When my husband Lee was diagnosed with Alzheimer’s disease a few years ago, my world changed.
At the time, Lee and I had been married for 20 years. It was not a first marriage for either of us. We’d met in our 20s and were both part of a group of friends, but we didn’t know each other all that well.
After getting divorced in the mid-1990s, Lee, who knew I was an artist, found me through an art group I was associated with. We’d always enjoyed each other’s company previously, so he called me up and invited me to dinner. We rekindled the friendship and after dating for about a year, he asked me to marry him.
By this time we were both in our early 50s and active, embarking on road trips and traveling to Big Bend National Park and Colorado, where I taught him to snow ski. We also hiked whenever we got the chance.
Retiring from his job as a commercial insurance salesman about 15 years ago, Lee kept busy playing golf, reading, and doing yard work. Having driven a lot during his career, he was usually the one who took the wheel on our road trips.
Looking back, I realize now that he showed early signs of the disease, sometimes saying or doing things that were out of character. But it wasn’t until he got lost driving downtown to pick me up at the River Art Group gallery in La Villita, a route he’d driven many times, that I realized something was very wrong.
Lee was given a mental status test by our primary care doctor, who then referred us to a neurologist. After further testing, including an MRI, Lee was diagnosed with Alzheimer’s disease.
I immediately started researching the disease, and what I learned gave me anxiety – about money, our living situation, and my eventual role as his caregiver.
Taking care of my husband would eventually become a full time job, and at 70, and with few family members on whom I could depend, I realized that my future was not going to be what I’d previously envisioned.
Still, though I was far from alone in my role, I put off finding support.
The Alzheimer’s Association estimates that more than 15 million adult family caregivers are caring for someone with Alzheimer’s disease or another form of dementia.
Many cope without adequate information and support.
According to Caregiving in the U.S., a 2015 publication from the National Alliance for Caregiving and the AARP Public Policy Institute, half of unpaid caregivers who care for a loved one with Alzheimer’s disease or dementia say they have high levels of emotional stress and feel they need more information about managing it. Seventeen percent of caregivers reported their health as fair or poor, compared to 10 percent of the overall population. The number is higher, 22 percent, for those who provide more than 20 hours of care per week.
As for myself, I was totally unprepared for the range of emotions I was experiencing, including anger and uncertainty. I was also having trouble sleeping. I felt my life was out of control.
My emotions got the best of me while visiting with a group of artist friends. Overwhelmed with emotion, I broke down in tears. A friend kindly suggested that maybe it was time to seek help. Although I was still reluctant, she called around on my behalf and found the Caregiver SOS program of the WellMed Charitable Foundation, a nonprofit organization that supports seniors and their caregivers.
Through the foundation, I took the Stress-Busting Program for Family Caregivers, a nine-week series of 90-minute sessions for those who care for people with Alzheimer’s disease or other dementia. Each session explores topics such as finding support, managing stress, and education.
At this point my husband can still drive short distances, such as from our rural home to Boerne to get the mail, and he can do yard work, but he can no longer read much. Recently, I’ve taken over managing his medication. His short-term memory is pretty much gone and he asks me the same questions over and over.
Attending Caregiver SOS support groups has eased my mind, and hearing the stories and problems of other caregivers gives me an idea of what to expect in the future. SOS has been a great resource for opportunities in caregiver education and information and has helped me try to prepare for our future.
I soon plan to attend another resource the foundation offers: The 2018 San Antonio Caregiver Summit. This year’s event is Thursday, Nov. 1 at the Whitley Theological Center at the Oblate School of Theology in San Antonio.
The summit will feature expert speakers including New York Times reporter and author John Leland and Dr. Sharon Lewis, creator of the Stress-Busting Program for Family Caregivers. There will also be a panel of caregiver experts, lunch. and door prizes.
Both unpaid and professional caregivers are invited. Free flu shots and a limited number of respite care slots also are available. Though the summit is free, registration is required. To register or to learn more, visit CaregiverSOS.org or call 866-390-6491.