Chapter 6 - Emotions

LEARNING TO COPE

A diagnosis of ALS unleashes powerful emotions for the person diagnosed and for close family members. On receiving the news, most people go through some version of the five steps in the grieving process — denial, anger, bargaining, depression and acceptance. Added to the mix is the fact that ALS is difficult to diagnose. Your emotions may have been on a roller coaster for months, but it’s still a shock when the possibility of having the disease turns into the reality of a confirmed diagnosis.

The topics in this chapter cover some of the primary emotions, stressors and psychological issues that may occur during the ALS journey, along with ways to cope and sources of help.

(Note: If you’re new to ALS, you may want to start with “Grief”.)

Arranged alphabetically, this chapter includes sections on:

ABUSE

In an ideal world, caregivers provide love and care with tenderness and respect, and the loved ones receive each act of care with gratitude and consideration. But because nobody’s perfect, impatience, resentment or other tensions at times may rise between them. For most caregivers and their loved ones, these feelings usually pass or are recognized and dealt with.

But when anger and contempt are out of control, the result may be physical or emotional abuse by either the caregiver or by the person with ALS.

A caregiver’s abuse of the person with ALS can take many forms, including:

• sarcasm
• constant complaints
• noncommunication
• screaming, yelling or swearing at the loved one
• making the person ask several times for help
• poisoning the minds of other loved ones, including children, against the person with ALS
• blame
• accusations of self-pity
• ignoring requests or opinions
• shutting out family and friends
• bullying
• giving unprescribed tranquilizers or sleep-inducing drugs
• refusing to take the person to the doctor or follow doctor’s instructions
• stealing money or valuables
• withholding medication
• rough handling
• physical assault

Needless to say, any type of abuse must be addressed immediately. Sometimes the caregiver needs a respite or a less demanding role, which can be provided by hiring a caregiver for several hours a week or creating a wider circle of people to share in providing care (see Chapter 8). Lack of sleep is a large contributor to abusive behavior; finding nighttime assistance may help a lot. Family or individual counseling is available through churches, hospitals and other sources. Many caregivers benefit from taking antidepressants or anti-anxiety medications.

If the caregiver cannot stop the abuse even after these solutions are explored, then it’s better to leave than to continue the abuse. If no other solutions exist, it may be time to investigate assisted living or a nursing home.

Caregivers aren’t the only potential abusers. Someone with ALS may direct his or her anger at the disease toward the nearest person — the primary caregiver. He or she may make outrageous demands, resist efforts to help, complain about the quality of care. Never hearing “thank you … I love you … I appreciate what you’re doing for me” also can feel like emotional abuse. An abusive loved one adds sadness and pain to the caregiver’s role.

If the person with ALS continues this verbal and emotional abuse, be sure the MDA clinic has checked for dementia or other emotional changes related to the disease. Counseling, a wider circle of caregivers or medication may help. Unless it’s part of the disease process, having ALS is no excuse for rude or hurtful behavior, and caregivers should talk with their loved ones, explaining how they feel and describing behavior they would prefer. This conversation may open the way for a loved one to discuss their own emotions and needs.

Sometimes, when behavioral changes are part of the disease, the only choice is tolerance: A caregiver may love the person enough to ignore the abuse and not take it personally. Those who can’t tolerate the hurt aren’t any less noble — everybody has limited psychological resources, and nobody’s superhuman. It can help to become part of a support group and find other sources of care, even if only for a few hours.

Though ALS forced musician Richard Holland to give up playing instruments, he coped with his situation by using digital technology for composing his music.

Resources

Back issues of MDA publications can be found at www.mda.org/publications, or by calling your local MDA office at (800) 572-1717.

“Crimes Against People with Disabilities,” Quest, May-June 2008

“Rules for the Care and Treatment of Caregivers," MDA/ALS Newsmagazine, February 2005

ACCEPTANCE & COPING

Well-meaning friends may advise stressed-out caregivers to “stay positive.” That’s easy to say, not so easy to do. How a person learns to accept ALS, and cope with it emotionally and practically, depends on many factors, including the individual’s situation, personality, cultural background, resources and time demands.

People have different styles of coping with problems. Some immediately jump in to find solutions; some remain indecisive; some deny or ignore a problem. Knowing your own and your loved one’s coping style will help both of you approach acceptance. Caregivers can build on the strengths of the existing patterns. For instance, for someone who wants to ignore the problem: “Let’s do something fun this weekend and try not to think about the diagnosis; but let’s agree to start talking about it Monday.”

For people with ALS, acceptance may come gradually, in baby steps — “I have to take this medication … I’ll use this wheelchair but only at the mall.” Don’t try to shock the person into acceptance; let them go through it on their own terms.

Acceptance is important; without it people spend energy fighting reality instead of making the situation better. In our minds we know there’s no escape from ALS, but our emotions may need time accepting that truth. When grieving leads us toward acceptance, we can get on with the business of finding help, giving care and making the best life possible with ALS.

People with ALS get uncomfortable with being on the receiving end of help all the time, without the ability to give back. Caregivers can find ways for them to give back — helping with decisions, talking to children, bill paying online — and to reassure them that they’re giving something just by being around. Point out ways they still fulfill roles within the family.

As physical strength declines, it’s hard for people with ALS to accept the gradual inability to “do.” We’re a culture of “doing” rather than “being.” It takes tremendous effort on the part of caregivers to help people with ALS continue to “do” through equipment, help with daily activities and adjustments in activities.

It’s also important to help them learn to “be.” Many with ALS and their caregivers have found the experience an opportunity to develop spiritually and emotionally; to savor time with loved ones; to pray and meditate, revel in nature, enjoy learning and reading, explore their history and their thoughts; and to learn to live more in their minds and hearts as their bodies fail. As your loved one takes these gradual steps toward acceptance, stand aside and let him or her process the emotions and go inward. This will help him or her learn how to just “be.”

One group of students studied ALS caregivers and found five types of coping styles:

• Taking it — being aware that they have no control over the disease and facing events as they occur
• Staying afloat — surviving, tolerating and attempting to maintain normalcy
• Losing ground — dwelling on loss and sadness
• Regrouping — regaining some control by getting assistance
• Holding together — making the most of the situation and adjusting to it.

Most people adopt some combination of these styles, surviving at times, finding new strength at other times, mourning losses as needed. Regrouping is probably the healthiest approach — it means adjusting to changes and finding help through equipment or other people. These styles help to modulate the more powerful emotions — not suppressing or denying them, but not letting them overwhelm either. Modulation can enable coping.

Drinking, overeating, escaping through television, dependence on drugs and the like aren’t good coping measures. They’ll exacerbate health problems and interfere with true rest, only serving to disguise feelings and frustrations. Don’t fall into these traps.

There are some techniques that can help ALS caregivers and their loved ones accept and cope with what the disease is doing.

• Exercise can help caregivers work out some stress and establish a new routine.
• Keeping a journal allows a person to express and explore feelings privately. A journal can’t talk back, and can be an outlet and a comfort.
• Books and movies enable temporary escape from the ALS reality. When page turning becomes difficult, there are mechanical page turners, books on tape and books online as alternatives.
• Soothing music can have a calming effect when someone needs help getting to sleep or overcoming anxiety. Other music is great for stimulation and escaping depression.
• Nature never fails to provide something interesting and calming to watch, smell or hear. Focus on a hummingbird’s flight, the breeze through a tree’s leaves, the changing light during a sunset to find a moment’s escape from problems.
• Meditation is a good coping skill for those with ALS and their caregivers. It can bring peace and relaxation in the moment, and over time can help one develop a more open and accepting view of life. The practice of meditation doesn’t require any specific spiritual belief, and can increase physical energy by dispelling stress. Practiced as little as 10 minutes twice a day, it can improve a person’s overall well-being.

Resources

Back issues of MDA publications can be found at www.mda.org/publications, or by calling your local MDA office at (800) 572-1717.

“Adjust, Adapt and Cope,” MDA/ALS Newsmagazine, June 2007

“ALS: Anyone’s Life Story,” MDA/ALS Newsmagazine, May 2007

“All in the Attitude: Determining Your Quality of Life,” MDA/ALS Newsmagazine, August 2006

“My Perspective,” MDA/ALS Newsmagazine, July 2005

“Survivors Tell Health Care Professionals: Give Us Hope,” MDA/ALS Newsmagazine, July 2004

“The Survivors: What Keeps Them Going,” MDA/ALS Newsmagazine, December 2003

“Readers Respond — Is ALS a Disability or a Fatal Disease?,” MDA/ALS Newsmagazine, February 2003

“ALS — A Disability or a Fatal Disease?,” MDA/ALS Newsmagazine, January 2003

You’re Stronger Than You Think, Tapping Into the Secrets of Emotionally Resilient People, by Peter Ubel, M.D., McGraw-Hill, 2006

Journey Beyond Diagnosis, by Greg Pacini, Reedy Press, 2005

The Art of Getting Well: Maximizing Health When You Have a Chronic Illness, by David Spero, R.N., Hunter House Publishers, 2002

Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being, by Danuta M. Krotoski, Margaret A. Nosek, and Margaret A. Turk, Paul Brookes Publishing, 1996

ANGER

Anger is a more-than-reasonable response to ALS. This disease is a cruel thief that no one can stop. No one deserves it.

But ongoing anger leads to damaging stress, prevents acceptance and can lead to abuse or unhealthy behavior.

Sitting on anger and trying to hold it down usually is ineffective. Some people think that if they open up and let the anger out it will take over forever, but that’s unlikely to happen if approached in the right way. Go somewhere safe and private — the shower, the woods — and feel the anger, let it out physically. Scream about your hatred of ALS and anger at it. Physical exertion such as running or hitting a punching bag also may help dispel some anger. One caregiver’s friends gave her a “damnit doll” made of cloth and stuffing that she could whack on a table whenever she couldn’t contain her anger.

If anger makes you yell or snap at people, apologize and explain that it’s the disease you’re angry at.

The person with ALS also gets angry at the disease; at the loss of physical ability, independence and control; at exhaustion, dependence and every specific loss. Show patience so your loved one can see you coping and continuing to regard him or her as the same person. People with ALS may strike out in anger if those around them aren’t patient enough to understand what they’re trying to communicate, or to take time to help with physical tasks that may take many hours. Being unable to “fix” things also stimulates anger.

For people used to making decisions or controlling others, or those who strongly value their independence, anger may be a primary response to ALS. The caregiver’s acceptance of this anger will help the person gradually become more cooperative with the caregiver, family and the medical team, and stop fighting those who are helping.

In childhood, some males are taught that anger is the only acceptable emotion, so it may be the only one a man knows how to express or even recognize. Similarly, females may have been taught that they never should show anger, and in adulthood a woman may have trouble even realizing she’s angry, and have to learn ways to acknowledge and express it.

Caregivers may feel angry for the same reasons as the person with ALS. In addition, they may feel angry at the loved one at times, no matter how devoted they are, because they feel abandoned or burdened. These feelings are normal, and they’re part of a displaced rage at the disease; in time, they’ll be incorporated into a wiser, more patient view of the situation.

Fatigue — a familiar state for caregivers — shortens patience and control. Try to make it clear that you hate ALS, not the person with it. If anger becomes overwhelming, look for counseling or care assistance before it escalates into abuse.

Manage anger by gathering information about ALS and what can be done about it. This decreases helplessness and gives specific tasks to focus on instead of anger. Forgive yourself for having some crabby days; it’s only human. Other anger management strategies include: practicing relaxation techniques such as meditation; talking with a trustworthy friend or counselor; or including enjoyable activities such as shopping, movies or sports in your schedule. There’s nothing like focusing outside yourself to dampen the intensity of your feelings.

ANXIETY

Anxiety is a feeling of apprehension and fear often characterized by physical symptoms such as palpitations, sweating or tension. Anxiety, which may arise at the time that denial is breaking down and the reality of ALS is setting in, also may manifest as restlessness, fear of suffocating, fears of specific situations, trembling, shortness of breath, dry mouth, dizziness, nausea, irritability, obsessive worry, loss of sleep and inability to concentrate. In an anxiety or panic attack, these sensations take over and persist for more than a few minutes.

In a person with ALS, panic or anxiety sometimes is related to breathing issues or position; (see Positioning and Just Breathe to address these issues).

For caregivers, stress can bring out anxiety symptoms as events seem overwhelming. A person may feel abandoned, endangered, very vulnerable. Deep breaths, calming and assuring words, and recognition that this is a passing sensation, may help get through the immediate crisis.

Continued anxiety may require periods of respite for the caregiver; and, for both caregiver and the person with ALS, counseling or anti-anxiety medications such as lorazepam (Ativan), alprazolam (Xanax) or diazepam (Valium). Some antidepressants also have anti-anxiety effects, while others, such as bupropion (Wellbutrin), can actually increase anxiety. Talk to the doctor to figure out which will work best.

Respite for a caregiver can be a weekend or few days away, or it can be as simple and brief as taking a short walk, playing some favorite music, gardening, taking a bubble bath, shopping, meditating, or getting a hug from a friend. Learn to recognize when you need a break; even 5 minutes here and there will help.

ATTITUDE

“Keep a positive attitude” is a cliché, and, like most clichés, it begins in truth. Any time a caregiver or care receiver can focus on finding solutions, and believes a solution is at hand, emotions will be less extreme, and stress will be abated.

Yes, you can change your attitude. Thoughts affect emotions; that’s the basis of cognitive therapy offered by psychologists. By redirecting or adjusting the things you say to yourself, you can alleviate some stress.

Obviously, it’s necessary — and unpleasant — to face the reality of ALS, and to do realistic planning and problem-solving. But when stressful, negative thoughts become obsessive, and you frequently find yourself overcome with negativity, it’s time to change your thoughts for your own mental health.

For people with ALS and/or their caregivers, negative thoughts may fit into three categories:

• Reminding yourself of the disease and that the loved one will never recover
• Thoughts about limitations and losses
• Fantasies of terrible things that await in the future

These thoughts can be altered or shut off. When you notice yourself caught up in negative thinking, consciously change the message you’re giving yourself. You might say to yourself, “I’m going to stop thinking about this and instead I’m going to think of (or do) something else.” Or you might challenge yourself to “look for the good in this,” or to explore some solutions.

Remind yourself that no one knows for sure what the future holds, and that future events rarely turn out to be as bad as imagined. Consciously bring your thoughts back to the present.

Many people find relief, gratitude and renewed strength in counting their blessings at such times, not overlooking even the smallest one. Or you might simply start singing a favorite song to put your mind back in a positive place.

You aren’t in denial — ALS is still there and you’re still dealing with it. But you’re strengthening your positive attitude and re-affirming the belief that “together we’re going to have a life that matters, a life to enjoy, despite this disease.”

Some physicians, backed by studies, believe that the positive attitude or “fighting spirit” of a person with a medical crisis helps diminish symptoms or increase survival. Faith that there’s a purpose for the disease, or that you’ll have a good life despite it, can contribute to a more peaceful experience. Acceptance, or by contrast, determination to defeat the disease, all can be emotionally — and sometimes physically — strengthening.

BURDEN & REWARDS

Long-suffering caregivers may say, “Oh he’s no burden. I love him,” and mean it. But caregiving is a burden, or rather a huge pile of burdens. The load can be very hard to carry at times, and every caregiver has days when they just can’t find the strength. It’s better to acknowledge these times than to pretend you can do it all or that it’s no trouble.

Smart caregivers get all the help they need to manage the chores and responsibilities that caregiving brings. Throughout this book, there’s information about equipment, medication, medical procedures, agencies, people and other resources that can help, especially in Chapter 8. Always remember that it’s ALS putting the burden on you; your loved one isn’t the burden.

The burden is a bit lighter for caregivers who can unload resentment, anger, guilt and other negative emotions. Exhaustion, fatigue and stress will occur at times. Don’t minimize the emotional and physical demands of the caregiving role. Fatigue weakens the body’s immune system and makes caregivers more susceptible to illness. Poor eating and sleeping habits, stressed joints from lifting, and the risk of developing serious illnesses such as a heart condition or high blood pressure have been documented in longtime caregivers.

There are benefits to long-term caregiving as well — greater intimacy, increased patience, knowledge that you’re needed, and gratification that you’re making someone you love happier, secure and comfortable. A recent study of caregivers of people with Alzheimer’s disease showed health benefits associated with helping others, especially when the caregiver and care receiver share a close relationship. “Caregiving is often a joyful and beneficial experience for the one who gives,” the researcher found, especially “when provided with proper respite and support.”

CAREGIVER EMOTIONS & STRESS

In some ways, ALS is harder on the primary family caregiver than on the person with the disease. One study showed that, over several months, family caregivers of people with ALS reported a significant increase in depression and a sense of being burdened. In contrast, their loved ones with ALS didn’t report a change in their quality of life or an increase in their level of depression. Lack of time for oneself was the main source of caregiver dissatisfaction.

The big umbrella over all caregiver emotions is stress. Stress occurs when there’s a perceived discrepancy between the demands of the situation and the ability to meet those demands — I just can’t handle all this! It’s made worse by fatigue, worry, ever-increasing demands, illness — and it’s an inevitable part of caregiving.

Stress in small doses actually increases energy and the drive to get things done. But it can become overwhelming to the point of illness or inability to give care.

Signs of stress include:

• inability to concentrate
• unexplained crying
• short temper
• physical symptoms like pain or throwing up
• nightmares
• sleeplessness
• irrational fears
• nervous habits
• constant worry
• mood changes
• sweaty palms

(Stress has some of the same symptoms as anxiety, but in anxiety there’s an overwhelming sense of fear or dread.)

A family may have unique circumstances that add even more stress to the daily tasks of ALS caregiving — other conflicts, illness or disability in the family; financial problems; abuse; family disagreements about care; family members far away or kids preparing to leave for college. Even happy changes like weddings, graduations or births can feel bittersweet, or can add to the burden of chores.

If a caregiver is holding a job, raising children, concerned about aging parents and taking care of someone with ALS, the day simply isn’t long enough. Sleep may become a luxury, making caregiving harder and stress greater. (See “Sleep Deprivation”.) Despite exhaustion, sometimes the mind can’t slow down even in bed and the caregiver lies awake. Stress has reached the boiling point when the caregiver can’t sleep for several nights in a row; gets too sick to perform the duties; takes out frustrations on others, including the person with ALS; or just “falls apart.”

But, as one caregiver pointed out, the mental and emotional anguish felt by those with ALS and their caregivers is the one ALS symptom that can be reversed, or at least controlled to a large degree. Another caregiver says the keys to getting the job done are preparation, flexibility and a sense of humor. When you’ve lost those capacities, you’ve got to R.E.C.H.A.R.G.E.

R: Rest.
E: Eat right.
C: Communicate your needs to others.
H: Hydrate. Drink lots of water.
A: Accept help.
R: Respite.
G: Get enough sleep.
E: Exercise.

It’s OK to let the loved one know that you’re stressed; try to do so in a way that doesn’t provoke guilt for being the cause of the stress. Make it clear that ALS, not the person you love, is the source of exhaustion and pain. Your loved one may be able to console and support you — with thanks, with ideas — and that can go a long way toward lightening your load.

One caregiver comforts herself with the thought that if she had ALS, she’d want her husband to give her as much care as she’s giving him. She can do no less. Other ways to manage stress include:

• Find a support system.
• Schedule some time away from the person you’re caring for.
• Practice relaxation techniques.
• Get medical help for sleeplessness, anxiety, depression or other painful emotions.
• Acknowledge the enormity of the caregiving responsibility and take credit for doing it well.
• Stay away from other people who increase stress, if possible.

Here are some specific techniques to help with sleep and relaxation of the mind:

• Fill your bathtub ankle deep with cool water and march around in it for a few minutes.
• Visualize something peaceful like dancing butterflies.
• Try herbal teas or capsules like Kava Kava or St. John’s wort.
• Put thoughts into a journal, or start writing a poem to refocus negative thoughts.
• Wiggle your toes.
• Listen to a tape or CD with sounds of nature like water flowing, rain falling and ocean waves rolling onto shore.
• Meditate.

Here’s another simple relaxation procedure that takes only a few minutes:

1. Find a comfortable, quiet place. Sit with head, arms, legs, neck and back supported, shoes off and clothes loosened. Close your eyes.
2. Take a deep breath and hold it. Be aware of the muscle tension in your chest. Slowly exhale and notice the chest muscles relaxing. Repeat.
3. Perform step 2 focusing on different parts of the body, starting with the toes and moving upward to the top of the head.
4. Slow your breathing even more. Let your mind wander to a peaceful image.
5. Remain in this relaxed state for several minutes.
6. Return to the present by counting slowly from 1 to 5.

If there isn’t time to go through the whole exercise, the technique can help at odd moments during the day. Close your eyes and take a deep breath. Tense and relax the muscles in one part of the body.

Resources

Back issues of MDA publications can be found at www.mda.org/publications, or by calling your local MDA office at (800) 572-1717.

“Caregivers May Be More Discouraged Than People With ALS,” MDA/ALS Newsmagazine, May 2007

“Writing About Events May Lower Caregiver Stress,” MDA/ALS Newsmagazine, February 2004

Health AtoZ
www.healthatoz.com
Search for “caregiver” for several articles on maintaining health.

Meditation for Beginners: Six Guided Meditations for Insight, Inner Clarity, and Cultivating a Compassionate Heart, by Jack Kornfield, Sounds True, 2004

Caregiver’s Reprieve: A Guide to Emotional Survival When You’re Caring for Someone You Love, by Avrene L. Brandt, Ph.D., Impact Publishers, 1997

The Miracle of Mindfulness: A Manual on Meditation, A Zen Master’s Method of Meditation, Concentration, and Relaxation, by Thich Nhat Hahn, Beacon Press, 1987

CHILDREN

The children close to a person with ALS emotionally respond to the diagnosis in their own ways, depending on their age and other factors in their lives. Each child’s emotional process of reaching acceptance should be respected, and their questions answered in age-appropriate language.

Rather than simply telling children everything you know about ALS, neutrally bring up the subject and let them ask whatever is on their minds. You’ll know how much information children are ready to hear by honestly answering their questions and then stopping. Sometimes they’ll ask more questions; sometimes their curiosity is satisfied and they’ll drop the subject. Take a moment to figure out what the child is asking. Why can’t Mommy come to my soccer game? may be a question about ALS, or it may be a question about finding ways to spend time with Mom.

Children know when something’s going on in the household, and they’re disturbed when parents seem to be keeping secrets. Parents may want to wait until their own emotions are under control before discussing ALS, but it should be brought up when ALS changes become noticeable. Questions such as Why does Grandma fall all the time? … Why can’t Daddy ride bikes with me? mean it’s time to open up the subject for discussion.

Young Children

Explain the disease and the situation in simple terms. Daddy has a sickness that makes some of his muscles weak. We may have to help him sometimes when his legs and arms aren’t strong.

If they’re interested, you can tell them the name of the disease and a simple explanation of how it works. A telephone analogy might help: The brain calls up the muscles to tell them what to do; the message goes through nerves, like telephone wires. Sometimes if the wires are broken, the muscles never get the message, so the muscles don’t work.

Follow the child’s lead and don’t explain more than they’re asking to hear. Take your cues from the child as to how much he or she can digest at a time.

Speak matter of factly, and try to convey the overriding message: We are all going to get through this together.

Answer all questions at the child’s level. In children under 10, the first reaction to hearing that a parent or grandparent has a disease is often fear. Can I get it? Is he going to die? Will someone still take care of me?

If the kids start to cry or show their fears, address those feelings honestly. I know this makes you sad. It makes me sad too. But Dad is still here with us now, and he still loves us just the same. It’s OK to cry when you’re scared or sad. Mom and Dad cry about ALS sometimes, too.

Give reassurance that no matter what happens, they are loved and always will be cared for. The outside things may change (such as the loss of physical abilities) but the inside feelings won’t change.

Show that you’re strong enough to talk about ALS even if it makes you cry sometimes. This prevents kids from thinking they shouldn’t ever bring it up for fear of upsetting you, and lets them know it’s OK for them to cry too.

If a child is caught up in tears or shies away from the loved one, it might be due to fear or guilt. No, honey, you can’t catch ALS from Grandpa. And he didn’t get ALS because of anything you or anybody else did. It’s not because you left your toys on the floor at his house. It’s a disease and we don’t know why it happened but sometimes it does.

Some kids may shrug off the news or seem uninterested. Let them process the information at their own speed. Although you can’t force quiet children (of any age) to talk, you can let them know they’re welcome to ask questions or share feelings whenever they want. Take advantage of private times, such as when driving in the car, to offer them the opportunity to talk if they want.

Explain each new piece of equipment or change in the household as a way to help. Make it seem interesting and really wonderful (which it is!) that Dad has this wheelchair so he can go places. As each physical change occurs, remind them: There are many ways we can help Dad, and lots of good equipment to help him eat and breathe and talk.

Keep family life as normal as possible: Go to church, get the kids to school on time, visit relatives, go to restaurants, continue to discipline and express expectations of the children. Observe important milestones in the kids’ lives — birthdays, school plays, soccer games — just as before, so they’ll know they’re not any less important.

Children pick up on their parents’ tone of voice, unspoken feelings and actions as much as their words. Let them see the loved one participating in family life; the caregiver helping cheerfully; problem solving; and lots of hope and confidence. Suggest ways they can show their love — draw a picture, visit, make a craft, write a card/note, pick flowers, watch a movie together, etc. For a parent, helping around the house means a lot.

Children whose routines are disrupted may display developmental regression: need for a security toy or blanket; bed wetting; finger/thumb sucking; need for more frequent cuddling, etc. The response should be reassuring: I see you’re carrying Blankie again, and that’s OK while you need it. When you don’t need it, we’ll put it away again. Teasing or shaming the child for using familiar comfort objects only increases anxiety.

(Also see “Parenting”.)

Older Children & Teens

Older kids, 10-18, will feel some of the same fears as the younger ones. However, they’ll have a better understanding of the disease and awareness of its seriousness.

They may resent not being the center of attention, or conversely, may want to help as much as possible. More than a million American children provide some care for a chronically ill or disabled family member. Older kids can help with simple things like tying shoes or reading to the person with ALS. They also can help with more complex chores like cleaning feeding tubes or suctioning trachs.

Kids even may come up with some adaptations to make it easier to transfer Dad into the car or feed himself. Thank the child for being so thoughtful; use the suggestion if it isn’t dangerous, and the child will feel the contribution is important to the family.

Take older kids to a clinic visit so they can ask questions of the doctor, nurse or social worker. That will acknowledge that their experience with ALS is important.

Sometimes a child expresses anger at the person with ALS, or says something like I wish she could walk. Just acknowledge that sentiment. Yes, it really stinks. But that’s the way it is in our family and we’re making the best of it.

Not infrequently, older children feel embarrassed about the way the person has changed physically, or when people stare at the power wheelchair, vent mask or communication device. Suggest that really close friends will understand if you tell them about ALS and explain that, underneath, the person is just the same as he or she used to be.

Life and death questions don’t have to be addressed at the beginning, but at some point a child — especially one who’s done his own research — will want to know if the loved one is going to die.

A possible answer: No one gets completely well from ALS, and sometimes it gets dangerous because it keeps people from breathing. We’re going to do everything to help Mom, but someday her body may get so weak she can’t keep going. Right now, Mom still wants to help you with your homework and hear about your day. It makes her really happy when you spend time with her, and she loves knowing that you’re having fun and doing things you like.

Encourage kids to talk to adults about their fears or worries — either their parents, an aunt or uncle, or someone else they trust. Ask at the ALS clinic about family counselors who can see family members individually and as a group.

Adult Children

Most family caregivers are spouses, but sometimes an adult son or daughter becomes the primary caregiver of a parent with ALS. (At other times, a parent must care for an adult offspring who has the disease.)

The need to care for a parent can be very disruptive to a busy adult’s life. Just when a person wants to give attention to children or career, or to enjoy the prime of life, they’re pulled back into the old role of child, but with more complications. An adult child may have to relocate and set life aside for a while. That’s a lot to ask, but no one else can be sure a mother or father is cared for the way their own child can. (For those who can’t relocate, see “Long-Distance Caregivers”.)

Parents and children often reverse roles as the parent ages, and there’ll be some role reversal in ALS even if the parent is only middleaged. To the extent possible, savor the time with the parent, and live day by day. Find out how she’d like to spend her time and plan some fun things to do together while she’s still able. The parent will appreciate the devotion, and children can be glad to return the care they received in childhood.

Caregiving situations can highlight unresolved conflicts between parent and child. Distrust, disrespect or resentment may be part of the caregiving experience. Knowing that this time is precious for both parties, that now is the time to forgive and forget, can help do away with old business. Try not to relive old conflicts, but lightly say, “I guess I was a handful sometimes. I’m sorry if I hurt you.” That may be all that needs to be said.

Some parents will find it ludicrous that their child is telling them what to do, so press advice gently. Remind her that the doctors at MDA clinic said she’d be better off using a walker, or a feeding tube. She may resist at first but eventually come around. The adult child may have to work for a while to get the parent to open up financial records and discuss end-of-life plans; plant these seeds and say you need to know what he or she would want before a crisis strikes.

Humor helps in a lot of frustrating and difficult situations. Be openly affectionate with hugs, massages, foot rubs, hair brushing or shaving. These are soothing ways to communicate affection and tenderness.

In rare cases, a teenage child becomes primary caregiver for a chronically ill parent. Between high school or college classes, she’ll rush home to provide care or see to the younger children. “I can’t totally abandon my mom,” one 18-year-old said. “She needs me.” This huge responsibility can be incredibly stressful on some young caregivers, leading to antisocial behavior, illness, isolation and postponement of dreams. Other teens blossom with the responsibility; this is more often the case when parents make sure the teen still has time to be a teen as well as a caregiver.

If you’re in that situation, see the social worker at your MDA clinic and ask where you can find help. There should be support through the social services system, which someone familiar with ALS can help negotiate.

Resources

Back issues of MDA publications can be found at www.mda.org/publications, or by calling your local MDA office at (800) 572-1717.

See “Parenting” and “Guardianship”.

“When a Parent Has ALS: Tips for Helping Children Cope,” MDA/ALS Newsmagazine, March 2008

“Talking to Your Kids About ALS,” MDA/ALS Newsmagazine, April 2007

“Kids and ALS,” MDA/ALS Newsmagazine, April 2005

My Grampy Can’t Walk, by Vanita Oleschlager, Cleveland Clinic Press, 2006

Bigger Than the Sky — the True Love Story of Emilie and Her Grandfather, by Helene E.D. Nichols, Xlibris, 2003

ALS — Lou Gehrig’s Disease, by Mary Dodson Wade, Enslow Publishers, 2001

Are You Tired Again? I Understand: An Activities Workbook to Help Children Understand and Live with a Person Who Has a Chronic Illness or Disability, by Marilyn Weisberg Deutsch, Ph.D., Western Psychological Services, 1998

Why Do Some People Use Wheelchairs?, Dorling Kindersley Publishers, 1997

ALS Society of Canada
www.als.ca/als411
Child-friendly resources, including booklets for children, teens and parents such as “When Someone Special Has ALS.”

March of Faces
www.march-of-faces.org/KIDS/moe1.html
Interactive presentation for young children

“Telling Kids about ALS/MND”
www.alsindependence.com

DEMENTIA

Although older literature suggests ALS doesn’t affect cognitive functions, more recent evidence indicates that thinking and behavior change in many people with ALS. Usually these changes are very mild (see “Cognitive Changes”). Occasionally, uncharacteristic behavior or emotional reactions out of proportion to the situation can indicate frontotemporal dementia, a condition that affects 3 percent to 5 percent of those with ALS. Sometimes the person with ALS has such extreme moods and behavior that it’s abusive or unmanageable. He or she may seem to be a different person. (See “Abuse” and “Anger”).

When dementia is suspected, try not to take outbursts personally. The person with ALS has no more control over this behavior than over breathing or swallowing problems. One caregiver whose loved one frequently accused her of incompetence handled outbursts this way. “I agree with him that I certainly have my shortcomings but I reassure him that I do love him and I am trying. I try to be an instrument to show him love without condition and just for who he is, despite his behavior.”

Medications used in dementia include amitriptyline (Elavil) or fluvoxamine (Luvox). Others are being tested. Trained home health aides may be able to help manage the person’s behavior.

It may be impossible to maintain the person at home if the behavior is damaging to the caregiver’s or family’s well-being and safety, or results in destructiveness. See Chapter 8 for information about nursing homes.

Resources

“Avanir Meets with FDA on Zenvia,” MDA/ALS Newsmagazine, April 2007

“When ALS Affects the Mind: Organization, Medication Help,” MDA/ALS Newsmagazine, February- March 2005

DENIAL & HOPE

Denial usually is the first stage of grief, and it serves a purpose. Early in a crisis, thinking “This can’t be true” helps ease the mind from shock, while the reality slowly sinks in. A degree of denial can be a way of holding on, by looking for the hopeful message in any news — maybe it won’t be as bad as they say; maybe there will be something to help or fix this problem.

The determination to find a cure, or to be the one who survives against the odds, could be seen as denial. But this kind of determination also fuels and arms people for the daily fight. If a focus on finding a cure causes caregivers to ignore daily needs, then it’s gone too far. Denial is the opposite of acceptance, the stage of grief or crisis management in which people can function and deal with problems.

As with most psychological states, danger occurs when denial shuts out the possibility of emotional acceptance. If a patient or caregiver refuses to admit that the person has ALS, they may neglect to take the steps to ensure proper care. Denial can keep a person from using a wheelchair or ventilator until great, irreversible damage has been done. It may keep the person from planning for guardianship of children, making a will or advanced medical directive, or discussing assisted ventilation options. A person in denial can’t make a life with the disease, and the denial doesn’t affect the disease course.

When family members can’t accept the diagnosis or the need for assistive equipment and life changes, conflict is set in place. Those in denial may accuse the person with ALS of not trying, may seek out unqualified medical opinions that agree with their interpretation, or may refuse to accept support or information. This kind of denial usually occurs because accepting the diagnosis is too painful; eventually they may come to accept it. Many experts — social workers, hospice teams, other families with ALS — have experience dealing with those in denial. They can help guide family members to the truth while maintaining hope.

Denial is a normal, initial part of the grieving process, and it’s healthy to move past it in stages, as each aspect of the disease is accepted. It’s also reasonable always to hold onto hope, although the things you hope for will change over time.

Caregivers often deny how hard their role is. Wanting to do the best they can for someone they love, they believe they can hold onto their jobs, give appropriate attention to children and family, and provide care to the loved one with ALS, no matter how much is required. This is a formula for burnout. Experienced caregivers always emphasize: Get the help you need. Getting help doesn’t mean your contribution is any less important or that people will think you’re lazy; it shows you care enough to plan for the long haul.

Moving out of denial doesn’t mean accepting the worst prognosis. ALS isn’t completely predictable, and in general people are surviving longer with it. Keep up hope; it’s a necessary part of survival with a good quality of life. Knowing that research is progressing, that some people reach a plateau with ALS, that some survive for decades, that eventually you will reach a new balance in your life, can provide strong emotional support on the ALS journey.

Resources

“Life Satisfaction Similar With and Without Disability,” MDA/ALS Newsmagazine, July-August 2007

“Building Hope One Brick at a Time,” MDA/ALS Newsmagazine, October 2006

“Staying Alive — Does Personality or Belief Make a Difference?” MDA/ALS Newsmagazine, November 2004

DEPRESSION

Depression is an organic condition involving brain chemistry. It affects thoughts, moods, feelings, behavior and even physical health. Sometimes it occurs for no apparent reasons; other cases, called situational depression, arise when bleak circumstances occur in someone’s life. Depression can be a coping style, or a stage of grief in which people get stuck. About 10 percent of Americans have clinical depression, which needs medical attention. Among longtime caregivers, the incidence of clinical depression is at least twice that high.

Weakness of facial muscles may make a person with ALS appear expressionless or depressed, no matter what real feelings are going on. Other forms of communication are needed to find out if the person is really depressed or simply can’t smile or show true feelings.

Oddly, some studies have shown that people with advanced ALS are no more likely to have depression than people who don’t have the disease. Caregivers are more likely to be hit by depression than those they’re caring for. Nonetheless, many people with ALS do require antidepressants. Watch for these signs of depression in the person with ALS and the caregiver.

Signs of depression include:

• persistent sad, anxious or empty mood
• diminished ability to enjoy once pleasurable activities or people
• restlessness or irritability
• quick agitation or anger
• changes in sleep patterns
• changes in appetite or eating patterns
• unexplained crying spells
• loss of sex drive
• decreased energy level and constant fatigue
• slowed movements
• difficulty concentrating, remembering or making decisions
• feelings of sadness, hopelessness, helplessness, worthlessness
• ongoing physical symptoms that don’t respond to treatment, such as headaches or digestive disorders
• recurrent thoughts of death or that life isn’t worth living

In such a state of mind, the demands of caregiving easily will overwhelm anyone. A caregiver may be unable to summon the will to act. If any combination of these feelings lingers for more than a few weeks, get help. To fight off mild depression or “down” moods, try exercise, laughter, friends, escape from routine, an enjoyable activity, counseling. If those don’t work, ask the doctor about antidepressants.

The good news is there are many excellent antidepressants in the physician’s arsenal. They may be the only way to blast oneself out of inertia and return some energy and zest for living. Antidepressants may take 10 days to six weeks to become fully effective.

Doctors can go over the various types of antidepressants and help decide what works best. Some have side effects; sometimes people need to try one, then switch to another, until the best choice is found. Some that people with ALS and their caregivers have found to be helpful are Lexapro, Zoloft, Prozac, Wellbutrin, Celexa and Lyrica.

Research indicates that a combination of medication and counseling are more effective against depression than either alone. Counseling can help a person talk over or resolve issues about the meaning of one’s life, relationships or past actions. Many people take a round of antidepressants and feel better, then stop taking the drugs. In several months, they spiral down again. This isn’t a failure — this is the nature of depression. If you need to take them a second time or for several years, do so.

Do whatever it takes to return some joy and energy — caregivers and people with ALS need all of those commodities they can find. The fatal effect of depression is loss of any enjoyment of life, and thus loss of the will to live. It isn’t something to take lightly.

Resources

Back issues of MDA publications can be found online at www.mda.org/publications, or by calling your local MDA office, (800) 572-1717

“Depression Doesn’t Dominate in ALS,” MDA/ALS Newsmagazine, September 2005

“Reducing Caregiver Stress May Help Loved One’s Depression,” MDA/ALS Newsmagazine, February 2003

“Tips for Caregivers: Handling a Loved One’s Depression,” MDA/ALS Newsmagazine, September 2002

Living Longer Depression Free: A Family Guide to Recognizing, Treating and Preventing Depression in Later Life, by Charles Reynolds, Johns Hopkins University Press, 2003

Chronically Happy: Joyful Living in Spite of Chronic Illness, by Lori Hartwell, Poetic Media Press, 2002

Understanding and Overcoming Depression: A Common Sense Approach, by Tony Bates, Crossing Press, 2001

Depression and Physical Illness, by Andrew Steptoe, Wiley, 1997

FAITH

Faith is a great help in living with ALS. Faith can come from a traditional religious belief or from a belief in a well-meaning universe, the cycle of life, 12-step groups or any other school of thought that helps one make sense of life. Faith, like other states of mind, can’t be imposed on a person, but many people going through a crisis like ALS find themselves returning to prayer or other religious practices they’ve abandoned, or exploring their thoughts to recover their faith.

“Having faith” doesn’t mean believing in miraculous cures. It’s an internal experience that provides comfort, strength and meaning, and a place to turn when things are hard.

Resources

Including People With Disabilities in Faith Communities, by Erik W. Carter, Brookes, 2007

Faith in Action
Robert Wood Johnson Foundation
[877) 324-8411
www.fiavolunteers.org

FAMILY

Tolstoy wrote that every unhappy family is unhappy in its own way. Just imagine what happens when you add something like ALS to the complicated world of a family. When ALS is diagnosed, it’s in the context of the person’s immediate life and family, including extended family and other relationships. Everyone in that family will have a personal experience of grief and adjustment, going through many of the emotional difficulties described in this chapter. A crisis like ALS usually brings out people’s true colors. If it’s a normally cooperative family, they’ll work together to face ALS; if there are conflicts and competitions, those will dominate relationships and attitudes.

One person — usually the spouse, though sometimes a parent or an adult child — becomes the primary caregiver of the person with ALS. Expecting every member of the family to agree with and support the caregiver’s decisions and methods isn’t realistic. It’s said that families rally together in a crisis, and sometimes they do. It’s probably more truthful to say that family members relate to each other on the ALS journey in the same ways they’ve related before.

You may find support and love in unexpected corners, and some relatives will be wonderfully helpful. Extended family members also may offer constant criticism, unwanted advice, denial or “miracle” cures; they may refuse to learn anything about ALS or simply be unable to understand the information; they may resent the new friends and support systems the person with ALS and caregiver have found.

Among the worst responses, family members may refuse to assist with caregiving, and even sabotage the system the primary caregiver has worked out. They’ll never visit, or even break off communication. An exhausted caregiver can feel powerful resentment and anger at this hurtful response. The only constructive thing to do is remind them that the person with ALS especially needs their love right now, then let go of any expectation of cooperation.

Be grateful for those family members who are willing to help, and forget the uncooperative ones. Sometimes an in-law or sibling is determined to oppose the caregiver, for some longstanding reason or because they simply can’t face the reality of ALS. Forgive them and get on with your life. It’s not uncommon for caregivers to get more support from friends than from family members.

Also see “Children,” “Marriage” and “Friends”. See Chapter 8 for ways to encourage family members to help.

FEAR

ALS raises many kinds of fear — fear of losing control, of pain, of death. Fear that other loved ones will have the disease. Fear that the caregiver won’t have the strength to cope, or won’t know what to do.

People with ALS may fear that they aren’t the same person as before the disease, and that others won’t respect, need or love them if they change. Caregivers can reassure a loved one that they hate what the disease is doing but that their love always will remain, and that they’ll always be there when they’re needed. Caregivers may have to repeat this message many times in many different words, but gradually it will help calm fears.

Some caregivers constantly are afraid for the loved one’s safety, concerned that a respiratory crisis, panic attack or choking fit may occur when their backs are turned. Reasonable precautions (see “Safety”) and good assistive equipment should minimize the possibility of a sudden crisis. If the loved one has a way to communicate when needing help — a bell or buzzer — the caregiver can be reached quickly.

Fear can destroy a person by leading to worry, sleeplessness, panic or stress. The best antidote is information and a practical approach of dealing with each step as it comes.

Just recognize fear as it arises, and envision yourself picking it up and throwing it in a trash can, or walking around and past it. The less attention you give it, the less power it will have. Keep your goals in mind — solve the problem of the moment, enjoy something today even if it’s only a look out the window at a blue sky. Turn to others in a support group or online group for reassurance. When the mind and hands are fully occupied, there’s less room for fear.

FRIENDS

Friends’ responses to ALS will be varied. Many friends will truly care about your loved one’s well-being but perhaps not know how they can help or relate to the person.

Some families are disheartened to find that friends disappear as ALS advances. There are several reasons why friends and family members sometimes seem to shun a family going through ALS:

• Most people aren’t familiar with ALS, and don’t know what to expect. They may feel too sad or upset to face a friend in a changed condition. They may fear the friend has become different, or that they’ll lose their composure, or that they’ll tire out the person with ALS. Many worry they won’t know what to say.
• Friends from work may have nothing else in common when the person with ALS leaves the job.
• People who know a person as active and energetic may prefer to remember him or her that way.
• The person with ALS may be self-conscious about looking different to friends, or about a speech difficulty. He or she may discourage visits.
• Sometimes people want to help but are afraid they’ll be asked to lift the person or assist in the bathroom.

These steps can help to allay fears and keep some friends involved:

• After the diagnosis is made, notify key friends and family members. Send them information about ALS or refer them to MDA’s ALS Web site, www.als-mda.org, for information about the disease.
• Send out an e-mail every month or so to report on the loved one’s condition or activities. Use this as a place to list tasks for volunteers. Another communication option is the CaringBridge Web site (www.caringbridge.org) that automatically e-mails a list of people whenever you post an update.
• Remind people that their friend is still the same person — not someone who’s sickly or unaware of surroundings. He or she may look, move and communicate differently, but has the same interests and cares about the same people as before.
• Suggest that, during a visit, friends talk about sports, politics, movies, children or anything else that interests them. They don’t have to dwell on the disease. If speech is slurred or a communication device is being used, a friend who has the patience for a slow-moving conversation is a real gift.
• Invite friends to watch a ball game or DVD, to play board games or eat pizza. Activities present less of a conversational challenge.
• Friends can bring books, easy-to-swallow homemade dishes, or anything they think their friend might appreciate. Humorous books and CDs might be especially welcome. E-mailing news and jokes can keep relationships going if visits aren’t feasible.
• Schedule friends’ visits so people don’t come all at once and exhaust the person with ALS.
• Let those who want to help know there are many ordinary chores and errands they can perform. See Chapter 8 for more ideas.

Caregivers can ask their friends to keep in touch in similar ways. Meeting for coffee or going to a movie gives the caregiver a break and keeps friendships going. The caregiver may have to take the initiative; friends may be unsure whether the caregiver has any time or what activities are appropriate.

Some friends will lose touch and social networks will dissolve. But friends are needed to fight off loneliness, and new ones will be found. People who’ve been through similar ordeals or church groups may become more important. ALS support groups and other families met at MDA clinics will turn out to be important — they understand the ALS challenges and can offer specific support.

Resources

Bedside Manners: A Practical Guide to Visiting the Ill, by Katie Maxwell, Baker Book House, 2005

GRIEF

ALS is a powerful loss for which grief is appropriate. Many families find the first six months after an ALS diagnosis are the most emotionally devastating time of the entire experience; in later stages there’s more time to prepare for losses.

It takes time to accept the reality of ALS and get ready to play the hand you’re dealt. Each person will experience this psychological journey on an individual timetable, and with various degrees of intensity. Sometimes the stages of grief — denial, anger, bargaining, depression, acceptance — occur in a different order, or recur several times.

Caregivers need to be patient as they and their loved ones and family members sort through these painful emotions.

Caregivers experience their own losses, beyond those affecting the person with ALS. They have less time available for other family members, and certainly less time for themselves. Caregiving is physically demanding and may lead to, or exacerbate, physical problems or illness. ALS often becomes the family’s financial priority, overshadowing dreams of a new home, special vacations or a comfortable retirement, not to mention ordinary luxuries like movies or new clothes. Many caregivers must give up jobs or careers in which they’ve worked hard.

With unexpected changes in career, parenting, health and financial plans, the caregiver’s life is turned upside down and redefined. Deep grief is natural; never think you aren’t strong enough or shouldn’t be feeling what you feel. Let the feelings come; cry and grieve the losses. Only after the pain is acknowledged can the caregiver fully focus on caregiving.

Even after one reaches some level of acceptance of the diagnosis, the emotional roller coaster continues. Every loss by the person with ALS or caregiver — walking, working, eating by mouth, breathing independently, changes in the relationship, conflicts with friends and family, financial distress, etc. — can bring its own powerful grief.

Knowing in advance that strong emotions will continue to pop up even when you think you’re over them, can make the next bout a little easier and a little shorter than the first time. As you grow in experience and knowledge, you’ll learn what coping strategies to use as needed.

Resources

Back issues of MDA publications can be found at www.mda.org/publications, or by calling your local MDA office at (800) 572-1717.

“In the Beginning,” MDA/ALS Newsmagazine, February 2007

“10 Tips for New ALS Patients,” MDA/ALS Newsmagazine, March 2004

GUILT