Finding Order in Chaos: How to Handle Your Role as Caregiver
Today’s post is written by Cameron Von St. James. He’s a husband and daddy, and he’s got some helpful information for you about dealing with the burden of caring for a very ill loved one. Here’s his story:
Cameron Von St. James
Less than four months after my daughter Lily was born, my wife Heather and I were handed the worst news imaginable: Heather had been diagnosed with malignant pleural mesothelioma. A rare cancer directly linked with exposure to asbestos, her illness offered slim chance for survival. During what should have been a happy time celebrating the joys of new parenthood, our lives were thrown into chaos. I became an instant caregiver. Our lives would never be the same.
Caring for someone suffering from a devastating illness requires every ounce of strength you can muster. Whether your loved one suffers from Alzheimer’s, cancer or any other serious illness, your life changes forever in the blink of an eye. I had to learn using a “trial by fire” method, and while there are countless resources to help support cancer patients and their caregivers, none of the material can really prepare you for the fight ahead. Fortunately, Heather overcame the odds and beat her cancer. Seven years later, I’m here to share her story and offer guidance for those facing the challenging role of caregiver.
Over the years, my work with the Mesothelioma Cancer Alliance has afforded me the chance to meet many families facing similar situations. I’m often asked how I handled our struggle and what advice I could give. Over the years, I’ve learned a lot about taking care of my family from fellow caregivers and my own trial-and-error experiences. I now offer you the same advice so that you don’t have to face this challenge alone. Here are five of my most useful tips for providing care to someone suffering from a serious illness. I hope they prove useful to you and your family.
Tip #1: Accept help when it’s offered.
Help comes in a variety of forms. It could be a week of casserole dishes or a help getting all the laundry done. Small acts of kindness build into large sources of relief. You’re going to face a lot of challenges while providing care for your loved ones, so it’s important to reach out to people and accept the help they offer. You’ll feel better knowing that things have been taken care of, and you’ll have a little less on your plate to deal with. (Lynne: If I ever have to do intensive caregiving again, I will ask my family or friends to take over long enough for me to go to a movie, get a massage, or just take a nap. I didn’t do that when Bill had hip replacement surgery and I paid the price, because I’m a worrier. I ended up with my own cardiologist, for a time. The heart doc said a husband’s health is a very common cause of heart problems in women. Common! Word of warning, ladies.)
Tip #2: Maintain your own health.
Because you’ll be so focused on caring for your loved one, you might neglect your own well-being. Don’t fall into this trap. You need to maintain your own health in order to stay sharp and focused. I found that replacing sleep with food sometimes worked to maintain my energy levels, but I couldn’t do it for more than a few days. At some point, your body will succumb to exhaustion if you don’t give it the right nutrients and rest. Take a walk or go for a quick jog around the neighborhood. Keeping your body well-nourished and fit will increase your energy and reduce your stress. Both will help you become a more effective caregiver. (Lynne: Nawp, didn’t do this either. But next time, I swear! If there is a next time, and I hope there isn’t.)
Tip #3: Learn everything and stay informed .
Knowledge is definitely power in a situation like this. Learn everything you can about your loved one’s illness, its side effects and possible treatments. Seek second, third and sometimes fourth opinions. If you have questions, ask your doctor for full explanations. I found it useful to take a notepad with me to Heather’s appointments so that I could jot down notes and additional questions to research later. Joining local support groups will help you establish connections with fellow caregivers, and you can exchange stories and ideas. You may also want to spend some time online using sites like this one and others dedicated to caregiving resources. (Lynne: but Cameron, I fear a person can get overloaded and anxious after gathering so much information. Any tips for that?)
Tip #4: Get organized.
Over the course of your loved one’s treatment, you may receive dozens of prescriptions, appointment cards and other documents. You’ll also have to keep up with appointment times and everyday life. Staying organized will help you manage the burden of keeping up with everything. Use a good calendar or your smartphone, tablet or computer to keep track of everything. You’ll handle everyday tasks and unexpected occurrences much better if you stay organized.
Tip #5: Make a list of priorities.
Everyday life continues despite the devastating blow of a serious illness. You still need to pay your bills and take the dog for a walk. While you might be tempted to shove everyday tasks to the back of your mind, you’ll need to maintain a sense of normalcy during this time. Make a list of priorities, and enlist the help of friends and family when necessary. You can eliminate extra challenges by focusing on the most important tasks first and taking everything one step at a time.
Heather, Lily, and Cameron
Cameron Von St. James is the husband of mesothelioma survivor advocate Heather Von St. James, who was diagnosed in 2005 at the age of 36. A seven year survivor of this rare cancer, Heather and Cameron now work with the Mesothelioma Cancer Alliance to bring awareness to this often neglected disease. They hope that by sharing their story, they can bring hope and inspiration to people facing any sort of illness or disability, and the caregivers who support them. Heather and Cameron live in Roseville, MN with their daughter Lily, who is now 7.
