Lewy Body and weight loss

This is a difficult situation and I have such compassion for your challenges. It's very understandable to have concerns about the procedures and the use of propofol for your husband, especially given his condition. While I'm not a medical professional, I can suggest a few things you might consider:

1. Discuss with the Doctor: Since you've already consulted with the doctor at Mayo Clinic and he acknowledged your concerns, it might be helpful to have an in-depth discussion with your gastroenterologist about the potential risks and benefits of the procedures. They can provide you with more specific information tailored to your husband's situation.

2. Medication and Preparation: You could inquire if there are alternative medications or approaches that might be better suited to your husband's condition, given his hunger-related challenges and his stage of dementia. There could be ways to help manage his hunger during the preparation period.

3. Seek a Second Opinion: If you're feeling uncertain, it might be worth seeking a second opinion from another medical professional. They might provide you with a different perspective and alternative recommendations. Consider getting your neurologist’s opinion as well.

4. Weight Monitoring: Continue to closely monitor your husband's weight and overall health. It's important to ensure he's stable and not experiencing significant fluctuations.

5. Consider Risks and Benefits: Assess the potential benefits of the procedure against the risks and potential challenges, particularly in relation to his dementia. This can help you make a more informed decision.

6. Support and Information: great job reaching out to this support group. Keep reaching out to support groups or online communities for caregivers of individuals with dementia. They might have firsthand experience with similar situations and be able to share their insights and advice.

Remember, making decisions about medical procedures for a loved one with dementia can be complex. It's okay to take your time, gather information, and consult with medical professionals to determine the best course of action for your husband's health and well-being.

If you are like me, these type of decisions create all sorts of emotions, including guilt and anxiety. that can be difficult to process. Are you seeing someone to help you navigate your own experiences?

Sending you a huge virtual hug of support and compassion. Keep us “posted” on your journey. Many of us will be thinking of you.

Kim

@teacher502 You’ve really brought up a great subject for discussion. I found this good article from National Institutes of health that discusses age and possible dementia when planning for a colonoscopy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6774261/
A questions you might want to ask the gastroenterologist is ‘why’.
Why is this the only way to see what’s wrong?
What is the benefit? How are you going to give him the prep?
If you(the doctor), find a problem, are you going to recommend treatment including surgery? What is the benefit?
As a nurse working on a cancer unit, I faced this problem many times. When your husband is calm and makes sense, ask him what he wants. I’m sorry —this is such a difficult topic. If you are part of a group, ask them.
Will you stay in touch with us?

After much deliberation and getting opinions from medical and others with experience with LBD and other MCI's, I have canceled the colonoscopy/endoscopy. The other doctors did not see this as a necessary procedure at this stage of LBD. I thought about the stress on both of us trying to get him to take the awful liquid, not being able to eat for 24 hours, repeated visits to the bathroom, the actual procedure and anesthesia, and the unknown of the after effects of the anesthesia......there were just too many unknowns and I didn't feel that it was needed in our already chaotic, unpredictable life. The doctor has the easy part......my hubby and I have the before, during, and after to consider. Thank you for all of the excellent advice and the priceless concern. It really meant a lot to me and helped to make a decision that has given me peace. I know it is the right one. Hugs to all!

@teacher502 I respect you for making such a difficult decision. But, I do feel that I was too abrupt and unkind when I responded to you yesterday and I’m sorry. The discussion brought up so many memories for me when I had to say no to my dad’s doctor. I was my dad’s MDPOA and my mother asked me to talk to the surgeon and make a decision. The surgeon told me that he wanted to amputate both of Dad’s legs because of poor circulation in his feet. I said absolutely not. Dad was 93 and a retired army officer, and he would never accept this surgery. We argued for a bit but I won out.
I wish you and your husband all the best. How lucky he is to have someone like you to care for him! Becky

I thought your reply was powerful, helpful and very considerate....no need to apologize at all. I am grateful...thank you! Jan

I am so glad to read this. I just came up on your question (albeit late) and know from my own experience with my husband's LBD that Abraham is NOT your friend when dealing with dementia. He's late stage LBD now after having been originally diagnosed early onset Alzheimer's four years ago at age 54. He's lost about 75 pounds now in 7-1/2 months and has less and less interest in eating, despite doubling his appetite stimulant Rx. My husband's been given roughly six months now if he continues at present rate of decline. I hope you end up with more time.

Anesthesia, not Abraham. Sorry about that.

I am so sorry for your journey, and pray for many moments of peace for both of your hearts. Thank you for writing this - it means a lot to me that in the middle of great pain you took the time to reach out to me. May God Bless you and your family in this last leg of your journey.

Very wise. My husband, 92, was dx'ed with MCI IN 2019 and that is progressing to mixed dementia, albeit not rapidly. This summer he had cataract surgery and before the first surgery I spoke with the very kind and compassionate anaesthesiogist who assured me he would be given the very least amount of propofol to get through the very quick surgery. She was right: when I went to recovery, several minutes after surgery was complete, he was alert, not groggy and cheerful. For the second surgery two weeks later I again spoke with the (different) anaesthesiogist and he assured me everything would be the same and not to worry. But when I when to recovery, he was groggy, confused, and it took a long time to discharge him because he wasn't coming out of it. When I later read the online notes about the surgery I saw he'd been given fentanyl instead. 😡 His dentist wants him to proceed with a lot of invasive and punishing dental work and instead we've changed to a dentist who has presented us with a more appropriate procedure. (Our dentist had proposed $10,000 bridge work, implants and root canals. ) From my experience, you've made the right decision.

My LO was diagnosed with Lewy Body in February 2020. The doctor at University of Utah explained that he should not purposely lose weight. A time would come when there would be a huge weight loss and he needed a buffer. That has not happened yet. But he had his last colonoscopy 2 years ago. We celebrated that it would be his last. With LBD, you celebrate the smallest achievements! Jan in Idaho