How to get ready…

persevere · July 2

I’ve talked to 3 separate members of my hospice team individually. They all believe my DW has maybe a year plus or minus. One nurse mentioned that some/much of it will be based on decisions I will have to make. For example when to treat a UTI and when not to. She said we are approaching these decision points. Looking for experiances. I know someone recently posted details of the very end. I’m looking at when they become imminent. How you do you do the mind shift from care and feeding to comfort and letting nature take its course. And how do you communicate your decisions to family or in my case to my adult children. And what physical demands beyond what I’m already doing am I in for? The nurse mentioned that sepsis is the most comfortable way for them to pass.

Sweetwater · July 2

Rick4407 · July 2

Hard choices!! I kept my DW at home through stage 8. My decisions were pretty much "quality of life" being the deciding factor. If something made her more comfortable we did it. The only meds I gave her were for pretty much that, for my DW it was seroquel. It reduced her anxiety, delusions, etc. Projecting stage 8 is impossible. My DW had total incontinence about 6 months before passing. Her appetite started decreasing about 3-4 months before. Difficulty with mobility was about a month or six weeks before. Eating very little and only with her fingers was the last 2 weeks. The last week or so, she seems to have difficulty relaxing when sitting. The last 2-3 days she did not leave her bed more than 2-3 times. Communication was limited the last month or two and almost non-existent the last week week. Her last 2-3 minutes she seemed to gain insight to where she was and that she was dying. Her last words were just a grunt but her eyes were saying "thank you, I love you". Very hard times. The memory from 3 years and 2 months ago, still brings tears to my eyes.

I should add that living without her was harder than taking care of her. It takes a while to recover.

persevere · July 2

https://alzconnected.org/discussion/comment/276368#Comment_276368

Thank you Rick. Very insightful.

jgreen · July 2

https://alzconnected.org/discussion/comment/276368#Comment_276368

God bless you @Rick4407 You were a great caregiver and loving husband.

Thank you for your candid description of your experience in stages 7 and 8. I understand every person with this disease is different, but at least I have a sense of what I might expect.

Hugs! 💝

Michele P · July 2

https://alzconnected.org/discussion/76448/how-to-get-ready

We had my mil home through stage 8. There were not documents in place to stop care for a UTI or a feeding tube. She lived a year with constant trips to the hospital for UTIs. There was no quality of life. If she could have talked, my mil would not have wanted any of these interventions. You have to live with the decision that you make. Do what you can live with by try to not prolong suffering for both of you.

notequipped · July 2

I recently went through this type of situation with my Dad at the end of his life (not due to dementia but due to hypoxia he was not able to participate in much of the decision making process. There were ups and downs along the way though.). My Mom is the one with dementia. My top priority was always his comfort and if/how treatment would affect his quality of life not just in the short term but down the road. Due to the acute nature of what happened, my Dad was in the ICU. I requested a family meeting with the Dr., my Mom, my kids and their spouses where we very openly discussed treatment goals, possible outcomes and what we were and were not willing to do. I did not want any intervention that would make him uncomfortable with very little to no benefit in terms of outcome. It was difficult but I felt it was the only way to make sure that we were all in agreement. If you are close enough to your adult children, perhaps you can involve them in the process. Even if you need to do it via Zoom or something. Having a medical professional provide some insight as to what this stage looks like, the types of decisions that may need to be made and the ramifications of those decisions can be really helpful. It was a relief to have such a frank discussion. I think it made it easier on everyone - medical personnel included as they knew that they didn’t need to sugar coat things. Of course much of this depends on your kids. Do they tend to think emotionally or are they more pragmatic? My Dad passed very peacefully with all of us by his side. He somehow managed to very purposefully wink at my Mom about 20 minutes or so before he passed. It was was obvious that he left before his actual passing.

Wishing you much peace on this leg of the journey.

harshedbuzz · July 2

@persevere

The uncertainty can make it hard to plan ahead. That said, I have an elaborate decision tree in my own head as it pertains to my mom who doesn't have dementia.

I found with my dad and aunt; more clarity comes as situations arise. Sometimes the decision is made for you. In terms of explanation, I told dad's judgmental brother that we were prioritizing comfort.

HB

persevere · July 2

https://alzconnected.org/discussion/comment/276394#Comment_276394

Thanks for your input. I think involving hospice in the conversations with the kids is a good option if needed.

How to get ready…

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