Topics include:

What is ALS? What can you expect? The stages of ALS The role of the ALS caregiver Caring for the caregiver Rewards of caregiving

Personal stories A Caregiver’s Bill of Rights Rules for the Care and Treatment of Caregivers     Chapter 1 Resources

---

What is ALS?

Amyotrophic lateral sclerosis — ALS or Lou Gehrig’s disease — is a disorder of the motor neurons or nerve cells in the brain and spinal cord that control the action of voluntary muscles. For unknown reasons, in ALS these motor neurons die, and the muscles they control no longer function, gradually becoming paralyzed.

ALS usually starts out in one of two ways: bulbar onset or limb onset.

When the motor neurons in the brain stem are affected first, then symptoms start in the face, mouth, throat and tongue, called the bulbar region.

More commonly, motor neurons in the spinal cord are affected first and symptoms start in the limbs — arms, legs, hands or feet. Rarely, the respiratory muscles in the trunk are affected first.

In all types of onset, symptoms eventually spread to other areas of the body.

What can you expect?

Each case of ALS is unique.

It used to be that about 70 percent of people died within five years of the onset of symptoms, but that figure is changing thanks to better use of medical interventions, like assisted ventilation and feeding tubes. About 10 percent live for 10 years, and some even live for 20 years or more.

ALS doesn’t unfold in a predictable pattern. Some people have slow progression of symptoms, while others experience a rapid loss of ability. Sometimes there’s a big loss followed by a plateau.

Although each individual follows his or her own course, it’s possible to make broad generalizations about the progression of the disease.

For the most part, ALS doesn’t affect the heart, blood pressure or temperature, or automatic body systems like digestion, urination, defecation, etc. The senses (touch, hearing, vision, smell) are largely unaffected. The muscles that move the eyes, even though classified as voluntary muscles, usually aren’t affected either.

Cognitive (thinking) changes or unexpected behaviors are common in people with ALS. Sometimes this is due to damage from the disease (see Dementia and Pseudobulbar affect), and other times to factors such as depression or poor respiration.

Sexual function remains normal and there are numerous reports of men with ALS fathering children and women with ALS carrying healthy babies to term.

For a look at the three general stages of ALS — early, middle and late — see Stages of ALS. The time frame and symptoms for each of these stages is totally individual. People with ALS can move very quickly through the stages, or have frequent plateaus and progress slowly, or any combination thereof. The information in the chart gives a general idea of the requirements of life with ALS at each stage.

Back to top

The role of the ALS caregiver

"To those of you caregivers who have chosen to not only stick by your loved one with ALS but actually love them as partners, not just patients, I commend you. You did have a choice to stay or go ... and you chose to LOVE and STAY. May you know each day that your sacrifices are not in vain."

Taking care of someone with ALS isn’t like taking care of a person with an acute illness lasting a few weeks, nor is it like caring for someone with a stable, chronic condition, such as someone who has had a stroke. It’s somewhere in between.

The caregiver’s job gradually becomes harder as ALS progresses, meaning you’ll have time to learn how to give assistance. The health care team and MDA staff will help you learn as you go.

ALS caregivers move from helping with buttons and balance to providing a steadying arm, feeding a meal bite-by-slow-bite, helping with more intimate personal tasks, learning to operate medical equipment and supervising a 24-hour care operation that includes other sources of help.

ALS robs people of their movement, but not their spirits. The toughest — and most rewarding — part of your job may be figuring out how to help your loved one still feel in control of his or her life, even as you provide more and more care.

The Family Caregiver Alliance lists these "rules of the road" for caregivers:

• Take it step by step.
• Spend time at the beginning understanding your situation and options, so you don’t have to rush into action without a plan.
• A team approach is the key to success. (Your loved one with ALS is a central part of that team.)
• Conditions change along the way and your strategies will shift accordingly.
• Knowledge and confidence come a little at a time.
• You must ask for the support you need.

ALS feels like a series of losses. Part of a caregiver’s job, for themselves and their loved one, is to find the gains in the losses.

Caring for the caregiver

You must take care of yourself. This may seem impossible when so much attention is required by the person with ALS, but if the caregiver gets ill or is overcome by depression, he or she can’t do a proper job of caregiving.

Caregivers make a long-term commitment to a 24-hour-a-day job. Feeling not up to it is a normal, common reaction. But with planning, the job is manageable.

Due to the nature of ALS, it’s not uncommon for caregivers to experience sleeplessness, anxiety and depression. Physical symptoms can include back pain, headaches, stomach disorders and weakened immune systems. Studies show that caregivers develop chronic conditions twice as frequently as others their age. The more hours spent caregiving, the higher the chance of illness.

Nurses and other health care professionals at the MDA clinic can help you find resources to assist with caregiving tasks (also see Chapter 8).

“My wife and I just decided to take each day to enjoy what we have (which isn’t much in worldly terms), each other, our families, the world we live in, and the fact that we have been granted the time we have to do it.” “I gave up a job which I loved, gave up going to lunch with friends, hobbies, going to the mall, etc. But now I know this is my calling. I am the best caregiver my daughter will ever have.” “Caring for a person with ALS is stressful but once you put your mind to it — once you make the decision that it’s your life to take care of this person and put your life on hold — then the outlook on life is much easier.” “One minute and one day at a time. That’s become my motto. Guilt, fatigue, it all goes away for a little while every time my wife smiles and laughs.”

This book, your MDA ALS support group and your MDA health care service coordinator also can suggest ways to effectively handle the job.

Use these resources — don’t be reluctant to admit your frustrations, exhaustion or fears. No one can do it all or do it alone.

Watch yourself to make sure you’re getting proper nutrition, as much rest as possible, some exercise and some time for yourself. Acknowledge and accommodate your limitations — back problems, illness, time required by children or elderly parents.

One way to make the caregiving job manageable is by building a caregiving team.

As primary caregiver, think of yourself as a captain with troops to whom you can delegate some tasks. Enlist family members, friends, or members of your church or synagogue.

Start thinking about your team early, and make a list of people who say, “Let me know if there’s anything I can do to help.”

Equipment also is a godsend to caregivers. There are numerous mechanical devices to assist with lifting, mobility, feeding, etc. Insurance and Medicare often cover the rental or purchase of these items, or they may be available through the MDA Loan Closet.

Rewards of caregiving

Despite its many demands, caregiving can be one of the most gratifying, and spiritually and emotionally powerful experiences of a person’s life.

The intense closeness with the loved one who has ALS, the chance to discover that you can meet needs and solve problems, the gratitude felt by the loved one — all these enrich the psyche and the heart.

Just as caregiving can take a physical and emotional toll, new research shows that the act of helping can do the opposite — bolster well-being, increase coping skills, provide satisfaction and even strengthen the caregiver’s ability to ward off or recover from illness.

But these benefits can’t occur when the caregiver is overwhelmed.

Support, respite and perspective will help make the ALS journey one of depth, growth and meaning, instead of only exhaustion, sacrifice and despair.

Your life as an ALS caregiver will be unlike anything you’ve experienced before. Know that you aren’t alone in this experience, and that help is there when you need it.

Back to top