Caregivers & Loved Ones Caring for Someone With ALS By Colleen Doherty, MD Colleen Doherty, MD Colleen Doherty, MD, is a board-certified internist living with multiple sclerosis. Learn about our editorial process Updated on March 11, 2020 Learn more</a>." data-inline-tooltip="true"> Medically reviewed Verywell Health articles are reviewed by board-certified physicians and healthcare professionals. Medical Reviewers confirm the content is thorough and accurate, reflecting the latest evidence-based research. Content is reviewed before publication and upon substantial updates. Learn more. by Anita C. Chandrasekaran, MD, MPH Medically reviewed by Anita C. Chandrasekaran, MD, MPH LinkedIn Anita Chandrasekaran, MD, MPH, is board-certified in internal medicine and rheumatology and currently works as a rheumatologist at Hartford Healthcare Medical Group in Connecticut. Learn about our Medical Review Board Print Regardless of whether you are a spouse, child, friend, or formal caregiver, taking care of a person with amyotrophic lateral sclerosis (ALS) is challenging on so many levels. However, with the right mindset, support from others, and proper assistive devices, caring for someone with ALS can be fulfilling. Here are a few tips to keep in mind as you navigate through your caregiving journey. funky-data / Getty Images Empower Yourself With Knowledge A little bit of knowledge goes a long way when it comes to caring for someone with ALS. By understanding why the person you are caring for cannot move well, has muscle twitches and spasms, experiences pain and excessive drooling, and later has difficulty feeding and breathing, you can be a more proactive and anticipatory caregiver. In other words, with a basic knowledge of ALS, you will be able to better predict the problems your loved one, family member, friend, or partner has and can prepare well for those transitions—a means of creating the smoothest possible caregiving process. Seek Support The physical demands of caring for someone with ALS are vast and range from assistance with activities of daily living like bathing, using the bathroom, eating, and dressing to managing mobility aids and eventually feeding devices and breathing machines, first a CPAP and then a ventilator. In addition, the caregiver of a person with ALS often has to manage the household as well, especially if he or she is a spouse or family member. This means cleaning, doing laundry, paying bills, making healthcare provider appointments, and communicating with other family members. ALS Healthcare Team Seeking support from others is absolutely essential. You should start with your loved one's ALS healthcare team, which includes a: Neurologist Physical therapist Speech and swallow therapist Nutritionist Respiratory therapist This team of healthcare professionals can not only assist you with the caregiving process but also help ease the symptoms of your loved one's ALS. Also, through your loved one's ALS healthcare team, social workers can also provide you with information on caregiving support groups throughout your community, as well as palliative care resources at the time of diagnosis, and a hospice referral in the terminal phase of ALS. Assistive Devices Muscle weakness is a primary symptom of ALS, and with that comes problems walking, eating, using the bathroom, bathing, and keeping the head upright (due to weak neck muscles). Assistive devices like wheelchairs, bathtub lifts, raised toilet seats, removable headrests, and special eating utensils can improve the functioning and quality of life for a person with ALS. This, in turn, can improve the quality of life of the caregiver. Other useful devices for caring for a person with ALS include special mattresses that can help prevent skin breakdown and muscle and joint pain. Finally, there are electronic assistive devices like a speaking device that can be adapted for hand or eye use to allow for communication and engagement. Be sure to talk with your loved one's ALS healthcare team about how to go about obtaining these devices. Respite Care As a caregiver, you need to care for your mind and body in order to best care for someone else's. In other words, you need breaks, and this is where respite care comes into play. Respite care may mean a few hours off to enjoy a movie, take a nap, relish in a nature walk, or go out to dinner or coffee with a friend. It may also mean taking a weekend vacation, so you can really take time off to relax and do something special for yourself. When seeking out respite care, there are a few different options. For instance, you can look into home health agencies that provide trained caregivers or even a residence, like a long-term care facility, that employs healthcare professionals on-site. Lastly, you can opt to simply ask a friend or volunteer agency to provide respite care for a few hours. Community It's important to remember that those within your community are often aching to help, but do not necessarily know how. It may be best for you to write out specific tasks that you need assistance with and then email them out to friends, family members, or neighbors. Be candid too—if you find that cooking and cleaning is interfering with your caregiving, ask those within your community to help with meals or donate money for a house cleaning service. Watch for Symptoms of Depression If you are caring for someone with ALS, it's common to feel a range of emotions including worry, fear, frustration, discomfort, and/or even anger. Many caregivers also feel guilt like they should or could be doing a better job or feelings of uncertainty about the future. Sometimes these emotions can be so strong that they begin to affect the caregiver's quality of life. Some caregivers even become depressed. This is why it's important to be knowledgeable about the early symptoms of depression and see your healthcare provider if you are experiencing one or more of them. Symptoms of depression are persistent, lasting nearly every day for two weeks, and may include: Feeling sad or downExperiencing a loss of interest in activities you once enjoyedHaving sleeping difficulties (for example, sleeping too much or having trouble falling asleep)Having a change in appetiteFeeling guilty or hopeless The good news is that depression can be treated, either with a combination of medication and talk therapy, or one of these treatments alone. A Word From Verywell Caring for a person with ALS is difficult and energy-consuming, both physically and mentally. But while there will be many trying bumps along the way, be assured there will also be uplifting, soulful moments. In the end, your care, your attention, and your presence are enough. So be kind to yourself and remember to be mindful of your own needs. Was this page helpful? Thanks for your feedback! Sign up for our Health Tip of the Day newsletter, and receive daily tips that will help you live your healthiest life. Sign Up You're in! Thank you, {{form.email}}, for signing up. There was an error. Please try again. What are your concerns? Other Inaccurate Hard to Understand Submit 0 Sources Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Galvin M et al. 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