We have just finished our annual fund-raising walk for Dementia Education, Inc., a Citrus County-based nonprofit that supports families living with dementia.  As always, I came away from this event in a state of gratitude and wonder!

Dementia is our most feared medical condition, even above cancer, heart disease, and stroke.  This is not surprising because dementia lasts eight to 12 years after diagnosis, and it eventually can require years of around-the-clock care.  It is expensive, exhausting for the care partner, and traumatic for everyone involved.

Little wonder then that most of us, after we have traveled this journey, want nothing less than to run and hide.  We never want to deal with or hear about dementia again.  This is a natural and justified response, and I would never criticize anyone for feeling this way.

This is why I am astonished that so often the horrendous experience of dementia has just the opposite effect.  I cannot count how many people I’ve met who traveled this awful road, then turned to retrace their steps to become angels of compassion and mercy for those who are coming behind them.   Not surprisingly, our Coping with Dementia fund-raising Walk seems to be a gathering place for these kinds of people.

The good will of Dementia

First, I think of Dementia Education’s board of directors.  Each of these women and men have gone through the experience of losing a spouse or parent to dementia.  Yet they dedicate many hours of their time to voluntary service to create and fund programs that will benefit current and future care partners in Citrus County.  Many of them give additional monetary gifts, then turn out as workers at the Walk to make sure everything runs smoothly.

I think of Judy Spencer, a resident of Grand Living who, after losing her longtime friend to dementia, has become the King Kong of team-builders for the Walk.  She relentlessly prowls the halls of Grand Living on her scooter, recruiting residents to join their team.  Three times she has won the Mary Blair Darling Award by creating the largest team, generating upwards of $2,000 each time. 

There is a member of one of my support groups whose husband has been diagnosed with early onset dementia.  They are both years away from Social Security and he can no longer earn a living, so she must provide for their family’s needs.  Yet, on a Sunday they put on their purple shirts and set up a table at their church to solicit support for other families living with dementia.  This year, they and their nine-year-old friend proudly handed us more than a thousand dollars in small bills!  You could see the joy on the young girl’s face because she alone had raised over $300!

This young lady, and others like her, remind us that dementia is a disease that does not affect only the elderly.   This year, a group of students at Lecanto High School created a Dementia Awareness Club that has recruited more than 40 members.  Many of these young people have already experienced dementia through the lives of their grandparents.  They had a table at the Walk, and they were a hit!  For those of us who have already traveled the road, we saw evidence that our future is in good hands!

I have talked about fund-raising in this column, but money is not the point!  It is what is behind the fund raising that counts, and this is the good will, compassion, and desire to ease the burden for others who will travel this road. 

Can anything as awful as dementia have good results?  Yes, of course!  I see it all the time. I saw it again this year at our Walk, and I never fail to stand in awe of those who turn their pain into compassion and kindness for others.

They too realize that we all deserve the best!

Thank you all for your continued support.

About Debbie Selsavage

Debbie Selsavage is a Certified Trainer and Consultant in the Positive Approach to Care and a Certified Dementia Practitioner.  She authors a monthly column to assist caregivers in coping with Dementia. Her company, Coping with Dementia LLC is dedicated to making life better for individuals living with dementia.  Contact Debbie at deb@coping.today.