This post is my response to Day 9 of The Health Activist Writer’s Month Challenge hosted by WeGo Health. Today’s prompt: Patients, what advice or tips do you have for caregivers out there – professional or otherwise!
Being a caregiver is no easy task. With the deinstitutionalization of health care it has meant that more caring takes place in people’s homes. In many cases this requires a family member, relative or friend to take on the added responsibility. As a patient who has had three major surgeries in my young life, I know that I can never fully appreciate the amount of work it took to take care of me and to advocate for me. After all, I was semi conscious through a lot of it!
The first thing I would want to say, as a patient to a caregiver is thank you. Thank you for being there for me in a time of extreme fragility and vulnerability. Assuming the role of a patient goes against everything society tells us we should be – strong, healthy, independent, capable. As a patient, accepting this can be difficult and frustrating and sometimes we react differently to this pressure. I apologize if this frustration comes out in a hurtful or mean way. Thank you also for taking on the emotional, physical and financial toll of care giving. It is unfathomable to me just how difficult this role can be.
I also count myself very lucky to have had a caregiver who was able to devote as much time and attention to me as she did. I have encountered many patients, young and old who have come into the hospital with no support, guidance or help. To me this was a huge wakeup call as being without a care giver is a reality for many.
In the caregiver-patient relationship I have only really been on one side of the spectrum. Sure, I have witnessed my Mom take on the caring role for many members of my family at different times and in different levels of extremity, but the responsibility of care has never fallen directly on my shoulders.
It is important for me to acknowledge my ‘patient only’ perspective because it informs my views. I can speculate on what it is like to be a caregiver, given my observations, what I have read and my interactions with caregivers, but I cannot speak from a place of lived experience. Just as many caregivers cannot feel and understand what it is like to be a patient if they have not been in a similar situation themselves. Empathize, yes, but deeply relate, not always.
The caregiver-patient relationship is a very special one. I strongly believe that it is important to recognize the distinct perspectives that both a caregiver and patient has. People often say, to truly understand someone is to walk a mile in their shoes. My question is, how do you know you’re in the right shoes? We all react and interpret similar circumstances a bit differently, and the patient experience is no difference. Simply acknowledging this fact goes a long way.
My last piece of advice for a caregiver is one I have only come to notice more recently. The digital age has made it easier and more commonplace to discuss health issues and stories online and through social media. Previous to this, face to face, word of mouth and telephone interactions were the only way to connect caregivers with other caregivers and patients with other patients. Through my travels on the Internet I have come across some stories from caregivers where I have questioned what the patient would feel if they read them. I find this occurs more with parents who are caring for a young child with an illness, but the same can apply to any caregiver-patient relationship.
Before you share your patient’s story, ask yourself, would they be okay with this information being shared in the first place? Would I feel comfortable with them reading this story? How am I depicting their experience in this story? If you are unsure of these answers then it may be best to check with the patient first. They can let you know what they are comfortable with and it is a good opportunity to have a conversation about your caregiver-patient relationship.
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