Who is a Caregiver?

Who is a caregiver?

The answer surprised me.

As my parents entered their 80's and then my dad his 90's, I was doing more and more things for them. They lived in their home. I lived in mine. It started slowly - so slowly that it there was no need to define it. They were my parents. So, when they didn't understand a bill they got in the mail - it was no big deal. I deciphered it for them and was on my way. We'd always been a small but close family. My children were blessed to have my mom and dad as their grandparents. They went to every ball game, every dance recital, every graduation; they were as involved as they could possibly be in our lives. Frequent holiday and celebration dinners, barbecues, movie nights - it was all just normal for us.

But now the kids were grown and living on their own. It was a new chapter for all of us. And in the midst of it all, I divorced after 31-years of marriage.

My parent's home, the one my father built and that I had grown up in - was the hub of our family. The place where our family foundation was laid. As they aged, it continued to be so. My mom always had fresh flowers on the antique dining table or the table at the end of the sofa. They were always beyond happy when I went over to visit, or just stopped by on my way home from the store. The tidy home welcomed each of us in the family - all generations.

The first bump in the road of our parent-child relationship came when mom began having vision issues. Eventually, she became legally blind and needed help with errands, printed mail, and the like. Then she lost 85% of her hearing, eventually getting a Cochlear Implant. Then Dad began to have symptoms of Post-traumatic Stress, and what I now believe was dementia. And finally, my mom was diagnosed with Congestive Heart Failure. But these things didn't happen suddenly or all at once. It was like a very slow train ride that you expect to take you one place, but it takes you someplace else. At first, the stress of this whole new journey wasn't perceptible to me at all. It was just helping my parents. But over time, even when those around me grew concerned about how much I was doing, I truly didn't see it as stressful.

But of course (I guess) - a time came when I just couldn't do it anymore.

From that first bump to the time I finally looked at the situation clearly - the word caregiver never once occurred to me. Caregivers were either people who are paid to take care of someone, or they live with someone to give that care. That was my definition. And I think it's the definition a lot of people have.

But as I searched for help online - the word that kept coming up was caregiving. And sites that focused on caregiving had the best help, the best resources, the best advice. So, instead of looking up "how to help someone with macular degeneration" or "how to help aging parents stay in their own home" - instead, I used the word "caregiving" to try and figure out how to navigate this new road. I remember thinking how great it was that I'd figured out where to look for information, even though I didn't belong to the exclusive group called, "caregivers."

One site that helped a lot was Caregiving.com. There, a nightly chat put me in touch with caregivers. I went in almost apologetically, not wanting to admit that no, I did not live with my parents. I actually had my own home, though I was spending less and less time there. But as I came back to the chat again and again, I realized that the people in the Caregiving chat were in a diverse set of circumstances. Some did live with their caree (a new word I learned). For some, their caree was in a care facility of some sort. Others did as I did, helping their caree to be able to stay in their own home - because of their frequent and intense help. And others were caring long-distance, while their caree was receiving in-person care from another relative or in a facility that was states away. When someone asked me, during the chat, who I cared for, I explained honestly that I did a lot for my parents but I wasn't a real caregiver. The response, unanimously - was this, "You are a caregiver."

*sound of screeching brakes*

Um...what? Are you sure?

As I returned to the chat and began to know other's stories, I easily considered what they were doing caregiving. But it was harder to consider myself a caregiver. Still, over the next several months, I didn't just accept it, I owned it.

I am a family caregiver!

Being able to embrace it was empowering.

It gave my mind and this new journey, a place to rest. It wasn't nebulous anymore. It had a name.

The chatroom is becoming something that I plan my day around. It's like knowing that a group of friends are coming by to support you every night at 6pm, only you don't have to clean the house for them, you don't have to get dressed or put on make-up. You can leave your bra right where you flung it when you got home. All you have to do is show up.

I can't begin to tell you how important the people in chat are to my life as a caregiver. They were instrumental in helping me make the best decision for my mom and for me. And now that Mom is living with me, I'm asking different questions; I'm searching for advice and meaning. The friends I've made on chat have been there through it all and always will be.

Isn't it strange? That someone like me and someone like them - are so linked and yet have never met and probably never will. And it's a two-way street. As much as I soak in, I also try to give. In all the talk about technology changing our society in a negative way, there are also bright lights - like chatting with new friends, people who have been there, and gleaning what I can from their experiences and love.

If you're caring for someone and this resonates with you at all, you are probably a caregiver. My advice? Don't isolate yourself. Don't believe that you're alone in this, or that there just aren't answers for your particular situation. Reach out in whatever way you can, whether it's your next door neighbor or an online support group. Because...

YOU ARE A CAREGIVER!