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Finding enrichment and a new sense of purpose when your identity has become that of “caregiver”

CAREGIVING FOR A PARENT


This is the 3rd post in our caregiving mini blog series...


A Daughter’s Caregiving Perspective


What if we are a child who is now caring for our mother or father with Aphasia, who not only has trouble taking care of themselves but is no longer able to communicate his/her wants and needs?


A daughter of one of my patients shared “From when we are young, we always go to our parents to share the joy, grief, ups and downs in your life.  When we are young, our parents provide physical support.  As we all age, the physical support from our parent’s transitions into emotional support.  Parents provide us with unconditional love and support.”


I would imagine it can be challenging for someone with Aphasia to provide the same level of emotional support they once did to their children, their spouses, and even to their friends.  And it’s not that they no longer have these feelings, or even that they are unable to show these emotions, but the verbal and listening pieces necessary for providing emotional support have been impacted by the language disorder. It may be that we need to acknowledge and accept their new ways of demonstrating this emotional support, whether it’s through more nonverbal cues (i.e. facial expressions) or physical expressions of emotion (i.e. hugging, holding hands).


Imagine being the daughter of a father who has Aphasia. This “daughter” also has a family of her own – two children, and a husband – and now she has taken on the role of caring for her father who has significant Aphasia. She is his personal secretary - having to make and keep track of appointments; she is his speech therapist, practicing tasks daily and making sure the other family members implement the activities throughout the day; she is undoubtedly his advocate, searching for the best therapists that implement methods by the latest research…and the list goes on. She also has a successful career and her own family responsibilities. When is there time to simply be a daughter? How can she possibly be on the receiving end of that unconditional love and support when her day-to-day schedule is bogged down with the 30 other roles she has taken on?


Let’s also keep in mind she is trying to be a mother to her own two children and a wife to her extremely supportive husband. She feels guilty when she’s googling the latest research in Aphasia because she should be spending time with her kids. So she takes her children to the playground and reads to them during the day, and googles in the middle of the night when her kids and husband are asleep. She’s trying to care for her father who has taken care of her, but struggling to find a balance between caregiving for her father and caring for her own children.


This is a lot for someone to deal with, to cope with, and it is a tunnel where that light at the end is difficult to find. When our gas tanks are empty, how can we convince ourselves that it’s ok to do what we need to do for ourselves in order to get a refill, and recharge? Is there something we can do as rehabilitation specialists to encourage this mindset and provide our loved ones with positivity, and encourage them to look after their own emotional and physical well-beings?


In my next blog, I will discuss the 7 categories described by Tami Howe and colleagues (2012), and why what we might currently be doing as medical professionals to rehabilitate our caregivers is SIMPLY NOT ENOUGH.


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