John and Loretta were an elderly couple who had both been widowed for years when they married in their early seventies. Loretta had two adult children who lived nearby but John had no children. After a dozen years of marriage, John began to notice changes in Loretta’s mental and physical abilities; both chose to overlook these “mishaps” for as long as possible. She was finally diagnosed with both Parkinson’s and Alzheimer’s disease; Loretta’s disabilities advanced rapidly with her speech and swallowing skills most affected.
When I met them, she had just been discharged from a skilled nursing facility after a hospitalization for aspiration pneumonia. Loretta could no longer take any foods or liquids by mouth and her speech was severely garbled. A feeding tube had been placed in her stomach; she was to get around-the-clock feedings and medications through it. As often happens after a debilitating event, the disease processes had further progressed and she now required assistance with ambulation and personal hygiene.
We worked together to make a list of her medications, the times they would be due as well as the feeding schedule. John would have to learn how to instill the tube feedings, care for the insertion site and troubleshoot the equipment-- yet more new tasks were to be added to his plate-- Loretta now also required her blood sugars tested several times a day and insulin given when needed.
The next day, I returned and John had designed his “organization”. Pill bottles were lined up on the kitchen counter, a chart was made for every activity required which encompassed almost every hour of the day and a notebook had been started to record blood sugar values, doses of insulin administered, feedings completed and medications given. I noted that the details were regimented with no room for human variance which is so very common in the day-to day life of a caregiver.
No one could fault his efforts but I asked a few question; “Did you get any sleep last night…did you eat breakfast…did you take your own medications?” The answers were all negative. The effects of this wear and tear on his health and well-being were already evident. John’s only plan was to do whatever it would take to keep Loretta home but even he realized on that second day what an incredible task this would be. Their family doctor was agreeable with any suggestions I made but their insurance company was not; home care was allowed only 5 visits to provide all the teaching and support John and Loretta would need. Because of these intense limitations, John was very anxious to obtain outside assistance immediately--other family members refused to help-- fortunately two women from their church were available for several days each week. John insisted that he alone would be responsible for the feedings and medications but they could help with Loretta’s hygiene needs and housework as well as remind John to take his own medications and meals.
John’s approach to Loretta’s caregiving needs is a very common one; most men who provide care for a loved one are recognized for their organizational skills, their attention to detail, their “get-er-done” approach to these responsibilities. These are all admirable traits for any caregiver but no more so than the hands-on, nurturing skills women are more likely to bring to caregiving situations.
Men are also more willing to recognize that they need help and will seek additional support; their reasons may vary but common ones include embarrassment with providing the intimate care often required, other family commitments and financial responsibilities. Women much more frequently have a difficult time admitting their need for additional help; they are intent on doing everything themselves that their loved one requires as they sense they should be able to handle all tasks. Regardless of gender; the risk of fatigue, emotional and physical stress and social isolation are factors that can occur and are often avoidable in the caregiving experience.
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