Visionary Award Nominee: Marcia Burr


Visionary Award Nominee: Marcia Burr

Nominated by: Kristene Thompson

Tell us about the nominee's caregiving story.
Prior to Marcia's partner getting an Alzheimer's diagnosis she was fighting her own demons, i.e., alcohol. After years of caring for her mom who died of cancer, a nephew who commited suicide and a sister who was shot in the head but lived, Marcia not only went deep off the wagon and also suffered a widow maker heart attack.

When the diagnosis of Alzheimer's came in she was in very deep denial. At some point someone said something to her that flipped a switch inside of her. Her denial went away and a new person emerged. The love of her inflicted partner was strong enough to turn the tides. She looked around at all the people suffering and affected and found there was still hope, smiles and love. She realized she had to work this realization and rise above, and she did.

She found selflessness and found a way to drive this dementia bus to a "happy place". This became her mission; to keep her and her wife in a happy place and make the best of their journey. Marcia was able to communicate with her wife and they talked about this happy place many times. It was both of their desires for Marcia to channel her anger into the action of reaching out and connecting with others who travel this lonely, misunderstood, ever-changing world of dementia. Marcia and Gaydonna decided that both of them were going to die anyway and they may as well make the best of it and live until they die! Marcia fought hard for this and not only did it help make her loved ones journey as bearable as it could be, she also found this burning fire inside of herself. She came to know that none of this was about her, but instead, about the millions of people out there that need help and love. She learned that service is joy. From Marcia's horrendous caregiving experience many great things are coming to light for many people. Marcia's loved one has passed now, but Marcia's journey is not over, not by a long shot.

Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
Marcia continues to be a huge voice for dementia even though her caregiving journey is over. Marcia is on a mission to teach caregivers how to give and receive assistance. Marcia created a support group in her small Florida community. Her vision is that caregivers everywhere can link together in order to give support and help to one another. Too many caregivers are doing this alone. The group Marcia created has brought people together to receive support who otherwise would have nowhere to turn.

Marcia stays active in Facebook groups offering her support and wisdom where she can. She posts gratitude lists, articles, and all sorts of great things to inspire caregivers. She tries to show everyone that love is the key in this journey. Marcia is always upbeat and positive and has great energy which is important to caregivers living on the edge all the time.

Marcia is currently involved with the Dementia Spotlight Foundation. They are raising money for free respite care for caregivers in Tampa Bay. There will also be speakers talking of positive ways to improve communication and handle behaviors, as well as Caring for the Caregiver. The Tampa Bay Alzheimer's Music Fest will be the highlight. There will be a lineup of dementia and caregiving specialists speaking throughout the event. Marcia is extremely passionate about helping the caregivers and finding ways to help make the journey better. She is spreading the word and asking for help from other caregivers who are always looking to find ways to continue to help others in their own journeys. Marcia's energy and voice give many people hope.

The biggest way Marcia continues to inspire others is by continuing to holler her story from the mountain tops while inspiring others to do the same. I have seen more than one caregiver, whose voices were non-existent, to rise above and become a voice themselves. She has enabled otherwise lost souls to rise up and tell their stories and never want to stop. I see her inspire other caregivers to keep fighting this battle and continue to advocate even when their journey is over.

A key ideal that Marcia strives for is finding ways to get real help to real people right now! She recently launched a new playlist on her YouTube Channel called Care Partners Tip of the Day. It is a public channel for dementia care partners to find suggestions and little tricks that have helped others. She invites anyone to send her their little one minute video tips in a personal message on Facebook and she will upload them to the playlist. Each tip of the day will be dated and given a short title that tells you what the tip is about so anyone can easily view the list and find a quick video that might help them. There is so much information out there, sometimes it's hard to find. This way, she is hoping it will be a little easier!

What makes the things Marcia does innovative is she keeps those that might otherwise sink into despair to have hope and be able to see that there is a light at the top of this rabbit hole. You would think love would not be innovative but I think in this circumstance it absolutely is because love can get so lost in this dementia trip. We tend to forget. Marcia makes sure we do not forget. In the process she finds ways to open doors for better circumstances for caregivers and their loved ones. She never stops fighting for a better journey for caregivers.

How does the nominee inspire others?
Marcia inspires others with her upbeat and positive attitude. Marcia inspires others by always coming from a place of love. Marcia is very active all over Facebook in many caregiver groups. She is always eager to lend a helping hand or just lend an ear. Marcia encourages caregivers to take care of themselves. which is almost always forgotten along the way. Hearing her remind caregivers of the importance of self care make it happen more often than it otherwise would. Marcia continues to be a strong voice in her community and is always working on various ways to help other caregivers. Marcia's presence gives other caregivers the ability to find their own voices to fight for caregivers and their loved ones.

Marcia has reached out through her pain to help others who were about to go through things she’d already been through. If we as caregivers feel that we can’t help others with what we learned, we feel that our journey was somewhat wasted. Marcia’s willingness to reach out to help others find their happy place has been awe-inspiring.
Marcia continues to be as active as she can be, to find ways to benefit caregivers and keep them from being forgotten. She is hands on in her community and reaches out to various organizations to try to find new and innovative ways help grow her vision of helping caregivers right now when they need it the most.

Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
VJ. J. Texas caregiver

In an effort to find others who understood my caregiving journey and learn as much as I could learn about Alzheimer’s and other dementias, I joined as many Facebook groups as I could find. Marcia and I ended up in many of the same groups and she became more than just someone on Facebook.

Her upbeat, no nonsense, grateful attitude was refreshing and encouraging to many.

We have been friends 4 years now and it has been so awesome watching her evolve from a caregiver of her wife and sister to caring for herself and then becoming the caregiver of many as she strives to make a safe place for caregivers to meet and share in her community.
Teresa B, NC caregiver

I was two years into caregiving my dad 24/7 and at the end of my rope when I met Marcia Burr. We met online in a caregivers group. She was very attentive immediately To my state of mind. It’s like she truly understood. I was ready to give up. I felt like nothing I was doing made a difference. Marcia pulled me out of a hole into a dark reality that I was not alone. There were other caregivers out there making the same sacrifices as I was and going through the same or ordeals alone-without family support like I was. It became very clear to me that even the ones who said “ call if you need me “ had good intentions but not a clue how I needed help. The words I could say to them astounded and frightened them. They honestly did not want to hear the details I needed to share.
Marcia became my sister in spirit very quickly. She was always there when I needed to vent or complain or just cry with her.
We have never met in person but we know each other’s soul.
Marcia Burr truly has a gift. She is the most beautiful and amazing person who honestly cares about people. She strives to create positive energy and ripples.
Betsy W, New Jersey Caregiver

Marcia Burr inspired me the first time I read a post about her wife, Gaydona who had Early Onset Alzheimer's!
Marcia talked about finding your happy place, having gratitude , & sharing your caregiving experiences!
Thanks to Marcia , I started sharing my experiences & helping other caregivers!
Marcia started a support group in her town.
Marcia is also volunteering at the Alzheimer's Music Fest in March!
Marcia is so deserving of this award!
Anne F, Florida Caregiver

Marcia has taught me what true love is. I met Marcia through Facebook. I felt like I knew her after just a few months. Marcia was homebound because she was taking care of her partner in the advanced stages or early onset Alzheimer’s. Marcia only lived 3 hours away from me. We had never met in person. I knew that she was struggling to keep things going. She couldn’t leave the house to even buy a gallon of milk, much less anything to eat or sustain life. I felt compelled to help. I went to a local warehouse store and loaded up on things that every household needs, laundry soap, softener, cheese, coffee, dog and cat food, paper plates, etc. I took my loaded trunk to that small quaint town where she and her partner lived. I didn’t know what to expect, she had no idea what I was doing, it was just a visit to meet her. I met her and her partner that had Alzheimer's. I spent a lot of time that day with them. I thought that I was bringing the gift, a care package. What I actually received was the biggest gift that simply cannot be purchased from Marcia. I saw unwavering love and care. Patience that is unmatched by any saint. Marcia was worn down, more tired than anyone has ever been, I am convinced. She was gracious and thankful, but it was me that was the more thankful one. I learned just what it takes to care and love a person with this disease. This has helped me immensely with caring for my mother that has late onset Alzheimer's. I came back with a different attitude and knowledge of what it really takes to be a caregiver. My heart had changed that day. My care and love for my mother that has Alzheimer's grew that day. I am a better caregiver and person as a result of seeing how to love and to care for a person with this horrible disease. Marcia continues to advocate for caregivers. She spends an enormous amount of time supporting caregivers and teaching without even knowing that she is teaching.
Drollene B, Florida Caregiver

Marcia Burr is a shining star and a guiding light for caregivers. When my husband, Al, was deteriorating due to Alzheimer’s Disease, she was a steady source of support. She understood what I was going through when he was still at home, and she uplifted me when he went to a nursing home. When I doubted myself, she was always there to tell me I was doing the right thing. When something went wrong at the facility, she was on my side in my effort to set the situation aright. Her knowledge is amazing, and the depth her compassion is immeasurable.
Cassidy B, Washington Caregiver

To whom it may concern,

I would like to share with you about my dear friend Marcia Burr. I met Marcia in 2016 through an online dementia support group. I was instantly drawn to the awareness she was creating, as I too have been on the same journey. Marcia saw the need to enlighten and lift up those on her journey, this included family caregivers either just starting their caregiving journeys. And those in the midst of their caregiving journey, struggling to keep going. She was all but screaming from the roof tops about her mission. So that her journey caring for her beloved partner Gaydona until her passing from dementia, could be used to create awareness and help those caring for those afflicted with a dementia related disease. So that they knew that they weren't alone. From starting her own caregiver and dementia online support groups, to becoming a moderator in my own online support group with 5,000+ members worldwide, to writing newsletters, to going out into her own community with her support group the life raft, and advocating for Alzheimer's music fest in Tampa in march of 2019.... She continuously goes above and beyond to be an advocate and voice for her fellow caregiver, and those with a dementia related disease. I ask you to please consider my dear friend and valuable moderator as the recipient of your award.
Shawn M, Utah Caregiver

13 February 2019

To Whom It May Concern:

I’m writing this as a tribute of gratitude for Marcia Burr’s presence, wisdom, and her incredible reservoirs of experience and knowledge about issues related to the precarious, wonderful, and heart-breaking journey that caregivers embark upon with Alzheimer’s and dementia patients and loved ones.

Although she is now a trusted friend and confidant, I first became aware of her as a friend of a friend online when she observed me struggling to meet the needs of a then-client suffering from Levy-Body Dementia. Without impugning my care, she reached out to me and offered some suggestions. After applying them, I reached out for more advice and eventually she invited me to join an online support group that contained an eclectic group of caregivers from all walks of life and educational backgrounds with one common factor: every single one of us were the primary caregivers for a loved one.

Marcia literally and figuratively threw me a lifeline that lead me into a supportive community where there was no judgment of our personal meltdowns when we were at our wits end from the isolation, workload, and frustrations of being familial caregivers. She was an incredible asset of information from a medical, psychological, and sociological perspectives and as I availed myself of her resource as an educator, my own confidence in my caregiving abilities grew, I found that it was helpful not only to my loved ones in that the level of their care exponentially improved, but my growing confidence enabled me to intelligently advocate for them in an articulate manner with medical professionals and see that they, in turn, treated me better because I could speak their language.
Even at the end of our spouses lives, she has inspired me and others to embrace and embark upon a follow up journey of self-care and discovery in our “new normal” while continuing the work of advocacy and education about the scourges of Alzheimer’s and dementia.

Marcia Burr is an incredible human being with a heart of loving advocacy and I sincerely hope that she’s recognized accordingly.

Respectfully yours,
Shawn Mory McMillion
Renee S, Michigan Caregiver:

So much can be said about Marcia’s passion related to caregiving. Like so many of us, she has lived through it, but unlike many, she continues to serve as a care-thriver.

I met Marcia via an on-line caregiver support group on Facebook during my 6+ year journey of caring for my Great Uncle Sam who was experiencing vascular dementia. She was caring for her wife with Alzheimer's. As no two experiences are alike when it comes to caregiving, it was a great comfort to know that I was not alone on this journey. Marcia shared many stories and pictures of her journey and always encouraged others to share their stories and photos. In no time at all, Marcia became family.

She is compassionate and strong-willed so when she told me about her desire to start a live support group in her local community after her wife had passed, I knew I wanted to be a part of it with her. Like caregiving, this was a journey I knew she would thrive at! The miles between Florida and Michigan are great, but I had no doubt that she would be able to reach and help many others, so without hesitation, we spent numerous hours brainstorming ideas on the phone and she successfully launched The Life Raft…….. a live support group for caregivers in FL.

Marcia continues to remain active in various on-line support groups as well as lead The Life Raft, as she fully recognizes the need for those who are still on the long journey to know that they are not alone. She continues to share her stories and pictures, so that awareness of the entire dementia journey can be continued. She remains optimistic and open to the idea that one day there will be more effective resources to caregivers, so that they are able to care for themselves while caring for their loved ones.

Caregiving oftentimes is lonely and difficult, so maintaining a positive outlook is challenging. Marcia has inspired me to want to help others, in whatever way I can. Caregiving changes many people, and I am forever grateful to have been changed by Marcia’s example.

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