If you look up National Caregiver’s month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President Obama, and if you keep scrolling you’ll find more article and sites that are more disease specific. I gave up before I got to one relating to rare diseases or caring for your child. Why do you think that is?
Here’s my experience. I am part of the sandwich generation which means I not only raised a child with a chronic illness, it means I also care for an aging parent. Those of us that live with chronic illness in our kids are familiar with the exhausting task of keeping them well, making sure they are treated fairly in school, getting them to their doctor visits and teaching them to manage their own disorder. Add the task of keeping your parent safe and healthy and it can get overwhelming. Sometimes the parent can be much more challenging because they believe they can still do things that they can’t safely. Not long ago we had to tell my mom that we couldn’t let her drive out of our little town anymore because it was too dangerous for her and for other people on the road. Before that we had to get her to wear hearing aids. We have to keep her from going out to the gardens or down to the basement without telling us because at 89 she’s not very nimble and all it would take is one fall to change everything.
I am very fortunate that as an adult, my son Max has been able to take over the role of caring for mom. It’s not ideal because there are times when he would like to move on. He decided that for all the years she looked after him that she deserves it, so he made the commitment to be here as long as she needs him. I know that if he and I weren’t living in her house that she wouldn’t be able to stay in her home. She is able to make decisions for herself; she’s simply not physically capable of caring for the home, shopping for her groceries, tending her gardens or going to her appointments and meetings. Thus, my son the caregivee has become the caregiver.
Recently I had a surgery which involved an overnight stay in the hospital and subsequent factor treatments for my own mild hemophilia. Who was my caregiver? My son. He stayed at the hospital until I was out of surgery and settled in my room, then he went home and did what he needed to do for my mom and came back the next day to get me. The surgery wasn’t done at the local hospital. It was done where our HTC is, so it’s not like it was 15 minutes away; it meant driving an hour and a half each way. His thought was that for years I drove him back and forth, I spent nights in hospital rooms and waiting through surgeries and doing his treatments and that this is his time to give back. When I got home I needed follow up factor treatments for several days, there was never a question of it getting done, he was there for me. Before the surgery he had gone out and gotten me special pillow so I could be more comfortable after I got home. After he brought me home he went and got me soup because I couldn’t swallow, he checked on me regularly, and he made sure I wasn’t in pain.
This is a story of coming full circle. Caregiving has changed over the years as we work towards giving our kids with chronic illness more independence and quality of life. Relying on our healthcare system can be challenging. I have found that It’s best to rely on each other. This is why we have to be careful to educate our kids on self-care and giving back. I am grateful for the people in our lives that have given us the skills to be loving and supportive.
I had a friend recently tell me, “it really does take a village, thank you for being one of my village people.” I want to thank all my village people for helping us learn to be caregivers, not just caregivers but great caregivers. We officially recognize caregivers in November. All year long we should remember to thank someone who has helped us. We should be grateful for the opportunity to be a caregiver.
Maryann and her adult son, Max, live in New Hampshire.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provider.