I have presented on the topic of caregiving and coping with stress locally and nationally, a number of times over the years, but none was as fulfilling as my presentation last week in the company of my colleagues at the 49th Annual Conference of the National Association of Black Social Workers on a panel discussion entitled All Is Not Lost on the subject of Alzheimer's . #nabswdmv
In a room of 300+ of my peers, I was comforted in knowing I was with family and could share some of my lived experiences with them as a former caregiver for nearly 4 years for my Grandma Maggie pictured above who lived to be a few weeks shy of her 85th birthday in 2015 when she died from complications of pneumonia as she lived with Alzheimer's officially diagnosed for about 13 years.
The most heartfelt part about presenting on this topic is the love I get from people who share with me afterwards their personal stories of both triumph and how they managed to live with the disease as well. About half of the attendees stood up who either cared for a family member with Alzheimer's or worked with a client who lived with the disease. The visual impact of how many people's live this disease touches continues to amaze me even in spite of the statistics that 16 million people will be diagnosed with Alzheimer's by 2050 and there are over 15 million caregivers for individuals with Alzheimer's and other related dementias.
I shared that of all the people I encountered or interviewed over the years, two themes resonate over and over again in that folks had to embrace a sense of humor and hold on to their spirituality to get through their respective experiences.
One member told me that she most remembered my comment to be careful about what you say to a person living with Alzheimer's because it could be the one thing they hold on to. Because we are human and flawed, we can always apologize and ask for forgiveness. Several admitted they said things they regretted, but it was clear they were freed from their guilt because they were not alone. It is a very stressful position to hold. You have to be special to take on a huge responsibility such as this because the quality of their life rests in your hands.
I couldn't talk about Grandma and not talk about her better half, Granddaddy with the antics and comments he would make in the midst of my time with her to advise them not to take the experience personal. People in crises respond in different ways. Granddaddy would often say to me "your grandma gettin' worsa" to which I would have to respond back, "I know Granddaddy, I know. "
At the age of 86, he couldn't conceptualize the constant decline of her health as her lucid moments confused him because some days were good when she laughed, danced or tapped her feet while other days she slept for hours and seem disinterested in anything around her. Just as we had been grieving for over 13 years, so had he. He hurt too. Regardless of the name calling, his impatience and his lack of understanding as the caregiver one has to embrace their role and try not to take it personal.
There will be few thank yous, little expressions of gratitude, but many expectations placed on the caregiver. Build your own village to support you or you will burn out quickly. Take care of your own medical needs first. I implore you to stay focused on the person you are caring for because they fare better when you wake up on the right side of the bed as their caretaker---everyday.
Lastly, don't focus on the memory they no longer have, but focus on the life in front of you and make the best of it in spite of the disease. Find comfort when they smile, hug you, tell you they love you or show an expression of gratitude with a gleam in the eye or the holding of your hand. And remember, they feel and hurt too.
Look for the memoir entitled What's Funny About Dementia? later this year by Fall 2017 that covers my family's journey over the years and how I found humor to keep from weeping and the methods we used to keep Grandma safe at home.
Jataun J. Rollins, AM, LCSW