The first month of January is almost at an end! Wow, where did it go?! This month has definitely passed quickly, and for DAI, it has included a lot of celebrations for our 5th birthday.
We even have one more DAI event in January to attend, which you still have time to register for!
But, back to our birthday!
Who would have thought someone would be jealous of having dementia?
Our 5th birthday party was held in lieu of our regular Cafe Le Brain and members meeting, with a high attendance. It was an open session, with everyone being welcome, and access details made publicly available. Most of our events last for up to 90 minutes; this one went for 2.5 hours, and only ended as those of us who were there the whole time we exhausted! People dropped in and out as they were able to, and everyone had a lot of fun.
Today, we are delighted to share a guest blog, written by one of our newest friends and supporters Tamara Claunch, who attended the celebration, and who has also agreed to volunteer for DAI. We will be sharing some exciting news about that in another blog very soon!
The Joy of DAI and dementia
By Tamara Claunch, written on Janauary 17, 2019
Yesterday I experienced being jealous of having dementia for the first time. If I had dementia, I would be allowed in the club. Yes, the club is that good.
Dementia Alliance International celebrated their fifth birthday recently.
I, along with other professionals, friends and family was invited to join the online, global celebration. It lasted longer than expected and was very well attended. Over 80 people called in on video from all over the world and the facilitators did a fantastic job of recognizing all attendees and making sure all had a chance to introduce themselves and say a little about DAI.
As I listened to the attendees speak, what struck me was how each member of DAI evidenced a lightness of the spirit, an openness that comes with wisdom and gratitude. Wisdom because they’ve experienced intense trauma and loss.
Gratitude because they’re together.
At least this is my interpretation of the energy in that communal space; I would not presume to know how it feels to be them.
At first, I was reminded of Alcoholics Anonymous: the old timer success stories inspire the freshly baptized-with-fire newcomers. They befriend and teach and support one another. As the group gets bigger, it adjusts – more local support groups, more online support groups, more specific support and study groups.
Absolute inclusion. Like AA, there’s only one criterion for joining: you must have the same “condition” as everyone else in the group.
How must it feel to being newly diagnosed with Alzheimer’s, frontal lobe or Lewy body dementia and given less than five or ten years to live? To believe the majority of those years will be spent dependent upon others?
Imagine then how it might feel to meet dozens of people all over the world who are living beyond dementia. People who are fighting their illness and defying expectations. People who are still independent, social and active a decade or more after diagnosis.
At the birthday party, I saw new DAI members experiencing hope for the future, perhaps for the first time since their diagnosis. As one member put it, “I can fight this and make it [the time] count”.
I saw “old” DAI members reconnecting and seeing each other for the first time in a while.
People laughed and joked, empathized and encouraged. They held a moment of silence for members who are no longer around. All appeared to have a sense of purpose and community and to feel that they are part of something bigger than themselves.
While the members of DAI were uniquely individual, as were their stories, I perceived some common threads running through the tapestry of lively conversation and heartfelt congratulations:
- They are all immensely grateful for DAI and the impact that it has had on their lives.
- It’s okay to make fun of dementia, only if you have it.
- Every journey has a purpose.
For a brief time, I was able to experience the humor and humanity and open lightness that exists within these people and between them.
Contrary to how the media, some caregivers and the medical establishment portray dementia, these people are not dumb. They are not dull. They are not incapacitated. They are funny and bright and witty and inclusive.
They are, simply, humans being human. As one member said, “Individually, we have deficits but as a whole we are magnificent.”
As an Integrative Wellness & Life Coach, speaker and writer, I specialize in working with people who have dementia. I am an advocate, a partner and a champion of persons with dementia. But all my passion and all my expertise did not prepare me for what I experienced during DAI’s 5th birthday party.
It ended up being one of the most present, precious experiences of my life.
If only the world could see these people and hear their stories then maybe, just maybe, the world would start to treat them as human beings deserving of dignity, respect, and inclusion.
So while I may not long for a diagnosis of dementia, I would love to belong to an organization like Dementia Alliance International. They have a lot of fun and they do a lot of good for others. They make a real difference in the lives of people all over the world and I am grateful to be a supporter and friend of the group and its members.
Copyright: Tamara Claunch 2019
About Tamara: Tamara Claunch, MEd, is an Integrative Wellness & Life Coach and the Founder of VitaV Wellness in Aging. She has worked extensively in partnership with the Center for Applied Research in Dementia. Her main areas of expertise are dementia risk-reduction and alternative, nonpharmacological interventions for those living with symptoms of dementia and Mild Cognitive Impairment (MCI). She has extensive experience working with individuals, families and the broader medical community to enable independence, dignity and equality in the lives of people living with dementia. Her passion in life is helping others find purpose in their journey, wherever it may take them and whatever it looks like.
Thank you Tamara for this beautful reflection, and thank you Fei Sun for the image below of some of the people who joined us.
Image source: Fei Sun