Worse than I thought

MrsAnnabelLee

Last time I posted I noted that mom was moving into stage 6. Well, based on updates I've gotten from her care team, and a quick reference to the FAST scale, we are more like late stage 6. It seems like things have moved at the speed of light the last couple months. 

Mom speaks a little less. She's definitely more conversational and social than I had pictured stage 6 to look like. Anyone else have this experience? I'm also noting that she is losing some of her humor, which is a tough blow. She's always been a life of the party type, always laughing. 

As I look ahead to stage 7 it's so hard to believe that the next steps for her involve near total loss of language ability. I feel like we are in the last of the "ok" times. 

Today is my daughter's 4th birthday. She won't be here to celebrate. Ugh I hate this disease. 

Jimbob59

My mother has been on a slow decline for more than 20 years the last year her decline has accelerated, she can still laugh and talk with folks but not a real conversation just sort of the same conversational phrases and ideas. She is still at home but has started trying to leave at night. She's OK till around 4 pm then hang on for the roller coaster ride. She needs help with all ADL but was easy to care for until a few months ago. I was hoping to keep her home, at her next appointment in two weeks I will be informing her longtime Md that I plan on placing her.

harshedbuzz

MrsAL-

My father's disease progression seemed different than what most here describe. We found the physical manifestations of the "next stage" presented well before the loss of things like orientation, recognizing family, speech and such.

My father lost the ability to swallow effectively while he was still very verbal. He was being evaluated by an SLP for dietary changes- she had him swallowing a variety of foods- while he flirted and told stories the last time I saw him. One of the things he shared was a lovely visit he'd had with my sister who finally came to see him.

After the study, he took a nap and I spoke with the SLP. She was surprised by not just how chatty he was but his ability to organize his thoughts, his vocabulary and his pragmatic use of language in telling the story about my sister. The punchline is my sister died 26 years prior. He died later that evening from complications of aspiration pneumonia. 

HB

Jane Smith

Mrs AL:

I one hundred percent hear you on hating this awful disease and what it does to patients, caregivers, and families. So much collateral damage. I am so sorry. 

My mother was always very verbal and was still chatty until just a few days before she died. She was actually still talking the day before she died. She was also still completely ambulatory, and walked walked walked all the time, until she broke her hip about two months before her death.  And a month after she broke her hip, she started getting out of bed on her own (we did not repair it).

So it’s hard to know?

I am sorry for all your losses, past, present, and future. 

All best.