When we launched The Conversation Project, we knew the importance of encouraging people to express their wishes for end-of-life care before there was a crisis. In a survey we did, people often gave the same excuse for not having the conversation: “it’s too soon.” To which we always replied, “It’s always too soon, until it’s too late.”
There is nothing that shows the wisdom of that statement more than the terrible experiences of families and friends whose loved ones suffer from Alzheimer’s and other dementias. We—and my family is part of that “we”— often feel tragically unable to have these important conversations after someone we love goes into cognitive decline.
Dementia may be the highest motivation to have conversations about end-of-life care while we still can. But at the same time, we can also help friends and families during the decline. It isn’t too late.
After we created our first Conversation Starter Kit, we began to hear again and again from people who said, “But what if my mom, dad, sister, husband isn’t able to fully talk about their wishes. What if they have Alzheimer’s disease? Dementia.”
This was such a constant refrain, so obviously a need, that we set out to create a Conversation Starter Kit directly geared to those suffering from their own decline or that of a loved one. We wanted a guide that would hold their hand through the process, make it easier to understand and share wishes. And thus, The Alzheimer’s disease and other forms of Dementia Starter Kit was born.
We deeply hope that this will help all of you, your families, your patients, clients, friends. And so, we add this to our roster of tools to make it easier for people to share what matters to them about the way they want to live, even toward the end.
Ellen Goodman
My mother had a stroke this past year, but luckily did not have lasting effects. She has many other health issues and is 83. She and my father still live in their 2 story home. She has increasing been getting forgetful and confused as well as, honestly, nasty. I am concerned for Dementia and the safety of she and my father living in their home. She is REFUSING to talk about the situation and is insisting we are making things up and that she is fine. The quality of my parents life is getting worse because of her refusal to discuss this. I am unsure what to do at this point and worry about my father because of his taking care of her at his age of 83 as well.
Thank you,
Jeanne