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.
Thank you. I REALLY needed this just now. I’m still unsure just where I fit in the scheme of the “Caregiver” role anymore, but this still helped immensely.
Very well said … We need compassion , caring and understanding.. A safe place to come …
Thank you for what you continue to do for all caregivers..
I agree whole heartedly. Sometimes my wife and I handle the challenges easily, and other times like the past continual three years it has been a daily grinding of our joy and happiness into depression. We have each other. Although my wife is seriously ill at times, she is still bright and vibrant and full of life. But I know what it is like to see my sweetheart not responding and her eyes just two pools of pain. I would not want the negative comments either. We get plenty from the world around us. Let us always be looking for ways to encourage and a safe way to vent too.
I just stumbled across this via FaceBook. This is an excellent idea! And there are different levels of care taking but I think we all suffer at one time or another from intense feelings of guilt. I would have to say that in my own situation, the guilt is
Crippling me. And what would help me
Feel better is knowing there are other caregivers out there that have had those thoughts. The ones that creep in on you from out of nowhere then make you feel incredibly guilty like you are a bad person to have them thoughts. Kudos to this site!
As a former facilitator for caregiver support groups, I saw firsthand the need for a safe place to share feelings and vent without judgment, and to experience the validation that comes with knowing that, “I’m not the only one who feels this way.” Listening with respect and compassion is critical to other caregivers.
When I became a caregiver myself, I experienced how frustrating and upsetting it can be when friends say all the wrong things, and I appreciate how helpful and therapeutic it is to talk with those who understand.
Criticism and judgment are in abundant supply from those who don’t understand our respective experiences, which is why a safe, supportive, non-judgmental place for sharing is so important.