Balancing Caregiving and Work

Recently at a workshop for employers about caregiving and work productivity, a new word was introduced; ‘presenteeism’. This term describes an employee who is present bodily at work but not emotionally due to concerns about an elder at home. Work productivity starts to decline; the employee himself is often the first to notice. They come in late due to duties at home, perhaps getting mother to a day program, phone calls are made, to check in at home to be sure everything is ok or perhaps to follow up on a doctor’s suggestions for medication and treatments. Many caregivers do not recognize the stress they feel is due to caregiving responsibilities at all, and continue to handle everything themselves; home care, family obligations and work. Their attention to their personal needs takes a back seat, adding to the stress. Physical and emotional illness may exacerbate the strain of the balancing act, or be the result.
Caregivers generally experience an incremental increase in responsibility for an elder, not identifying themselves as caregivers at all. They may first help handling the bills, then help with the shopping, perhaps later accompany their family member on doctors’ appointments or pick up medications. They may start to notice the elder is not nourished adequately, preferring to eat simple sweets and tea rather than prepare a meal. So they stop in more frequently to deliver or prepare and share meals. The caregiver may finally realize that they need help. “Where do I go to find what help is available?” “Am I doing the right thing by mom?” “Is this the right decision?” Finally, “I can’t do this alone anymore.”
When the elder has Alzheimer’s which affects memory, reason and judgment, the responsibilities of the caregiver increase significantly. Safety and well being become a major concern. Alzheimer’s, a progressive cognitive illness, presents the caregiver with a long term commitment. This realization alone can be overwhelming. There is a comparison made that someone caring for a person with Alzheimer’s experiences the same stress as a soldier in combat; both are on duty 24/7, hyper-vigilant, waiting for the next emergency to appear, and not knowing when it will happen.
Many employees, I learned at the conference, do not access their Employee Assistance Program. Perhaps they fear being seen as weak and will eventually lose their job if they reveal the struggle balancing work and caregiving. Many are unaware of the wealth of information to be gained about resources for caregivers through their employer. Instead, they continue to muddle along alone.
It is the job of the Employee Assistance Program to research resources for their employees; it is unfortunate that caregivers don’t access help from their EAP sooner. Resources for caregivers can also be accessed at the local council on aging and, in Massachusetts, at one of the 27 Aging Service Access Point agencies that provide numerous services to elders and their caregivers. Each ASAP, funded and overseen by the Executive Office of Elder Affairs, has a care management program for income eligible seniors over 60. Elders served under the care management program receive services like nutritional meals, housekeeping, laundry and shopping services, companionship and personal care. Their caregiver programs offer help for those family members caring for elders. Caregiver programs offer a variety of services including respite funds for in home helpers or a few days at a local day program for seniors, as well as an array of other services to ensure safety. There are also grant funded programs and scholarships to further help caregivers.
Another helpful resource is a caregiver support group. These groups help minimize the feeling of being alone; caregivers find others who, like them, need information and support in the caregiving role. Support groups on site at work, perhaps during the lunch hour, ease the employee attending one after work hours. A list of groups specific for Alzheimer’s can be found on the Alzheimer’s Association website www.alz.org/manh serving Massachusetts and New Hampshire.
It is essential that the caregiver is educated about Alzheimer’s disease and behavior changes to expect. There are always significant behavior changes if it is a memory disorder. Learning how to relate to someone with Alzheimer’s is important to gain their cooperation. Education and support significantly reduce the perceived burden of care. Research shows that telephone support for the Alzheimer caregiver can reduce the perceived burden of care. Recognizing their limits, learning about resources and asking for help, the caregiver finds relief in the care partnering role. Coping skills are improved as the care is shared, and work productivity is enhanced.

Beverly Moore is owner of StilMee™ The leader in Alzheimer coaching, a company exclusively dedicated to educating, empowering and supporting care partners through Alzheimer caregiving. StilMee coaches are available for in home coaching in Massachusetts including Cape Cod, and northern Rhode Island. Telephonic coaching is available anywhere in the United States. Look for the website www.StilMee.com for information. Beverly is also author of the book Matters of the Mind…and the Heart, Meeting the challenges of Alzheimer care, published July 2009. Go to her blog www.StilMeeCoach.blogspot.com