[onslowe]

Originally Posted by Average Guy

Why is it that people make jokes about Alzheimer's disease? People don't seem to joke about other deadly diseases with no cure. For people who have had relatives or other loved ones suffer and die from this disease, it is hard to find the attempted humor as funny.

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.

[Average Guy]

Originally Posted by graciegirl

I think because it is a way to divert thoughts from the awfulness of it and the fact that at this point we haven't a cure.

I do it myself sometimes, joke about memory loss.

The burden of care is so overwhelming to the one in charge that there is nothing I can find to say. It is one of the hardest jobs any human is called to do.

It just isn't just the endless questions, or the erratic behavior or the fading right in front of you of someone you so love. It is also the never being off duty, the physical work and the terrible expense and the hopelessness.

Perhaps someone can post the link to The National Alzheimers Association. It is a worthy recipient of our support. Both with money and with time to spell a family member.

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.

[Gerald]

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 .

[spring_chicken]

Originally Posted by Average Guy

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.

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?

[graciegirl]

Originally Posted by spring_chicken

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.

[Barefoot]

Originally Posted by Villages PL

If I have such a gene I will likely be persuaded to take medication which will have some sort of side effect.

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.

[graciegirl]

Originally Posted by Barefoot

You have posted many, many, many times that you never take drugs of any kind.

Originally Posted by Barefoot

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.

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.

[Villageswimmer]

Originally Posted by Barefoot

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.

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

[Villageswimmer]

///

[KeepingItReal]

Originally Posted by GolfGirl122

Back to your question, it was generous of you to even consider participating in this study, however, your involvement may be more than it appears on the surface.
Would I want to know beforehand, probably not. If I did know, would I want a placebo, probably not. Would I participate, probably not. IMHO. By the way, I am very cynical of most "studies", for every study, there is another study to prove just the opposite.

There is a really big difference in clinical trials and studies. I think some paint them the same with a really big brush.

[Bonanza]

[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.

Originally Posted by Barefoot

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.

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.

[Villages PL]

Originally Posted by naneiben

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

Thank you, naneiben. Great reply!

[graciegirl]

Originally Posted by KeepingItReal

There is a really big difference in clinical trials and studies. I think some paint them the same with a really big brush.

Always learning. What is the difference?

[KeepingItReal]

Originally Posted by graciegirl

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:

Originally Posted by Gerald

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 .

[senior citizen]

Originally Posted by Villages PL

I responded to an ad in the Daily Sun that was looking for healthy people at least 65 years of age. I thought the study would be about lifestyle where they compare one group with another.

But I got a call yesterday and found out that they will be testing a drug. It will likely be a double-blind study with half the group taking a placebo and half taking the active ingredient. It's not intended to be a cure but to see if it helps to forestall dementia.

I have an appointment to get a blood test to see if I have a gene for Alzheimer's. Only those who have such a gene will be accepted into the study.

I'm not sure I want to know whether I have the Alzheimer's gene or not. Having an Alzheimer's gene does not mean one will necessarily get Alzheimer's. 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.

Should I go for the blood test? What would you do?

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.