How to care for pALS

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Here is some advice for the caregivers, this to alleviate the stress that inevitably occurs when caring for someone with a progressive disease such as ALS.


A normal procedure for crisis processing contains 7 phases:

- Ignorance;
- uncertainty;
- denial;
- resistance;
- bargaining;
- depression;
- acceptance/processing.

These phases cannot be ignored neither by the patient nor by the caregiver.

A good psychological intake is very important for the caregivers, to know what kind of person the patient is, how he or she is accustomed to deal with a crisis and to know in which state the patient and the partner are.

Some special points of attention:

- Offer anticipating assistance;
- Support of existing processing mechanisms of the patient;
- Help the patient , if in need,  expressing his feelings;
- Encourage the patient to maintain a normal diet;
- Maintain the patient’s  sources of support and thereby involve him or her;
- Provide an emotionally open communication between patient and environment;
- Signal an abnormal course of crisis processing procedure.

Processing  has, as other matters in life, to deal with various factors. How does someone faces life in terms of living situation, previous experiences and what is his age?

What really stands out by diseases like ALS, is the suffering of constant lose in a relative short timeframe. At the same time ALS is a disease against which one ‘s fight is limited.

Everyone involved is in constant processing of:

- decline in physical function;
- surrender of independence, getting increasingly dependent;
- stopping to work;
- the changes in living situation and surroundings,..;
- the worsening of the financial situation;
- the use of facilities;
- accepting help from others.

Learn about the disease and the caring and pass it on to others

As caregiver, it’s important that you are well aware of what ALS is all about and thereby how to properly assist/help an ALS patient. Your knowledge of how the disease influences someone’s life, will make you a better caregiver as well as enables you to adapt to the constant changes in the process. Chare your knowledge with family and friends. They will better understand and relate to the process, and as such will be able to offer appropriate assistance and support.

Be realistic about the disease.

Although it’s tough, it’s very important to be realistic about ALS and its consequences. ALS is a progressive disease. The person you care for, will physically get weaker and weaker. When you are realistic about this, it will facilitate you to adapt your expectations.

Be realistic about yourself

It’s important for you to realize that being a caregiver is time en energy consuming. There will undoubtedly be limits to what you can do.

You will have to decide what’s important to you. What’s important to you; time with the person for whom you care, time for yourself, or a clean house? There is no right answer. Only you know what’s most important at any given time for you.

Besides making choices, you’ll also have to anticipate what you’re capable of in a day. It might be hard to admit that you can’t do it all. It might not be easy to have to say ‘No’. Be realistic and think carefully about what and how much you can do exactly and in which areas you need help. Someone with ALS needs a lot of care and it’s not at all a shame to ask for help.

Accept your own feelings.

While taking care of someone, you’ll experience conflicting feelings. In one day you can feel pleased, angry, guilty, happy, ashamed, sad, scared and helpless. These feelings can be very confusing and difficult to cope with. Therefore they are either good nor bad, they are just normal. Experiencing negative feelings doesn’t mean you’re a bad caregiver. They just point out that you too are just human. Always keep in mind that you can only do so much as your best.

Share your feelings with others.

It’s also important that you share those feelings with others. Find someone you’re comfortable with and talk to him about your feelings and your concerns. This person can be anyone from a good friend, a family member, someone you met at the ALS association , someone from church or an professional helper like a nurse/docktor/psychologist... Sharing those feelings can really help you to identify them and ensure that they do not undermine your role as caregiver.

Try to see the positive things.

Your approach or attitude largely determines how you feel. Try to look, as much as possible, at the bright side of live. Find ways in which the patient can remain physically and intellectually engaged.
There will always be those special moments that make it all  worth.

Take care of yourself.

Your own health is very important, don’t lose its sight. Maintain a healthy diet and enough exercise. Find ways to relax and have good night sleep. Let a doctor monitor your health on a regular base.
A good health and enough rest will not only help you cope with stress but help you maintain good care.

Try to get away from time to time and make time for hobbies. Please don’t wait till you’re exhausted and too tired to enjoy other things. They will give you the needed strength and will not make you feel alone or isolated.

Try to see the humor in some situations.

ALS is a very serious disease, but don’t take yourself to seriously all the time. It’s not because you can smile about some situations, that therefore you consider the care less important or serious.

Seek help.

Share your thoughts and feelings with others, you’ll need their support Find a way in which you feel comfortable, maybe this with a  friend or relative, maybe with someone from the ALSliga or maybe you’re most comfortable sharing with a professional helper.

It might be hard to seek or accept help, but know that it doesn’t reflect your capability as a caregiver at all. You just have to realize that no one is capable of caring for an ALS patient all by himself. Ask family members or friends for help. They’ll be most happy to return the favor. Consider carefully where you can use help and let the people around you know.

Make plans for the future

Making plans for the future helps to reduce the stress. Discuss the financial aspects, when the patient is ready for it, and make appointments. Talk about the choices and decisions that need to be made. And also discuss possible alternative solutions relating to the care, for when you would not be able anymore to provide it.