Thanks

Another scale I do like is the Clinical Fraility Scale.

It is a very clear list with distict stages BUT it cannot predict how long a person will stay in a stage.

Eg In my circle, one went from
2. Fit to 4. Vulnerable quite fast with a Ca dx. Another has taken years to move slowly from 5. Mildly Frail to 6. Modertely Frail.
Another has been been stable at 7. Severley Frail for many years.

I'll try to add a link:

https://www.physio-pedia.com/Clinical_Frailty_Scale

Kittykat, someone has created the framework of stages in hopes that it will be helpful as we navigate the passage. Stages are a construct, not a reliable way to predict what will happen.

Stages (if there are any) overlap. For instance, in Stage 7, the final stage, it is described that the person's ability to speak will diminish and eventually stop. They'll be unable to walk. The body will start to shut down. However, my friend's husband has aphasia from his dementia and cannot speak at all. Yet he walks a track for exercise, enjoys adult daycare, and is only occasionally incontinent. Is he Stage 7? Not really. I could cite other examples but have run out of time.

There is a lot of help on this site, and I hope you stick around. You'll learn a lot. (Which is a good idea, because a lot that is published about caregiving a person with dementia is nonsense. Here you get info from people who actually experience it rather than those who are trying to push an agenda and know nothing about it.)

No one was trying to be unsupportive. I think it is a legitimate question. And now she answered it I know her thoughts and was able to answer her. I cannot quite honestly imagine what was said that was hurtful. Seems everyone on Forum is hurt today by what others respond. Making me feel like we are mean social media out here. Time for me to take that one month off, happily!

Sorry. That was a real question. It wasn't a criticism. I wondered why it mattered to you and now I have an answer to that. And it's a good answer. So no apologies from ME for asking why you are curious to know.

To be honest you cannot count on stages. I just finished a book by a husband who cared for his wife for 8 years. Often he would say "she is at stage 7a and.............." then would tell what that consisted of. And it was awful. Pooping in the shower and everywhere else, lashing out often at caregivers, unaware of who he was, unable to leave her for a second, finding her standing with her coat on looking so pathetically confused. And I kept thinking what does that 7a matter. I have been this journey with him and wonder why these letters and numbers are here.
Now you have told me that a number given to you might give you some idea how long.
I am glad I know the reason
Because now I can tell you that you will never know how long. Never. You cannot predict it. It is different for each patient. The stages don't occur with regular movement but randomly and chaotically, and in the middle of each stage there are other things happening health wise that have repercussions.

I think better than letting your life rest in the hands of a chaotic disease, KittyKat you should take control of your own life. This disease will not give you a CLUE of what to expect no matter how many labels and numbers you slap on it.

So my advice would be that it is up to you to decide how much longer you personally can go on providing 24/7 in home care to someone with this illness.
You have my best wishes, but the choices are in your hands. There is no road map, there is no guarantee of time, there is no certainty or even clues. There is only how long can you go on doing this care. You as an adult are responsible for that decision for your own life.
Good luck to you. I trust you to make these decisions for yourself. But don't count on any magical thinking or predictions. You might as well have someone read your Tarot. It will be just as useful.

Don't be upset, some people feel there is no value in scales and stages and that we just have to learn to deal with things one day at a time. I absolutely understand why you want to know, I'm a "ducks in a row" kind of person so I spent all of my caregiving years trying to figure out what was going on and what might happen next. I had some experience watching my grandmother care for my grandfather and thought I had a good understanding of what caregiving was all about, but I never had a clue that people could live so long and be so completely physically dependent the way my mother did.

Kittykat, Your post asked what stage your M is at. Now you say that “Saying and asking why does it matter I find a little hurtful. I’m looking for support and not judgement”. You can’t control what other people say, even what they think is helpful. If you simply want unqualified ‘support’, not answers to a question, perhaps make it clear that you are just venting. And please make any further comments on the original thread.