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It is very important to remember to take care of yourself. Caregiving is hard! Caregivers often feel guilty for taking care of their own needs, but taking time for yourself will allow you to be a better caregiver for your loved one. This is not being selfish. If you become exhausted, develop health issues, or grow resentful, it will not benefit anyone.
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Here are some things you can do for yourself:
- Eat well.
- Get enough sleep.
- Exercise on a regular basis.
- Try stress-reducing activities like yoga, meditation, or going on walks.
- Carve out time for fun and leisure.
- Meet up with friends.
- Plan outings with your loved one.
- Talk about your challenges with close family and friends.
- Attend an ALS caregiver support group.
“Caregiving is a selfless act, but it can also take a heavy toll on you. As a caregiver, you want to support your loved one as much as possible. Part of that support means taking care of yourself, too. Caregiver burnout can lead to emotional and physical problems that, over time, can affect your outlook and your own quality of life.”
- Dr. Terry Heiman-Patterson, ALS neurologist
- Dr. Terry Heiman-Patterson, ALS neurologist
Asking for Help
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The demands of caregiving on top of everyday tasks can feel overwhelming. As your caregiving needs increase, trying to do everything on your own can be difficult. It is important to learn to ask for help when you need it.
Finding the time to take care of yourself may mean scheduling respite care, which is any type of short-term caregiving assistance that provides rest and relief for you. |
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Respite care could mean a few hours out of the house each day or week to exercise, schedule your own appointments, run errands, or go to lunch with a friend. Or it could mean a few days away to simply relax and recharge. Respite care can be provided by professional caregivers, healthcare professionals, family, friends, or volunteers.
It is important to make sure that whoever is caring for your loved one has the skills and training to provide the level of care needed. You will also want to explain important care details so that you feel comfortable leaving. If you hire paid caregivers, you can share our ALS Guide for Paid Caregivers with them. If you feel uncomfortable asking for help or prefer not to coordinate all the details, you can ask a family member or friend to help coordinate caregiving coverage for you. There are online calendars and tools like Lotsa Helping Hands, CaringBridge, and The ALS Association's Care Connection that can make it easier. |
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Finding greater balance and personal time may also mean asking for assistance with chores, meals, or other tasks. People often want to help but don’t know how. Think about ways others might be able to help you and your family. Could you use help with household chores like grocery shopping, yard work, or walking the dog?
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If you are hesitant to schedule caregiving help because you feel guilty, it is important to continue to remind yourself that you are not being selfish. To be a better caregiver, you need and deserve to recharge so you can be in good physical, mental, and emotional health.
If your loved one is resistant to caregivers other than you, it is important to talk about it and explain that you want to help—and that you also need help. If your loved one is still resistant, you can ask the social worker or another professional at your ALS clinic or local ALS organization for advice. They might even be able to speak directly with your loved one to explain how important it is for you to have time to recharge.
If your loved one is resistant to caregivers other than you, it is important to talk about it and explain that you want to help—and that you also need help. If your loved one is still resistant, you can ask the social worker or another professional at your ALS clinic or local ALS organization for advice. They might even be able to speak directly with your loved one to explain how important it is for you to have time to recharge.
Your Mental and Emotional Health
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ALS caregivers often feel overwhelmed and experience a wide range of emotions. Whenever you feel you could use some extra support, try reaching out and connecting with others, whether a family member, close friend, doctor, social worker, counselor, religious or spiritual figure, or fellow ALS caregiver. It can be very helpful to talk with others.
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When your loved one is diagnosed with ALS, it is normal to worry about what will happen to your loved one, your family, your finances, and other aspects of your life. However, if you begin to experience symptoms of depression or anxiety that are affecting your daily life, it is important to discuss these symptoms with a therapist, social worker, doctor, or member of your ALS clinic team or organization.
Your primary care doctor or mental health professional may suggest counseling and/or taking medication that can help ease your symptoms. If you decide to take medication, do so under the guidance of your doctor or mental health professional. It may take some adjusting to find the right medication and dosage that works for you.
Your primary care doctor or mental health professional may suggest counseling and/or taking medication that can help ease your symptoms. If you decide to take medication, do so under the guidance of your doctor or mental health professional. It may take some adjusting to find the right medication and dosage that works for you.
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We encourage you to visit our ALS Mental Health page to learn more about counseling, anxiety, depression, and more. Though the page is written for people living with ALS, much of the information can be applicable to caregivers as well.
“We can only give the best when we are at our best, so please take care of yourself.”
- Dolly, former ALS caregiver
- Dolly, former ALS caregiver
