Learn about the Coping Process
A normal crisis processing process consists of 7 phases:
- ignorance
- uncertainty
- denial
- resistance
- bargaining
- depression
- acceptance/processing
Both the patient and the caregiver must acknowledge these phases.
As a caregiver, it is important to conduct a good psychological “intake” as early as possible to determine what kind of person the patient is, how they typically deal with crises, and which phase of the processing process the patient and their partner are currently in.
Special points of attention:
- Offer anticipatory guidance;
- Support the patient’s existing coping mechanisms;
- Help the patient express their feelings when they are ready;
- Encourage the patient to maintain normal eating habits;
- Help the patient maintain their sources of support;
- Ensure emotionally open communication between the patient and their surroundings;
- Recognize when the crisis processing is not proceeding normally.
In a disease like ALS, the constant and rapid succession of functional losses is characteristic.
In addition, ALS is a disease against which one can fight only to a limited extent.
Someone with ALS is constantly dealing with:
- a decline in physical function;
- a loss of independence, increasing dependency;
- stopping work;
- moving or changing living environments, losing neighbors;
- a worsening financial situation;
- increased reliance on aids and assistive devices;
- the need to accept help from others.
Learn about the disease and how to care for someone with it, and pass that knowledge on to others
As a caregiver, you should understand what ALS is and how best to care for someone with ALS. By knowing how the disease affects someone’s life, you will better understand the patient and be able to adapt continuously to inevitable changes. Share this knowledge with family and friends. This helps them understand what’s happening and offer appropriate help and support.
Be realistic about the disease
ALS is a progressive illness. The person you are caring for will become physically weaker. Being realistic helps you adjust your expectations.
Be realistic about yourself
Caring for someone takes time and energy. There are limits to what you can do. Decide in advance what is most important to you: spending time with the person you care for, taking time for yourself, or keeping the house tidy? There’s no “right” answer. Only you know what matters most at any given moment.
Also set boundaries for what you can do in one day. That can be difficult, and it’s not easy to say no. Be realistic. Consider what you can manage and where you need help. Caring for someone with ALS is demanding, and asking for help is never a sign of failure.
Accept your feelings, even if they are contradictory
Caregiving brings conflicting emotions. In a single day, you might feel satisfied, angry, guilty, happy, ashamed, sad, afraid, and helpless. These feelings can be confusing and difficult to cope with. They are neither good nor bad—they are normal. Experiencing negative emotions doesn’t mean you’re a bad caregiver. It only means you are human. Always remember that doing your best is all you can do.
Share your feelings with others
Find someone you trust and talk about what you’re feeling and what worries you. This could be a close friend, a family member, someone you met through the ALS Association, a fellow church member, or a professional caregiver (doctor, psychologist, social worker, nurse, etc.). By sharing your feelings—especially with a professional—you can learn to recognize and accept them, which helps you stay strong in your caregiving role.
Try to see the positive aspects
Your attitude largely determines how you feel. Try to see the positive side of life. Look for ways to keep the ALS patient physically and intellectually engaged. Make each day worthwhile.
Take care of yourself
Don’t neglect your own health. Eat healthy and balanced meals, get regular exercise, find ways to relax, and make sure you get enough sleep. Have regular medical checkups. With good health and enough rest, you’ll handle stress better and provide better care.
Take breaks now and then and maintain other interests and hobbies. Don’t wait until you’re exhausted. Make time for what’s important to you. Taking care of yourself gives you the strength to continue and helps you feel less alone and isolated.
Try to see the humor in certain situations
ALS is a serious illness, but that doesn’t mean you have to take yourself seriously all the time. Seeing the humor in a situation doesn’t mean you’re taking caregiving less seriously.
Seek help
Share your thoughts and feelings with others—you need their support. Find a way that works for you. Maybe it’s easier for you to talk to a friend or family member, someone from the ALS Association, or perhaps a professional caregiver.
If you find it hard to ask for or accept help, remember that asking for help doesn’t mean you’re a bad caregiver. No one can take care of someone with ALS entirely on their own. Ask relatives and friends for support. Most people are happy to help. Think carefully about where you need help and tell those around you.
Make plans for the future
Making future plans helps reduce stress. When the ALS patient is ready, talk about their financial situation and make clear arrangements. Discuss the decisions that will inevitably have to be made. Also talk about alternative care arrangements in case you are no longer able to provide care yourself.