For Caregivers

Caregiving is willingly undertaken out of love and devotion to the person with ALS and can be a source of great personal satisfaction.

While that may be true, caregiving also exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the person with ALS often causes the caregiver to overlook her/his own needs such as eating properly, getting enough rest, or taking time to pursue one’s own interests. See below for some important caregiving tips and reminders.

53 Million

people in the U.S. provide care to a chronically ill, disabled, or aging family member or friend.

24 Hours

is the average per week caregivers spent providing care for their loved one.


of caregivers in the U.S. are female, and the average age is 49.

Caregiving Tips and Hints

GettyImages 1060998246 Portrait

Coping with Burnout

GettyImages 1352426516 Portrait

Being a caregiver of someone with ALS is a very important role. It involves a number of tasks that can be very time consuming, and can require a great deal of effort. If we do not learn to recognize that certain tasks and expectations can take their toll on us, regardless of what role(s) we play in life, we may find ourselves headed down the path of burnout. Burnout can be defined as exhaustion of physical or emotional strength or motivation, usually as a result of prolonged stress.

A key to guarding against burnout is to be willing to take a close look at our lives, in order to become more conscious of our thoughts and behaviors. Some practical questions to ask ourselves are, "What causes burnout?", "How do I know if I am burning out?" and "What can I do to prevent burnout?". We will attempt to answer these three very important questions...

It takes a village to care for someone who has been diagnosed with ALS, and it is important to remember that it is okay to ask your support system for help!

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.

GettyImages 545881691 Portrait