The Isolation of Caregiving and The Virtual World of Support

When I first became my grandmother’s caregiver I had no idea what my life was going to be like. I wrongly assumed life and our family roles would be the same as they had always been.

A few months into the journey I had realized how different everything was from my expectations. For starters my once social and outgoing grandmother had started shying away from her routine outings.

She no longer wanted to visit friends or even receive company. The once energetic and bustling home became still and quiet.

In retrospect, I now realize my grandmother was modifying her behavior because she had started to forget people’s names and faces. The burden of memory was exhausting for her and the idea of “making a mistake” in a public setting was horrifying. To combat this she shut down and retreated. The woman who once had a datebook full of appointments and places she wanted to go had whittled things down to literally one outing a week: her standing appointment at the beauty shop.

I became isolated by proxy. It was awful.

I had a small personal blog I had been writing in and slowly I started opening up and sharing how alone I felt. I started writing about what my day as a caregiver was like. I didn’t have any goals or expectations, I simply felt the need to write so I wouldn’t forget.

I was completely surprised to hear back from the expanse of the world wide web. People I had never met left me comments of encouragement. Comments with advice. Comments with questions. I went from feeling all alone as a caregiver to feeling like I had people. If my day was bad, and as a caregiver some days are simply bad for no reason other than exhaustion and repetition, I had an outlet.

It was through writing about being a caregiver that I started to wonder: are other caregivers out there writing too? Yes. Yes they are!Some of the most stunning and heartfelt writing you will ever experience is written by caregivers as they navigate the journey of taking care of their loved one. Reading about other people’s days was so illuminating for me.

There were a lot of familiarities – enough where I started to gain some much-needed perspective. It was also helpful to read posts from caregivers who were taking care of loved ones who were further along in the stages of Alzheimer’s. It’s one thing to read about the stages or hear about them from a doctor, but it is another thing entirely to read about them from someone who is in the thick of it.

Reading blogs led me to online support forums where I found experts I could ask questions.

Little by little I cobbled together a network of virtual support that protected me on some of my hardest days. It was thanks to my virtual support network that I knew how to research and find local respite care. It was thanks to my virtual support network that I knew when to bring in the help of hospice care as we were heading into the ever-advancing next stage.

TIPS FOR FINDING VIRTUAL SUPPORT:

Start telling your story. There are many free platforms to help facilitate online storytelling. I recomend WordPress.com and Medium.com for ease of use. Even if you never make your story public, having a record of your journey of a caregiver is incredibly valuable and something you will be thankful you have.

Once you have started telling your story, and if you are comfortable doing so, start sharing it. By sharing your story you do two things: 1) you open yourself up to support from others 2) you help others by providing insight. Share your story via email with friends or through Facebook or your other favorite social media channels.

You can still find online virtual support even if you are not blogging about being a caregiver. There are so many support networks out there. Start with the Alzheimer’s Association. They have a search feature that will allow you to find an in-person support group as well as online support.

The most important thing to remind yourself is this: you are not alone. Some days you may feel like you are, but trust me, there are people who have been where you are and know just how to help you through.

For local services and support call Erin McDevitt at Aging Your Way to get caregiver assistance.

Dresden Shumaker is a writer, advocate, and former full-time and live in caregiver to her grandmother. She chronicles her adventures in single parenting on CreatingMotherhood