As a family caregiver, you play the most important role in the care of your loved one with ALS. Your experience will surely be physically and emotionally demanding. It will require you to learn new skills and will draw out courage and strength in you that you may not have known you possess.
GIVE THE GIFT
Give the gift of accepting help – often others want nothing more than to help you and your loved one during this difficult time. When others ask what they can do to help, take them up on their offer! Scheduling a time for a friend or family member to provide respite care gives them a chance to help, and provide support to your loved one, while giving you space for self-care.
“One of the most difficult things for caregivers to do is take care of themselves – but that is the most important thing!”
– Shelby, Caregiver of Loved One with ALS
USE RESPITE FOR YOURSELF
When your loved one has respite care, use that time for yourself. The grocery shopping, housework, and other tasks will always be there. Take those precious moments to yourself to relax, recharge and rejuvenate yourself. When you are energized and at your best, you are able to be fully present and available in your caregiver role.
SELF-CARE
During this difficult journey, it is important to make time to take care of yourself. This may seem impossible at times, when you are so busy taking care of your loved one. However, if you are not well, you cannot help your loved one to be well.
It’s like being on an airplane when there’s an emergency – you are always instructed to secure your own oxygen mask first, before helping your loved one put theirs on. The same is true in life, especially for caregivers. You must care for yourself before caring for someone else. As difficult as this principle may be to follow at times, there are small, simple things you can do every day to ensure you are at your best.
“Have patience.”- Darlene, Caregiver of Loved One with ALS
Here are a few ideas:
- Take 5 deep breaths.
- Go for a 10-minute walk.
- Talk to a friend.
- Listen to relaxing music in the car.
- Take a nap.
- Eat a healthy meal.
- Laugh!
- Step outdoors for a breath of fresh air.
- Read
- Write in a journal.
- Pray.
- Take a bath.
- Have a cup of coffee or tea.
You can use the ideas above, or add your own!
“Find ways to take care of yourself to help manage the fatigue and stress that comes with this diagnosis and care. Find and use as many resources as you can. Stay connected with people. Don’t be ashamed to ask for help.”
– Sharon, Caregiver of Loved One with ALS
SEEKING SUPPORT
During this difficult journey, it is important to seek support, and use it often. Below are some resources to get you started.
“Find a support group – shared information is priceless from others who know, do it and live it. Don’t be afraid to seek help.”
– Jennifer, Caregiver of Spouse with ALS
RESOURCES FOR CAREGIVERS
Online Resources:
ALSA Caregiver’s Bill of Rights
http://www.alsa.org/als-care/resources/publications-videos/factsheets/caregivers-bill-of-rights.html
ALSA Family Caregiving Factsheet
http://www.alsa.org/als-care/resources/publications-videos/factsheets/fyi-respite.html
ALS Chat
“ALS Chat” by ALS forums is a volunteer resource providing an internet vehicle for information, discussion, and support for anyone affected by ALS. Both pALS and caregivers can register for free.
Lots a Helping Hands
Creating a support community via an on-line resource.
Department of Veterans Affairs Caregiver Support
This website provides resources for caregivers and Veterans, including resources available to caregivers, and videos and stories of caregivers of Veterans. The website has a zip code look up feature allowing caregivers and Veterans to find the name and contact information of the closest Caregiver Support Coordinator. There is also a toll free number: 1-855-260-3274.
Information on the Family and Medical Leave Act (FMLA)
https://www.dol.gov/agencies/whd/fmla
FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons
Caregiving & Medicare
“A Guide for Families & Friends”
This website offers resources, stories, and newsletters about caring for someone with Medicare.
Support a Loved One at the Doctor: Quick Tips
A quick checklist of things to consider when taking a loved one to the doctor.
Caregivers and Exercise – Take Time for Yourself
https://go4life.nia.nih.gov/tip-sheets/caregivers-and-exercise-take-time-yourself
Caregiver Stress Fact Sheet
http://www.womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.html
In-Person:
ALS Association Local Chapter www.alsa.org
The ALS Association website provides links to all of the regional chapters’ websites, where you can find more information on local support groups and events, and find contact information for local representatives.
ALS of Michigan
ALS of Michigan hosts free, open support groups especially for caregivers of people with ALS. To be added to a support group reminder mailing list please call (800) 882-5764.
Publications:
- ALS Association (ALSA), For Caregivers
http://www.alsa.org/als-care/caregivers/for-caregivers.html
This webpage provides a link to the brochure, Caregiving…When a Loved One Has ALS, including a brief list of resources for caregivers of people with ALS. Click the menu options on the left side of the page to access information on respite care, coping with burnout, and caregiving tips and hints.
- Muscular Dystrophy Association (MDA), ALS Caregiver’s Guide
http://mda.org/publications/mda-als-caregivers-guide
This guide provides comprehensive instructions for caregivers who care for a loved one with ALS. It helps caregivers understand the progression of the disease, and shares quotes and advice from other caregivers. It can be accessed online, and downloaded as a PDF file.
“The stress and demands as the caregiver can be overwhelming. Please be cognizant of this and use resources and seek help as needed.”
– Brian Coltman, Senior Rehab Engineer, ALS Clinic Seating and Mobility Specialist
