Sometimes I do stuff and go places without Jess. It took me a long time to get comfortable with it. She’s an extension of me. We are connected at the hip.
We Are Still A Team Though
Although I go places and do my own thing, Jess and I also do stuff and go places together. We are a team. That is how Jess and I fondly reference the time in our life after Madison and Hannah have moved on.
Do Stuff and Go Places to Help Avoid Caregiver Isolation
After leaving my job as a Registered Nurse in Fall of 2014, I began to feel suffocated and overwhelmed by the restraint of being the constant caregiver. With my social connections from work all but gone, caregiver isolation was in full-effect and I felt as though I was invisible to the rest of the world.
Eventually, I made a conscious decision to combat the caregiver isolation head-on. Maintaining sanity is a top priority. To do so, I pushed myself to create opportunities – to do stuff and go places so that I could experience a life outside of my isolated caregiver world. That didn’t mean I had to go far away, or spend a lot of money, or even take a lot of time. At the very least, I could do stuff in my back yard and go places within my community. However, I could also learn to be okay with traveling.
My Own Choices Had Been Contributing to the Isolation
In the past, when I would get invited to go do stuff or go places, after much stressful deliberating (with myself), I often made the decision to not go. I would feel instant relief once that decision was made.
Feelings of personal devastation immediately followed. The isolation that came from making that ‘right’ decision was at times almost unbearable.
Reasons I Didn’t Do Stuff and Go Places
I found myself turning down opportunities to travel for three reasons. One of the things I disliked most in life was asking other people to help me with Jessica’s care so that I could experience leisure time. It just felt wrong. Another thing was that when I went away without Jess, I knew it was hard on her as well as those around her.
But this was the biggie – In regards to travel, the deep concern of “what if something happens to me” is very real and made it difficult for me to choose to go do things without Jess. One thing many parents of special needs individuals will tell you is that we hope we outlive our children. We know our children need us way beyond their childhood years. We know no one understands them like we do, no one can communicate with them like we do, and no one loves them the same way that we do.
However, I was so stressed out that it was completely unhealthy. I knew that an unhealthy me was not a good situation for the long-term care of not only myself, but most of all for Jessica.
How I Addressed Caregiver Isolation
I began working on facing the fact that at some point others will have to care for Jess in my stead. Of course, I already knew that statistically speaking I probably won’t outlive Jess. That made me realize that there is no time like the present for her to start learning that others will care for her when I am not there to do it myself.
This was when I finally decided to combat the isolation head-on. One day, somehow, someway, something pushed me beyond the overwhelming fear I had of Jess losing me too soon. (Okay…only a tiny bit beyond, but beyond being paralyzed.)
After MUCH deliberation back and forth (with myself), I decided it was time to go. I planned a top-secret respite for myself. I had never needed a getaway more. After making the decision, I began feeling better immediately. I contacted family and friends and openly told them of how desperately I needed a getaway. And so I went. It was really nice.
I am an individual,
I matter as an individual,
and, I can have a life too.