You can be a caregiver and also care for yourself.
There’s a look that comes over caregivers that allows us to spot one another – it’s the look of exhaustion. A dullness in our eyes and usually a sallowness in our skin. Being a caregiver is emotionally and physical exhausting.
I remember when I first entered the world of being a mom to a child with Intellectual Disabilities. I started meeting other moms who were further along on the journey which is when I noticed the common characteristics. There’s also an edginess about us. Every time our phone rings and we see it’s the school calling we just know it’s going to be a problem that will require our immediate attention.
Fast forward ten years to when I got remarried to an incredible man. I was positively glowing with the existence of a new romance. And then, four weeks after our wedding, he was diagnosed with Primary Progressive Multiple Sclerosis. While I didn’t necessarily know what to expect I remembered growing up watching my mom’s best friend care for her husband with MS. I recalled how she looked and more so how she behaved. It was if she kept her emotions contained. There was laughter and smiles but never exuberance. Mostly I remember how she always looked tired.
With Primary Progressive MS things start getting bad quickly. There are no drugs and no remissions, it just keeps progressing rapidly. I watched Greg go from walking at our wedding to being in a wheelchair full time within a few years. And as I maintained a strong, confident appearance for him, inside I was grieving and freaking out. I saw the life I had dreamed about slipping away and morphing into a life of caregiving for my son and my husband.
It was difficult for friends to understand how I felt or how to help me. I watched our lives as a couple become more isolated. There were friend’s homes we could no longer visit because there were stairs leading in or their bathroom wasn’t handicap accessible. Even restaurants we frequented turned out to not be accessible. Nothing gives me more pleasure than a romantic dinner at the beach watching the sunset but a 500lb powerchair gets stuck in the sand, as we learned very quickly when we needed to call EMTs to rescue him so that too became a distant memory.
Some might consider it selfish, but I realized I needed to save myself. I had no intention of leaving Greg and I certainly would never abandon my son, but I knew that I couldn’t let my life slip away. First of all, I needed to be strong physically, mentally, and emotionally in order to care for both of these men for the long haul. But even more so I wanted a life of happiness and adventure. And I had a right to it.
At first it was small things, going out to dinner with a friend, taking a hike, hanging out at the beach for a few hours or going to an exercise class at the Y. I came to accept the fact that some of those adventures couldn’t include Greg. I started taking day trips and even multi-day trips with girlfriends or solo. I needed this to recharge. I also travel a great deal for speaking engagements and to work with clients. Not only do I love doing this, but I have to do it. I need to in order to financially support my family. But to do this required help from my family. My husband needs help getting into bed at night and my kids do it while I’m gone. Greg and my son have become an incredible team – the dynamic duo.
I made sure at a very young age that my son knew how to take care of himself. He can make his own meals with a bit of oversight, do the dishes, take out the garbage, do the laundry, mow the lawn and shovel the snow in the winter. He can also grocery shop. What he can’t do is drive. Fortunately, we have a minivan that has hand controls and Greg’s powerchair is the driver’s seat so he’s able to do the driving.
This isn’t to say he and I don’t do things together as well. We take trips together, we still go to the beach (but stay on the walkway rather than the sand) and go out to dinner at handicap accessible restaurants.
I know I’m one of the lucky ones. There are women who are caregiving for people with profound disabilities. But even then, it’s possible to find small moments of escape by creating a plan and asking for help. Too often we feel like we’re doing it alone. Even one hour a few times a week to escape to a coffee shop, take a walk at the beach or even read a book in your car can dramatically help. But it requires you to be willing to take some time for yourself. I repeat – this isn’t selfish! You deserve and must care for yourself as well.
Do you feel guilty doing something for you? Do you think it’s selfish to be able to go out and enjoy some activity when you’re loved one isn’t able to?
First it starts with the mindset that you deserve happiness.
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