Caregiving is hard!
Did I just state the obvious? I recently saw yet another article about caregivers, caregiver stress, caregiver burn out and the importance of self-care. You know, we’ve all seen them. If you’re like me you may even roll your eyes when you think there are some people that need to be told this, because in the world of bleeding disorders it’s a way of life. It’s just something we do, we don’t get to choose.
When I first started writing for “Infusing Love” there were only a couple of us blogging, my son was a teen and I was wondering how I would still have anything to say in a few short years because we’d already gotten past self-infusions, going to HTC visits alone and I hadn’t called for his supplies since he an adolescent. 
I got through finding out he had hemophilia by with connecting with others, mostly because I was blindsided. I didn’t know I was a carrier. I didn’t know what else to do. Since it was our normal and I just did things that people who had been through it suggested.
“Watch him walk and move.” Seriously. That was the first word of advice I got. The next one was “know your child.” Okay then.
From there it was genetics 101, physical therapy then on to infusions. Wait, what? Yes, I did learn to home infuse when he was 14 months old. By age two we were doing it with no one to hold him. That’s just our story, each of us comes from a different time and place.
Doctors? Emergency rooms? Staying home to “watch” him? But I work full time, how can that be? Family Medical Leave wasn’t a thing until he was already in elementary school. When he was three, he broke his arm, that required visits to the treatment center every Friday for almost three months. Over an hour each way, in the winter of course. I managed to keep my job, but it required a lot of groveling and juggling.
So yes caregiver stress presented itself right away. Did I mention I was a single parent?
It also taught me a lot about compassion, patience and persistence. I learned to step back and sometimes let him hurt. I learned that once he got a little older, I didn’t have to always answer the pager (no cell phones in those days). Even the time, I was working two jobs, he had called several times and when I eventually answered the message was “FINE. I’ll find my own ride to the ER.”
Something else happened in all the years of caring and fixing, self-care happened. Sometimes it was shutting my door and reading, sometimes it was letting him go places without me, sometimes it was me going away. Mostly it was helping him to learn to be accountable for himself. Not every challenge we faced was related to hemophilia, some of them are the same ones everyone faces raising a child.
Now I’m on the other end. I’m caring for my 91-year-old mother. I really want to call her “my stubborn old Yankee mom”. With the help of my son, the one who first taught me caregiving, we get through the challenges.
Let me define my days. I get up by 5:00 to start the fire in the woodstove. While I’m waiting for the fire to catch, I put the kettle on for my tea, set up her breakfast, empty trash, let the dogs out, do dishes, general house running stuff. She gets up between 7:00 and 7:30 then it’s time to get her breakfast, feed the dogs and work, because I’m working from home while I’m doing this.
That’s the first three hours of my day and it’s only 8 a.m. After that? Some days involve calls to doctors, shopping for her, taking her to appointments, visits by the physical and occupational therapists, laundry, showers and all the things we take for granted that she can no longer do herself.
I am fortunate to have a son that is willing to be here for his grandmother. It means I have the ability to practice self-care without as much worry. We are here so she can stay in her home, but it requires making sacrifices. We rarely go away at the same time, it takes two of us to get her to her appointments and we both shop for her at different times. It also means that if I need to get away, I can. Just like when my son was growing up and he would go to Paul Newman’s camp for kids with disabilities. I knew there was  at least a week each year when I could go off on my own. He’s here for her if I want or need to travel. The difference is, she’s not going to grow up and learn to take care of things, this is how it will continue be and most likely she will start requiring more care.
Don’t ever question if you’re under stress just because it’s your normal. Don’t hesitate to do the things you like. It feels icky at first but it’s essential for you, as well as whoever you’re caring for. If you’re caring for your child there will come a day when they will care for someone else, because after all, it’s their normal too. If, like me, it’s an aging parent or even a spouse that “me” time is even more important because they may never be able to do things on their own so you can’t look forward to the time they won’t need you.
Always, always remember; caregiving is hard.
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.
