This past week I was interviewed by my undergraduate alma mater, University of Rochester, in New York State, for their Rochester Review alumni magazine. Once again, thankfully, I was indirectly invited to become crystal-clear on what I and we’ve been doing since 2010, and why. I was able to articulate that it’s really two seeds of discontent, two painful gaps, that I experienced as a dementia-caregiver, that has sparked my passion and persistence to make a difference these years. The team, mentors, volunteers, and donors supporting all things MaryMac Missions have resonated with these gaps and is responsible for our growth year after year.
These two seeds are:
1. 2008, Mother’s Day: we couldn’t smell the roses.
I brought mom, in her last months of life, wheelchair-bound, to a local botanical garden in MA. I expected to be able to access a rose garden (i.e. “smell the roses”). I needed this as much for myself (a sense of respite and recreation, a beautiful and lasting memory) as I wanted this to be a restorative and joyful experience for her. The reality didn’t match my expectation. We didn’t smell the roses. We couldn’t access the rose garden –– it was not wheelchair-accessible.
Our LOCAL Survivor’s Mission/Action: on World Alzheimer’s Day, September 21, 2010, we launched the website, rest-stop-ranch.com, with online respite services and the intention to transform our property into a wheelchair-accessible sanctuary for other families dealing with dementia’s devastating effects. In 2011, we built a wheelchair-accessible garden loop in our front yard–– the MargFMac Front Garden Loop, 0.1 mile. One of many wheelchair-accessible features is a Rose Arbor. Since 2013, we offer seasonal (April – October) Sunday Strolls once-a-month. In 2015, we joined the global movement and added a Memory Café. 2016 & 2017, we received MA State Department of Developmental Services seed-funding. This year, we will offer a Memory Café most Saturdays, 10a – 12p.
2. 2010, January: I narrowly survived FTD dementia-care.
My dementia-care experience nearly killed me. For many elder DCGs, dementia-caregiving stress contributes to the final blow. Ivory-tower experts know that dementia-caregiving is bad for your health. I arose from 12-months of full-fledged PTSD, post dementia-caregiving, to learn that years of research, in the area of dementia-caregiver health effects, interventions and recommendations, had not yet become integrated into local community-based healthcare delivery systems.
My GLOBAL Survivor’s Mission/Action: In 2010, after founding MaryMac Missions LLC on April 19, with the web design & development help of Don Meskie and Kate Broughton of Amesbury, MA, we launched a one-page website, marymacmissions.com, and I flew out to Vancouver, Canada to showcase the new social enterprise at the Social Enterprise Alliance World Summit. I became a Certified Kripalu Yoga Teacher (over 400 hours), Life Coach and Group Leader. I began speaking about caregiver self-care in church halls, at long-term-care centers, and professional meetings. In 2013 I gave a keynote talk at the Alzheimer Association of Central New York DEMENTIACARE conference, with the beginnings of a graphic book on the self-care topic. Since then, I educate long-term-caregivers wherever I am about self-care. Right now, I’m in Concord, NH.
Moving forward with a listening heart,
vision, inquiry, and action,