Since my husband was diagnosed with Mild Cognitive Impairment (MCI) in December 2009, I have noticed that when someone is diagnosed with any type of dementia, they are only thought of by their diagnosis. Unlike other illnesses, a dementia related diagnosis is usually received by someone young who then has to stop working, or someone older who is already retired. About the same time that my husband was diagnosed with MCI, my friend’s husband was diagnosed with colon cancer. He’s been back at work over a year, and although he may not have the stamina he had prior to cancer, he is still looked at as a contributing member of society because he works.
A dementia related diagnosis doesn’t make people less than the wonderful person they are. It doesn’t erase what they have accomplished in their life, but some people act that way. My thought in creating the “Who We Are” book project is to write our caree’s stories and record the story of the amazing person they are. The goal would be to publish the stories in a self-published (think Lulu) book, e-book, or both. Even if someone doesn’t want to publish the story, they might enjoy writing it. The story can be written by the caregiver or another family member, such as an adult child or sibling. A group has been created here on caregiving.com as a way for everyone who wants to participate to brainstorm and get over any writer’s block they are experiencing. Currently, I don’t have a publication date in mind that is more specific than later this year.
When I posted about this in February, I also wrote an e-mail about it and sent it to people in my support group and other caregivers I know who fall into this category. I also forwarded the e-mail to some organizations I am familiar with due to this journey. These included the Alzheimer’s Association, an Alzheimer’s day care facility, the woman who runs our support group and a local university. I was very surprised to receive extremely positive e-mails from people at all of the organizations, expressing their excitement for this project. One organization even forwarded my idea to people in their support group in case they would like to participate.
The biggest surprise came from the Alzheimer’s Association. I should explain that I have contacted all of the above mentioned organizations before with requests/ideas/suggestions and other things that they frankly don’t like. I didn’t expect this time to be any different, but it was. I received first an e-mail, then a phone call, asking me to teach a monthly class for caregivers and their caree. Wow! That was a surprise. Instead of a class, I am thinking of it as more of a writing group. The first meeting is April 10th.
In addition, a dozen people have let me know so far that they are interested in participating in this. If you would like to participate, please write a comment below and let me know. I will send you an invitation to the group.
- Who We Are! (caregiving.com)