While disability comes in all shapes, sizes and diagnoses, caregiving options are more limited. Most people with disabilities will fall into one or more care categories at any given time: independent, receiving care from a family member, friend, significant other or agency. The most complex of these relationships is that of a significant other and friend due to their dynamic nature. Is this other person automatically a caregiver because they spend time with you? Can someone provide too much help? When it comes to friends and caregiving, is there a line that should not be crossed? What about burnout? There is a plethora of YouTube channels that explore interabled romantic relationships deeper than I ever could, but friendships are plentiful and rich.
My friend “Joe” has been my photographer and travel buddy long before my days at Quantum and is seen in my photos. I asked Joe a few questions about our relationship as it pertains to caregiving and this is what he had to say, as well as my responses. Note: some answers have been edited for privacy and clarity. Every relationship is different. Ours may be different from yours and that is okay.
How long have we known each other? Where/when did me meet?
Joe: We met during the summer of 2016 at your house. You and “Andy” were waving me down while I was trying to find your house
Tim: I don’t remember this specific situation at all and we are both a little fuzzy on the year (I still say 2013). Andy and I met in college, and Joe was Andy’s childhood friend to whom I was introduced at some point after graduation.
Does caregiving come naturally to you or was there an adjustment period?
Joe: Somewhat, I used to take care of my grandmother.
Tim: One of the things I am mindful of when first meeting someone is their ability to identify caregiving opportunities and anticipate certain needs. Most of all, their willingness to help. In my experience, it helps when the friend has previous experience. My highly-communicative nature makes it so that the individual need only be directed. Even then, however, things may change when the person realizes that I need continuous care. Thankfully, all my friends are extremely giving when it comes to their time and resources. Joe is one of the most caring and selfless people I have ever met.
What caregiving-related tasks do you help with when we spend time together?
Joe: I assist with running errands, helping with opening packages, putting on outerwear before going somewhere.
Tim: Additionally, cutting food, grabbing the few things from high shelves that iLevel technology on my power wheelchair cannot reach, driving, losing at poker, general ADLs.
Do these responsibilities change on overnight trips?
Joe: Yes, during overnight I help out with transporting you from your chair to the bed and occasionally with bathroom things. In addition, helping with deciding fashion choices
Tim: Overnight adventures have taken a backseat thanks to the pandemic. There is usually a third person there to assist with transfers and bathroom needs. Joe’s fashion advice is of paramount importance. Also, there is something uniquely humanizing about watching someone try to put a toe sock on a spasming foot.
How has our relationship changed from the beginning to now in terms of caregiving?
Joe: I believe over time, our friendship has become stronger through caregiving.
Tim: What began with “can you hold the door” is now “can you help me in the bathroom?” Similarly, this has evolved into “let’s plan a trip outside the country.” Friendship takes time and trust is built. To Joe’s point, caregiving requires a great deal of vulnerability and intimacy, especially among friends. Something that almost always develops a stronger bond. I am grateful for friends like Joe and the countless others that are part of my life.
About Tim Shin: Tim lives in River Vale, NJ and uses an Edge® 3 Power Wheelchair to maintain his independence and mobility. He enjoys food, fashion, music and television. Click here to learn more about Tim.
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