The prompt for day 18 of National Health Blog Post Month is to share some advice for someone who is caring for someone with either ulcerative colitis or crohns disease. Having watched my parents be by my side 24/7 for the past 12 years, I do have some words of wisdom to the other caretakers out there. Caretakers are often the forgotten victims in this whole medical world where the focus is understandably on the patient. I hope I never know what it is like to care for someone with a chronic illness and especially one as potentially devastating as ulcerative colitis and chrons disease.
Anytime you are dealing with someone who is chronically ill, I think it is important to remember that guilt usually comes with the territory; so as best you can, try not to add to it. I know things will come out of your mouth when you are frustrated, upset, overwhelmed, etc but try to be mindful and not make the person you are caring for feel badly about their disease and the toll it is taking on you. As with any illness, every patient is different but with Inflammatory Bowel Disease, there are many individuals who simply can’t speak about the details of their illness. Thus, leaving them to feel very isolated especially when their disease is not under control. As a caregiver, just being there can often mean the world to someone. I can’t tell you how many times I have felt so alone because I couldn’t talk about the gory details that my body was going through with anyone outside of my family. It was such an awful feeling but knowing that my parents were always there meant the world to me. I remember there were so many times when I would lie in my dad’s arms and just knowing he was there was enough to get me through the night.
Another piece of advice I would give to any type of caregiver is to make sure you take care of yourself. Remember, you aren’t good to anyone else if you don’t take care of YOU. Find something that gets you out of yourself and your head a little bit each day if possible. Whether it is exercising, reading, going shopping, going to the dog park, meeting a friend for a quick coffee….just something to take your mind off of the situation you are in. Try to get at least one distraction in per day and focus as best you can on each individual day as it comes. If you start projecting out months in advance, things will seem way more insurmountable than they actually are. It helps to break things up and ask what needs to be done for today instead of allowing your mind to wander about all of the potential things that you may need to deal with.
Inflammatory Bowel Disease (ulcerative colitis and chrons disease) are really difficult disease for both the patient and the caregiver. The unpredictability affects an entire family, not just the patient. My illness impacted the lives of my parents and brother to an extremely large degree. They became afraid to make plans and commit to anything because I always developed flare ups or would have some type of issue at the drop of a hat. Being a caregiver to someone with IBD is enormously stressful. I have watched my parents go through it for far too long and I honestly don’t know how they are still so incredibly strong. I think the main reason is because we all stuck together throughout everything. We dealt with it all as a family. When my mom was weak, my dad picked up the slack. When my dad needed a break, my mom took over. We all stuck together like glue and that is how we have made it out alive. Be open with the people that love you. Talk about how you are handling the situation. Speak up if you need a break. Talk it out with a therapist if you feel you need to. It is very important as a caregiver to have an outlet for your emotions.
I want to thank all of the amazing caregivers out there. Luckily, I do not know what you all have to deal with firsthand but I can only imagine and I commend all of you for being there for your loved ones who suffer from any type of disease.
Mom and Dad, from my heart to yours…thank you < 3