ALS is not all you need to live I experience the same challenges as other caregivers of people with ALS. With each stage of ALS comes a sense of debilitation, exhaustion and overwhelming drowning. But, these are only a few pieces of life. We have many other lives outside of ALS. It’s important to focus on other aspects of your life, like your children, your education and your friends. We all understand that life will bring us sorrows at some point. But with the support of friends and family, you and the patients in your care can turn it into something sweet. One of the biggest challenges for caregivers is how to make life “normal”. Patients who have difficulty getting used to the changes that come with ALS will always feel discomfort and need caregivers to help ease that discomfort. For visitors who feel a little “uncomfortable,” I suggest developing a “talk checklist” to help smooth the way: 1. talk about the weather; 2. talk about your children; 3. talk about sports; 4. Talk about your job; 5. Talk about the person with ALS; 6. Don’t talk, just watch a movie or something together; 7. Bring a friend/spouse/child with you. Sometimes company without having to say much is the best visit. ALS can cause isolation. You need to reach out to others for the sake of the patients in your care and yourself. While it may be impossible to divide your time into 3 parts, one for yourself, one for your family, and one for your job, I’m afraid, it should be a goal. Balance, is ideal! By taking care of yourself, educating yourself, seeking help, and not letting ALS be all you have to live for, you have the potential to be the best caregiver you can be. Alison Teichgraeber is a Houston writer, mother of two, and supporter of patients with severe disabilities. Her husband, Patrick Teichgraeber, was a Marine Corps major when he developed ALS in 2001. He passed away in September 2004 at the age of 40. TAKE CARE OF YOURSELF 1. Get enough sleep. Find ways to help your patients get a good night’s sleep so you can rest yourself. Lack of sleep can affect your physical and cognitive abilities. When I’m too tired, I can’t even do 3rd grade math! 2, activity exercise. Do some activities when you feel decrepit. A 20-minute walk around the neighborhood can release stress and rejuvenate your spirit. 3, talk. Talk therapy saved my life. Talking to a counselor or pastor can help you deal with all the changes that will affect you. Denying stress will only exacerbate it and lead to more problems. Self-education It is important to learn about all the changes that may be happening in the lives of the patients in your care and in your own life. By educating yourself and learning to understand all things about ALS, medical supplies, insurance and finances, you will become a wise consumer. This will help you prepare in advance for necessary adjustments and the unexpected. Through self-education and learning, I have become wise and calm when caring for my husband. Seek help Get help early. As a caregiver, you may be putting yourself through too much, and there are multiple ways to avoid this. Many people offered me help, and I was reluctant to accept it at first because of “pride,” but eventually, a friend told me, “Let’s eat!” I accepted. Then neighbors and church members brought special dinners for me and the children twice a week. The meals were often so large that they could have fed a small army, enough to feed us for a week. When someone is willing to help you, accept it openly! Let’s say: 1. Ask your friends to mow your lawn: just mow it once a month and your lawn will look level all year round; 2. Ask your friends to stop by and do your laundry when they go to the dry cleaners so they don’t have to make extra trips; 3. Ask your friends to stop by and buy what you need when they go to the grocery store. Ask your friends to bring pictures or other “trinkets” to share with the patients in your care. You can have a little time to yourself when they can be with the patient. Stay ahead of ALS ALS is cruel and unforgiving. By staying ahead of ALS, you have a better chance of being prepared for the unexpected changes in the disease. 1. Be prepared before a person with ALS needs a walker. There is nothing worse than falling and getting hurt. I was away once and my husband fell to the ground and struggled to get up for half an hour. 2. Order a wheelchair before a person with ALS needs to use it. An occasional fall or a cold can suddenly cause a patient to need a wheelchair; 3. Allow time for the patient to adjust to the BiPAP ventilator. My husband was resistant to the ventilator at first, but as he slowly tried it, he gradually accepted it.