Balancing caregiving and work
By Beverly Moore, RN, CS, StilMee™
In discussions regarding caregiving and work productivity, a new word has been introduced —“presenteeism.” This term describes an employee who is present bodily at work but not emotionally due to concerns about an elder at home. Productivity starts to decline and the employee himself is often the first to notice. He comes in late due to duties at home, perhaps getting mother to a day program. Phone calls are frequent, to check in at home to be sure everything is okay or 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 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 without identifying themselves as caregivers at all. They may first help handling the bills, then assist with the shopping and perhaps later accompany their family member on doctors appointments or pick up medications. They may start to notice the elder is not nourished adequately so they stop in more frequently to deliver or prepare and share meals.
The caregiver may gradually realize the need for 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.”
The responsibilities of the caregiver increase significantly when the elder has Alzheimer’s or a cognitive disorder that affects memory and ability to use reason and judgment. Safety and well-being become a major concern. The realization that progressive cognitive illness presents the caregiver with a long-term commitment 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 do not access their Employee Assistance Program at work. Perhaps they fear being seen as weak or worry they will lose their job if they reveal the struggle of 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, when they do not have to.
Resources for caregivers can also be accessed at the local council on aging and, in Massachusetts, at one of the twenty-seven Aging Service Access Point (ASAP) agencies that provide services to elders and their caregivers. Funded and overseen by the Executive Office of Elder Affairs, each ASAP 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.
ASAP caregiver programs also offer help for family members caring for elders. Services include 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 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, can address the challenge of an employee finding time to attend. A list of support groups specifically for Alzheimer’s in Massachusetts and New Hampshire can be found on the Alzheimer’s Association Web site www.alz.org/manh.
It is essential that the caregiver get educated about the disease or condition of their family member and any 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 also help.
Recognizing their limits, learning about resources and asking for help, the caregiver can find relief in the care partnering role. Coping skills improve 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. Visit www.StilMee.com for information.
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