How To Deal With Stress & Burnout 

When you’re providing around-the-clock care for a person with ALS, stress and burnout are to be expected. When added to the stress of everyday life, work, and family, caregiving can be overwhelming. Luckily, there are a number of strategies and techniques that you can use to help manage your stress and communicate your needs. Not to mention, we can help connect you with a supportive community of ALS caregivers and patients that can be a helpful sounding board and help you solve problems. 

Above all else, ALS caregivers must practice self-care. Practicing self-care simply means taking care of yourself, though that is much easier said than done. Caregivers can’t always get adequate personal time, which is needed to rest, recuperate, and prepare to take on another day. Foregoing self-care often leads to burnout, which can impair your ability to provide adequate care for a loved one. 

Strategies for Self-Care 

These self-care strategies can help you manage your stress and emotional well-being. Just remember, if you find yourself overwhelmed, you should talk to a healthcare professional. If you need help finding a counselor or social worker, please contact your local ALS Association care team. 

• Take alone time. Whether it’s a few hours to read a book or a 20-minute walk around the block, you should take a little time every week to spend time alone. Pencil your alone time in on the calendar, and treat it like any other appointment. 

• Make your needs known. It’s important to not forgo your own needs in order to provide care. Create time to do the activities that are important to you, like church, meditation, or yoga, and communicate your schedule to the person you are providing care for. 

• Seek out a support network. Support from family, friends, and your community is essential while providing care for a person living with ALS. Even if it just means calling up a friend to chat for a few minutes, seek out support from the people that care about you. If you feel that a support group would be helpful, you can find one in your area here. 

• Ask for help. If you need a break, ask for help from loved ones and friends. Likely, they’ll be more than willing to pitch in. If you’re struggling to find someone, however, we have a Care Connection program that involves developing a network of volunteers from your community that can assist a patient with ALS with day-to-day needs while you take a few hours to relax. contact us to find a Care Connection program in your area. 

• Watch for depression. Depression is the most common healthcare condition reported by family caregivers, and it can strike without warning. Be aware of the early signs of depression and see your healthcare professional if you think you are becoming depressed. Remember, you do not have to live with depression, and you do not have to cope with depression alone. 

• Value yourself. Caregivers do amazing work in caring for their loved ones. Recognize the important and good job you are doing, and realize how valuable you are. Caregiving is a never-ending job and perfection is an unrealistic goal. Do not allow the normal feelings of guilt and anger keep you from seeing the value in your daily caregiving. 

• Manage your stress. Caregivers can strengthen their coping and stress management skills by communicating their feelings and needs, setting limits, and making decisions to do things for themselves. Identify one or two people with whom you can speak freely about your needs and feelings. Professional counseling can be very beneficial, as can physical exercise, creative activities, humor, and social/family events. 

• Educate yourself. Knowledge is empowering. Learn as much about ALS and caregiving as you can. The more you know, the more prepared you will be in providing care and support. Ask friends and relatives to help gather information and resources, and reach out to us if you need help finding information. Once you have educated yourself, you can become an advocate for your loved one and for yourself. 

• Remember that you are more than a caregiver. When they become a caregiver, some people lose touch with the relationships they had with their loved ones before the illness. To counteract this, identify ways to keep your relationships and family roles alive, like staying up to date with family events and news and connecting with friends and neighbors. Making the effort to retain the relationship you have had with your loved one outside of your role as caregiver will help you cope with the challenges of family caregiving. 

• Talk to other caregivers. Caregivers who share resources and their own personal experiences report less stress and fewer caregiving problems. Building community and support systems, online or in person, with other caregivers is a great way to share solutions to common problems. But most importantly, you can talk with people who understand your experiences first-hand. We host several caregiver support groups, but you can also talk to other caregivers via online forums such as caregiveraction.org and caregiver.com. 

• Utilize assistance programs. ALS can take a massive financial toll, so you should take advantage of local, state, and federal programs that support and assist caregivers. Some states and local agencies provide financial support in the form of vouchers or cash for services and equipment. Military veterans with ALS may be eligible for an allowance to help pay for in-home care, and we frequently offer a general grant program to help with ALS-related expenses. 

• Consider respite care. Many agencies and non-profit organizations offer respite services.

• Know your financial options. Some states offer tax credits and deductions for family caregivers. Employed caregivers may want to apply for unpaid Federal Family and Medical Leave (FMLA).