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

EMOTIONAL TURMOIL AND CAREGIVING FOR A SPOUSE


This is the 2nd post in our caregiving blog mini series...


The Emotional Turmoil of Being a Caregiver

Caregivers experience a range of emotions, and no matter where they may be in the process of dealing with caring for someone with Aphasia, these feelings will come and go. No matter how successful a caregiver, no matter how good they’ve gotten at figuring out a plan and developing strategies to help them adapt to their new lives, there will always be new challenges sent their way to deal with, to cope with. These are just a few of the emotions caregivers I know and have worked with have shared feeling:


RESENTMENT: “How does he expect me to do all this on my own…I am only one person and there are simply not enough hours in the day.”


GUILT: “How could I get upset with him…he can’t help it…It’s not his fault that he has Aphasia.” or “How could I even consider going out with my girlfriends when my husband needs me?”


OVERWHELMED: “My entire life has been turned upside down and there is no end in sight.”

ALONE: “I just want my wife back, and to be able to have a conversation like we used to, share our feelings and thoughts with one another without it feeling like a constant game of charades.”


SAD: “We used to be such social people, but now I feel like when Bob does hang out with his friends, it’s because I’ve arranged it, and I play interpreter and translator during the entire conversation.”


A Wife’s Caregiving Perspective

If I had to choose one thing that is the hardest for me, I would say it is being the one who is ultimately responsible for making all the decisions.”


This is something I hear again and again, and is actually a direct quote from the wife of one of my patients who has been living with Aphasia for over 6 years. Although our loved ones with Aphasia still have opinions, their challenges with being able to verbalize these opinions, provide explanations to back up or support their opinions, and abilities to process complex issues is somewhat restricted. Therefore, it is often up to the caregiver to decide things like: “Should I hire an accountant or try to do our taxes on my own? When should I call the plumber about the leaky sink? Should I call Bob’s friends since he hasn’t talked to them in awhile…I don’t want him to lose another friend? What should I make for dinner? Should we go on vacation and where should we go? Where should the kids go to camp, or college? Should I switch insurance plans to better suit our needs?”


The wife of another one of my patients openly shared how Any decisions we used to make as a team are solely on my shoulders. I have become that right side of his body that no longer works like it used to and the area of his brain that cannot think for itself or help his mouth to form words.” She further expressed that her husband is still her husband, there is no doubt. However, there is a part of her that feels she has lost her “partner,” as she no longer has that sidekick that used to participate in decision making and would provide her with emotional support when she had a rough day at the office.


In my next blog, I will be sharing the caregiving perspective from that of a daughter of someone with Aphasia. You will continue to see how crucial it is for Speech Language Pathologists to address the categories that Tami Howe and colleagues (2012) revealed in their article, which will be shared in one of our upcoming blogs in this series.






Howe, T., Davidson, B., Worrall, L., Hersh, D., Ferguson, A., Sherratt, S., & Gilbert, J. (2012). ‘You needed to rehab … families as well’: family members’ own goals for aphasia rehabilitation. International Journal of Language & Communication Disorders.


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