When life handed you the task of caring for someone with ALS, it probably didn’t come with any instructions. You may feel very unprepared and frequently overwhelmed. You’ll be dealing with powerful emotions, drastic changes in your social and family relationships, and burdensome physical demands. These demands will increase as your loved one progresses into the later stages of ALS.

Caregiving for someone with ALS is an immense chore. By definition, a caregiver is the person who’s with the patient day by day, who’s responsible for virtually everything the person with ALS needs. One author defines the essence of caregiving as "leaving your agenda at the door and being present for whatever a person needs." You’re making a long-term commitment to a 24-hour-a-day job. If you often feel you’re not up to it, that’s a normal, common reaction.

Look at these findings from a 1997 survey conducted by the National Family Caregivers Association (NFCA): More than half of all caregivers have experienced sleeplessness and depression, and three-quarters say they receive no consistent help from other family members. Back pain, headaches, stomach disorders, and loss of personal time were also common experiences among caregivers.

Fortunately, there’s help available for you. With more than 50 million caregivers in the United States — most of them family members and most of those women — a growing number of books, organizations and Web pages offer information to help you face the stresses of this tremendous task.

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Your Health Care Team

One of the first things caregivers learn is that doctors don’t have all the answers. Many doctors don’t even realize what’s involved in round-the-clock caregiving. They may not know the resources available to you such as organizations, community agencies, support groups and reading material. Nurses can sometimes point you to these resources, as can your MDA Health Care Services Coordinator. This guide lists many resources that will give you a start.

One thing doctors can do is to help you to understand ALS. Be sure your doctor and other health care providers include you in all discussions of the effects of the disease, treatment options and assistance the person with ALS needs. The more you and he know about the disease, the better you’ll be prepared to deal with it, and the more control you and your loved one will have over your lives.

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Your Physical Health

It’s essential for caregivers to take care of their own health. Physical exhaustion often goes with the job of caregiving, especially when your loved one needs a great deal of physical assistance. Take care of your own health by getting proper nutrition, enough rest, some exercise and some time for yourself.

"But my loved one needs me all the time," you may say. "I don’t have any time for myself." You must take time for yourself. This is no time to try to be Superman or Wonder Woman. You’re not superhuman. If you get sick, injured or exhausted, you’ll no longer be able to help your loved one. Then your sacrifice and selflessness will have led to the exact opposite of what you wanted — that is, being able to keep your husband, wife or parent at home with yourself as primary caregiver.

Building a Team

How do you find time for yourself?

Start early to build 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, members of your MDA/ALS support group, or members of your church or synagogue. Teach several people how to provide basic physical care. As the demands on your time increase, you can work out a schedule in which others take primary responsibility during specified regular times of the day or week.

Hiring a trained health care worker is an option. (See "Getting Help." ) If you can’t afford regular help, maybe you can pay for some of the more difficult services, or for respite care now and then.

If you’re a small person, or have a bad back or other physical weakness that makes lifting difficult or impossible, investigate the mechanical devices on the market. You can learn safe, efficient techniques from physical and occupational therapists. Or work out a schedule in which someone stronger can do the more physically demanding tasks. The alternative is to do it yourself, injure yourself and no longer be able to give care.

Asking for Help

To be a good caregiver, you have to get over any reluctance to ask for help. By trying to go it alone, you’re not being fair to yourself, the person with ALS or others in the family. Being a caregiver is an enormous responsibility, and you deserve whatever help you need.

When you ask someone to help, be very specific about what you need and when you need it. Friends often say, "Let me know if I can do anything," and they usually mean it. But they won’t know what to do unless you tell them. Make a list of things you could use help with and keep it handy.

Letting friends help with noncaregiving chores can go a long way toward lowering your stress level and saving time. Can you give a friend your grocery list when she goes to the market, or let a neighbor pick up the kids from school? Put your son, daughter, brother or sister in charge of cooking dinner, getting the car washed and fueled, or taking care of the yard. Perhaps it’s time to lower your housekeeping standards and skip the final polish and waxing. Shopping through catalogs, using delivery services, reserving a time of day for phone calls, using devices and gadgets, are among the techniques that can save time and energy.

If you’re also raising children and/or holding down a job in addition to caregiving, it’s even more imperative that you find ways to maintain your energy. Establish daily routines to minimize stress, involve your children in caregiving and use other techniques in this guide to keep from burning out.

Giving Yourself a Break

Don’t hesitate to schedule someone to stay with your loved one while you go to exercise class, take a walk or see a movie. Most friends will understand that giving you a break is just as essential as providing direct assistance to the person with ALS.

Respite care — having a trained person take over your duties for a time — is often available through the local Department of Social Services, Department of Health and Human Services, home health care agencies or the Area Agency on Aging. The NFCA book, The Resourceful Caregiver, has many suggestions on finding and efficiently using respite care. You can seek respite service for as little as a few hours, or as much as a few weeks.

Studies show that caregivers of people with serious illnesses or disabilities are more prone to stress-related physical problems than others their ages. Watch for chronic muscle tension, insomnia, indigestion, trembling, teeth grinding and jaw clenching, sweaty hands, changes in appetite, dizziness, stomachache, headache or back pain. These signs warn of depression, exhaustion and other illnesses, and they won’t go away by themselves.

By putting some coping techniques to work, you may be able to avoid reaching the point of exhaustion and burnout. Burnout has occurred if you become numb to your loved one’s needs and feelings and you just don’t care. Don’t let it go that far; it may be difficult or impossible to come back.

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Your Emotional Health

As enormous as the physical job of caregiving for someone with ALS may be, the psychological demands this job makes are even more complex and relentless.

A Changed Relationship

One of the many ironies that caregivers of people with serious illnesses (especially husbands and wives) face is this: Just as you’re handed the greatest challenge of your life, you lose at least some of the support of the primary person who usually helps you meet challenges. ALS strikes adults of all ages, and you may be anywhere from your 20s to your 80s when you find yourself helping your spouse, parent, sibling or other family member in ways you never dreamed of. Even for the best-prepared, best-intentioned person, it’s going to take a great emotional toll.

Since ALS doesn’t diminish mental capacity, a caregiver can discuss needs and work out solutions together with the person who has ALS. This helps maintain the relationship in its normal form. As the patient loses physical abilities, having a say in family decisions may become increasingly important; he may feel it’s his only way to contribute. In the best of situations, the person with ALS can actually be an important source of emotional support for the caregiver.

Another way to keep things normal is not to rush into any aspect of caregiving. Let the person with ALS do as much as he can for as long as possible. It’s good for his own well-being and conserves your energy. As the disease progresses, he’ll become more dependent and you may have to make more decisions on your own. Still, do all you can to resist treating the person with ALS like a child.

As you face the changes that ALS brings to your relationship, it’s vitally important to communicate openly. You may have different perceptions of what’s going on in the family, and of the disease. Talking it out diminishes conflict and helps you understand each other’s experiences.

A Test for Marriage

A serious illness is one of the greatest tests of a marriage and of each spouse’s commitment to it. Be sure that you each continue to function as long as you can as spouses, not just as the giver and receiver of care.

A married couple who have been long-time companions and lovers have developed certain ways of relating to each other over the years. A certain "balance of power" has probably been reached. Sometimes one spouse is clearly the "dominant" person in the marriage, but, more often, each person holds some of the power. Most longtime marriages have also allowed for some privacy for each person.

In ALS, the balance of power is abruptly tilted. The person being cared for quickly becomes dependent, even if he was once the spouse most depended on in the relationship. Privacy is lost, especially if the patient’s spouse is doing all or most of the caregiving.

In many marriages, a caregiver has to take on chores that the spouse previously performed. In households with traditional male and female roles, men may find themselves doing more housework than before and women taking more responsibility for finances, including earning a living. Don’t aim for perfection in these areas. You don’t need to add more pressure to your life by setting your expectations too high. Do what needs to be done and don’t try to "be" the other person.

The traditional emotional differences between the sexes may also play a role when one spouse needs care. Women are more typically raised to be caregivers, accommodate the needs of someone who’s ill and express their feelings. Men may feel less comfortable giving care and expressing empathy. In any case, if your caregiving is rooted in love, you’ll learn and manage to the best of your individual
ability.

People experience a variety of emotional reactions to the knowledge that they’re going to die sooner than they expected to (see "End-of-Life Issues" ). The important thing for a caregiver of someone with ALS to understand is that not everyone reacts the same way to such news, and your own reactions may not always "mesh" well with those of the person you’re caring for.

Another area of difficulty may be sex. While the one with ALS may need the comfort and reassurance of lovemaking, and the affirmation of being desirable, the caregiver may be too exhausted or depressed, or may no longer find the partner attractive. In some families, the spouse with ALS may see the other’s sexual advances as insensitive. Communication and compromise are, as always, needed to deal with these issues.

As the disease takes over your life, you may feel reluctant to share concerns and events not related to ALS with your spouse. Things outside the disease may seem petty and unimportant when compared to ALS. How can your spouse care about your problems and victories at work or in the neighborhood? Yes, ALS changes your priorities and perceptions. But it doesn’t eradicate your needs for companionship, sharing and affection. Your spouse may enjoy hearing about outside events and count on you as a window to the world.

If marital problems are mounting and you’re not able to work things out, consider counseling. Having ALS needn’t stop you and your spouse from learning better communication skills.

What to Do With Your Feelings

Caregiving for someone you love who’s very ill produces a wide range of emotions. It’s natural to feel sadness and grief for your loved one’s losses and for the loss of your own previous life. But, especially after you’ve lived with the disease for a period of time, you’ll also have days when you’re angry, resentful, impatient, lonely, sorry for yourself, guilty, doubtful, ashamed or afraid. You may have thoughts that shock you or seem "bad" (Why is he doing this to me? Is there some way I can escape?).

These feelings aren’t selfish or sinful. They’re normal responses to the drastic changes that ALS brings to your life. Someone who says, "I never resented a moment of it," probably isn’t being honest about the realities of caregiving. Of course, your love for the person you’re caring for may diminish these negative feelings and help you acknowledge them and let them go.

Don’t pretend you don’t feel what you feel, and don’t be ashamed of your emotions. You don’t have to act on these feelings. If your relationship with your loved one is easy and open, you can even say some of these things out loud, knowing the one you care for will understand. If you can’t do that, share them with a trusted friend.

MDA support groups, chat rooms and talks with others in the same boat are ideal places to let your guard down. Just saying aloud such thoughts as, "I hate this ... I can’t take another day," doesn’t make them true. Expressing a feeling diminishes its power over you, and lets you go on doing the job you’re committed to do.

As a caregiver, you’re giving a great deal of your life to someone else’s needs, and often neglecting your own. When difficult emotions arise, remember that you have your own needs. Let your feelings of resentment trigger you to do something for yourself — even if it’s only taking five minutes to drink a cup of tea, pet the cat, listen to a favorite song or say a little prayer.

On days when the job of caregiving seems overwhelming, try not to look at the whole picture. Break the job into small tasks. Change the sheets without even thinking about what comes next. After you’ve changed the sheets, then focus on the next chore. Take it one day at a time, one hour at a time, one minute at a time.

Stress over financial worries takes a great toll. (See "Legal and Financial Issues.")

Many caregivers have a tremendous load of responsibility in addition to caring for someone with ALS — young children who need time and attention, aging parents with health problems. You’ll be expected to meet their individual demands as well as to help with their emotional struggles over having a parent or adult child with ALS.

A plate this full is bound to fray your nerves, and is a sign that you need to find some ways to compromise and ask for help. See "Your Physical Health," for suggestions on getting support. Remember: Asking for help isn’t a sign of weakness; it’s only human.

Also, give yourself lots of credit, and squelch those self-critical voices. When others say you’re amazing, accept the fact that you’re handling a hard job well. You deserve every pat on the back that comes your way, including those from yourself.

Use your sense of humor. It’s a great way to relieve tension and break barriers. Laughing is good for you physically and it helps everyone around feel better.

Your spiritual belief system can, of course, be a great source of solace, strength and renewal.

You’ve reached emotional overload when you no longer feel strong emotions, or you can’t summon up the compassion you need. This numbness indicates that you’re burned out or used up. Medical help or counseling may restore your energy, or you may truly have reached the end of your rope. It’s time to look into care options (see "Getting Help.").

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Your Loved One's Feelings

ALS diminishes abilities and shortens life. It makes strong people dependent and helpless. It robs them of self-control.

Losing Control

Almost everyone values being in control of his life. In America, especially, we’re taught to value independence and autonomy from an early age — wanting our own room, then our own car, own apartment, then our own house, and, if possible, our own business. Old age is a series of losses of control and independence, as physical frailties make it impossible to drive a car, to live alone, finally even to be left alone for a short time.

In many respects, ALS mimics old age, but in a condensed and accelerated form. As people age, they generally have time to adjust to each new stage before things change yet again. But in ALS, there may scarcely be enough time to adjust to one set of losses when the next arises. As one technician expressed it, "By the time you get the wheelchair you ordered for the patient, he needs a different type of chair."

In the space of a few short years, the person with ALS generally loses the ability to walk, drive a car, work, get to the bathroom by himself, eat and drink normally, and ultimately to speak and even breathe. With each loss, come new arrangements, new changes in roles inside and outside the family, new feelings of grief. Often, each loss brings a whole series of new feelings to be processed.

People with ALS go through great personal turmoil as they face these losses and may even experience personality changes. Isolation, denial, rage, grief, physical discomfort, shame, fatigue and fear are just a few of the overwhelming challenges that may obsess the person with ALS. (Follow the link for more about the emotions involved in the grief process.)

To some degree, you can help your loved one deal with the changes brought by ALS. Unlike a sudden injury, ALS allows a little time to adjust to new losses. But you and your loved one may not adjust at the same pace.

For instance, when the person with ALS is falling frequently, you may think it’s time for a wheelchair. But your loved one may not be ready to accept that change. This is a decision you need to make together, and a time for you to summon patience and empathy. Try to appreciate what these losses mean to your loved one. To the extent you can, don’t push him into a new stage; rather, gently help him reach acceptance at his own pace.

If your loved one expresses rage or grief, encourage him to let it out. Getting the feelings out in the open will help him move on, just as it helps you. Assure him he doesn’t have to be cheerful or grateful all the time.

Some people with ALS withdraw emotionally and refuse to talk about what’s happening. Some take their anger out on those closest to them. Don’t take it personally. Give your loved one some time and space, and understand that the emotions are coming from the tremendous grief that he feels over having this outrageous and cruel disease of unknown cause.

Facial Expression

When facial muscles are paralyzed, it may be hard to "read" a person’s feelings in his face, as you may be used to doing. You may have to ask the person how he is feeling or work out some other mood-indicating signal.

Some people with ALS laugh when they’re not happy and cry when they’re not sad. Doctors believe this has to do with degeneration of nerve cells controlling these functions. If you suspect that the person with ALS is expressing emotions he doesn’t really feel, check with him about how he is actually feeling. Medications are available to minimize these symptoms.

Medication and Psychotherapy

There are many anti-depressants and anxiety-relieving drugs on the market today, and many doctors prescribe them for patients with ALS. They may help keep your loved one from experiencing the extremes of depression or panic.

Psychotherapy or counseling can be very beneficial, especially in helping family members and the person with ALS understand one another’s feelings — where everyone "is coming from."

Your loved one may test your loyalty by his behavior. If he seems selfish or unappreciative of your help, he may be seeking reassurance of your love and support. Simple statements can assure him that you’re there because you care, that he’s worth whatever you’re going through, that you won’t abandon him.

The person you care for may just need someone to talk to about his fears and other feelings. In some cases, he may not want you to be the one to listen. Help him get involved in an MDA support group or chat room, or talk with someone else who has ALS.

There are other things you can do to lift your loved one’s spirits: Invite a few friends over if he feels isolated. Start conversations about other topics besides the illness. And encourage hope in the possibilities presented by MDA research findings and breakthroughs.

Whatever emotions arise for either of you, and however inappropriately they may be expressed, try to maintain your perspective. Remember that both of you, along with everyone else in your family and close circle, are facing something awful and unfair. But you’re getting through it together, the best you can, because of love.

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Changes in Your Activities and Your Dreams

ALS robs people of their dreams — not just the one who has the disease but the family. Your favorite family activities may no longer be possible. Dreams of vacationing, retiring and growing old together evaporate. Your finances, your sexual relationship, your social circle and your family dynamics all change.

Striking most often in late middle age, ALS is likely to catch a person who is either at the peak of his career or just beginning retirement. If it strikes a parent who’s been at home raising a family, it’s likely to deprive him of the chance to pursue new interests or long-deferred goals.

ALS is a cruel thief of one’s "golden years," whatever one’s plans for them may have been. Of course, sometimes the disease strikes earlier in adulthood, taking with it even more of a person’s dreams and goals, and perhaps leaving more fears about the fate of young children or other dependents left behind.

Even the caregiver’s career can be affected. As you need to be at home more, or even stop working, you may no longer be able to put in the hours and effort needed to stay on top.

ALS sometimes means losing friends. A crisis often measures the real depth of a friendship. Sometimes you can help friends understand what’s changed and they’ll become comfortable in your new circumstances, and even help. But some friends may just be unable to accept the changes or continue their friendship. Often it’s their own fear of death and illness that keeps people away; your situation makes their vulnerability much too clear.

When your "normal" life vanishes, one way to cope is by developing a new definition of normalcy. Some dreams can be put on hold and revived later; some can be replaced with new dreams; some modified. Be alert to new choices you have in defining family roles, pursuing your career or enjoying time together.

For example, maybe you can’t ski or play tennis any more, but you can watch sports on television. Now’s your chance to share other interests like reading, watching videos, working on a collection or exploring the Internet. One caregiver suggests that scheduling something to look forward to each day helps you and your loved one cope by providing a break in the daily routine. This could be a visit with friends, a special TV show, a reading hour or whatever you both especially enjoy. You’ll find new friends at your MDA support group or in an MDA chat room, with whom you can share concerns about ALS.

Your relationship with the person with ALS will slowly change. Over time, you may find it deepening into something unexpected and very rewarding.

 

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Opportunity for Growth

 

Whether or not you belong to a traditional religious community, a crisis such as ALS can offer a tremendous opportunity to grow in character and spiritual depth.

There’s probably no satisfactory answer, either medical or spiritual, to the question, "Why did this happen to us?" Moving beyond that question and accepting what’s happened is the first step toward learning from your experience. Through caregiving, you’ll discover more about yourself and your capacity for work, love and sacrifice. You’ll probably find you can do more than you knew and, in many ways, you’ll appreciate the opportunity ALS gives you for this kind of growth.

Managing your emotions is another important part of finding peace with your situation. Grieve for each loss that occurs, acknowledge that you’re in pain and express your sadness. This frankness will help you to find greater strength and to cope with the next crisis.

Finally, you can share your wisdom. By participating in support groups and befriending other caregivers, you can have the very rewarding experience of helping someone else through the rough times.

One member of an MDA/ALS support group said, "If we look ahead we always say we can’t make it, but you get there and you
do handle it. And when you’ve been there a long time you’re able to offer that help to someone else."