Feels like crazy fast progression

jmwhosh

Still trying to understand what's going on with all this. My MIL, 67, was diagnosed with ALZ last summer. We'd started noticing forgetfulness and loss of memory (unable to remember her favorite recipe she's made for 40 years) and other things. 

What is hard to understand is right now, just over a year later, it feels like she's in stage5 already. She can't remember anything, has a hard time even remembering her kids names, can't hold a conversation or make decisions (like anytime you ask her anything the answer is 'no I'm fine', like 'Mom, do you want some ice cream, mom do you want lunch, mom can I put some potatoes on your plate') but then you do anyway and she eats it. She takes a shower at night and then does her hair and puts on her makeup right before bed but doesn't know why. She gets so anxious whenever FIL is not around and will just leave the house to try and find him. She has a card game that she carries with her everywhere and has to play and it brings her comfort. 

18 months ago she watched our 4 kids while my wife and I were in the hospital delivering #5. She was (or at least seemed) fully functional 18 months ago and now to be where we are, it's like, does it progress this fast or could this be something else. Doctors are pretty confident of diagnose but I guess we are having a hard time with how fast it's all going. 

Anyone else have this experience where things went from fine to like stage5 in 18 months? 

harshedbuzz

jmwhosh-

Hi and welcome to the club nobody wants to join. I am sorry you have reason to be here, but glad you found us.

I think there could be a couple things going on here. 

1. It sounds as if your FIL was probably scaffolding a great deal, mostly unintentionally, which enabled her to function as well as she did for as long as she has. 

2. Anecdotally, early-onset seems to progress more quickly, on average, than Alzheimer's diagnosed in elderly people. It seems, too, that often Alzheimer's isn't on the radar so that the earliest symptoms get ignored of written off as a manifestation of stress or depression which means diagnosis comes later in the disease progression. 

3. She probably wasn't "fully functional" 18 months ago, but recalled enough from her days as a mom to provide care especially if the older kids or her husband were prompting her. 

I can appreciate that this seems really fast. My own father was much older when diagnosed with mixed dementia primarily because my mother refused to take the steps needed for him to be evaluated until a crisis. He was diagnosed in December of 2016 in stage 5 and died from complications of aspiration pneumonia in April of 2018. My mother would say his progression was very rapid because she didn't see the personality changes as early as 2005 and significant memory loss/confusion by 2008 that I was seeing. I will say that the time spent in stages 5 and 7 were rather less than published averages for those stages.

I am sorry you are living with this as a family. Especially with someone so young.

HB

Yorklady53

My DH has progressed incredibly fast. Last year at this time he was still driving, I was able to go on a vacation with our daughter and her family and he was perfectly fine caring for himself. He still took his medication on his own, could make phone calls etc. He was very high functioning. Not even a year later he no longer drives (I had to force this late November of 2020. He needs to be reminded to bathe, he forgets items of clothing when he dresses. He no longer can use his cell phone. Even though I bought him a new fitness watch for Father’s Day he forgets how to tell time. Carrying on a conversation with him is impossible. I feel like in one short year I’ve lost him. It is just all incredibly difficult.

aod326

My husband went from first few signs of forgetfulness in June 2017, progressing at an OK pace, to reaching the rage stage in December 2019. He died in April 2021, aged 60, having been immobile and unable to communicate for about 5 months. As previously mentioned, EO tends to progress faster. However, every PWD is different.

It was horrible, and also confusing as we thought his challenges were a result of worsening epilepsy that had appeared out of nowhere in 2015. He was only diagnosed with dementia in February 2020.

I would have him back in a heartbeat - even compromised - but I must say I feel relatively lucky when I see many people on these boards whose PWD has had dementia for many years.

Arrowhead

It's a roller coaster. In the past 5 years, my wife's symptoms slowly got worse, then rapidly got a lot worse, then actually improved, then got worse again. Now, mostly steady for the past 6 months. I think she's in the later part of stage 5. She started showing some of the symptoms of stage 6 years ago, but some symptoms of stage 4 she never has developed. 

Over the years she has been very good at covering up her symptoms. Maybe your MIL was too. 

French

My partner 

-was on sick leave April 2018, we were thinking it was a burn out

- diagnosed Alz May 2019, was 52 years old,  already stage 4

- 2020 stage 5

- and now he is stage 6. 6c begins

Yes about 1 year per stage, it is quite fast.

I prepare some respite stays for the fall and placement for 2022, because I am still working and children at home.

Tauruslady511

As a previous poster mentioned, your MIL likely wasn’t fully functional 18 months ago.  You’d be surprised how many are able to “fool” people and fumble their way through things and appear to be of sound mind.

Having a heavy family history of Alzheimer’s, I’d already felt like my mom was exhibiting signs, well before she was diagnosed.  And once she was diagnosed, I thought back to several specific events and realize she was exhibiting signs then.  Once I moved in with her, I found memory-enhancing supplements dating back 8 years prior.  So, she knew something was wrong many years ago.