Caregiving. Until you began caring for a spouse or aging parent you probably thought the role of caregiver applied to the role of a parent to a child. The role of caregiving in relationship with a spouse or aging parent can vary from fairly incidental support for medication set up and assistance with medical appointment management, to 24 hour care for physical assistance with personal care due to progressive illness, or assistance for safety and behavior management due to dementia.
By 2030, 20% of the American population will be over 65 years of age. At present, families are the informal caregivers who provide over 90% of care for loved ones. In 2003 this “cost” $257 billion—an amount that is more than what the government spends on Medicaid.
AARP’s Public Policy Institute and National Alliance for Caregiving issued “2015 Report Caregiving in the U.S” which outlines the following prevalence of caregiving:
34.2 million Americans providing care for an adult age 50 or older.
Caregivers are caring for others with a long-term condition (59%), a physical condition (35%), memory problems (26%), or more than one ongoing problem or illness (37%).
Caring for a close relative, like a spouse (45%) or parent (44%) is more emotionally stressful for caregivers than caring for another relative (35%) or non-relative (18%).
One third of caregivers (32%) said a health care provider (physician, nurse, social worker) asked about what was needed to care for their recipient, however only half as many (16%) of caregivers said a health care provider has asked what they need to take care of themselves.
As an occupational therapist working with patients and their families, in supporting my Mom as caregiver through my Grandparent’s illnesses and deaths, and as a caregiver myself for my Father through his 10 year decline from dementia, I know from experience the important role family caregivers play in providing optimal quality of life, and I know well the stress on caregivers. The AARP “2015 Report Caregiving in the U.S” identified that the #1 area that caregiver’s seek more information is “managing stress” (48%).
Managing Stress may be the most important thing a caregiver can do to ensure they are able to continue providing care. Many of us know at least anecdotally of someone who provided care for their loved one to the point of collapse of their own medical emergency, who then could not participate as a caregiver any longer. The AARP’s “2015 Report Caregiving in the U.S” identified the longer a caregiver has been providing care, the more likely she or he is to report their own health as “fair” or “poor.” There is a correlation between providing more care per day to the caregiver’s compromised health.
One thing I have learned from the families of patients I serve, and from my experience helping my own Mom in her role as caregiver – is that caregivers, especially when under stress, need information in small increments and with some repetition over time to reinforce the availability of the information. To that end, my “ABC’s” Strategies for Caregivers Managing Stress” is not a lengthy list for every letter in the alphabet, and rather a fairly simply 3 point list.
Allow yourself to grieve. Allow to feel the range of emotions that come with experiencing grief. Acknowledge that life has changed and may never be “the same” again.
Acknowledgement doesn’t require acceptance but it opens the door allowing yourself to accept help from others. Allow others to help. Respite is NOT
“for” the person receiving care. Respite IS “for” you the caregiver.
Balance the needs of the person you care for with your own needs. You need rest, sleep, nutrition, and exercise to recharge and to stay healthy to
continue providing care. Know your limits and protect yourself to stay well.
Connect and Communicate with family, friends, church and other social groups. Due to perceived and experienced stigma of declining cognition and behavioral changes of dementia, coupled with stress and fatigue of caregiving, results in some caregivers isolating with the person they care for. Connect with your physician and Ask for resources. Connect with local support groups and adult day programs. The formal education and the informal sharing of resources and ideas can be valuable, and at minimum reinforces that you are not alone.
For more information Resource Library (Links)
The Celtic Maze pattern symbolizes the journey of life and the path of experience, & learning. It symbolizes that there are twists, and turns, the challenges and obstacles in life, but that there are always open doors.