When caregiving becomes an identity

Caregiving involves all of us, at some time in our lives. It can happen over a short period or last for many years. Now that the general population is ageing, chronic diseases are on the rise, and hospital stays are becoming shorter and shorter, our healthcare system is heavily reliant on informal caregivers.

Caregiving is often performed by people who are themselves becoming ill or disabled. Caregivers may have limited training or none whatsoever in moving, lifting, and turning very ill adults, yet continue to perform these strenuous physical activities daily.

Canadians who are living with dementia often must rely on family members and friends for support. In fact, 480,000 Canadians provided care to someone with dementia. Those of us caring for someone with dementia differ from other caregivers as we tend to be older, more likely to be caring for parents or in-laws, and are less likely to live with the care receiver. Caregivers to someone with dementia also spend 1.5 times the average of 9.6 hours per week than other caregivers—that is an average of 13.6 hours per week to be exact. Caring for someone with dementia takes a toll on health, and social and financial well-being compared to other caregivers. For instance, those of us who care for someone with dementia have less time to spend with their partner, children, and friends, and on social activities; we work reduced hours, and may have to exit the labour force to provide care leaving us in financial hardship.

How can caregiving affect my health and well-being?

Rewards

Some of us experience caregiving to be a deeply rewarding and meaningful experience. First, there is the companionship and bond-building that happens between the caregiver and those who we care for. We may cherish the time spent getting to know our loved ones in ways that are new to us. Next, there’s the personal fulfilment of affecting real change in someone’s life. Finally, some of us may experience caregiving in a way that expresses our spirituality. We may have a feeling of spiritual growth through the experience of sharing struggles with another while making sense of some of life’s biggest challenges.

Making the most out of our caregiving experience involves developing a close relationship with the person we are caring for, choosing to take on caregiving tasks and being able to care for ourselves throughout the process. The last part is where caregiving may become a challenge.

Challenges

For months I had to keep my wife company, attend to her every need, provide her meals, and just stay vigilant. I sat at her bedside looking after her. I was basically like a prisoner. The only time I got to see the outside world was when I took her to the hospital for Chemotherapy. During that time, I did not have a world beyond these walls. My children and grandchildren had their own obligations to attend to. At times, they didn’t seem to care. This period was so mentally distressing for me.
– Hao

It’s no secret that caregiving can become a challenge. Caregivers pour an enormous amount of physical and emotional energy into caregiving and can often suffer serious life course setbacks.

Researchers have identified several core challenges reported by caregivers:

• Finding time for oneself
• Peace of mind regarding their loved one’s security at home
• Balancing work and family responsibilities
• Managing emotional and physical stress
• Knowing how to communicate with healthcare professionals
• Feelings of insecurity about one’s ability to provide the best care

Caregiving can strain even the most resilient of us. While it may be hard to admit, some of us are doubtful and fearful. What if my mother falls before I could catch her? What if my father-in-law mixes up his medication and takes the wrong one? In addition to self-doubt, which can blossom into fear of failure over time, caregiving can also lead to:

• Tiredness
• Resentment
• Feeling out of control
• Losing a sense of self
• Financial hardship
• Inadequate social life
• Marital/sexual issues with a partner
• Loneliness and isolation

• Feeling unappreciated
• Irritability
• Boredom
• Anxiety
• Guilt
• Grief
• Fear
• Depression

Recognizing these feelings will allow us to find productive ways to express and cope with them.

Caregiver burden may be experienced when a caregiver gives so much over an extended period and without proper supports or rest. Caregiver burden can negatively affect both our health and that of the person we are caring for. Health risks include emotional stress, lower morale, a weakened immune system, raised blood pressure, and even a higher risk of mortality.

Experiencing caregiver burden?

Caregivers tend to underuse available health and human services with only 25% of caregivers reporting that they requested information about financial help; just 18% said they received formal training, and just 18% made use of transportation services. In fact, caregivers are about five times more likely to express interest in a service than to actually use one.

Though most caregivers take on this role with the best of intentions, the magnitude of the task may leave many of us feeling unprepared. The lack of training and information from healthcare professionals is a significant source of caregiver burden. Too often, this information amounts to a set of verbal instructions which are given to us within hours of our loved one’s discharge from the hospital. This leaves us little time to ask questions or to practice the skills that we are expected to use. The right combination of information and skills training can mean the difference between a successful, rewarding experience and falling into burnout or a crisis.

How can occupational therapy support me so I can provide care to my loved one?

Occupational therapists are uniquely trained to address a wide range of caregiver concerns. They recognize caregivers as ‘hidden patients’ in the healthcare system who require attention for their own challenges. Caregivers are also recognized as ‘hidden healthcare team members’ who need to be a part of the patient’s care strategy, including future plans following their discharge from hospital.

The following is an overview of the steps occupational therapists take to work with and assist caregivers on their journey.

Assessment

Occupational therapists are committed to providing care that is tailored to the client. Part of this process involves sitting down with the caregiver and care recipient to identify our values, needs, and challenges, as well as problem-solving ways to move forward. Significantly for us, occupational therapists are also keen to understand how we personally find caregiving rewarding so these aspects can be reinforced and encouraged.

Other areas that occupational therapists look at include background factors (e.g., age, sex, marital status etc.), available social and family supports, caregiver relationships and current roles, financial status, the ways we cope with stress, our perception of our caregiving abilities, general health, and the reasons we decided to take on the caregiving role.

Information sharing and skills training

According to field experts, helping loved ones with daily living activities is the #1 most stressful activity of caregiving.

In collaboration with other health team members (e.g., nurses, physiotherapist, social workers) occupational therapist can provide us with the information and skills training needed to enable our caregiving role. In fact, occupational therapy has been found to lowers caregivers’ levels of depression, frustration and role loss.

Below are some of the problem-solving areas an occupational therapist might focus on:

• Stress management and coping strategies
• Managing our time and energy to find balance in life
• Identifying community resources, supports and supplemental services
• How to find housing and long-term care
• Understanding the care recipient’s medical conditions
• Dealing with family issues
• Effective communication with our loved ones and the care team
• Managing activities of daily living
• Navigating the healthcare system

Supporting self-care

While we are often looking for resources to help someone we are caring for, it is not selfish to take care of ourselves. Occupational therapists stress the importance of attending to our own needs and caring for our own mental, emotional, and physical health. They may help us find ways to o engage in all our life roles, not just of role as a caregiver. By prioritizing self-care, we are also safeguarding the health and well-being of our loved one. What good will we be to the people we care for if we become ill?

Caring for ourselves may mean asking for help. Learning to ask for help is a skill in itself, but we may be hesitant to do so for a host of reasons including issues of privacy, pride or fear of being judged. But, caregiver burnout is nothing to be ashamed of. At some point we all need support and a break from what can be an overwhelming role.