It is well-known that caregiving for any condition is a challenge in many ways. Physically, caregiving can be exhausting and painful. Emotionally, it can result in stress, burnout and even depression. Socially, caregiving may lead to feelings of isolation and loneliness. Caring for someone after a stroke can be particularly challenging.
A recent study from Canada examined the outcomes and challenges caregivers face when caring for individuals who had suffered a debilitating stroke. The researchers stress that “family caregivers contribute to the sustainability of healthcare systems” by providing care at home and keeping their loved ones out of hospitals and expensive senior care communities. And while there are many rewards associated with providing much needed care, caregiving can also have unpleasant outcomes.
When analyzing negative consequences of caregiving for those who had suffered a strike, four major themes emerged:
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- Restructured life
- Altered relationships
- Physical challenges
- Psychosocial challenges
In terms of restructured life, caregivers reported that in order to accommodate the care needs of the individual, and manage multiple roles and responsibilities, they had to change their daily routines and personal time as well as alter their work schedules.
Caregivers also reported that they had to alter personal relationships with the individual receiving care as well as the family. Themes such as relationship loss, loss of a partner, decreased intimacy and the care recipient becoming a stranger were reported. Loss of relationship with a spouse was the most difficult for the caregivers.
Caregiving has its physical challenges and caregivers reported that strenuous tasks like bathing, dressing, and toileting were particularly difficult and took a toll on their physical health. Some caregivers reported sleeping difficulties due to excessive worry and checking in throughout the night.
Lastly, caregivers reported mental, emotional and social struggles associated with their role. Some felt depressed, burned out, frustrated and anxious. Others indicated that they experienced a loss in their autonomy and self-identity, while some reported feelings of loneliness and social isolation. One of their greatest fears was the occurrence of another stroke.
Caring for someone who experienced a debilitating stroke can feel like a full-time job. It can be rewarding in many ways, but the role may also come with many life-changing outcomes. The findings in this study are not unique, and many caregivers may go through similar patterns including restructuring their lives, altering their relationships, and experiencing both physical and psychosocial hardships.