Written by Wendy Johnstone
“All the art of living lies in a fine mingling of letting go and holding on.” ~Havelock Ellis
What does life look for a caregiver when they are no longer a caregiver?
Michael’s wife, Shelley, died after three years with cancer that spread to her liver and spine, causing pain that required intensive medication and being bedridden for the last year of her life. When she died, Michael was both relieved and devastated. After the initial shock and grief, he found himself wondering what his life was going to look like now that he was no longer a husband or caregiver.
Of course, there is no single answer to this question. How a caregiver heals depends on emotional temperament, the relationship between the caregiver and the person they cared for, the circumstances around the death of the loved one and the time and energy spent as a caregiver, among other factors.
In Michael’s case, he found himself initially forgetful; standing in the grocery store without knowing what he needed. He experienced waves of emotional energy and difficulty sleeping. He grieved his wife’s death with self-compassion and gave himself permission to experience the feelings of relief (even if it was often followed by feelings of guilt). He booked an extended vacation for the first time in three years to a place they talked about in Shelley’s final days.
Another caregiver, Laura, in her mid-60s, cared for her life partner who was 10 years her senior. After he experienced a stroke, the care he required was physically and emotionally exhausting. Laura recalls that he couldn’t speak due to aphasia, and he required daily assistance with his personal care. When he died three years later of a second stroke, she found herself feeling a range of emotions: relief, anger, and guilt.
Laura initially felt lonely as she had lost touch with her social circle and leisure connections while caring for her husband. Her sense of purpose vanished. She also found big shifts in her emotions. Even though her husband had died, she still felt moments of intense anger towards him, quickly followed by guilt. She took the opportunity to seek a counsellor for support. Slowly, she rebuilt her community of friends through regular social gatherings and returning to her fitness regime. Volunteering for the local brain injury society mentoring other caregivers now gives her joy and purpose.
These two caregivers relayed a few common messages of their experiences:
- The caregiving experience and grieving takes time. Don’t compare your experience to others.
- Be patient with yourself and show self-compassion daily.
- Finding support during the caring experience and, more importantly, afterwards, was pivotal in finding a new normal post-caregiving.
One certainty they shared: after living with a loved one with illness and disease, neither take their own lives and abilities for granted. They are both committed to living life with intention and purpose, riding the waves and findings ways to feel joy again.