Date posted: February 27, 2011
This quote came from a group of people happy to be getting together after a series of snowfalls kept us from our weekly gathering. One after another echoed the sentiment until finally we had an almost out-of-control chorus chanting a shared refrain:
“We may not be all there, but we’re all here!”
As we settled into our conversation together, we realized that something pretty profound had just happened. Here was a group of people who all knew that their memories were slipping, thinking was sometimes labored, words often lost, etc, etc,. And yet in the midst of all these losses, they could celebrate the fact that even though they weren’t always “all there”, they were very much present in the moment, the “here” and now.
Living in the present is a challenge for all of us but for people with memory loss, these can be words to live by.
We’re thinking of making it into a banner!
Posted in Maureen's Blog | Leave a commentDate posted: December 31, 2010
A recent article in the New York Times (12/17/10) on the ethical dilemma of physicians around sharing an Alzheimer’s diagnosis with a patient, received 283 comments as of today. Most people felt the decision belonged to the patient though there were several thoughtful comments about the consequences of knowing, for example, in relation to insurability.
The discussion reminded me of a parallel “to tell or not to tell” dilemma that people with dementia have about sharing their diagnosis with others. Everyone who participates in To Whom I May Concern (TWIMC) knows their diagnosis, so they obviously have made their wishes about knowing clear to their doctors. For people with dementia the question is whether to tell anyone else and, if the answer is yes, who exactly to tell?
Most people hesitate to tell others beyond an intimate circle because they fear they will be treated differently. For most, their fears are confirmed but hope, with more conversation about the illness, loved ones will see beyond the diagnosis to the person that is alive and well. For a few, the reaction of others has been dramatic both positive and negative. Two quick stories capture their experience.
A gentleman in his mid-fifties went to a professional meeting and shared with his colleagues that he had retired because of symptoms of Alzheimer’s that interfered with his ability to continue working. One of these colleagues approached him later to thank him for his honesty and to share some concerns he had about himself. This led to a discussion about the benefits of early diagnosis and a coffee date after the conference to continue the conversation.
This obviously positive outcome was countered by a story that I have heard in several TWIMC focus groups.
A woman in her seventies had been an active member of a book group for many years. She began to have difficulty keeping up with the readings so she decided to share with the group her recent diagnosis of Alzheimer’s disease. Her intention was that she would be more of a listener in the group. Unfortunately, the group stopped inviting her to meetings.
She was devastated but found other friends that supported her and, at every performance of TWIMC, she reminded the audience that “it’s not contagious.”
The dilemma of “to tell or not to tell” has life changing consequences for the person diagnosed.
Posted in Maureen's Blog | 1 CommentDate posted: December 13, 2010
Welcome to our new website for “To Whom I May Concern” (TWIMC). If you have seen a performance of TWIMC, then you already know that the goal is conversation, a conversation about an uncomfortable subject, Alzheimer’s disease (AD). AD is the elephant in the room that we know is present but nobody wants to address.
Cancer used to be that same elephant. The person who was diagnosed with cancer knew it. The people who cared about him/her knew it. But everyone was afraid to talk together about it. We believed that conversation would be too difficult, too painful, too upsetting. We sat in silence around the dinner table, in the bedroom, and in the doctor’s office, until the Hospice Movement came along and gradually the silence was broken. Now cancer is spoken everywhere and the comfort that comes with openness can be felt by the person diagnosed as well as by the friends and family that accompany that person.
Alzheimer’s disease is the new it. We are afraid to talk about it and so we all suffer in silence.
Unless, of course, you have been to a performance of To Whom I May Concern! Alzheimer’s is spoken here, first by the people who have the diagnosis, and then by the people who care about them. The unspoken IT becomes an I which, in the end, is the focus of our concern. The conversation begins on stage, continues through the post-play discussion, and hopefully, follows people home to the dinner table and bedroom and doctor’s office.
I hope to contribute to the conversation in this blog. The latest info on AD can be found on many wonderful websites on the Internet. I will try to link you to some of them. But my focus will be on the stories that lead to openness and dialogue about AD. I invite your responses and some of your own stories that will encourage us to break the silence and embrace the person trying to make sense of his/her life with AD.
