New Realization - it is Stage 7

ButterflyWings

Forum mates, I have been amazed but glad that Stage 6 seemed to be such a plateau for my DH. What a bittersweet thing to be pleased about, right? Such is our lot. But after years of saying we are in 6 () and one of its various sub-stages, the last couple of weeks have brought a shift.

Ironically, it is eating related, just at the time of year that so many foodies (and everyone) look forward to. Today, our hospice nurse said its time for me to start pureeing his meals. I wanted to cry. Because it means more loss, and possibly will have a snowball impact on his decline. Like many of our dementia step-downs, it came without a lot of fanfare or advance notice except for this forum and tools like the Tam Cummings staging info (attaching again) which give us all a general heads up that some things might be coming down the pike if our LOs don't succumb to something other than dementia, beforehand.

Recent signs: he's been pocketing his food (edit: in his right cheek) more and more for the last 3-4 weeks, and needs reminding to swallow before putting more in his mouth (I often had to remove the plate temporarily, and also tried giving less food, more often, vs. a full plate). This last week he also started chewing his food sometimes for hours (literally), even if the food was soft (scrambled eggs) and cut in tiny pieces (chicken, steamed veggies) before serving. This chewing for hours is always a risk because he dozes, then wakes up, inhales or coughs, and some of the hidden food may go down the windpipe. It has happened a couple of times.

Also, 2 days ago he repeated something that happened only once, many months ago: while eating he suddenly, randomly took a bite out of the paper napkin. Yikes. I snatched it away before he could get more than 1 bite of it, but the aide was caught off guard as he's been so seemingly self-sufficient with meals once the plate is handed to him. The little bit of paper towel meant more chewing, chewing, chewing and wouldn't spit it out. I learned not to put my finger in a PWD's mouth the first time he ate a chunk of paper towel. (He bit down on my finger and almost would not let go). This time I tried to trick him into letting me swoosh it out with a soft hospice toothbrush and he started trying to chew the spongy tip off of it! First time for that.

Anyway, looking at this handout, it puts these things together in a way I had not. "*Cannot feed self -- chipmunking or holding food in cheeks, high risk for choking" and "Hyper oral (may put everything in mouth)." These are clearly Stage 7 which I knew we were dipping our toes into. But being unable to feed himself or eat solid food is a gut punch today. He already had increasingly long silent periods every day, but still can string a decent sentence together and often it is shockingly appropriate. And he rarely stands up or walks -- but he can, so I missed the bigger picture. This is Stage 7.

How is it possible to feel not at all surprised, yet stunned at the same time? I do. Wishing you all the gentlest possible outcomes on this unforgiving journey. For today? I just feel heartsick. We need a cure for this monster disease (or several) in our lifetime.

Tam-Cummings-LLC-Handouts.pdf

M1

Sending prayers and thoughts your way. We are never prepared emotionally, are we? No matter how much we try. I am so glad you have hospice on board.....

Emily 123

I'm so sorry BW.

JeriLynn66

I’m so sorry.. sending hugs and prayers

Kibbee

I am sorry to hear that things are advancing for your DH. Seems like no matter how much I read or think I’m prepared, those downward steps can take me by surprise.

GothicGremlin

I'm so sorry @ButterflyWings .

I know very well the surprised/and yet still stunned feeling.

SusanB-dil

Oh, my... sorry to hear another step down. Agree - although we know it is inevitable, I think it still just sneaks in suddenly, when we aren't looking.

harshedbuzz

@ButterflyWings

I am so sorry. You expressed that so eloquently. It is one thing to know how this disease progresses in your head, but something else to know it in your heart.

My dad was conversational until he died. The gist of those conversations was pure imagination, but vocabulary, prosody and syntax remained good well after his swallowing and digestion were reliable. It plays with my head given what I'd read and the experiences shared her.

HB

ButterflyWings

Thank you all so much for your kind words and thoughtfulness. It is the one thing we can count on in this downward spiraling world of dementia. I am grateful for the support.

mommyandme (m&m)

When new adjustments must be made to match the new normal of our situation, it is shocking and heartbreaking. I’m so sorry for this step in you and your DHs reality. Darn this disease!

forbarbara

Peace and strength.

Howaboutnow

I’m very sorry. Though we’ve read everything available to prepare ourselves, a step in a new stage can take our breath away. Maybe it’s because we get lulled in the long slog of it all,,,,feeling like this will go on forever.

Thank you for sharing with us-it’s really helpful.

Rocky2

BW,

Thinking of you and your DH today. I too often find even when my mind is prepared for a change, my heart is not. Hugs and prayers.

Tom

Kibbee

Even when we think we have our eyes wide open and are ready - we often are not. Perhaps it is a way our brains protect us for as long as possible. Sending you wishes for strength and peace.

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