I don’t know about you, but I’m really tired of going to websites and reading that I have to “take care of myself” if I’m going to be able to take care of the patient. Now, this isn’t just on one or two sites, it’s everywhere. Don’t they realize that we already know that? Even when the plea to take care is accompanied by a long list of helpful hints on how you can do that, it seems that they’re reminding me because they know it’s close to impossible to do.

I’m coming from a place where it’s over a year since my husband Steve passed away, but I’m still in caregiver mode. I have his businesses to run and all of the estate work to handle. I have closets full of clothes that I’ve been emptying and donating, but closets full of “stuff” still remain. There’s the closet behind the bed that I lovingly call “the garage.” Of course it’s not a garage; I live in Manhattan where only a handful of people are lucky enough to have their own garages. I refer to it that way because it contains years and years of collected electronics (with or without their wires, which inhabit a space all their own, waiting to meet up with the device they belong to). It also holds toys and gag gifts and all the things Steve could never part with; each item has its own story. The rubber chicken; the Star Trek Barbie and Ken dolls; the shoeboxes full of old remote controls and twenty years worth of old cell phones. The garage is loaded with memories that go way back and I have a hard time dealing with them. In this instance, my self-care is just allowing myself not to deal with it until I’m ready.

That’s the way it is with a lot of things. I have so much practical reality to deal with that the really tough emotionally loaded stuff can wait. In my situation, I’m lucky enough to be able to let it sit for a while. I’m not moving and I don’t need the space––yet. We all have our own ways of taking care of ourselves and I’m allowing myself to take it easy, after years of giving care to my husband. I have to remember it’s all about me now. I know I’m still saying “we” and “us” and “our” but taking care of me is still so involved with taking care of “his” stuff that life still feels like it’s “us.” He’s gone, but he’s so very much here. Caregiving doesn’t just stop; it’s a part of who I am.

The most important thing I have to care for now is this website; there is nothing more important in my life. Yes, it is a result of a caregiving experience because I wouldn’t have been immersed in all of it without Steve’s cancer. During the last weeks of his life, I knew that this was my mission; thinking about it and what it can and will do is what keeps me going. I think anything I do that involves this site is self-care. I do know, however, that this keeps me in “caregiver mode;” only now I’m aiming to give care to caregivers. I can’t help myself; I’m a nurturer. Helping others makes me feel good. When it dawned on me that I should finally reach out and ask for help for myself, I was fortunate enough to discover The Wellness Community. Though it is now The Cancer Community, their method of sharing with other people is what gave birth to The Caregiver Survival Network – now known as The Caregiver Space.

shutterstock_96883711-copy-300x240Every Monday night for an hour-and-a-half, I would make myself unavailable to Steve – unless there was an emergency. There was no conversation; nothing to be overheard except the clicking of the keys of my keypad as I’d meet up with ten or so women week after week. That was my primary self-care. Keeping and posting a journal was self-care. Leaving notes for my fellow caregivers that brought them up-to-date on Steve’s condition was self-care. It was Steve’s condition that brought me there; but once I found an outlet for everything I was keeping bottled up inside me, everything I was feeling came pouring out; and I found great relief.

I also discovered Cancer Survivors Network, which is part of The American Cancer Society’s sharing initiative. Their discussion board was broken down by type of cancer and by patient and caregiver. There were also bereavement, gay, and memorial tribute sections. I read a post from a woman titled “My family has become invisible,” and I responded to it. I immediately related to this woman, though our situations were different, at least, on the surface. After a few posts back and forth, I wrote her an email on the site asking if she would be interested in having a pen pal. Happily she was, and we wrote each other almost every night. This connection was a commitment to someone other than Steve and exclusively for myself. It was one of the most important things I did to keep myself centered.

Sure I knew how to eat properly. Sure I would get up and walk around the block or get out of the house for “shopping therapy,” but there was never enough ME time for me to feel fully cared for

Because I couldn’t leave the apartment for face-to-face meetings that would take me away from Steve for hours, and I couldn’t deal with a phone session since he was a supreme eavesdropper, writing became my greatest source of relief. Sure I knew how to eat properly. Sure I would get up and walk around the block or get out of the house for “shopping therapy,” but there was never enough ME time for me to feel fully cared for. I know it sounds corny and all “new-agey” and such, but putting “it” out there, into the universe, for others to see literally feels good. Writing all I was feeling down, freed me up to talk to my friends about things other than Steve’s condition; I no longer had to “dump” all of what I was feeling on them. It gave me back a big piece of me.

So…I’m not saying not to eat properly or not to exercise or not to have a network of people to help you with your caregiving; what I am saying is write and share and write and share some more. Even if it’s only a sentence. Try and see how it feels just to write down: “I can’t take it anymore.” Get angry. Feel sad. Feel helpless and afraid. Let it go. There are others who share your feelings. You have found a place where YOU are all we care about. There is no reason for you to go through what you are experiencing alone. You can find other caregivers who have things in common with you. Use this place as a respite from your caregiving responsibilities or use it to help you cope. Our aim is to provide you with a convenient outlet to FEEL YOUR FEELINGS as well as being a resource for your other needs as caregiver. But our main focus is you.

There are lots of ways for you to share your story. You can keep it in a notebook. You can keep it in an app. You can connect with other caregivers on our forums or in the caregiver chatroom. You can share your story in a caregiver profile, send in a blog, or even become a regular contributor.

About Adrienne Gruberg

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.