Long stage 7

CLane

Hello all, I am new here. My dad is in end-stage dementia, stage 7, and on hospice in a care home. However, he is doing extremely well. This confuses me. He is incontinent, non-verbal, has mostly lost the ability to swallow correctly and has had aspiration pneumonia twice in 6 weeks. I just made the decision to put him on hospice on father's day of this year a couple weeks ago after his second bout of pneumonia. According to doctors at the hospital, it was time, and they predicted he would quickly get aspiration pneumonia again. However, so far he has not thankfully. What confuses me is how mobile he is! He spends his days walking laps around the (fenced in) care home outdoors. He probably takes more steps a day than I do. His body and mind are otherwise failing him. All his other failing systems have been present for several YEARS, he's been in stage 7 for that long. I know from the literature it can last 1.5-2 years, and he has far surpassed this. When I put him on hospice and he lost the ability to swallow (he gets thickened liquids and his food is puree), I figured it was the beginning of the end. However, he seems in better spirits than ever and is extremely mobile. Has anyone experienced this anomaly before?

BassetHoundAnn

My 97-year-old mom has been in Stage 7 for several years. She has periods where she can't swallow, will forget how to eat, won't speak or if she does it's gibberish. The hospice nurses will tell me that death is imminent. They'll put her on oxygen and her chest will rattle with infection as she struggles to breath. They'll tell me sadly it's death rattle. Then suddenly she'll spring back and be laughing and chatting and eating voraciously, and generally in very good spirits. Sometimes she'll even be zipping around the memory care on her own two feet and telling me how much she's enjoying the activities. It's been an emotional rollercoaster for us both.

For the most part she can't sit up on her own anymore. She needs someone to sit her up and to lay her down in bed which suggests she's in Stage 7e. She's in a wheelchair but unable to propel herself in any fashion. She's been bladder and bowel incontinent for years. She goes through periods in which she's been on a pureed diet but then the nurses will switch her back to solid food and she'll be able to handle that for a while, swallowing and feeding herself again after months of needing help.

Here's a guide to the progression of Alzheimer's, from the Fisher Center for Alzheimer's which suggests that the different substages of Stage 7 can each last for a year or longer, and the final stage indefinitely:

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/#:~:text=Stages%206c%2C%206d%2C%206e&text=As%20the%20disease%20evolves%20in,many%20cases%2C%20by%20frequent%20toileting.

harshedbuzz

The thing that struck me in the dementia world is how PWD follow a general course, and yet each is so very different.

None of my PWD had this kind of energy at the end. My dad, 2 of my aunts and a dear friend's mom were living with later stage dementia around the same time and I was struck by the differences in their presentations. That said, at dad's and my one aunt's MCFs, there were other residents who very mobile. My high school geometry teacher's wife wandered during most of her waking hours and there was one gentleman who walked in a way that could only be described as "real purpose". Getting enough calories into them was tricky.

My aunt sounds similar to your dad. She lingered in stage 7 for almost 3 years. She even had 3 episodes of not eating/drinking for several days which we though would be the end and then she'd start snacking again. Between these episodes, she hung out with her friend. My dad, on the other hand, was ambulatory and ridiculously chatty although confused when his digestive system started shutting down. I was concerned about weight loss, as food seemed to go right through him. I mentioned this to the DON who brought in an SLP to do a feeding eval. She was struck by how poor his swallowing was contrasted with how coherent his speech was. She was especially impressed by how intact his vocabulary was at this point. He'd flirted with her and told me all about a visit with my sister earlier. (spoiler alert- she'd been dead for 25 years at this point so it freaked me out) Based on his swallowing, I ok'd a hospice evaluation for the next day. Dad died a few hours later from complications of aspiration pneumonia.

HB