Over on the Caregiver Forum, Gremlin asked the question... When did you know?

The simple question, is huge. The comments are amazing. Many of us, including myself were in denial for quite awhile.

This is what the general public could relate to and identify with.

We hear about cancer and heart disease all the time. And the most important thing we listen to, are the signs We know that people die of heart disease and cancer, so we don't have to actually watch them die.

So why don't people need to know the signs of Alzheimer's? But instead need to watch someone die, isn't that understood even by people that don't know someone with Alzheimer's?

Hear! Hear! Lady of Grace!

Know the signs and get the action, namely diagnosis then medication. Learning you have the disease and knowing you can act to stem the digression of it. You can do this by following the admonition to eat right, exercise daily, participate in social, creative, stimulating activity. These are the advantages of the ten signs we need to publicize

These are sound ways to help ourselves rather than shying away from discovery of our impediment.

Anita, if you're asking whether most people know AD is terminal ... no, they don't. And they sure don't know how it progresses, and what is involved in caring for our loved ones.

Most people think AD only involves short-term memory loss. And they think it only develops when people are very old, and that it's a relatively "normal" part of the aging process.

So most people don't see any reason to know the warning signs or watch for them.

There are many who wonder how I can use & spell on my computer,lol.......I have many hoursd on the pc going from hither & yon......It keeps my mind active.Even though I may forget something If my memory is jogged then I remember..........

Snowy, my Mac does SpellCheck where ever I might be typing. Sometimes, it seems I can't spell anything right.

Forgetting is a problem, e.g. frequently I'll think of something I want to Google, but in the seconds it takes to sit down at my computer, the idea is gone. Similar to conversation ideas.

I think one of the differences between ordinary forgetting and dementia forgetting is, when we forget, there's nothing to be jogged. The memory is just gone.

quote:

So most people don't see any reason to know the warning signs or watch for them.

Exactly. So that is why the "Question" should be asked and the caregivers answers are important.
The general public needs to know that family and friends saw signs, but did not know what they were seeing. The signs are so different, but are out of character for the persaon with Alzheimer's.
The general public is experiencing signs right now and don't know it. So showing the answer to the "question" would be more helpful and insightful.

I see no point in showing someone die. Not everyone dies of cancer, a lot survive for 10+ years, but we know that some do. Again not everyone dies of cancer, but a lot die from the treatments, chemo and/or radiation. So showing someone die of cancer or anything serves no purpose.

I felt terrible for the woman that lost her entertainment husband and for having allowed the cameras in the room at a time that should have been private. How did watching him die enlighten me?

Anita, you have just asked a question that hadn't even occurred to me. You make me think!

The signs. I do wish they had addressed it. How many did I see before I absolutely had to admit there was something terribly wrong. How many times I've kicked myself for not making her come to the doctor with me long before I finally did. Maybe the medications would have worked better and she'd not be so far into the illness we've taken them off because they don't work?

How much did I know about AD before this? I knew it made you forget and my impression was that someone woke up one day and didn't know anyone anymore. It never occurred to me how it progresses over years and that I'd have to watch bits and pieces of mom disappear for all this time. I never thought about toilet issues, none of what I live every day.

Anita, you asked if people know that people die of Alzheimer's. I'm a doctor and I didn't know that. I knew that very old people forgot who their family members were, but could remember their childhoods. I believed they eventually died of cancer, heart attack or stroke. I didn't know that a physically well body could die of Alzheimer's alone. I didn't know of the loss of bladdef and bowel control. I didn't know of the emotional extremes nor the verbal and physical violence. I didn't know of the hallucinations and the delusions. I did know that Alzheimer's patients could get lost outside and not find their way home. The disease pathology of Alzheimer's may have been emphasized but not how the disease actually affects the patient and the family. Of course, my field was pediatrics, so I had no contact with older people.

People don't only need to know that Alzheimer's disease is something that you die from They need to know that there are many people LIVING with Alzheimer's, and that it's happening to younger people.

What I'd like to know is, what percentage of people with Alzheimer's die of Alzheimer's, and what percentage die of something else? Does anybody know?

Iris L.

Iris,
I like you did not know how Alzheimer patients died. I knew that some died of strokes, other illnesses, but not from the inability to function, eat, walk, talk, etc.
But still I did not see a reason to film that man dying. His wife agreed to it and I don't know how she felt afterwards. But she will never get that time back. I did not get anything out of watching that.
Death and how it can be drawn out with Alzheimer's is an important issue for discussion.
My father had three primary cancers, the last one killed him. It was tongue cancer. First they cut out part of his tongue, but obviously not enough. In 3 mos it returned with a vengence. He chose Hospice at home. First we gave him liquid morphine, then as swallowing became harder, we moved on to the patch.
Eventually he could only suck on ice chips, then nothing. Within days he died.
Would I want this filmed...........NO
Would filming it serve a purpose....NO
Would others learn anything from viewing this...NO.

BTW Iris, Trader Joe's does have lemon curd...$2.99

I do not have Ad as I thought for 8 years befor being retested nearlt 5 years ago.But beacause of this people don't realise i'm still forgetting things & It will get worse.Sometimes even jogging the memory doesn't help sadly........But I keep trying anyway.I refuse to give up or make myself crazy wondering the why's & whatfore's of things.Life is for the living & like it or not I'm living til I die.....

Vascular Dementia can be as bad as AD in time so don't discount me............

Right on, Snowy Lynne. I've got lupus and something most doctors don't even know about that causes brain damage and cognitive decline. But I like your attitude. Like you I'm going to keep on, keeping on, and refuse to give up. I'm not going to allow myself to be stressed, but I'm going to enjoy and make good use of the time I have left.

Life is for the living. I'm going to live with this until I die.

Iris L.

Im wondering the same question too. Maybe they read the boards, figured we be way too honest where they'd have to edit so much out there wouldn't be anything left! Ahhh, those memories of fighting with Mom over this disease and her finances that I wish I could [B]FORGET[/B

Sharla

Last month I was dx with Carpal Tunnel Syndrome in BOTH hands,but my left hand was alot worse.I had surgery on it the 30th.I impressed on the Dr.no pain meds.NONE!
Also I wanted a nerve block so I would only have something similar to a twilight sleep type medication as gen.anesthetic can wreak havoc with dementia.
Then the day came,I refused to let a male RN stick a needle in me,lol.They finally mentioned a Anethesiologist I agreed as they are the best to get needles in veins they collapse or slide out from under a needle like mine do.Anyway I got it done "MY WAY"......I wrote my first check yesterday & it didn't hurt.First time in over 10 yrs it didn't hurt to write.....I'm a happy camper......Stitches come out on the 11th then probably i'll wear a splint for a few weeks......

I figure most don't want to hear the reality of dementia regardless of the type.....Hiding their heads in the sand......