Gracie's post above is excellent. My wife and I took care of my mother for more than six years in our house. Twenty four hours a day. One's mother, who back when, was one's mom who was all love, caring and wisdom. The change is radical and heart wrenching, and one of the greatest thank you's children can give in returning care and comfort.

Because we are human, and not trained as either caretakers or unfeeling robots, we need to release pressure, often with the loved one. And yes, joking is a release and a needed one. It doesn't detract from the quality of caregiving or the sadness of the overall situation - it allows one to get through it as certain times.

Maybe this is a bit off topic, but I remember, back in NYC, many many of my friends were police officers. The way they could laugh at some of the things they saw and encountered on their jobs astounded me. They made light of some really bad situations, and they told me why. It made sense, and joking and kidding in these situations makes sense too.

Your points, as usual, are well taken.

I certainly understand from time to time caregivers or loved ones needing a release from the burden. What I find disturbing is jokes or insensitive comments from people who have been fortunate enough to never experience personally the devastation that the disease causes.

Having said that, I think that most people who make the comments are not mean people, they just do not understand how not everyone may see their comments as humorous.

testing any drug is very dangerous , that is why they test it. to find out not only if it works but other side effects. so you decide .

How do you know, on a message board or anywhere else, who has and hasn't been affected by the disease? I have a very large circle of friends and acquaintances and don't know a single one who has never been affected by it. I would venture a guess that most if not all who offended you in this thread have, also.
Wouldn't it disturb you much less if you didn't make those assumptions?

Making assumptions is what people do. Then they talk and then they listen and then they learn.

You have posted many, many, many times that you never take drugs of any kind.
It is obviously something you consider extremely important.
Why on earth would you even consider taking an experimental drug with unknown side effects?
I just don't get it. :confused:

Quote:

Originally Posted by Barefoot (Post 999918) You have posted many, many, many times that you never take drugs of any kind.

Good point.


And the study would probably not take VPL because of his rather unusual diet. I am sure they are seeking people who consume a more general diet. Usually studies like to stay within the framework of certain perimeters.

Does it really matter? Perhaps OP just wanted to generate a discussion. No harm done.

///

[quote=Villages PL;999396] If I have such a gene I will likely be persuaded to take medication which will have some sort of side effect. So I may end up doing more harm than good.



Barefoot hit the nail on the head. As she has mentioned, you have ongoingly said in your ad infinitum threads and posts, how you feel about taking medications. Of course, not everyone has a side effect from a medication and not everyone will have the same side effect from the same medication either.

So I question, why this thread? You already know what you are going to do. You knew before you made this post.

Thank you, naneiben. Great reply! :wave:

Always learning. What is the difference?

Basically the drug has already been approved and on the market for a study to be done. Not so with clinical trials.

FAQ: ClinicalTrials.gov - Clinical Trial Phases

https://clinicaltrials.gov/ct2/about...s/learn#WhatIs


This would be a clinical trial:

Just say no
 

Just say NO. An experimental drug test? You, who try to live simply & eat purely?

When my own mother, now deceased twelve years, was in the end stages of Alzheimers (the last 18 months in a skilled nursing home, in the Alzheimers/Dementia wing) I was called by a physician doing the same type of studies you mention above.

I listened politely.........but told him in no uncertain terms that I could not put her through it.........explaining to him how the Aricept had NOT been for the better after being prescribed by her specialist on aging.......so no "experimental" drugs for mom.

I also told him that I had read his article in our local newspaper which led me to look up this "experimental drug"......& its horrific side effects.....such as liver damage & on & on.......

He was moderately surprised......saying "Well, I see you've done your research".........I told him I just could NOT put her through that........I also knew they only offer these drugs to those at the end.

A few years earlier, her physician had put her on Aricept.......she immediately lost her appetite & stopped eating......dropping back down to 85 lbs. from the 100 lbs........these are common side effects which are known. She also got dizzy from it. After a short hospital stay where they put her through battery of tests, her internist (who was our neighbor as well) told me, "Your mom is in amazingly excellent health for her age (except for the dementia); her lungs are those of a younger person, her bones, her heart, etc., etc., etc........she was still walking briskly until the Aricept.

Long story short........after I said NO to the experimental drug, she passed away about a month later.......peacefully with palliative care, comfort care........at age 91. I just couldn't see an experimental drug.......with her as a test subject.

Initially, I took care of her for six years in our own home.......she had "Sundowners Syndrome" & would get up in the middle of the night & walk all around the house getting into mischief. I won't go into that......but I could write a book, believe me. I prepared her meals, bathed her, dressed her........etc. I wish I would have kept her at home, truthfully......as she was content.

However, once at "daycare" (8 a.m. to 3 p.m. five days a week) she fell over a parking log.........hurt her arm (the activity assistants were not really watching these elderly folks); after that she could no longer get into the bathtub or out of the bathtub, so I began showering her.........but she was AFRAID of the shower.

Long story short (again)......a nice community care home, along with lots of her old friends from the senior center, was her new "home" (after being with us for six straight years). This is where the Aricept "dizzy incident" happened.........she rose from her chair; a painter heard her say, "Oh, I feel dizzy" & they called an ambulance........later after numerous brain wave tests, internal tests, everything a hospital does...........the doc called to tell me she was amazingly HEALTHY.........

It wasn't till she hit 90 that she went to a regular nursing home.
At the end of that she was in diapers & a wheelchair.......that's when the experimental drug was suggested. He was a little PUSHY however finally accepted that I wasn't going to put her through it......obviously there was NO TURNING BACK.

Believe it or not, I'm not worried about getting Alzhiemers.

Lots of our friends parents had it........& were all in the same nursing home........the nurses & aides were all angels of mercy.

Her passing was very peaceful.
Every day I wish I had her back. There is no love like a mother's love.
Our dear cousin & friend just lost her 95 year old mom to Alzheimers in New Jersey. Wake is today. Funeral is tomorrow.
Huge second snowstorm supposed to hit them AGAIN.......and also Boston area...........as well as us, again.