Awareness update

Ed1937

Within the last five minutes I received a message from the reporter who was going to do an article about dementia. He told me he is willing to do a writeup on the dark side of dementia, if that sounds good to me. Possibly a series of articles. He did read the other thread on this.

I have different thoughts about doing this. One thought is that most people probably will not read it when they become uncomfortable with the truth. The other thought is that some people will keep reading because they want to understand more about the disease. Then the reality will be spread simply by word of mouth.

I agree with Jo when she thought having a presentation for a group of nursing students might be the best way to get satisfaction, but I still would like to get it out to the general public. I told him I would like to do that. He will be writing about the potential scam this week, then we'll get together to see how we can write about dementia.

harshedbuzz

Ed-

I am very excited for this.

HB

Quilting brings calm

I am excited for this too.   Do you know  what topics you will be discussing?  Are you going to focus on the PWD’s symptoms and what that does to them?  The external difficulties the caregiver has in caring for them?  I guess what I am asking is if you will also touch on the feelings of people like Novice who feel unable to deal with this from the beginning and what that means to them and the care of the PWD?

Joydean

Ed I’m so excited that you are willing to put yourself out there to do this. I know you will be fantastic and I can’t think how many people will be helped. Sometimes it does take a “shock “ experience to truly know the truth. Hopefully the word of mouth will also spread, not just in your area, but in many areas. There’s even a chance other papers will pick up on it, maybe even a news station. Who knows how far this could go. Only God knows the answer to these questions. Bless you Mr Ed!

Ed1937

I'm not sure how this will be done. But he told me he would not pull any punches when it comes to the dark side of this disease. He's the pro, so I'll leave the basics of how to do it up to him. He told me he has written about murders, rapes, and other things that were pretty dark, so I'll let him lead the way. I did tell him I would have to talk about things I've seen on this forum.

Another Day

Ed1937 - I wish you well on this endeavor. My way to this site was a pretty lengthy journey because of my lack of basic knowledge having to do with dementia and Alzheimer's. I did not realize the progression and how slow it can be. I didn't know the little telltale signs. I did not know that it is not always age, as in old, related. I did not know that it can happen to anyone. So many things I did not know, I wish someone had clued me in as what you are desiring to do. Get the word out so that others find the help they need sooner than what I have.

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White Crane

Ed, That’s great! This is important information that people need to know. Praying it goes very well.

Last Dance

  ED, it is my belief that you have to live with it to Truly understand it! I applaud you for what you are doing. This is something that I have done also, and I really find it helpful to talk about my wife and our path with Alzheimer’s for 11 years. Everything from the beginning when I dint understand why she did some of the things that she did. As you know nothing bad just strange out of the ordinary things she would say or do or not do.  A journey that started in 2006 and ended in 2017. I have spoken before groups as an individual and as a member of a panel discussion. I have talked about how it affects the PWD and how it affects the care giver. I have talked about the dark side of Alzheimer's and dementia, because I feel that the more people know about Alzheimer's and how it can affect their loved ones and also themselves the better off they are prepared to handle the situation when it comes before them, and also to help them understand what caregivers are going through when they're dealing with Alzheimer's or dementia of any type. In most of these meetings people would come up to me or other speakers afterwards and ask many more questions. I'm not sure if I agree with Victora 2020 about not using your name, when we first got our official diagnosis in 2012 my wife and I and another couple that the husband had Alzheimer’s did participate in a newspaper article with our pictures, my wife and I we're both fairly well known in our community. I had people call me and say how sad it was, but I've never had anybody say anything or do anything bad about it, but maybe in today's society you never know what crazy are out there. So, she might be right in not using your name if someone wanted to get hold of you, you  could have them contact the Alzheimer's Association in your area and then if you wanted to get in back in  touch with them afterwards maybe you could do that. I do believe people have a lot of questions about Alzheimer's and dementia they just don't know who to ask or where to go to and sometimes hearing it from somebody who's lived it is better than reading it in a book.

loveskitties

Ed, I am so very glad that your project is a "go".

I know from personal experience that most think that dementia is just a "forgetting" disease...I was one of those.

The ramifications are like the ripples on a pond...they just keep spreading.

Please keep us updated and let us know where we can find the articles when they come out.  Perhaps we can add out voices to get them circulated nation wide.

Thank you from the bottom of my heart for your efforts in helping all of us, and those yet to come.

danapuppy

Sorry for being ignorant, but what is the "Dark Side"?

Ed1937

Dana, the dark side is the very worst parts of this disease, and what it does to the person having dementia and their caregiver(s). Things that you are not likely to read in most articles published for the general public.

wizmo

Some examples:
- well-meaning doctors who will tell you there is no cure but lots of treatments which vary in effectiveness and may initially give you some hope, but often do not really alter the course of the disease; they also are ill-prepared to convey just how bad it is likely get dealing with personality changes, behavior changes

- less well-meaning (scam artists) who will sell you expensive "new" treatments that are unproven and ineffective, and hopefully not harmful beyond a waste of time/money

- lack of education among many medical professionals who do not understand the impact to family in terms of stress and demands of caregiving

- how family caregivers are effectively unpaid, have to give up a career and personal life, may end up spending their life savings to cover the cost of institutional care

- how your social circle will shrink dramatically as friends and relatives are uncomfortable being around a disabled person, especially mental illness which this is

- caregivers whose own health is at risk or begins to fail because they do not / cannot take care of themselves and the disease effectively claims two people instead of one

I am so glad I found these forums early in my journey.  I have had more realistic expectations than the limited information I was getting from health care providers.

Another Day

Ed - Please post a copy of whatever you do manage to get published on here for all of us to read. The comment section alone may be worthy of a second article and get the word out to even more people. I am praying for your success. About using your real name???? You're going to have to make that call. I'm not sharing with a lot of people what is going on with my husband for personal safety reasons. If word were to get out that he is somehow incapacitated, and I'm here alone, we could become a target for people up to no good. Just food for thought. 

I'm just thinking of how easy it is these days to track someone down with very little information. A real name is gold in the information business. It can also be money for people who know how to scam someone, especially people like us who are experiencing one of if not the most difficult times of our lives. We are vulnerable. Be careful. So everyone knows....I'm saying these things out of the love in my heart, and caring, for another person in the same situation I am in. 

Grandx7

Hi Ed,  Thank you for doing this interview.  I also agree that it is best to safeguard your identity and location and that there is so much information you can impart to others that may be questioning changes in their LO.  Any info you share will be helpful.  There is nothing like going through this experience and having your positive outlook at the end of it all.  I have appreciated your words!