WHO CHANGES THE LIGHT BULBS? LIVING ALONE WITH A CHRONIC ILLNESSCategory: Newsworthy Notes
“I’ve fallen and I can’t get up!” Sound familiar? I usually laugh at this famous line from a commercial that most of us have seen a hundred times. But after my first year living alone with Parkinson’s disease, it became far too easy to relate to! After moving last summer, I faced the exciting but overwhelming task of setting up a new home alone for the first time in 15 years. In my first few months, I fell three times. I had a particularly bad fall while hanging a picture above my kitchen sink. All jokes aside, I had trouble getting up. After that, I promised my family I wouldn’t get on a ladder again. But it made me think about how Parkinson’s, other neurological diseases, and many other chronic conditions impact those of us who don’t have “built-in” caregivers. November is National Family Caregivers Month. While it’s an important time to honor caregivers, isn’t it also a good time for those of us who don’t have them to share how we care for ourselves?
When the Simple Things in Life Aren’t So Simple When I say “care for ourselves,” I don’t even mean the big things (like medical care). I mean all the little things: The things you don’t think twice about when you’re healthy. Like who can help me change light bulbs and hang pictures (remember, I can’t climb ladders)? Who helps to make dinner when I’m too tired to do it? (Admittedly, once in a while I eat popcorn for dinner... that counts as a vegetable, right?) Who can help answer crucial questions like do I snore?! My doctor often asks me this, because sleep issues are common in Parkinson’s. I don’t actually know! To be honest, I’ve learned to let go of a lot of my expectations. When I do cook, I try to accept that I may not get the dishes cleaned and put away the same day. When I see weeds in my yard, I tell myself that they’ll grow unabated for another week, and it’s okay. When I want to paint a small area of my picket fence, I now know that it may take me weeks. I try to be patient. But do these things drive me up the wall? Yes! Before Parkinson’s, I didn’t have to hire someone to hang pictures or paint. Today, I’m dependent on others for many simple tasks.
Coming to Terms With the ‘Help Equation’ When it comes to finding help, I often have to decide among hiring a professional, asking a friend or family member for help, or simply not doing something. If money wasn’t an object, I’d always choose the first option. But I don’t have that luxury, so I ask for help. There are two parts to the equation of asking for help. The first is the “ask,” and the second is the “help.” Even when the ask is really simple, like opening a jar lid, I simply hate acknowledging that I can’t do something myself. Finding the balance between independence and dependence is tough. Often, I have tried and failed things several times before I ever ask for help. But the one thing I have found is that many people are happy to help if you ask them. That brings me to the second part of the equation, which is the “help” itself. For me, this part has been less of a challenge. I am enormously blessed with a community of support, in part because I moved across the street from family. That said, I also moved to a new city and state, so in the past year I’ve had to establish a new network of friends. Luckily, I found a great church community. And I put myself out there: I went to events alone and volunteered to help. Pretty quickly, one or two friends became many. Twice this year, I reached out and asked for help (for someone to help me plant my garden, for example). Both times, people I had never met from the church came to help. I attend the church support group for people with a variety of health conditions. Several of us in the group take turns driving each other to doctor appointments. In addition, I built up my Parkinson’s community — near and far — in part by getting involved with the Parkinson’s Disease Foundation’s (PDF) Women and PD Initiative. Being in touch with a supportive group of women provides incredible emotional support. I got lucky on the first try at finding community, but sometimes it takes many attempts and can seem daunting. Still, I encourage those of you, like me, who lack built-in caregivers to build up your network. By volunteering, getting involved with issues we care about, offering to help neighbors, or using online communities, you can do it.
Find Gratitude … and Befriend the Handyman Yes, living alone isn’t what it was in my twenties. That’s okay. With practice and the help of family and friends, I live a good life. I have an awesome handyman (whom I now consider a friend). I budget so that I can pay someone for routine lawn care or snow removal. I do for others so that I am more comfortable when others do for me. And I practice gratitude. Parkinson’s has taken many things from me, but not my peace of mind. This month, National Family Caregivers Month, I wish the same for all of you. We may live alone and feel alone sometimes, but we aren’t. We’re surrounded by each other, and more often than not, by a community of people who are willing to help. Sometimes, we just need to ask for it. I’m learning to do so. Are you?
- Lisa Cone, Special to Everyday Health - Everydayhealth.com