Who’s there when the breaking point arrives?
It was a bitter, cold day in January, and we had begun our morning coffee hour at SarahCare. A caregiver I had been taking with about his wife attending adult day services came to our door.
His face was flushed, and he was obviously upset.
“My wife, my wife,” the caregiver stammered, “can you take her?
“I can’t take it any longer,” he pleaded. “I have to get away from her, even if I just go to McDonalds and get a cup of coffee. I am afraid I will hurt her.”
Our reply was simple, and instantaneous. Of course we could take her. We told him he could leave her as long as he needed to. With that simple invitation, John brought Mary into the center.
Mary had no awareness of her disease; frontal lobe dementia had taken away her ability to understand.
Frontal lobe dementia isn’t one condition. It is several disorders that affect the frontal and temporal lobes. It affects personality, emotions, behavior and speech. Mary continually repeated phrases. She would pace the floor, hoard things in her pockets and often was restless. After being in our care for a while, she eventually lost the ability to speak. John and Mary had been married more than 40 years. John was a retired university professor. Mary had been an elementary teacher who wrote children’s books about Indianapolis because she wanted stories to read to her students. They had two grown boys who’d created successful careers and families of their own.
Their life plan didn’t include dementia.
John never thought he would become so frustrated with Mary that he could become abusive. When he married Mary, she was gentle and loving. But, the gradual increased stress tied to being a caregiver 24 hours a day, 7 days a week became too much for him to endure. The National Center on Elder Abuse distinguishes between seven different types of elder abuse:
• Physical abuse • Sexual abuse • Emotional abuse • Financial/material exploitation • Neglect • Abandonment • Self-neglect
Caregivers often react to excessive stress. Chronic fatigue becomes an issue and no amount of sleep helps. Caregivers find themselves depressed over what “should have been” at this point in their lives. Now their lives are about managing behaviors, medications and medical bills. Stress and anxiety from limited finances and resources exacerbate the situation.
Caregivers experience these situations gradually as the disease often progresses without warning. Caregivers don’t recognize burnout until it’s overwhelming them.
As a community, we need to help with caregivers’ needs. Co-workers and family members might see warning signs and should not be afraid to discuss them. Help is available for caregivers and their loved ones.
Caregivers can receive help through counseling, support groups and blogs. The Alzheimer’s Association has a 24/7 hotline at (800) 272-3900. Geriatric case managers can help caregivers navigate services and financial assistance.
Every state has an Area Agency on Aging; Indiana has 16. CICOA (Central Indiana Council on Aging) Aging & In-Home Solutions serves central Indiana. Respite programs are available, but caregivers often find it difficult to ask for help or to admit they are overwhelmed. They promised to be there in sickness and in health to the loved one facing this awful disease, and they want to keep their promise.
John returned to SarahCare a few hours later. He went home and took a nap, read the newspaper and had a cup of tea.
We worked out a plan for Mary to attend SarahCare. We connected John with a local support group and connected him with his Area Agency on Aging. At SarahCare, Mary found an outlet for her restlessness. She participated in activities and went home tired, making John’s evenings a little more manageable. She assisted the SarahCare staff with bus responsibilities when it was time for participants to go home. Her experience as an elementary teacher could still be put to good use. It made her the perfect person to organize the line of people at the door, and when children visited she enjoyed reading to them.
After the plan came together and Mary settled into her routine at SarahCare, John went back to being a loving husband and caregiver. Mary passed away a while back; she attended SarahCare for about a year. We miss her and John. But, when that occasional desperate phone call arrives or another haggard caregiver walks into our center, I always remember John and Mary. I will always be grateful we were available to help them out on that cold winter’s day in January.
Submitted by Vicki Maynard, SarahCare of Indianapolis
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