When I first conceived of The Caregiver Space, I was going through what I perceived to be a rough patch. I needed to be available to my husband and his mother, both cancer patients, 24/7. It took about six months before I began to look for support online.
The Internet then wasn’t what it is now, and finding what I was looking for was far from easy. The group I finally found changed my life and I knew that once Steve and his mother passed, that I would dedicate my life to making it easier for other caregivers to find a space to just be. It was meant to be a place where anyone who was a caregiver could come to find likeminded individuals to share their experience with. It was meant to be a place for all caregivers, of any description.
At that time, I had no idea there were over 65.7 million family caregivers in the United States. I knew that as difficult as my life was at the point when I sought help, there had to be a lot of people who had it a lot worse than I did; after all, I had more resources than many caregivers. Sure I was always on call, went to every doctor’s appointment, every level check, every CT scan or MRI. I managed their meds and insurance claims. I was there to make sure the two people I was caring for were as secure and as comfortable as possible—same as most caregivers.
Despite the economic and geographical differences we each have, I figured there would be a common bond and that if the site existed as I envisioned it, that we would support each other and do what we could, as a group, to make our lives a little easier.
Last week, Allison posted an article that shook me to the core and I’m taking it very seriously. It addresses the fact that many of our members and users are being mean and judgmental about other caregivers. It had never occurred to me that there would be people comparing their plight to that of others, and demeaning others’ situations instead of finding the common ground on which to support each other.
No two caregiver cases are alike. Every one of us has a unique story. We want to acknowledge that and keep the site from becoming a competitive, unsupportive and uncomfortable place. Why would you go someplace where people could be mean and hurtful in a time of need?
Many years ago, my husband had been in a motorcycle accident where he badly injured his foot. I was working full time. My life was turned upside down in an instant. For the first two weeks of his recovery, I had been thrust into the role of full-time caregiver. Once he was home, I returned to work part-time, taking hours off every day, treating his wounds morning, noon, and night and going to appointments with all of his doctors. My life was as intense as it ever was when I was caring for him at the end of his life. However, I knew he would recover from the accident. When he was a cancer patient, I knew that the end would be his death. That was the only difference.
No one can tell me that for ten months my life wasn’t hell. It was before the Internet existed, so there was no chance of finding online emotional support. I’m sure there are parents, spouses, friends and relations who find themselves in the position of temporary caregiver and there are many long distance caregivers who should be welcomed into our community for as long as they need us.
There is no question that some caregivers have it way worse than others, but does that mean that those who have it “easier” don’t experience very real pain? Does it mean their lives aren’t totally disrupted and that they’re not completely overwhelmed? Does it mean they don’t qualify as caregivers? Of course not.
So why judge? Why not experience the positive sensation had when sharing something helpful or just saying something kind vs. ugly, angry manifestations that fester with criticism and judgment?
You’re welcome to use the forums for angry, frustrated, get-it-out-of-your-system rants. We know you need to let it out—do it there.
Allison’s post points out that “Negativity will poison this community.” She’s right. We’re already in delicate emotional states, why pour salt on others’ open wounds? We all have problems—there’s no sense in comparing them. It doesn’t help anyone and helping others is what this site is all about.
Adrienne Gruberg is a former family caregiver and founder of The Caregiver Space. After six years of caring for her late husband and mother-in-law she conceived of an online support space all caregivers could come to. Adrienne holds a BFA from Boston University. She founded AYA Creative in 1982, an award winning graphic design, marketing and advertising company. Her design training has helped shape the website and her personal and professional experience continues to inform and influence the caregiver centric support experience she has created at The Caregiver Space.