I have found over the years that caregiving can feel like an incredibly lonely experience. Before Mike got really sick we were social people who enjoyed having people over for a Saturday dinner party or going out with others. Once he got really sick and his mobility was affected social time was cut back. We were more concerned with doctors appointments, medical travel, wound care and keeping our heads above water.
Losing friends during this time was painful, it was hard on Mike and it was hard on me. When I needed people to talk to it seemed like no one was there. I felt like I was completely alone on this trip and isolated from anything that didn't have to do with medical community. It wasn't fair! Why was I alone?
Then I realized something, I really wasn't alone. I felt alone because I had built walls around Mike and I. I was determined to keep him safe at all costs. I was so focused on making sure he was taken care of from a medical standpoint that I had locked us on an island of isolation. Friends wanted to help, but they didn't know how and I wasn't able to communicate what we needed. Sure there were friends that completely backed off because illness makes people uncomfortable and it's easier to stick our heads in the sand rather than face the situation.
Once I realized we were on an island of isolation I started reaching out. I joined a couple of online communities where I found like-minded people in similar situations who got it. They helped me find a route out of isolation and gave me the confidence to reach out to others. Thanks to them and my newfound confidence I was able to reach out.
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