Caregiving involves taking care of aged or infirm family, friends or neighbors in their home or ours. As medical advances help us live longer, caregiving is a challenge many more of us will face. Caregiving may involve assistance with feeding, bathing, dressing, shopping, taking medications, household chores and transportation. Caregivers provide whatever support is needed: emotional, physical and practical. For many, caregiving becomes a round-the-clock, never-ending responsibility.
Caregiving is on the rise. One in four American households now provide caregiving. When a debilitating illness does strike, families often are left scrambling to figure out how they will care for their loved one. Victims of stroke, injury, Alzheimer’s or Parkinson’s disease, for example, often go from being completely independent to requiring frequent or constant care.
It’s not easy to accept a debilitating illness that strikes someone we love. We’re caught off guard. We react with shock, disbelief and denial. We worry about how our family member will cope with the news, and how we will manage. There also can be a devastating sense of loss. Illness often robs us of our independence, enjoyment in life, and, at times, our dignity.
Frank, a 63-year-old retired bricklayer, understands what it’s like to cope with a family member’s chronic illness. “When my wife, Mary, was diagnosed with Alzheimer’s, I just couldn’t believe it.” Frank said. “Mary and I had just celebrated our 45th wedding anniversary. We had so many plans for our retirement together. We just bought an RV, and we planned to travel the United States to see the sights. Our kids are grown, and most have moved away. We felt this was our time to relax and enjoy life. Mary’s illness has changed our hopes and dreams for the future.”
Frank wasn’t prepared for how becoming a caregiver might affect him. Caregiving the chronically ill takes a toll emotionally, physically, mentally and spiritually. Caregivers go through a grieving process in which they must cope with many losses. They grieve for their patient, who may be their spouse, grandparent or close relative. They watch in agony as their loved one is slowly ravaged by the illness. They cope with losing hopes and dreams they had for their future life with their patient.
Another painful adjustment for caregivers is coping with changes in their patient’s personality. When their patient is in pain, or having a bad day, caregivers are subjected to their patient’s irritability, temper outbursts, mood swings and verbal outbursts. Not surprisingly, caregivers often feel isolated, unappreciated, emotionally and physically exhausted, and mentally drained.
Frank explains, “Mary was always a sweet-natured person. Her illness changed her into someone else. Her Alzheimer’s made her forgetful. She’d be standing in the living room and forget how to get to the bathroom. She seemed frightened, confused and angry. Sometimes she would lash out at me as though I were her enemy, instead of her husband. It really hurt, because I was trying so hard to take care of her.”
Caregivers Need To Take Care
Keeping up with the demands of caregiving takes its toll. Caregivers face a total change in lifestyle. Because the demands of chronic illnesses require near-constant attention, caregivers find themselves making great sacrifices to attend to their patients’ needs. Caregivers may feel they no longer have time to pursue pleasurable activities they once enjoyed. No time for hobbies, a conversation with friends, family get-togethers, time away from home or time alone.
Caregivers often set unrealistically high expectations for themselves. They may try to do too much, and feel guilty when they cannot manage on their own. They may be unaware that caregivers who overdo it risk “burn out,” clinical depression or becoming physically ill themselves.
As Mary’s condition worsened, Frank had difficulty keeping up with the demands of caregiving. “I didn’t want to ask anyone else to take care of my wife,” he said. “Mary’s my wife, and I love her. I didn’t want to burden anyone else. My kids have their own lives and responsibilities. And, I disliked the idea of a stranger taking care of my wife. I felt like I should be strong enough to manage on my own. What I didn’t realize at the time was being strong as a caregiver doesn’t mean doing it alone.”
Frank’s ideas about caregiving changed after his priest stopped by for a visit. The priest immediately recognized Frank was suffering from caregiver burnout. Frank had been working around-the-clock, getting little sleep and spending every waking moment taking care of Mary. The priest helped Frank recognize the path to being a good caregiver starts with caregivers taking care of themselves.
“My priest helped me to open up my feelings,” Frank said. “I realized I hadn’t talked to anyone in months. It felt good to vent my frustration and to get some advice on how to cope. My priest told me our church had a program of volunteers who could fill-in to give me a break. He connected me with community services that helped with professional sitter services, assistance with meals, grocery shopping and chores. A neighbor filled in once a week so that I could attend a caregiver’s support group and have lunch with friends. I started taking breaks, exercising and eating right. My kids insisted I take some weekends off, and they stayed with Mary while I went fishing. It was hard at first not to feel guilty, but everyone told me I was doing the right thing. I not only felt better, but I was a better caregiver for Mary.”
Share the Care
As Frank did, it is important that caregivers ask others for help. By taking better care of themselves, caregivers are better able to cope with the demands of caregiving. Good caregivers recognize the need to ask family, friends and neighbors for help. They understand the importance of sometimes spending time away from their patient, and giving themselves a well-deserved break.
Caregivers might begin the process of self-care by talking to neighbors and family members about caregiving. They need to let others know specific ways they can be of help. Caregivers might ask, for example, for someone to fill-in to give them a short break. Friends and family often are pleased to help out, once caregivers are clear about what help is needed.
Caregivers need to give themselves permission to be human beings. They must recognize that it’s normal for caregivers to feel frustrated, angry, resentful, hurt or bitter. At some point, these negative emotions are experienced by nearly every caregiver. What’s important is that caregivers give themselves outlets for managing their stress. Good caregivers stay connected with friends, hobbies and activities that help them stay centered. Caregiver support groups available in most communities, provide caregivers with free access to practical information and emotional support. Some caregivers connect with a professional mental health counselor to help better manage their stress.
If you or someone you know needs assistance with connecting to caregiver resources, call the Bricklayers’ Member Assistance Program (MAP). Call toll-free at 1-888-880-8222 to confidentially speak with a licensed mental health professional.