Case Study - Susan, The Care Givers Burden

Susan has taken on a heavy burden. After her husband Mike had a stroke, he was referred to a long-term care facility. At Mike's insistence, however, the referral was declined and Susan brought Mike home and became his primary caretaker. Their grown son, Robert, initially moved in with his parents to be his father's ‘human crane'. He is still living with them and is still off work. Money is tight. The house is crowded. Just recently, Robert suffered a mild heart attack, and now also needs care.

Susan finds it very difficult to find the time to keep herself healthy. There are days she feels stressed and depressed. A social worker from the Community Care Access Centre (CCAC) suggested a couple days of respite care for Mike, but the earliest opening is in three months. Right now, whenever Mike gets support from someone other than Susan, she finds herself ‘running a marathon' around Zehrs. Her only time out is to buy groceries or pick up medications.

Susan finds she is constantly called upon. She has no time to go for walks and even if she did, she finds walking difficult. After a bout of pneumonia about four years ago, Susan has had shortness of breath on exertion.

Susan feels she has changed. Before becoming the main caretaker for her husband she never paid attention to medical issues, and mostly followed her doctor's advice. Now she questions everything. Susan has become a firm advocate for her husband. She does get frustrated at times but has developed strategies to find answers to her questions or to get action for Mike. Initially she did research on the Internet, but lately hasn't been able to find the time.

In Susan's community there is no community support group for caregivers. Because of confidentiality, the names of other families in similar situations cannot be shared. Respite beds are scarce. Susan longs for a day to herself. The hardest challenge for her is not having freedom. She cannot come and go as she used to, and finds that if she gets overtired then ‘everything becomes monumental'.

PRIMARY PREVENTION ISSUES AND SOLUTIONS FOR SUSAN

• Susan is at risk for social isolation and physical exhaustion as the primary caretaker for her husband and now her son.
• She is also at risk for stress and depression.
• Peer phone support, or buddy systems are one option to provide support to Susan. With the multiple demands on Susan's time, and her limited free/personal time outside the home, she could receive emotional and information support without having to leave her home.
• Since Susan feels comfortable using the Internet, on-line caregiver forums and discussion groups present another option.

THE ROLE OF HEALTH PROMOTION - COMMUNITY MOBILIZATION

• In the past Susan had been a community volunteer, but although she is highly committed to starting a support group, she lacks the time and energy.
• Provincial resources such as the Self Help Resource Centre or the Ontario Healthy Community Coalition or the Health Nexus (formerly OPC) could work with other caregivers in the community who have demonstrated an interest in forming a support group.
• Her regional self-help centre or the Ontario Self-Help Network could suggest strategies for connecting with these individuals who are in similar circumstances, while respecting confidentiality issues. This way Susan does not need to do all of the work on her own, adding to her numerous responsibilities