Caregiving for a loved one battling a new, intensive, or chronic medical condition can be a stressful, yet fulfilling journey. Informal caregivers (unpaid family and friends) must balance their caregiving role with other social, occupational, financial, and familial matters. In 2018, approximately 8.1 million Canadians aged 15 or older reported caring for a family member or friends with long-term health conditions, a disability, or difficulties related to aging. Of these individuals, 48%, 8%, and 5% cared for a parent or parent-in-law, spouse or partner, or a child, respectively.
There is no defined role for an informal caregiver and the commitment required and patient-caregiver dynamic will depend on who they are caring for. Children and teenagers rely on their caregivers to advocate for them and guide them through their health care journey. Caregivers schedule medical appointments, explain diagnoses, treatments and other medical jargon, and will be in charge of organizing and managing health care documents. However, when teenagers or adults care for their own ill parents, it can feel like a strange role reversal.
Caregiving for an adult can begin unexpectedly or may be a step-by-step process. In either case, it can be challenging to determine how involved you should be in your parent’s health journey and how to ensure your parent still has some sense of independence. Caring for a spouse will undoubtedly change your relationship and can also bring both parties closer together. In this situation, one spouse may feel like they are doing all of the work. However, it is important to try to separate caregiving from the other aspects of your relationship.
There are countless rewarding aspects of caregiving such as strengthening existing relationships, learning new skills, and allowing caregivers to find a sense of purpose. Patients also benefit from receiving care from individuals closest to them. Family and friends know the patient best, including their behaviours, body language and movements, personality traits and preferences. As a result, changes in the patient’s mental or physical state may be easier for caregivers to detect. Aside from the daily physical tasks, caregivers help with such as transportation, dressing, and feeding, they also provide patients with emotional support and can help advocate for the patient and communicate with their health care team.
However, there are also many challenging aspects including as immense stress (caregiving itself has the characteristics of a chronic stress event), responsibility and isolation, which can impact one’s mental and physical health. In many cases, patients cannot afford professional care, which makes informal caregiving a 24/7 job.
Caregivers may feel as though their life is on pause and can forget to take care of themselves, often leading to caregiver burnout, defined by the Cleveland Clinic as “a state of physical, emotional and mental exhaustion.” Caregiver burnout typically occurs when caregivers over work themselves, are not properly supported, and do not spend time caring for themselves. It is important to catch the signs of burnout early, before it progresses to a point where you can no longer take proper care of yourself or your loved one.
Symptoms of Caregiver Burnout
- Lack of energy
- Excessive or lack of sleep
- Prone to getting sick
- Impatience and irritability
- Anxiety, depression, and sudden changes in mood
- Changes in eating patterns resulting
- Weight loss or weight gain
- Loss of interest in activities and hobbies once enjoyed
- Physical sensations such as body aches and pains, headaches, and stomachaches
- Feelings of hopelessness
- Finding it challenging to manage everyday tasks
Strategies to prevent and eliminate caregiver burnout:
- Seek out and accept support
Family members, friends and colleagues are likely very willing and capable of performing some of your caregiving tasks, including running errands, looking after children, and preparing meals. Delegate tasks to trusted individuals to ensure that everything you need gets completed.
- Communicate with other caregivers
Talking with individuals in similar roles about their experiences and advice will allow you to gain support and a sense of community. Joining a caregiver support group will allow you to meet new friends that can truly empathize with your situation, and provide a unique outlook.
- Take proper care of your health and body
Maintain a well-balanced diet, exercise, get enough sleep, and attend all of your regular health care appointments. Your body powerful if you give it the correct fuel!
- Take breaks to do things you enjoy
Although it may feel impossible to find time to relax and socialize, it is important to take breaks to do things you enjoy, such as keeping up with hobbies and meeting up with friends. Schedule these activities into your calendar as though they were appointments – that way you will be less likely to cancel!
- Share your thoughts and feelings with others
Sometimes our emotions can be too much to understand and manage on our own. Consider speaking with a licensed therapist, social worker, or other professional about your experiences and receive concrete coping strategies. Keeping a journal of your thoughts and feelings can also help relieve stress and allow you to better analyze different events and experiences.
- Consider utilizing respite care services
Take advantage of respire care services from personal care workers or health care professionals that can come to your home, and provide you with a few hours of alone time. Respite care services can include personal support or homemaking.
Although there is no one common path of being a caregiver, all caregivers play a crucial role in the health care journey of their loved ones. However, caregiving is associated with many physical and psychological consequences. It may feel selfish and unrealistic to devote time and effort towards looking after for yourself; however, doing so will ultimately give you the energy, resources and capacity to be best caregiver possible!
Educational and supportive resources for caregivers: