What can you do to #ChallengeALS


Respite Care

Being a family caregiver, while a fulfilling role, can consume a great deal of physical, mental and emotional energy. Consequently, respite care is very important because it gives family caregivers of persons with ALS an opportunity to create a plan of care for themselves; something a caregiver often overlooks.

Respite care simply means an interval of rest or relief. Respite care gives you, the family caregiver, an opportunity to take a much-needed break from the daily care that you provide for your loved one. A period of respite may be a few hours or a few days at a time, depending on what is decided between you and the care recipient. There are a number of ways you can spend your "time off" during your respite. Here are just a few examples:

  • Go to the movies
  • Read a book at a nearby park
  • Go on a short vacation
  • Have someone else care for your loved one while you retreat to another part of the house and watch TV, read a book, or take a nap
  • Attend a caregiving support group
  • Sit in the sun
  • Take a walk
  • Treat yourself to lunch at a restaurant with a friend
  • Get a massage / facial / manicure… do something for you

It is important to have a plan for your own self care because doing so can enhance the quality of life for you and the quality of life of your loved one. The more relaxed and fulfilled you feel, the more easily you will be able to provide the necessary care to your loved one. It is also possible that your loved one will appreciate a respite from the normal routine of care as well!

The lack of a conscious plan of self-care can result in caregiver burnout. How do you know if you are burning out? Some symptoms of caregiver burnout are:

  • Social withdrawal
  • Exhaustion
  • Inability to concentrate or relax
  • Depression
  • Inability to sleep
  • Anxiety
  • Irritability
  • Forgetfulness
  • Lack of appetite

Caregiver burnout makes the task of caregiving very difficult, if not impossible. It can lead to resentment on the part of the caregiver, and even illness. It is your responsibility as a caregiver to care for yourself as well as the person you are caring for.

Respite care is one tool you can use to help yourself avoid caregiver burnout. To begin taking advantage of the benefits of receiving a reprieve from the routine care you provide to your loved one, follow the three steps below:

Step 1-Are you a family caregiver?

The first step to receiving help is to identify whether or not you are a family caregiver. Not everyone considers the care they provide to their loved one as 'caregiving.' However, you are indeed a family caregiver if you provide care to an ill family member such as assisting with areas of personal care, emotional support and companionship, finances, and maintaining the household.

Step 2-Have you discussed your needs with your loved one?

It is important to communicate your needs and desires with your loved one, the person you are providing care for. If you believe that you might like to pursue respite care services, it is essential to discuss this with your loved one. In doing so, you may discover that your loved one is very supportive of the idea. You may also find that having such a conversation opens up doors for even more communication and intimacy.

Step 3-How do you find out about respite services available to you?

Respite care can take different forms. In-home respite care usually involves a trained professional (often from a home health agency) who comes into the home to provide necessary care during a period of time when the caregiver is away. In some communities, there may be a church, volunteer agency or group that provides respite care by a volunteer. (The level of training the care provider should have will depend on the level of care needed by your loved one.)

Another way to partake in respite care services is through a facility or residence that employs trained health care staff on-site. This type of respite would allow your loved one to stay at such a residence on a short-term basis (as determined by you and your loved one) and entitle him or her to receive whatever cares he or she needs. This kind of service may be available though a local long term care residence, hospital or assisted living facility.

A less formal way of way of receiving respite care assistance is by utilizing family and friends who are eager to be helpful. The next time a friend or family member asks you how they can help, consider responding by telling them that giving you a break for the day or an evening, or even for a few hours might be the nicest gift they can give you.

The ALS Association (ALSA) has chapters throughout the United States that offer respite services and/or information on respite care resources in your area. If you have a local ALSA chapter, feel free to contact that particular chapter for more information. Otherwise, you can call The ALS Association National Office toll free at 1-800-782-4747. You may also write us via email at alsinfo@alsa-national.org. We can refer to you to an ALSA chapter in your area and/or provide you with other pertinent respite care resources.

"We are most effective as caregivers when we are centered in our own sense of well-being."

- Caryn Summers, R.N.

For additional information and tips on how to select a respite care provider, contact our chapter or the National Office of The ALS Association at 1-800-782-4747, or at alsinfo@alsa-national.org.

>>Back to Top

National Respite Locator Service
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
Phone: 800.773.5433

The National Respite Locator Service is a national directory of respite services that helps caregivers find a respite program in their area.  Respite care programs provide complete patient care, either in a hospital or home setting, and are designed to give family members a break from care-giving duties.  They specialize in helping children.

Independent Living Resource Centers
The mission of the Independent Living Resource Centers is to empower persons with disabilities to achieve full economic and social participation in the community and promote opportunities for independence, self-direction and freedom of choice.

Resource centers provide peer counseling, personal assistance services, independent living skills training, employment related services, housing services, information and referral, individual and systems advocacy, services for deaf and hearing impaired persons, and bilingual, bicultural outreach programs. They also provide references for contractors who do home modifications in local areas and may have information about specific services available.


Contact us at the Florida Chapter for specific, local respite care information.