Please listen to the WBUR’s special report on The Mental and Physical Toll of Alzheimer’s Care.
Thank you WBUR for reporting on this topic affecting so many of us.
My personal story, recorded Oct 5 at Brooksby Village, Peabody, MA, will be available on the “marymacmissions” YouTube channel in a couple of weeks.
Moving forward with a listening heart,
vision, inquiry and action,
~ Mary
Please check out WBUR, Boston’s NPR station and website.
They have done a great job covering a story about Theresa and Mary Agnes – a Boston-based daughter and mom (age 82) living with early stage Alzheimer’s. A year ago, Theresa started a Twitter account (@maryagneskelley) that shares her mom’s voice with the world. In the below excerpt, Mary Agnes says, “easy does it… but do it.” This inspires my own steps forward and illustrates the wisdom expressed by persons living with dementia who are so often our teachers (even when compromised physically and mentally by degenerative cognitive disease). Words are not always possible. Love and light move in and through us without form.
Moving forward with a listening heart,
vision, inquiry and action,
~ Mary
Mary is still in the earlier stages of Alzheimer’s disease.
“I’m ready to accept the fact that there’s a time where she may not remember me,” Theresa said. “A neurologist said to me once, you may want to get your shield of armor ready. But that doesn’t bother me personally. Even if she doesn’t remember me, I’ll still be coming down here to be with her.”
Theresa said she plans to keep tweeting for her mother until the very end.
“That will be my hardest tweet to send out, when Mary goes straight to heaven. But we’re going to keep tweeting, right?” she asked her mom. “Oh, I hope so,” Mary said. “I’ll get better at it in time.”
Theresa asked Mary if there was anything she wanted to say to all her followers on Twitter.
“Easy does it,” Mary said. “But do it.”
“That might be her tweet for the day,” Theresa laughed. “Yeah, we’ll tweet that later.”
Marymac Missions is now broadcasting at the YouTube channel “marymacmissions.” As a start, the channel has a playlist titled “Mary and Margaret” which includes four videos that educate folks (families living with degenerative cognitive illness) on the universal topics of “Enjoying,” “Saying Goodbye to Friends,” and “Singing When You’re Dying Inside.”
Here is the playlist description:
Mary and Margaret video clips show interactions between Mary E. MacDonald, founder of marymac missions, and her mom, Margaret, who is living (at the time of the recordings) with a neurodegenerative brain illness (FTD with Parkinson’s symptoms). The clips are offered as positive examples of going with the flow, creating meaningful goodbyes, and naming our own feelings/awareness when paradox is present. The descriptions associated with each clip provide a light analysis of what’s really happening here – from the perspective of the caregiver (Mary) and the care-receiver (Margaret). The clips also illustrate that the primary caregiver has so much potential to influence positive interactions with the person they care for who lives with a degenerative cognitive disease. A memorial video shows the vibrancy of Margaret’s life as a child, young adult, wife, mom, and teacher.
Please share these new resources with friends and families you know who may benefit.
Moving forward with a listening heart,
vision, inquiry and action,
~ Mary
Yesterday afternoon I made a presentation to the residents and staff at Brooksby Village in Peabody, MA. I demonstrated my “Quick Check” breathing break and “Letting Go” Meditation. I also shared some of my background story that led me to create a social enterprise, “marymac missions” and the website, rest-stop-ranch.com. I enjoyed meeting the folks who came.
We will be posting sections of the presentation to this site and/or the rest-stop-ranch.com site as the video clips become available.
Moving forward with a listening heart,
vision, inquiry and action,
~ Mary
Marymac Missions is featured in the Canadian Room 217 e-newsletter, “Doorway to Room 217″ this month, in their “Rooms Around the World” section.
Read the article, “Increasing the Options, Supporting Life Experience”
The Room 217 Foundation is a Canadian organization that supports palliative care at end-of-life. The founder, Bev Foster, has a personal story similar to my own, in that she has used music since her teenage years to comfort family and friends living with illness and then turned that into a broader outreach. Read an excerpt from her story below:
Since 2005, the music of Room 217 has been a peaceful presence in the lives of thousands of people. While palliative care is at the heart of Room 217, the Room 217 resources have been embraced as comprehensive therapeutic music resources that reach across the live span and offer relaxation, encouragement, sleep promotion, comfort and support in a broad range of circumstances and rooms around the world. The most common uses include:
- wellbeing
- caregiving
- therapeutic intervention
- spritual enrichment
- atmosphere
- Alzheimer’s and dementia care
- end-of-life and after care
- recreation and leisure
- baby careIn 2008, the Room 217 Foundation not-for-profit corporation was established and in April 2009 we became a registered Canadian charity.
Moving forward with a listening heart,
vision, inquiry and action,
~ Mary
The Marymac Missions’ Quarterly Update – Fall 2011 is now available. Read about the highlights of our growing services.
Happy Fall!
~ Mary
Dear Friends,
Today is World Alzheimer’s Day. It is also the first year anniversary of the day our small team North of Boston launched the website, rest-stop-ranch.com. The initial intention of the site was to serve dementia caregivers. This group of 70+ million individuals worldwide, after four years of 24/7 dementia care, are at higher risk for heart disease, heart attacks, hospitalizations, chronic depression and anxiety, and death… due to the chronic stress of a dementia caregiving role.
Today we are proud to announce the launch a new free service on the rest-stop-ranch.com website, designed to provide additional support to caregivers and care-receivers. The “Me Moments Collection” is a podcast library of two-, five- and ten-minute relaxation breaks (including musical interludes) which users may select based on their specific needs (i.e. relax or revive, meditate while sitting or walking, restore on a park bench, on a sofa, in a recliner…)
The Me Moments Collection is available as a complimentary service to registered users of our website. There is no fee to register. Simply visit http://www.rest-stop-ranch.com/wp-admin/ and sign up. We will email you a password and instructions for how to access the library. (If you would like to preview some of our Me Moments episodes before you register, visit http://www.rest-stop-ranch.com/me-moments-sampler/ .)
ALSO NEW… Our recently published “Take Care of Yourself: Seven Sustainable Skills for the Long-Term Care Journey” journal and pocket guide is now available at the rest-stop-ranch.com gift shop, Rest.Stop.Shop. These print publications offer support and coping tips in the areas of intentional breathing, meditation, restorative postures, long-distance nutrition, 24/7 retreat strategies, art, music and movement therapies.
Please share these resources with friends and family members experiencing Alzheimer’s/Dementia and other long-term illnesses.
Sincerely,
Mary E. MacDonald, M.A.
Founder, marymac missions LLC
Kudos to Sally Abrahms and the editorial team at AARP Bulletin for covering the topic this month, “The Caregiver’s Dilemma.” The article does a great job summarizing the social situation and offers practical advice to caregivers on discussing the topic of family caregiving and work performance with a boss.
Moving forward with a listening heart,
vision, inquiry and action,
~ Mary
I’m so happy to hear about the progress that has been made in ALS research. My talented and loving grandfather, John C. Fraser of Seneca Falls, NY, died of this disease and I know so many others who are currently journeying with this debilitating illness. The disease process discovered may also share some commonalities with that of the Alzheimer’s/Dementia process. Please see the content quoted below for a summary of the news.
~ Mary
SUNDAY, Aug. 21 (HealthDay News) — The apparent discovery of a common cause of all forms of amyotrophic lateral sclerosis (ALS) could give a boost to efforts to find a treatment for the fatal neurodegenerative disease, a new study contends.
Scientists have long struggled to identify the underlying disease process of ALS (also known as Lou Gehrig’s disease) and weren’t even sure that a common disease process was associated with all forms of ALS.
In this new study, Northwestern University researchers said they found that the basis of ALS is a malfunctioning protein recycling system in the neurons of the brain and spinal cord. Efficient recycling of the protein building blocks in the neurons are critical for optimal functioning of the neurons. They become severely damaged when they can’t repair or maintain themselves.
This problem occurs in all three types of ALS: hereditary, sporadic and ALS that targets the brain, the researchers said.
The discovery, published Aug. 21 in the journal Nature, shows that all forms of ALS share an underlying cause and offers a common target for drug therapy, according to the researchers.
“This opens up a whole new field for finding an effective treatment for ALS,” study senior author Dr. Teepu Siddique, of the Davee Department of Neurology and Clinical Neurosciences at Northwestern’s Feinberg School of Medicine, said in a university news release. “We can now test for drugs that would regulate this protein pathway or optimize it, so it functions as it should in a normal state.”
This finding about the breakdown of protein recycling in ALS may also prove useful in the study of other neurodegenerative diseases, specifically Alzheimer’s and other dementias, the Northwestern researchers said.
ALS afflicts an estimated 350,000 people around the world. About 50 percent of patients die within three years of the first symptoms. They progressively lose muscle strength until they’re paralyzed and can’t move, speak, swallow and breathe, the researchers said.
Mary Speaks
It is National Family Caregiver Month and National Alzheimer’s Awareness Month. It is the perfect time to give voice to the social issue that is disabling so many families and family caregivers and shine a light on the support services that we have created.
The “Rest.Stop.Ranch: Brooksby Village Chapel Presentation” that I delivered in Peabody, MA on Oct 5, is now available at our YouTube channel “marymacmissions.” The presentation includes the following clips:
1- Intro and Welcome
2- Quick Check Guided Breathing Experience
3- Letting Go Guided Meditation Experience
4- My Life Changing Experience
5- My Recovery and Renewal
6- Website Demo: rest-stop-ranch.com
7- Rest.Stop.Ranch Garden Slideshow
8- A Social Enterprise
9- Comments, Questions, Conclusion
The “Mary Speaks” playlist is described as:
Three years after her mom’s death from the neurodegenerative illness FTD (known as one of the toughest dementias/mental illnesses on families), Mary E. MacDonald, founder of Marymac Missions, answers the invitation to speak about her personal story and demonstrate the new services that have evolved from a devastating experience. The 60-minute presentation at Brooksby Village Chapel, Peabody, MA has been edited into a handful of easy-access web clips. Recorded: Oct 5, 2011.
Please share with families and friends who may benefit.
Moving forward with a listening heart,
vision, inquiry and action,
~ Mary