I Feel Humbled

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I Feel Humbled

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I have been an advocate for many things in my life. There was always a "cause" I was supporting. I always felt I needed to add my voice to help promote the good of others.

I have sold many things to support causes, from candy bars to raffle tickets. I have been the person to put together many fund raisers over my lifetime. I organized everything from car washes to Elvis impersonator contests. When I go "in" on a cause, I go ALL in. I am sure there are companies out there that cringe at the sound of name, knowing I am going to ask for a prize, or a donation. I have no shame in asking people to support a good cause. Of course, I have also bought wrapping paper and candles for other people's causes, as well. I believe in reciprocation.

Most of the things I supported came as part of either belonging to a group, or to support a sport, or some activity for my son. Since my son has become an adult, I have still been involved in activities and fund raising for various events. I have always been a joiner. I have always felt a need to be around others who shared my enthusiasm for "the cause".

I suddenly became part of a cause that did not allow me to join on my own free will, it just happened and I had to go along. I found myself the care partner to two people with dementia, my Mom (vascular dementia) who lives with us, and my husband (frontotemporal degeneration, or FTD), better known here as The Twins. Although my grandmother had dementia and had to be in a group home, she was well into her 80's and it seemed a normal part of aging. It was hard to know she could not live at home, but no one was sleeping due to her calling out all night.

I expected Mom to have memory loss after her TIA's so it seemed "normal". Taking care of her led me to caregiving.com and being in caregiving.com led me to know my husband had frontotemporal degeneration (FTD). It was the cause of him becoming someone I no longer knew. His personality changed, his eating habits changed, his agitation at the smallest things seemed so unreasonable. I was glad to know we had a name for it, but sad to know it was untreatable, incurable, and terminal. At age 63, he had to stop working, stop driving and we had to give up our dream of traveling full time in an RV. It was a lot of adjustment.

Being the type who seeks support and readily gets on the band wagon, I jumped full force into being an advocate for FTD. I learned everything I could about FTD (theaftd.org). Denise, at caregiving.com, gave me a platform to help other people who had FTD creep into their life. I started a chat for FTD caregivers, I also started a monthly podcast with Dr. Geri Hall to help those who struggle with the symptoms of FTD in their lives.  I asked to be a part of the Second Annual Caregiving Conference, to help those caregivers who have FTD in their lives. Denise has opened her arms to the FTD community in a very gracious way. I joined several Facebook groups for those dealing with FTD. I attended in person support groups, and even started one more local to my home. I was "all in" on making FTD a household word that had nothing to do with floral delivery.

The more involved I became, the more opportunities came to me to advocate for those of us dealing with dementia in our lives. I was asked to join the caregiver stakeholder group for the NIH Research Summit on Dementia Care. This is the group who will provide the direction for the use of the government funding to help support those with dementia and their caregivers. I was honored, and very humbled, to be a part of this small team of caregivers from across the US. There will be a National Summit on October 16, 17, 2017, that will address the issues of caring for someone with dementia. It is open to the public, and registration begins July 20.

I have been further humbled to be asked to present as one of three caregivers, nationally, at this conference. My sincerest hope is that I represent those with dementia and those caring for those with dementia, well. My biggest fear is not that of speaking to a large group, but rather that I represent each person who is living with this devil called dementia. I want each voice heard through my words. I want each family who has experienced such loss and grieving of the living, to be represented in my words. I want each government official, doctor, health care provider, researcher in the Summit to go away knowing what it is like to be a family living with dementia, especially those with FTD who are affected as young as their 20's. I want everyone to know it is not always Alzheimer's, that over 100 diseases cause dementia, and each person with dementia suffers along with their family and friends. My hope, in this extremely important Summit, is that I make a difference for each and every person with my one voice. This is the most important thing I have ever done in my years of advocacy. Please let me have the right words to make the difference.

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FTDMarcia

You are humbled, we are blessed. Blessed to know you, blessed to have you so strongly using your voice to advocate for those of us affected by FTD and other dementias. You will speak with truth, frankness, passion, and grace as you always do, and I have no doubt every single one of us will be well represented.

jan

Wow, Sharon, I am tearing up reading your post. Your passion and honesty burst through each line. I have no doubt you will represent caregivers and their carees to the fullest extent. Like so many issues we now take for granted, but at one time were advanced by individuals who were focused on a mission of service, hopefully dementia will be seen for the tragedy it truly is, and can be dealt with. Good job, and thanks.