Reflections on caregiving: Navigating challenges, finding joy
Caregiving, while demanding, can undeniably be rewarding. I learned many valuable lessons as a caregiver to my father during the last five years of his life.
Despite facing changes in his cognitive ability, judgment and personality, my father coped with his brain injury, showed a high degree of resiliency and for at least a decade was able to retain degrees of independence. But when he unexpectedly got lost driving one day, we knew he was entering a new phase. What next?
Me and my father
As his need for help increased, I turned to various sources for guidance, including library books, colleagues, and the Alzheimer Society of Canada. Seven key things I learned:
Create a community of care: Establish a supportive network for both the person with dementia and their primary caregiver(s).
Develop a respite program: Plan for regular respite: daily, weekly, monthly, and yearly. You can’t be an effective caregiver if you’re burnt out!
Provide daily structure: Support your loved one to engage in life with meaning, purpose, and a sense of belonging.
Capture memories: Create a book with words and pictures of their life to help preserve and reconnect with memories. Creating a book filled with memories, letters, and poems became a powerful tool for preserving my father's recollections.
Respect autonomy: Acknowledge and respect the person’s needs, opinions, and autonomy. For example, I discovered the importance of understanding the significance of seemingly mundane items, such as a wallet and driver's license, as symbols of my father’s freedom and accomplishments.
Bridge the gap: Help bridge the gap between who the person was and who they are now, helping others to understand this transition.
Let go of prior roles: Releasing former relationship expectations and roles can free you to embrace the current reality.
Arranging engaging activities, using support services, and maintaining a positive atmosphere helped maintain my father's independence, dignity, and connection. The joy I felt in caregiving arose from spending quality time with him, knowing that each moment added meaning to his life.
Reflecting on this journey, I offer additional insights:
Arm yourself with knowledge: Knowledge transforms the trajectory of your caregiving journey.
Seek help: Advocate for support and don't forget your own identity outside the caregiving role.
Prioritize your own well-being: Sleep, exercise, and maintaining other roles can help maintain or increase your energy levels.
Acknowledge your grief: Grieving is a natural part of this journey; give yourself space for processing it.
Make sure to focus on effective communication: For better collaboration, work on enhancing your communication and conflict resolution skills.
Navigate apathy with dignity: If your loved one becomes apathetic approach the role of teacher and guide with dignity and care.
Validate: There are many ways to validate: acknowledge the person’s values, strengths and successes, focus on their current abilities and connection and reflect back what they are saying and how they are feeling.
My two suggestions for fellow caregivers and those supporting them are simple:
Seek help and support: Reach out for assistance early, acknowledging the difficulties in caregiving and paying attention to your well-being.
Offer compassion and connection: If you know a caregiver, reach out, offer respite, a listening ear, or a comforting presence. Remind them they are not alone in this challenging journey.
