my mom in stage 6 for past 6 years.

scarfire

my mother was diagnosed in late 2014 with alz disease. she is still in her home and i am her primary caregiver and live at her home although i have another home out of NY state. we have home health aides 7 days a week and my 3 sisters are also big helps. my father died prior to her diagnosis.

she went to stage 6 quickly but has not progressed beyond that point in the past 6 years. she has bad hours for sure but most days she gets up and goes thru her daily routine (meals, comfy chair with reading (short dementia books) and music, and some youtube videos on the national parks etc. her health is good aside from the advanced dementia. she turned 90 last september. she has some incontinence but her speech is still excellent even when she is confused and talking nonsense. her voice has hardly aged at all. she walks well with her walker.

has anyone else experienced such a prolonged stage of this disease? we are happy that she is hanging in there but are amazed at the length of time she has been sick with this illness.

ButterflyWings

Scarfire- glad you have such a supportive CG team! Your DM sounds like she is well taken care of. Good for you. We also are at a plateau of sorts, at least a year or more I think, stuck at 6d (I reread the stages and though my DH had a couple of bowel incidents far apart it seemed infection related, not #2 incontinence just yet).

Anyway, have you seen the FAST stages that list a suggested timeframe, and also break down stage 6 into sections? Could definitely last 6 years or more to progress through that stage as you are experiencing. https://betterhealthwhileaging.net/stages-of-alzheimers-dementia/ My DH has also gone back and forth between stages for the entire time we’ve had the firm diagnosis. So, it is one day at a time here also. The stages are a loose guide and each PWD is unique we see. I wish you and your LOs well.

 https://tamcummings.com/stages-of-dementia/

Cyndisaunt

The short answer is that there is no set timeline. 

My friend past of an agressive form of dementia in 6 months, while my father languished for 10 years and my aunt is coming up on 5 years. 

For me, the unknown timeline is the worst part. I am a planner. I like to know what I am doing and I have a plan for the next 5 years, or I did before I began caring for my loved ones because they have no other family. And even if they did, I want to spend time with them as long as I am a comfort. 

My dad past last year after 10 years living with dementia that began with a major stroke. 

I am have been also caring for my aunt going on 4 years. These last 6 months she has declined significantly and is moving from stage 5 to 6 rapidly. 

I am just taking her experience, which is very different from the way my dad navigated, one day at a time because there is not a pattern. I compare this to weather predictions, we live on the coast of Washington state, there is no predicting weather accurately. The same is true for diseases that affect the brain, too many factors play into each person's experience to allow for an accurate prediction of time. 

We are all on our own journey. This forum has been a huge light in the darkness as I stumble around trying to keep my LO and my life as full of wonder and purpose as possible. 

Hugs to you and yours,

Cyndi

ButterflyWings

Here is the FAST scale for Alz stages, that I intended to link above. 

 https://www.mccare.com/pdf/fast.pdf