Help Available to Make Caregiving a Positive Experience


According to the National Alliance for Caregiving, the average number of hours spent caring for loved ones nationally is 20 hours per week, with about 13 percent of caregivers providing 40 hours of care a week or more. As a care consultant for the Alzheimer's Association, I knew these statistics represented a small percentage of the families we assisted.

Most caregivers spent 24 hours a day caring for their loved ones. During the day, they bathed, fed, medicated, transported to appointments, and took care of all the household chores. At night, caregivers protected their loved ones from exit-seeking, falling, eating everything in the refrigerator, and disrobing during extreme weather, among many other caring activities. For many caregivers, these activities represent their daily routine and they seldom count them as "caregiving."

This was the situation for the Wilson family: Mrs. Wilson was diagnosed with moderate Alzheimer's type dementia. She had difficulty bathing, tracking, and asking for help. Her husband managed to keep her condition unnoticed by the family and friends as he took care of all the household responsibilities while retreating from social activities.

No one noticed Mrs. Wilson's gradual decline until Mr. Wilson began showing signs of exhaustion. Their older son, Samuel, contacted the Alzheimer's Association when his father finally admitted to the diagnosis. Unfortunately, Mr. Wilson was not ready to seek help as a caregiver. Their son knew his father needed assistance but was unwilling to accept the help.

When I met with the family, Mr. Wilson was quiet for most of the meeting. After listening to caregiving strategies, he politely agreed and said he would contact me if further assistance was needed.  Unfortunately, he never did, despite his son's pleads to take some respite.

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As the weeks and months progressed, their situation worsened. Mrs. Wilson needed a structured schedule and increased activities because she was pacing and attempting to exit-seek. Mr. Wilson's exhaustion was manifested through aches and pains from lack of rest. He finally accepted his wife's condition and allowed his son to help. Fortunately, Samuel kept in touch with the Alzheimer's Association and had developed a plan to help his parents when they were ready.

As soon as Mr. Wilson was open to assistance, Samuel enrolled Mrs. Wilson in the respite program. She not only had a caregiver twice a week through the Family Caregiver Support Program, but their children paid for Adult Day Care three days of the week to keep Mrs. Wilson socially engaged and to provide respite to Mr. Wilson, whose condition gradually improved. He admitted that caring for his wife required a "village."

The Wilsons' story is not unique to my line of work. Stories like the Wilsons' are the norm in the caregiving world. It took Mr. Wilson several months to accept his wife's cognitive decline and his own physical decline. He was fortunate to have family members who were supportive and understanding about the complexities of caregiving. Most importantly, Mr. Wilson was fortunate his family helped him find assistance through the Family Caregiver Support Program.

If you or a loved one is in a similar situation, contact your local caregiver support program. Caregiving is a wonderful yet taxing activity. With assistance you can make it a memorable positive experience.

—Janet Ceballos, Aging and Disability Services
(formerly an Alzheimer's Association caregiver specialist)