Does anyone else feel this way?

charley0419

I’ve been on this site now 3 yrs ever since wife diagnosed with mild Dementia, I’ve read books seen videos and heard numerous stories on this site. Wife in stage 4-5. Still takes care of herself other then no driving and cooking and short memory has gotten worse and does get confused. My question is do any of you feel that it won’t get any worse and maybe this is it or is it just me?

terei

It is possible that she may remain at this level for an extended period of time.

Jgirl57

it is not just you. I look each year about this time and think “ what changes have happened over the last year?” The decline is slow but I do see changes. My DH is now nearing end of stage 6 and I am starting to think 7-8 will take quite awhile . I have PTSD from stages 3-4-5.

ARIL

Yes, sometimes a stage can last for years. The DBAT tool, linked from this site, suggests ranges of time for each stage (several are estimated at 1-4 years):

https://www.tamcummings.com/tools/

My dad is declining but very slowly unless he has an illness like flu. Then there is a big step down; sometimes he bounces back a little. Yesterday I took his picture with a little Christmas tree I fixed up for him; I took a nearly identical photo in the same spot last year. Setting the two side by side, I could see more physical decline than I would have guessed (weight loss, general frailty). His cognitive decline has been very slow.

SDianeL

yes many of us have felt that way. Caregivers are around our LO and don’t always see the decline and we prop them up. It’s called scaffolding. I kept a list of behaviors and that helped me see the true picture. The other reason is hope and denial. Many PWDs live 20 years. Some seem to stay the same for awhile then have a steep decline. My sister was diagnosed in 2014 and is now in Stage 6.

harshedbuzz

Both my dad and my aunt progressed through the earlier stages of dementia. Auntie continues to progress slowly until the end remaining in stage 7 for a couple of years. Dad hit stage 6 and the rate of decline became impossible for me to miss although my mom was unable to see it. Cobbling onto something ARIL said, I found the changes particularly obvious in photographs as his affect and eyes flattened, he diminished in size and morphed into someone almost genderless. At the time, mom would accuse me of taking an unflattering picture although looking back at them now, she is shocked by the changes. I feel like a big part of her denial was enabled by dad's intact speech (conversational until he died) and his ability to ambulate and self-feed.

That said, you might find the NYT piece on LATE to which I posted a gifted link here.

HB

tboard

https://alzconnected.org/discussion/74755/does-anyone-else-feel-this-way

It is hard to know how long each stage will last. It doesn't even seem to go in a downward line but more like stair steps. There are plateaus followed by drops and the steps aren't even. I started keeping a journal a year ago and I can look back and see how my DH has changed.

jscott

https://alzconnected.org/discussion/74755/does-anyone-else-feel-this-way

I am in the exact same place. Only, my DW was diagnosed almost 5 years ago. One of my most difficult emotions to deal with is fear of the future. She is so sweet and still my dear loving wife. I do see her progressing but slowly. I pray daily that she continues to be happy and enjoying the life we have together. We celebrate 50 years this coming April.