Care-giving and Caregiver Stress Chiang Shin Mei

With keen observation and great empathy, in her essay (難為了女兒, 10.08.07), Wendy described a classic example of caregiver stress. The story is about a loving, caring but overly stressed daughter, struggling to care for her parents. Care-giving has always been a part of family life. Being a family caregiver can be a very positive and rewarding experience. But it can also be very challenging, and at times overwhelming. Caregiver stress is a great concern in community health care. It does not only affect the individuals and their caregivers. It can also take a big toll on their families, work place (such as low productivity and absenteeism), and possibly the society at large (such as additional health care cost related to "caregiver burnout").

Who are the caregivers? According to Statistic Canada, in 2002, almost 20% of Canadians over the age of 45 were providing care to one or more elderly family members, relatives or friends (elderly defined as individuals over the age of 65*). The percentage would certainly be much higher if the caregivers for the younger disabled group and the acutely ill were also included.

While most family caregivers are women, men are increasingly taking on more care-giving responsibilities as well. Most caregivers are married and employed. Often, they are also members of the "sandwich generation" simultaneously caring for children and an elderly. Consequently, they are often under undue pressures. Also, there are more and more seniors looking after their frail spouses at home with minimal social support. Today, with the aging of the Canadian population, the issues relating to care-giving have become increasingly a pressing concern for the Canadian families, the health care practitioners as well as the government policy-makers. What are the warning signs of caregiver stress? Caregiver stresses often manifest in psychosomatic symptoms. Physiologically, symptoms can be fatigue, constant exhaustion, decreased mental functioning, difficulty sleeping, loss of appetite (or over eating), and low immunity to diseases. Emotionally, caregiver may experience anger, resentment, guilt, anxiety and depression. Unchecked stress can lead to "caregiver burnout". What are the supports for the elderly and the caregivers in Canada? In Canada, there is not yet a national universal home care program. Care provision to the seniors is under the provincial jurisdiction, and varies between provinces. Generally there is a common core of programs funded by the provincial governments, which usually include visiting nursing, rehab and therapy, social work, personal care assistance, seniors day program. For direct support to the caregivers, funding is provided for respite care, both in home and short-term stay in nursing homes. Community support would include transportation, Meals on Wheels, support groups, alternative housing (such as retirement home, assisted living, supportive housing). Long-term care facility is the last resort to provide a safe home to those no longer able to live in the community. For the palliative clients, hospice care is available.

Financially, both the federal and provincial government provide some support through tax credits. There are two financial / income support programs for the terminally ill. Federally, the Compassionate Care Benefits Program provides maximum of 6 weeks of employment insurance benefits (at 55% of their insurable earnings) to enable an employee to take temporary leave to attend to a terminally ill family members. In the province of Ontario, the government has the Family Medical Leave Program, which legislates job protection for 8 weeks of unpaid leave for the caregiver.

This list of services may seem impressive. In reality, it is often woefully insufficient. The health care system is not sustainable without the commitment and sacrifices (both personal and economic) from the caregivers. Health care professionals are constantly being challenged to support the caregivers in this vital partnership in the caring of the elderly. Two years ago, I had a first person experience as a caregiver (see how well I fit into the caregiver profile). Frankly, no amount of academic training or work experience could have prepared me for that. My mother had a heart attack, fell and broke her right arm (her dominant hand). Instantly, from a very independent person, she became totally dependent on others for her daily care. She was in hospital for three months, three long trying months, for her and her three daughters. From start, my sisters and I quickly developed a plan and divided our responsibilities. Because of my work in the health care field, I was the "logical choice" as the "spokesperson" to deal with the health care system. No small task, I soon found out, not even for an "insider" ! I juggled work to take time off to attend hospital meetings. I was angry at the doctor at his lack of compassion and professionalism. I challenged the hospital social worker and the bureaucracy. I became easily irritable, then, I felt guilty. I was tired all the time, but also had difficulty sleeping, …all the signs of caregiver stress. Thankfully, with good support from family, friends and colleague, I somehow managed through this very difficult time. At the end, we were happy that mother's condition stabilized. After three months in hospital, she was discharged to a nursing home. Looking back, what did I learn from this? At the personal level, I found it very exhausting and emotionally draining. Professionally though, it was a very valuable experience which helped me to become more empathetic and understanding at my job. Days after mother's admission to the nursing home, my brother-in-law said to his wife, my sister, "It is nice to see you smile again." Talk about CAREGIVER STRESS. (* Sorry, folks, we are approaching this age. But, no need to worry yet. From my experience, most of the elderly who require extensive care are in the mid-old and old-old sub-group. So, relax, and enjoy life while we can.)

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