Overwhelming Demands

Once the decision to care for their family member was made, respondents faced extraordinary demands. Many were working full-time while providing care. Many had children to raise or parents to support, along with all of the details of their own lives to take care of. The caregiving demands often felt incessant, particularly as the dying person became increasingly ill. It was often difficult to leave the house to run errands, because it meant that the sick family member would be left unattended or unsupervised. Several participants in one group agreed with a woman who observed: “It's just like having a baby, you could never leave.” The demands could become all-consuming. Alzheimer's disease was noted by several caregivers as particularly difficult to cope with due to the symptoms of the disease. One woman caring for her husband with Alzheimer's disease said:

Nighttime can be especially stressful for caregivers. Often the caregiver was unable to sleep throughout the night. As one daughter caring for her mother who had Alzheimer's Disease stated:

Dementia due to Alzheimer's disease or to HIV often requires the caregiver to closely monitor and supervise their loved ones because they presented a danger to themselves or to others. One partner of a man with HIV described how he needed to take more control of his lover's life: “There were a lot of situations where he was putting himself in danger. At that point, I had to be very, very, very strict. I had to know exactly who came, who he was calling, things like that. He was very, very angry with me … He didn't love me anymore. He had lost mental capacity, and he saw me as his enemy who kept trying to stop him from doing what he really wanted to do.”

Some caregivers found that their daily patterns in the home were disturbed when providing care at the home. Such disruptions made it difficult to carry on with everyday living: “After a year, I just couldn't do it. She would go to bed at six or six-thirty at night and I couldn't. So at five or six o'clock in the morning, she'd be knocking at the door, ‘Are you all right?’—‘Yes, mother’”. Many caregivers, especially those caring for seniors with some form of dementia, suggested that it was almost an impossibility to care for the family member at home: “I would encourage people who have Alzheimer's patients to put them in a home because it's very hard to take care of them. Very hard. Even to eat, they're slow to eat. Even your own eating is disturbed, your whole life is disturbed.” Focus group participants often felt they had to do everything: “I did it all. I did the shopping, I did the cleaning, I did the laundry, I paid his bills, I supported him emotionally as much as I could. Plus, I was working full-time.” These demands meant considerable sacrifice and personal cost. As one woman who was caring for a friend dying of cancer stated: “I gave up my job for her, my life for her, really, for three years … so I didn't have the energy to look after myself because I was so concerned for her.” Work demands were particularly difficult to negotiate with caregiving responsibilities, if for no other reason than that it required that the caregivers absent themselves from the home for relatively long stretches of time:

Many of these caregivers were dealing with this situation of providing care for a loved one while, at the same time, providing care for other members of their family. This dual responsibility of providing care contributed considerably to their sense of being overwhelmed. As one woman who cared for her husband who had cancer for 15 years stated: “I thought I was losing my mind. My life was being destroyed by him dying on me. I thought I was going to disappoint everybody, including my kids.” Even when other family members shared the responsibility for caregiving, it did not mean that the demands on participants lessened. The extra help often simply meant that they were freed up to tend to other chores and responsibilities. While clearly exhausting, in some ways, the relentless demands often seem to be what got the participants through the day: “You just do it. You do what you have to do. There is no time to think about what could happen tomorrow or the next day or a month down the road. You simply wake up and think: ‘There is a doctor's appointment today’.” Given these kinds of demands and pressures, it is little wonder that participants spoke of often feeling physically and emotionally exhausted:

Adding to caregivers' exhaustion and feelings of being overwhelmed was the need to perform some of the tasks of paid caregivers. Participants often felt that professional workers thought that family caregivers knew more than they actually did. One woman caring for a husband with cancer was strongly encouraged to give him intramuscular injections so that the registered nurse did not have to come to the house to do this: “But, the bottom line is that it was added pressure for me to have to give those needles … especially when I realized that the nurse's aides were not qualified to give them.” One man who cared for his brother noted, “It's like starting a new job. They assume that you know everything.” As a result, they did not receive the support and education that they felt they really needed, increasing their sense of stress and anxiety.

Social Isolation

Caregiving responsibilities often take priority over other social obligations, leading many participants to feel isolated from others. Caregivers generally felt they did not have the time or the energy to invest in friendships—relationships that might otherwise nurture or rejuvenate them. Participants' sense of isolation seemed to relate to a number of factors. First, it often felt awkward to talk about serious illness and death. This helped to create distance from others, and it sometimes made conversation difficult, even with the ailing family member. One parent described some of the difficulties her family experienced when her son was diagnosed with AIDS: “I knew he was sick. Something was the matter, but he wouldn't tell us … You try to talk to him, and he doesn't want to make you feel bad.” Other times, the isolation was related to the unwillingness or inability of others to assist with caregiving. One man explained that it was easier for him to care for his partner without assistance from the family than to deal with the tensions and stresses that characterized these relationships:

Several focus group participants stressed that other people cannot truly understand their situation unless they have cared for a seriously ill friend or family member themselves.

Negotiating Care

An issue identified by several participants was a tension that developed with regard to whether they should make use of formal service providers. Several participants recalled that they wanted paid assistance, but the person to whom they were providing care rejected the idea of formal services, such as Homecare or visiting nursing care. Paid caregivers were often seen by the sick family member as an unwanted intrusion. One woman who was caring for a close friend with AIDS recalled: “My problem was not that [help] wasn't available. I could have had it for him 24 hours a day any day I wanted. The problem was that he didn't want it … He wouldn't have Homecare. He didn't want people running around his apartment. He didn't want strangers cleaning.” Other participants echoed this experience and talked about how difficult it was to insist on arranging for paid help when their family member did not want strangers in the house. Respondents also spoke of often having to mediate between paid caregivers and their family member: “The visiting nurse, he just hated her. I'd say, ‘Please, she's just checking your blood pressure.’ He didn't want to have a worker to come to sit with him or read to him or make him lunch. He would not allow that. That was not done.” Another participant recalled, with some humor, how his brother kept firing paid caregivers because he did not like having them around: “My brother would keep firing the nurses. He'd say, ‘You can go now.’ He'd shut the door, and then we'd get a phone call saying ‘your brother's kicked [us] out.’ And this went on for a month. It was funny, you had to laugh about it.” The end result of such tensions, however, was that caregivers were required to take on more of the practical work, like cleaning and shopping. Providing more control to the dying individual was one of the important reasons for ensuring that he or she was cared for at home, yet in this regard, the needs and desires of the ailing family member conflicted with their own. This had implications for their relationship with their dying family member or friend:

Financial Costs

A number of focus group participants spoke of the direct and indirect financial costs of informal caregiving. Many spoke of how difficult they found it to juggle their responsibilities at work with those at home, and several quit their paid employment to be at home more often. One man explained:

This respondent's family was not the only one that sold their home because of their caregiving responsibilities. One mother who lived in a different city than her ill son sold her home, not because she needed the money, but because she needed to be closer to provide care: “I told the real estate agent that I didn't want my condominium to sit on the market. The real estate market at the time was ‘dead’ but I said that I wanted it to move. We ended up selling in about two weeks, so I was off the hook.” Because this respondent needed to sell her home quickly, she ended up selling it for a low price in a bad real estate market, so it probably ended up costing her thousands of dollars.

Trying to negotiate financial resources from governments and private companies often increased the stress load for caregivers. Caregivers felt they were often caught up in an unnecessary bureaucratic process at a time when they were exhausted from providing day-to-day care. The process of applying for sick benefits and disability benefits for the dying person and for other assistance such as Employment Insurance was often traumatic in itself: “They make you feel like you're begging for money … it's a very degrading process that you have to go through.” A woman caring for her husband with cancer felt fortunate that her husband's insurance company responded favorably as her own insurance company balked at covering some services:

Some caregivers are forced into early retirement or have to take a significant amount of time off work. A daughter caring for her mother commented on the lack of financial aid to caregivers:

Caregivers receive no compensation when they take time off work or decide not to seek work. Decisions to leave work for periods of time can impact future career development and future earning power. Early retirement has implications for pension income for one's retirement years. Thus, the costs of caregiving can be long-term, lasting well beyond the death of the family member. Participants were very aware of how money was being saved in the health care system. They were glad that they were able to be there for their loved one, but many were resentful that “the system” was obviously cutting costs and saving money without providing much support in return. A woman who cared for her husband raised the question: “Did I not save the government a lot of money by keeping my husband at home? Why couldn't I apply for some kind of a benefit from the government?”