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ALS Registry

Caregiving Tips and Hints

  • Take Care of Yourself
    Caregivers often do not get adequate personal time. It is important to take care of yourself both physically and emotionally. Taking time for yourself is not selfish and will improve your capacity to care for your loved one. Make your needs known and create time to do the things that are important to you personally. Continue relationships and activities that are important to you.
  • Care Connection
    The Care Connection program is simple: it’s a network of volunteers from the community – friends, neighbors, members of community organizations like your church, or other service groups – that provide help for the person with ALS and his or her family, and often give the caregiver a break from their day-to-day responsibilities. Visit http://www.alsa.org/als-care/caregivers/care-connection.html.
  • Ask for Help
    Caregivers may not ask for the help they need to provide care for their loved one and to take care of themselves. Have a "wish list" available when people ask what they can do to help you. Most people want to help, but do not know what to do. Accept help when it is offered.  Recognize the limits of your own endurance and strength and help your loved one accept care from others. A good resource for building a circle of help and care is the Care Connection program.
  • Be Aware of Depression
    Depression can strike anyone and caregivers are especially vulnerable - it is the most common healthcare condition reported by family caregivers. Be aware of the early signs of depression and see your healthcare professional if you think you are becoming depressed. You do not have to live with depression.
  • 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 of 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 for caregivers who are trying to not lose their own sense of self in the role as caregiver. It is appropriate to set limits and expectations with your loved one, family and friends. Physical exercise, creative activities, humor and social/family events are effective strategies for countering caregiver stress.
  • Educate Yourself
    Knowledge is empowering. Get as much information about ALS and caregiving as you can. The more you know, the better prepared you will be in proving care and support. Ask friends and relatives to help gather information and resources. Become an advocate for your loved one and for yourself.
  • Know You Are More Than a Caregiver
    In becoming a caregiver, some people experience a loss of the roles and relationships they had with their loved one before the illness. It is easy to see yourself as more a caregiver than wife/husband/parent or child. Identify ways to keep your personal and family roles and relationships alive. Talk about family events and news about children and grandchildren. Look at family photos together. Change the daily routines periodically like adding candles to the dinner table or putting on your favorite music. Making the effort to retain the relationship you have had with your loved one - aside from your role as caregiver will help you in coping with the multitude of changes family caregiving poses.
  • Talk to Other Caregivers
    Caregivers who share resources and their own personal experiences report less stress and fewer problems. Establish networks and support systems with other caregivers to share solutions to common problems and to talk with people who can understand first-hand what you are experiencing.  Many of our chapters run caregiver support groups.  You can also talk to other caregivers via online forums such as www.thefamilycaregiver.org and www.caregiver.com.
  • Utilize Assistance Programs
    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 Aide and attendance allowance.
    • Many state and community agencies and non-profit organizations - such as The ALS Association and religious groups - offer respite services. Contact your local ALSA chapter to find out about respite programs.
    • Some states offer tax credits and deductions for family caregivers.
    • Employed caregivers may want to apply for unpaid Family and Medical Leave under the Federal program.
    • A list of agencies can be found here: http://www.thefamilycaregiver.org/caregiving_resources/agencies_and_organizations.cfm

This page was updated 02/2011

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Lou Gehrig® used with permission of the Rip Van Winkle Foundation / www.LouGehrig.com