In 1994, Anna and Ed, both 45 years old and working full-time, found themselves spending increasing amounts of time caring for Ed's aging parents. A few years earlier, Ed's father had been diagnosed with Parkinson's disease, and he was being cared for by his wife Mary, until she was diagnosed with Alzheimer's disease.
The diagnosis was met with some relief, as it explained Mary's behavior changes, but waves of anxiety washed over the younger couple as the urgency of planning for both Mary's and Ed Sr.'s care loomed over them.
Having no children, Anna and Ed embraced the opportunity to take the elderly couple into their home. The house seemed alive with all the activity and all seemed well until a few weeks later when Mary tired of "visiting", and was ready to move back to her own house. Along with night-time restlessness and incontinence, Mary became increasingly hostile. Ed Sr., feeling guilty about the constant disruptions, expressed regret about moving in with his son and daughter-in-law. Tension was high and arguments were frequent. Within months, an arrangement that at first seemed ideal had turned into a nightmare.
One morning an article in the local paper caught Anna's eye, and she dialed the number listed as a resource. As it turned out, that call was to FCA, where Anna scheduled an appointment in her home for the entire family to meet with an FCA Family Consultant.
The consultation provided the family with information about behavioral changes associated with Parkinson's and Alzheimer's Disease, education about community resources available to them, and introduced the concept of respite to the family. Specific recommendations were made to enroll Mary in an adult day care program during the week and to consider hiring an in-home attendant to help care for Mary and Ed Sr. on the weekends. A one-and-a-half-hour consultation with an elder law attorney was provided for the caregivers to begin planning for the costs of Mary's and Ed Sr.'s long term care. The Family Consultant encouraged Anna and Ed to increase the role of Ed's two brothers in the care of their parents.
Taking It Step by Step
A six month follow-up call by the Family Consultant revealed that Anna and Ed had followed some of the recommendations and had enrolled Mary in a local day care program. Not wanting to be at home without his wife, Ed Sr. had decided to participate as well, and both enjoyed the variety of activities that kept them busy during the day. Anna also reported that when Ed had tried to engage his brothers to visit their parents, he was met with resistance and experienced great frustration.
The couple did not want to be overwhelmed again by their situation, so Anna and Ed began FCA's "Controlling Frustration" classes in order to learn some strategies for coping with the challenges of being a caregiver. During the eight-week course, Ed recognized how tense he had become in his own home and learned to use deep breathing as a way to relax. Anna identified her tendency to think of things as either "all-or-nothing", and recognized how that style prevented her from considering all her options. Ed and Anna both learned the importance of taking time out from caregiving to devote to their marriage, work, and social life, and resolved to take one evening a week for such pursuits.
Two years have passed since Ed and Anna's first call to Family Caregiver Alliance. Anna and Ed continue to care for Mary and Ed Sr. in their home, despite the older couple's increasing needs. While Ed's brothers have maintained their distance, they have agreed to help out by paying for an attendant to provide respite on a regular basis. Ed and Anna also keep in touch with their consultant who informs them of new services or programs and encourages them to enjoy their "time out". It has not been easy, but the couple have been able to maintain their jobs and still care for Ed's parents. They have also been able to share resource information with co-workers who are caring for elderly relatives.
Caring for more than one individual suffering from a cognitive disorder can place unique needs on family caregivers. Before a crisis occurs, it is critical to identify services within your community that can ease some of the pressures. Reaching out to resources is as easy as a telephone call to connect you with local programs and services. For more information, call FCA at (800) 445-8106.
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