Patients, what advice or tips do you have for caregivers out there – professional or otherwise!
This is a good topic. It is so good that it is a repeat of one I did last year. So, I will pretty much repeat what I said in that post. Also, keep in mind that I am focusing on caregiving to someone with IBD.
First, and this is one of the most important things a caregiver needs to remember, is that the person they are taking care of has the disease, not the caregiver. The patient is most likely scared because they have an incurable illness. What they need most of all is love, affection and some sympathy. They are probably in constant pain and they might not ever feel “normal” again. It is your job to help them get back to normal as best as THEY can.
Second, listen to your patient. Don’t ever assume you know what they are going through or what they are feeling. If they say they have pain, believe them. Sometimes they may seem alright, but mos of the time there is pain within their gut. Think about how you feel when you have a sunburn. Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched.
Next, don’t try to force feed them. An appetite is a tricky thing for someone with IBD. One day they can be nauseous and not want to eat. Other days, they will want to pig out. Some of this is caused by the disease, some of it caused by the meds. Also, they are going to find that there are a bunch of foods that don’t agree with them. If they want to try a specific diet, let them. If they say they can’t eat a certain food….believe them. Don’t try to make them eat something because it is healthy. Not everything healthy is good for someone with IBD.
Your patient is not going to like the medications that they are on. If they are taking Prednisone, there is a good chance that they will get some depression. You should know right now, they will gain weight. Their face will swell up and this is called a “Moon Face”. Just let them know that it is normal, they are still beautiful and handsome, and that it is temporary. One day they will come off the steroid and their weight will come down. Now, sometimes if they are in a flare, they might lose weight. Try to give them some supplemental foods like Ensure to help maintain their weight. Don’t ever mention how skinny they look. They know they are losing weight and don’t want to be reminded of it.
My last advice I can give is never ever ever say they are sick. They have a chronic illness that will be with them their whole life. They know how they feel and they want to try to look and act normal. To them, it is something that is now part of their life. To them, being sick is like catching a cold or a flu. Having IBD doesn’t mean your life ends…so why should they think they are sick. Treat them as you would treat anyone else. Play with them. Talk with them. Give them hugs and kisses. Let them know that their life will move along and that they have nothing to be ashamed of.
And if ever you have a question, don’t be afraid to ask. Ask a doctor. Ask the person you are giving care to. You can ask me. There is also a huge community or people with their condition online. Turn on your computer and look for them. They will accept you and your patient into their family with no questions asked.
You are now about to embark on a great journey. Enjoy the ride.