For Caregivers & Families

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

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.

61%

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

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Coordinate Help

The ALS Care Connection is a simple online tool that helps organize the community of people who want to help. 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.

Learn How to Get Started

Caregiving Tips and Hints

Take Care of Yourself

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 http://www.sharethecare.org/.

Be Aware of Depression

Value Yourself

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

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

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 us 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

Coping With Burnout

Being a caregiver of someone with ALS is a very important role. It usually 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...

Common Causes of Burnout

Perfectionism:
A perfectionist continually focuses on what needs to be improved, rather than what has been accomplished. When this becomes our focus, we may never feel that we have succeeded at anything.

Never-ending tasks:
Never-ending tasks describe work that appears to lack both a beginning and end. This can lead us to feel as if we have no closure, and therefore have not completed anything.

Work overload:
Work overload is when we have more work to do than we can complete in a given amount of time. When we operate this way, we set ourselves up for failure.

Impossible tasks:
Impossible tasks suggest that we are physically unable to do something we may feel we should be able to do. If we believe that we should be able to do something that we cannot do, we automatically feel like we have failed. It is a no-win situation.

Multiple roles:
Many of us play a number of important roles in our lives, such as wife/husband, mother/father, caregiver, and breadwinner. It is easy to feel overwhelmed when we are trying to play multiple roles in our lives.

Self-sacrifice:
Self-sacrifice occurs when we agree to take on certain tasks despite our true desire to complete them. When we continually agree to things that we would rather not do, we inevitably become resentful.

Unspoken feelings:
Any emotion that is unexpressed creates "blocks" in our ability to complete tasks and to function in relationships. If we do not speak about how we are truly feeling in a situation, those emotions surface in other, unproductive ways such as being chronically late, frequently forgetting things, or reacting in ways that are inappropriate to the situation.

Common Symptoms of Burnout

It is important to remember that we are not alone in our experiences with burnout. At some point in time, it is likely that most of us will experience one or more of the following symptoms:

"Negative" emotions:
"Negative" emotions are the feelings that are often the least comfortable to feel. One symptom of burnout is consistent "negative" feelings such as anger, anxiety, dissatisfaction and guilt.

Interpersonal problems:
We might experience conflict with others in the form of emotional outbursts, overreacting, hostility and withdrawal.

Health Problems:
Some common health problems associated with burnout are frequent insomnia, fatigue, headaches, backaches, lethargy and high blood pressure.

Poor performance:
We may become less productive due to boredom, lack of enthusiasm, feelings of fear or an inability to concentrate.

Substance abuse:
Another symptom of burnout is a marked increase in the consumption of alcohol and/or other drugs, cigarette smoking, caffeine and food.

Workaholism:
We might be inclined to work more hours due to feelings of inadequacy, believing that the more we work, the better we will feel.

Depression:
Depression is the suppression of emotions. We may be depressed if we notice an overall feeling of hopelessness and meaninglessness.

Loss of self-esteem:
Simply stated, the loss of self-esteem equals a decrease in self-confidence.

Solutions in Dealing with Burnout

Once we become more aware of why we experience burnout, and the various ways burnout manifests itself, we can begin to focus on ways to guard against it. It is time to develop a plan of action!

Take care of yourself:

Regularly feed your body nutritious foods
Get sufficient rest
Exercise routinely
Pay attention to your body's signals of stress

Practice stress-reducing strategies:

Develop a strong support system:

Surround yourself with friends/family by whom you feel supported.
Attend a support group where you can share your concerns & feelings.
Create a support /discussion group at work where you can share your concerns, while being willing to talk about your part in the problem and the solution.
Utilize your company's Employee Assistance Program (EAP) to receive support/counseling or referrals for services that can assist you.
See a counselor or therapist if you are in need of more extensive mental health support.

Create a fulfilling life:

Make conscious decisions about how you want to spend your time.
Say "yes" to what you want to say "yes" to, and say "no" to what you want to say "no" to.
Acknowledge your priorities and actively build your life around them.

The key to avoiding burnout is to continually seek balance in our lives. The more informed we are about our own issues with burnout, the better armed we will be to take care of ourselves. Consequently, the better job we do of taking care of our own needs, the more we can be physically, mentally, and emotionally available to those around us.

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.

Find Respite Resources Near You