Caregiving

Mindful Caregiving

I hadn’t expected to feel so tender when I attended the 33rd Annual Alzheimer’s Disease Education and Training Conference for Caregivers and Professionals at the FSU College of Medicine. Held Saturday, February 10 from 8-3:00 PM, it was a joint presentation by the Alzheimer’s Project and FSU College of Medicine. I have attended this excellent conference in the past and hoped to learn more about the disease that has touched my own family in significant ways. I expected to gain greater understanding, but received so much more.

There were nineteen vendors in the atrium of the Medical School building. Every table was ladened with resource materials for persons who are living with dementia or caring for them. The atmosphere was upbeat. Volunteers from the Alzheimer’s Project and the Medical School were assisting guests with everything from parking to escorting loved ones living with dementia to the on-site respite room. Their warm welcome created a sense of anticipation.

I learned again what I had no doubt heard before, that the conference was started by the Pilot Club of Tallahassee, which was founded in 1935 and is connected to a worldwide volunteer service organization. The mission of the organization, named for riverboat pilots who “steered a true course through troubled waters,” is to promote brain safety, brain research, and assistance to those with brain-related disorders. In 1985, the Tallahassee Pilot Club started a free conference for caregivers of persons living with dementia in response to a member of the club who was caring for her husband diagnosed with Alzheimer’s. Through the years it has grown both in size and course offerings. This year there were eight workshops and three plenary sessions by a prestigious faculty.

The opening plenary was by a graduate student in Music Therapy at FSU. What touched me most was how passionate she is about not only helping persons living with dementia but also their caregivers. Sitting in the auditorium with our eyes gently closed, she led us through a lovely metta prayer accompanied by her soft guitar. I realized just how weary I feel. It chips away at your soul to see the vibrant parent you loved and admired wondering who they are, where they are, and who you are. Generally, with God’s help and the encouragement of others, I am able to keep my head up and my spirits lifted. My mother and I still have many precious moments for which I am grateful. But Adrienne Steiner, in her excellent presentation and by her sensitive spirit, gave me a space to grieve the losses my mother has incurred and I have felt.

Megan Bakan, who is the Education and Volunteer Manager at the Alzheimer’s Project, is a dynamic presenter who gave practical tips for how to help people who are living with dementia. She shared ideas about modifying activities they once enjoyed so they can enjoy them still. She encouraged us to allow emotions, even sad ones, to come. She encouraged us to remind people with advanced dementia who we are and why we have come each time we see them. What a courtesy for me to say, “I am your daughter, Candace and I’ve come to visit you.”

The keynote speaker was Nancy Kriseman, whose mother lived with dementia for 17 years. As a LCSW, she has counseled older people and their families for 35 years in the Atlanta, Georgia area. Nancy has written three books on caregiving and she taught us to be “mindful” caregivers. She encouraged that we not exhaust our own spirit in caring for our loved one by being “self-full,” a place somewhere between selfish and selfless. I was especially helped by her insight into entrenched caregiver beliefs that prevent caregivers from asking for the help they need and from letting go of that which is nonessential to good care.

There were six other breakout sessions occurring simultaneously with the ones I did attend that I missed, but not for lack of interest. By the end of the day, when we were encouraged to de-stress through some creative exercise by Asha Fields Brewer, I was feeling able and eager to visit my mom.

I was excited to see a labyrinth at the green space between the College of Medicine and the School of Psychology. I understand from a few professors at the conference that the students may have enjoyed the opportunity to sunbathe and play Frisbee more than this new structure. But for me, it was the perfect complement to the helpful conference I attended.

The entrance to the labyrinth advises it is a place of reflection, celebration, healing, and peace. After instruction on how to use the pathway, it invites you to set an intention and at the end invites you to carry the experience into your life. “I intend to love my mother as fully as possible for as long as we have,” I voiced. Going to the center of the labyrinth and returning by the same path, I was reminded of how important it is to go to the core of our spirit and care for ourselves before reaching out to others with that same care. I am grateful to the Pilot Project who years ago began this important conference and to the Alzheimer’s Project, the FSU College of Medicine, and the many sponsors for continuing a free educational experience that is vital to our community.