Make an Emergency Bag
When you deal with a severe chronic condition, it’s not a question of if you’ll go to the ER/hospital so much as it is when. Make things a tiny bit less stressful by keeping an emergency bag packed and ready to go at all times. Ours includes clean socks and undergarments, an extra t-shirt and comfy pants, and things to keep us entertained (specifically, a 3DS and some coloring pages as well as thank you cards and stickers to hand out to awesome nurses and medical staff).
It’s a good idea to add things like a list of current medications and dosages (because they always ask for them), snacks, and bottles of water. Travel sized personal care items can also come in handy if you end up staying overnight with your loved one. Keep your bag by the door or in the car so it’s ready to go whenever you are.
Don’t Be Silent
One of the most frustrating parts of dealing with a loved one’s chronic illness is actually dealing with other people. No one is going to understand what you and your loved one are going through unless they’ve been there themselves, and trying to help them understand can be an exhausting task. As a result, the first instinct of many who deal with chronic illness is to shut up and deal with it because they fear burdening others. This leads to hiding their condition and largely suffering alone while everyone wonders where they’ve gone.
Try to stay in touch with family and friends. Use social media to make regular updates, or have a trusted friend do it for you if it’s just too much to handle. Good things to talk about include doctor’s visits, hospital stays, diagnoses, and general information about the disease as well as updates on pain and energy levels and mental health. It may seem like oversharing, but what you’re actually doing is educating -- and education helps reduce stigma around chronic illness, helping you and others like you. I’ve found that the more open my husband and I are about his Crohn’s Disease, the more support we get from those around us.
A great tool to share is the Spoon Theory, which is the best illustration I’ve ever found for describing what it’s like to deal with chronic illness. In a nutshell, spoons stand in as a unit of measurement for a person’s energy and ability to do everyday tasks. People with chronic conditions have fewer spoons to work with than those who are well, and it takes them longer to recharge. Our friends and family who have become familiar with this measuring system now understand what my husband means when he says he is “low on spoons” and can’t make it to an event -- or out of bed.
It’s also important to find people who do understand what you’re going through, and that’s where support groups come in. Depending on which particular disease you’re dealing with and what part of the country you’re in, there’s a good chance there is a group for it near you -- for your loved one, for you as a caretaker, or both. Ask your doctor or specialist if they know of anything, or start with an internet search. Some of these groups are community run, but many are run by local healthcare providers and therapists or even national organizations.
Get Some Help
Knowing that people want to help is wonderful, but what can they actually help you with? I’ve had offers to drive my husband to doctor appointments, but as his caregiver I have to be there for most of them anyway, so that’s not really helpful. Plenty of well-meaning folks have sent me tips on getting more writing work so I can make more money to alleviate our financial burden, but they don’t realize that taking those jobs means I won’t have as much time to take care of my spouse. In the past, we’d be so frustrated by our situation that when people asked what they could do, the only thing we could think to ask for was money -- and that just felt gross.
Instead, we’ve found it helpful to make a list of little things our friends and family can do to alleviate some of our stress. Bottles of ginger ale, funny cards, stopping by to visit, mowing the lawn, delivering meals to the hospital, pet therapy -- whatever will make your and your loved one’s life a little easier and brighter should go on your list. Then, when people ask what they can do to help, share your list with them.
There are other helpful services you can employ, as well. Recently, while helping my husband recover from a surgery related to his chronic condition, I realized two things: one, there was no food in the house; and two, I didn’t have the time or energy to go shopping. “Gee,” I thought to myself, “wouldn’t it be nice if I could just get groceries delivered?” Then I remembered that it’s 2016 and grocery services like Peapod exist, so I downloaded the app, ordered food for the week, and had it delivered the next day -- all while dosing out medications and making jell-o (I even had more jell-o delivered). If you don’t have a grocery service available to you, enlist a trusted friend or family member to do your shopping. Make a list and a budget and send them off to the store in your stead.
Take Time for YOU
You know the old adage about putting on your own air mask before you help someone else with theirs? Well, it holds true: If you don’t take care of yourself, you eventually won’t be able to take care of your loved one. In other words, the Spoon Theory applies to caregivers, too.
I’ve found that taking time for tea and meditation, to read a book, go on a walk, or spend some time with friends can make a huge difference in my perspective and energy levels. Seeing a therapist can also help, and getting sleep is super important, so do your best to get as much as you can.
Taking care of your physical and emotional needs means you'll have more energy and patience to help your loved one when they're really struggling. Check out our self care articles for more tips to help you cope.
photos by Kristina Litvjak, Erol Ahmed, Scott Webb, Leonie Wise, Nomao Saeki