren tell me they love to read because I always read to them and how much they loved that. Of course, they got books sent to them and sometimes tucked into other gifts for special days.

Secret: When I was working, as an Administrator of several departments at a hospital, if it was cold and raining, once in a great while I would ensure that the departments were covered and would stay home for a day. Husband at work; children at school; me with the fireplace lit, curled up on the sofa with a good book and a warm afghan listening to the raindrops on the window and reading. Heaven. (Even better if I had a bag of peanut M & Ms.) My mother was a reader too and she was the one who got me to the library when I was about five years old and I was enchanted. I read well from a very early age. Though I can read anything, my favorite is a good fiction book. Just takes me away.

Also enjoy writing but I do not do that as much any more. Love the written word.

Glad to meet a fellow bibliophile/bookworm.

J.