Acceptance and coping
Burden and rewards
Caregiver emotions and stress
Older children and teens
Denial and hope
Intimacy and sex
Peace and priorities
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.
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.
|“With decreasing physical abilities and increased discomfort, his behavior continues to worsen. He calls me names and says terrible things to me when I can’t understand his speech or I don’t do something exactly the way he wants it. At first, I thought it was just the frustration of his situation, but he is so different, I have to wonder.”|
A caregiver’s abuse of the person with ALS can take many forms, including:
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.
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.
“Give yourself a little time to process this information before you start making big changes in your own life.”
“[My husband] has had ALS now for three years. What helps him is knowing that he can’t change it, but he can fight it. Not giving in or giving up is the key. I let him struggle until he asks for help. This is his way of knowing how much he is losing in strength. He can walk the dogs, or shall I say they walk him, but we have walkie-talkies to keep in touch.”
“No stage of my progression turned out to be the total nightmare I was dreading. Because of this, I decided long ago to live in the moment and not fret about the future. It took some practice, but this state of inner peace is well worth the effort.”
“In taking care of my mom, I have to be the main decision maker. Sometimes she would just rather not deal with things. She’s scared and worried so I’m learning to say ‘This is what we are going to do, this is how we are handing this problem.’
“As a caregiver I must guard against focusing on what this disease has done to him and try to focus on being the best caregiver I can be. I catch myself thinking about the ‘skin and bones’ look he has and it causes so much stress that I find I can’t be the quality caregiver he needs.”
“I ended up in the hospital with a scare — I thought I was having a stroke — but it all checked out fine. I realized that I was running myself ragged and not getting enough sleep.
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:
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.
ALS: Anyone’s Life Story, MDA/ALS Newsmagazine, May-June 2010
Adjust, Adapt and Cope, MDA/ALS Newsmagazine, June 2007
All in the Attitude: Determining Your Quality of Life, MDA/ALS Newsmagazine, August 2006
ALS Caregiver Suggestions: 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, 2010 (available as an ebook only)
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
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.
“I feel that writing down your feelings, thoughts and ideas on a daily basis is important for anyone, but most important for family caregivers. I remember driving home from the long-term care facility in which my grandfather was living and flashes of the times we would have together when I was a kid would pass quickly before my eyes. I couldn’t wait until I got home to write them down.
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.
|“ALS is hard for those of us who are used to being independent and in control of ourselves and how we live our lives! My family has, more often than I care to admit, taken the brunt of my frustration — especially if I am tired (which is most of the time). My fuse is amazingly short and patience is nonexistent when I am tired.”|
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.
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.
“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:
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.
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.”
“My mind is like a puddle right now. I pray and pray some more for strength and guidance. At night it’s so hard when I come home, not being able to converse with anyone. I do everything I possibly can to keep it together. My wife is my first priority, but Lord knows how hard this is getting.”
“[My husband] surprised us all with his ability to cope with and adapt to monthly, weekly and sometimes even daily changes, and maintain a positive attitude. In the meantime, I dealt with everything in my own way — with chocolate and humor — as I discovered time wasn’t my own but belonged to caring for him in every way.”
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:
(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.
E: Eat right.
C: Communicate your needs to others.
H: Hydrate. Drink lots of water.
A: Accept help.
G: Get enough sleep.
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:
Here’s another simple relaxation procedure that takes only a few minutes:
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.
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
My Optum Health, Search “caregiver” for articles on maintaining health.
Meditation for Beginners, by Jack Kornfield, Sounds True, 2008
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.
“My 11-year-old daughter is the one that helps me in the bath sometimes. She would not want it any other way. She wants me to know she is grown up enough to help me. My children really help so much that I don’t know what I would do without them. We face new obstacles every day and we face them together.”
“In the back of my mind is the knowledge that my children are watching and learning from me every moment of every day.
“When I keep people from bumping into you, I feel like your knight in shining armor!”
“At the age of 5 my daughter knew about ALS. She would fear going to school, as she thought I wouldn’t be home. I kept promising her I would always be there.
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 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.
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.)
“Whenever I hug my father, it reminds me how safe I felt whenever he hugged me. I always knew that no matter what happens in this world, my dad will be there to protect me.
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.
See Parenting and Guardianship.
Having Children After an ALS Diagnosis, MDA/ALS Newsmagazine, July-August 2010
Role Reversal: When Children Care for a Parent with ALS, MDA/ALS Newsmagazine, November-December 2008
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, Vanita Books, 2008
Bigger than the Sky — The True Love Story of Emilie and Her Grandfather, by Helene E.D. Nichols, Xlibris, 2003
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 Family Library, 1997
ALS Society of Canada. Booklets for children, teens and parents such as “When Someone Special Has ALS”
Telling Children About ALS/MND, resource provided by ALS Independence website
Although older literature suggests ALS doesn’t affect cognitive function, a growing body of evidence shows that thinking and behavior change in about half of the people with ALS at some point during the course of their illness. Usually (though not always) these changes are subtle (see Cognitive changes).
Uncharacteristic thinking or behavior can indicate a condition called frontotemporal dementia (FTD), which occurs because of ALS-associated changes in the frontal and temporal lobes of the brain. Sometimes the person with ALS has such extreme moods and behavior that he or she is abusive or unmanageable or may see to be a different person. (See Abuse and Anger, and When the Thinking Parts of the Brain Go Awry in ALS.)
When demential 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 incomptence 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." 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.
When the Thinking Parts of the Brain Go Awry in ALS, MDA/ALS Newsmagazine, November-December 2011
Frontotemporal Disorders: Information for Patients, Families and Caregivers (2010 booklet), National Institute on Aging (National Institutes of Heath), (800) 438-4380.
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.
“Mom is stubborn! She will only allow certain people to help her and even then she only allows us to do certain things. This makes it much more difficult to handle because I see her and her caregivers struggling more than necessary. I have to respect her need to hang on a little longer, even if that means more work for us.”
“My sister has ALS and is progressing pretty fast. My parents won’t accept that this is what she has, even though she has been diagnosed by two neurologists, and they won’t go to any local support group meetings.
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.
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 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.
“The antidepressant doesn’t totally take the sadness away but it helps me cope with all that is on my plate now and to be able to keep going. Getting family and friends on board and keeping them updated helped a lot.”
“Sometimes I would awaken to hear him softly sobbing. At those times I usually didn’t try to comfort him or stop him as I felt it might relieve some of the devastation he was feeling and trying not to show in the daytime.”
“When [my husband] was diagnosed and life got rough, I asked my doctor for something and he refused. It took a few years but he finally apologized to me and put me on 10 mg of Celexa, which helped me rest at night and cope better during the day.
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:
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.
Tips for Tackling Depression, MDA/ALS Newsmagazine, June 2008
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
Depression and Physical Illness, by Andrew Steptoe, Wiley, 2006 (available as an ebook only)
Chronically Happy: Joyful Living in Spite of Chronic Illness, by Lori Hartwell, Poetic Media Press, 2002
Living Longer Depression Free: A Family Guide to Recognizing, Treating and Preventing Depression in Later Life, by Charles Reynolds, Johns Hopkins University Press, 2002
Understanding and Overcoming Depression, by Tony Bates, Crossing Press, 2001
“My relationship with God is fundamental, but I don’t like the idea that you postpone all your payoff until you die. We start making our heaven or our hell right here.
I don’t pray for cures, I pray for healing and purity of heart, and if a cure comes, that’ll be wonderful.”
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.
Including People with Disabilities in Faith Communities, by Erik W. Carter, Brookes, 2007
National Volunteer Caregiving Network (formerly Faith in Action), (877) 575-4932
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.
“His family wanted the vent turned off — when he was still writing and signing and laughing. They didn’t think there was any reason for him to live any longer. He told them he did not want it turned off. They were the family from hell.”
“My folks visited frequently; my dad would sit with [my husband] while I ran errands, and every time he was hospitalized they would come and be with us. 29 times! That’s family, that’s devotion. Even the out-of-state relatives would call on a weekly basis, send small gifts and show concern.”
“My dad’s brother and sister-in-law were here for the weekend. We stuck around because they were scared and uncomfortable to be alone with my parents. It dawned on me that what has become routine and loving for us simply scares people that don’t see him for weeks, even days at times.”
“One of my brothers came in for three hours yesterday — long enough to tell my Mom all she is doing ‘wrong,’ to let her know that she should be handling Dad and his ALS without help because that is the only way she will be able to live with herself after he is gone, that Daddy should drop the dignity issue because he is going to lose his dignity anyway, that she shouldn’t need help in the house (she is 76 years old and hiring some sitters). He left her crying.”
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.
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’ 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.
“Last year when we were on our cruise to Alaska, my best friend, her husband and my family did a ton of remodeling on the house. Widened doors, laid down hardwoods, started work on the accessible bathroom. All stuff I would have felt like I was imposing to ask for, but cannot tell you how appreciated it was.”
“At first when my husband was diagnosed and could barely get around let alone breathe, the people at his place of work were great, same with my fellow workers. For two years we had casseroles coming out of our ears, noses and eyeballs.
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:
These steps can help to allay fears and keep some friends involved:
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.
Bedside Manners: A Practical Guide to Visiting the Ill, by Katie Maxwell, Baker Book House, 2005
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.
“I felt like I cried for a year. The first year of diagnosis was really the biggest grieving time for me. Then I started to get busy preparing our house, trying to get the church on board, etc. Some thought I was rushing it but if you look back I was really right on schedule. Then I tried to make sure we were doing all the things we wanted to do. It certainly helps you to see what is REALLY important in life.”
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.
|“All my life I have seen myself as the provider for and protector of my family and friends. Now I need the tables turned, and I have had to learn how to say ‘Please help me’ instead of ‘What can I do for you?’ This may be the hardest adjustment of this whole ongoing process.”|
Feelings of guilt can be a response to any crisis. A poor relationship or unresolved conflicts can put guilt into the emotional mix.
Young children may feel they caused their parent or grandparent to get sick by “bad” behavior.
A person with ALS often feels guilty for imposing a hardship on the family or being a burden on a spouse. Be sensitive to these feelings; even jokingly calling the loved one a pest can trigger guilt. Let your actions show that you’re in this together.
Caregivers may feel guilty for resenting what they have to do; for wanting a break from caregiving; even for wishing the loved one would go ahead and die so this will be over. Family and friends can experience survivor guilt for being able to eat a steak or run across the lawn when their loved one no longer can.
Guilt is the obnoxious cousin in the family of emotions. It serves no purpose whatsoever and is best ignored. Making mistakes is human; forgive yourself and get on with what you need to do. Apologize for serious wrongs, but it’s more important to show love by current behavior.
Caregivers can reassure loved ones that they know they didn’t get ALS on purpose and that they’re caring and helping out of love. This may seem obvious, but the person with ALS needs to hear the words spoken. Assure children that they don’t have the power to cause ALS, and are needed to continue to love and help the parent.
Holidays, birthdays and other annual traditions present additional stress for people dealing with ALS. There are family traditions to uphold and reflections on the past year. Thoughts about time can bring up sadness and depression over the changes in the loved one’s condition and fear that this may be the last shared birthday, the last Christmas.
“[My husband] and I think one reason that holidays are difficult is because they’re a poignant marker of progression. We’re trying not to make any holiday such a big deal anymore (kind of hard to do with a 5-year-old) and instead to celebrate every day. I try to cherish the memories of the past but also live in the present.”
“The last Christmas [my husband] was with us, his caregiver and my youngest daughter decorated him to look like Rudolph! Red lipstick on the cheeks, red nose, funny antlers from the Dollar Store and a note that said ‘I am lost. If you find me please return me to the North Pole.’
The year-end holidays can be especially stressful with all the shopping, special activities and visiting. Caregivers should look for ways to simplify the holidays and minimize stress, for the sake of the loved one’s physical health and the family’s emotional well-being.
Try these guidelines:
Here are some “gift” ideas caregivers can mention to others, copy and post somewhere, or send to their church or club newsletter:
Know that any time of year, emotional support and your time are the two most valuable gifts you can give a caregiver.
(Excerpted from the MDA/ALS Newsmagazine, December 2004)
ALS isn’t funny but life is. Great comedians know there’s almost nothing that can’t be laughed about. Laughter is a great stress reliever that’s good for everyone.
Dents in the wall from a new wheelchair, strangers’ weird comments about a person using a communication device, medical treatments and even falls can be seen humorously. Incorporating humor into your coping mechanisms helps a lot.
A man wrote a top 10 list of things having ALS had taught him, including:
“My wife and I have begun to pay strange men to see me naked. The worst part is, they don’t seem to enjoy it. I don’t enjoy it much either — and not for the reason my wife supposes, namely that with my ego I think they should be paying me.”
Pets and kids can provide plenty to laugh at. Amusing TV shows, movies and books can be scheduled frequently to help lighten the mood. Even black humor has its place. There’s nothing like laughter to dissolve a tense situation and bring people closer.
Tales from the Hydrant — Pets, MDA/ALS Newsmagazine, April 2006
Laughing Along with ALS, MDA/ALS Newsmagazine, February 2006
Fun with Frances: Tales from an Emergency Pet Shelter, MDA/ALS Newsmagazine, November 2004
ALS: Tag Lines and Gag Lines, MDA/ALS Newsmagazine, June 2004
In addition to the demands on their time, physical energy and emotional resources, caregivers often feel very much alone. Only another ALS caregiver can fully understand all that’s involved. It seems there’s no time for old activities and friends. Caregiving for a spouse shifts the relationship to one of dependence rather than partnership.
Don’t shut people out unnecessarily. There’s a lot of help available, and many ways for isolated caregivers to connect and support each other. (See Friends.) New friends made through MDA ALS support groups or online listservs may be crucial because they understand what you’re going through and can give important advice and support.
Ask a good friend to give you a call at a scheduled time every week or so. That will keep you in touch with someone who cares. Also, take the opportunity to get out of the house when you can.
It may be difficult to listen to friends or empathize with their problems, when you’re living daily with a disease as overwhelming as ALS. It takes an effort to offer compassion and resist comparing problems, but it’s necessary for friendships to continue.
There are lonely nights and moments, but remember that others are going through the same thing. Some caregivers stay involved with MDA even after their loved ones have died, in order to help others going through the experience. Contact your local MDA office (800-572-1717) to be connected with others in your area who also are dealing with ALS.
“Less than two months after I was diagnosed she stood before friends and family and said these words: ‘For richer or poorer, for better or worse, in sickness and in health.’ Never have these words meant so much.
It’s hard to believe, but sometimes ALS stands for ‘A Lucky Son of a Bitch.’”
“Those times when it was one on one with each other when I would feed him were so comforting to me as his wife and caregiver. It was a warm and cozy time. Then as years passed and he became totally paralyzed and couldn’t talk, our times alone were most precious to me. He loved for me to read to him. We read tons of books over the years, me sitting next to him, touching him while I read.”
By far, the majority of ALS caregivers are spouses; more men get ALS than women, so wives more often are caregivers.
The vow to love “in sickness and in health” is put to the test when one partner has ALS. Many husbands and wives find that the experience strengthens their bond and becomes their life’s most emotionally and spiritually meaningful experience, providing a level of closeness they never imagined. Love and devotion can fortify both partners, if they always remember that caregiving is an act of love. The greater one partner’s needs, the greater the other partner’s devotion.
Not that this always occurs easily or naturally. When the full reality of ALS sets in, and at other times over the years, the caregiving spouse may think of leaving. A caregiver can become frustrated and lonely from months and years of providing so many forms of care and not even having the gratification of spontaneous conversation. Sleepless nights, changed priorities, loss of equal partnership and other demands can cause resentment. Exhaustion can become overwhelming.
Some marriages don’t make it. In those cases, it isn’t ALS that ends the marriage, but other problems in the marriage that are made sharper by ALS. A successful marriage is difficult under the best of circumstances.
When ALS enters a marriage (or a long-term partnership), the nature of the relationship changes. Roles change; rather than two people dealing with ordinary life challenges together, you become two individuals facing a crisis individually and together.
At any time, spouses may be at different psychological stages with the disease, and each must respect the other’s process. One may want to talk about the disease more than the other. Needs may clash; the roles and behaviors of other family members have an influence. Give and take, communicate and be patient, help partners be aware of each other’s needs and get back on the same track.
As husband-and-wife shifts to patient-and-caregiver (or vice versa), it takes some effort to nurture the marital relationship. When one spouse depends on the other for virtually everything, how can two people maintain a partnership of equals?
“We were able to remain intimate for a long time. Adjustments must be made, but he told me even the close cuddling, skin to skin, brought him comfort and pleasure. Don’t stop until you can’t do it anymore — be it eating, walking, being intimate or just living!”
“Even though the method had to change somewhat, there was still desire. That never changed through all the physical changes. I had no problem separating the caregiving part and the wife part. I was his wife and lover first and caregiver second.”
“I am not sure why I shy away from making love but I seem totally uninterested. Being intimate brings you closer to someone and maybe subconsciously we are trying to separate ourselves. If I was to have sex with him it would be so much work. There is no romance because he can’t move. I would have to undress him and so on. It would become another chore.”
Caregiving can provide for a special kind of intimacy. Intimacy isn’t only sex — although ALS doesn’t end sexuality.
Times of closeness and romance can come during special meals, dates or anniversary celebrations, or simply from talking, touching, laughing, hugging or sleeping together. A couple can enjoy the moonlight, favorite music or affectionate kissing. One woman found that feeding her husband was a comforting and cozy time for her. Reading to him, while holding hands, also became intimate and precious.
Touching, stroking, hugging, kissing and cuddling are needed by everyone; touching outside the tasks of physical caregiving helps keep the marital relationship alive.
Emotional intimacy includes:
Caregivers can verbalize some of their feelings to friends and others if communication with the spouse has become limited. Expressing and meeting some of these emotional needs on their own can help a caregiver focus more on the loved one.
Sexual relations often continue for people with ALS, as desire and function usually are maintained. Sex is an important form of intimacy and caring in marriage. The spouse with ALS may have an even greater need to be touched or caressed because their interactions have become so limited. Sexual release is also a great way to ease stress and facilitate sleep.
Some spouses find it difficult to maintain a sexual relationship because they see the partner in a clinical way or are too exhausted. In a Catch-22, antidepressants can subdue the libido, as can untreated depression. A partner who only makes demands, never shows thanks or ceases to express affection can put up a barrier to intimacy. Counseling or respite from caregiving may help.
A person with ALS needs to give his or her spouse affection and time to be intimate. If a caregiver provides chores all day, and then is expected to “perform” sexually, it becomes another task, not lovemaking. Both partners can make romantic gestures through words or planning a time for intimacy.
Catheters, vents and immobility make it necessary to adjust sexual positions and actions, but offer a great opportunity for imagination.
One couple took advantage of the times the partner with ALS fell on the floor and was uninjured, and another man says, “Thank God for sturdy ceiling lifts.”
Both partners need intimacy and a way to be spouses and lovers first, caregiver and care receiver second.
The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illness, by Miriam Kaufman, Cory Silverberg and Fran Odette, Cleis Press, 2007
Always On Call: When Illness Turns Families into Caregivers, ed. by Carol Levine, United Hospital Fund of New York, 2004
In Sickness and in Health, by Gail Lynch, Fairview Press, 2002
Enabling Romance: A Guide to Love, Sex and Relationships for the Disabled (and the People Who Care About Them), by Ken Kroll and Erica Levy Klein, No Limits Communications, 2001
Children of all ages need their mothers and fathers, whether the parent has ALS or not. Parents with ALS will find new ways to interact with their children and remain a central part of their lives. Caregivers can help parents with ALS continue to fulfill their role.
Early in the disease, parents can make the most of the time shared with children and shared physical activities: Now’s the time to teach a grandson to fish, take the kids to Disneyland, go sailing or hiking.
When playing ball and gardening become less feasible, caregivers can suggest that the parent with ALS help with homework, read to or with kids, attend games and concerts, or simply talk and listen. They can look up information on the Internet together and share movies and TV. A child may enjoy being the parent’s “hands” in the kitchen or in a board game, with the parent directing the child what to do.
A parent with ALS should continue to set rules, make decisions and exercise discipline of children. Kids need to know this person is still the parent, no matter what his or her physical condition.
Parents should encourage children to continue their lives as usual — to study, see friends, participate in sports or other activities, pursue their interests. A child shouldn’t feel that his parents have “chosen” caregiving over him, though parents may not be quite as easily available. A helpful relative or neighbor can pitch in to drive kids to practices or other activities.
Invite children to ask questions about ALS so they won’t be confused or frightened. One 10-year-old couldn’t understand how his grandmother could live without eating. When she showed him her feeding tube and explained how it worked, he was relieved that she wasn’t “starving to death.”
For the parent with ALS, children are a source of joy and hope. They give something to live for, a reason to fight the disease. Caregivers can help the loved one set goals such as attending a son or daughter’s graduation or wedding; this provides a positive focus and a determination to beat the life expectancy predictions.
“I got to thinking about leaving things for my family when I pass away so that they can remember me when I’m gone. I want my children to remember all of the time our family spent together and all of our favorite memories. I made four scrapbooks for my daughter and four for my son. We’re putting together a book specifically dedicated to the family’s journey with ALS, with mementos from walk-a-thons and fundraisers, articles we’ve written for the local newspaper and notes from family members. I’ve also written journals to my children, telling them stories about things they did, and have made several videotapes as well. Start early before the disease progresses too far. Use your own handwriting in a journal while you still can so your loved ones can have a part of you.”
Older children may willingly help with caregiving, thus feeling their contributions are important. Early chores could include bringing things to Dad or Mom, tying shoes, clearing the floor so the wheelchair won’t be blocked, and simple household tasks like feeding pets. Teens may become adept at handling feeding tubes, ventilators and positioning. Remind a child who’s reluctant to help that this is a way to show love for the parent. Some will come around eventually.
Encourage the parent with ALS to think about a legacy to leave for the kids. Caregivers can help the parent create a memory box or scrapbook containing souvenirs, handmade crafts or photos; write notes or letters to be read on birthdays or wedding days; or tape family stories and messages about the parent’s hopes and dreams for their children. Stories of their own lives or their family history will be valued by children someday. These tokens, made especially for each child, will remind children long into the future that Mom or Dad loved them and lives in their hearts.
One mother knitted blankets, sweaters, caps and booties for each of her children to use for the grandchildren she would never see. She wanted to express her love for them.
At some point, children will ask, or will need to be told, that the parent with ALS is facing death. The information should be given in age-appropriate language, with reference to the family’s spiritual beliefs. Answer questions but don’t overload the child with information. Give the child a chance to say goodbye, and be sure he or she understands the parent doesn’t want to leave but the illness is making it necessary.
Having Children After an ALS Diagnosis, MDA/ALS Newsmagazine, July-August 2010
Role Reversal: When Children Care for a Parent with ALS, MDA/ALS Newsmagazine, November-December 2008
When a Loved One Has ALS: Tips for Helping Children Cope, MDA/ALS Newsmagazine, March 2008
Making Memories Last Longer than a Lifetime, MDA/ALS Newsmagazine, January 2008
A Legacy: Sharing Your Life Story, MDA/ALS Newsmagazine, November 2004
Parenthood and ALS — Love Wins Out Over Doubts, MDA/ALS Newsmagazine, June 2002
Grandmother’s Memories to Her Grandchild and similar titles, by Thomas Kinkade, Thomas Nelson, 2004
Adaptive Baby Care Equipment: Guidelines, Prototypes, Resources, by Kris Vensand, Judith Rogers, Christi Tuleja and Anestra DeMoss, Through the Looking Glass, 2000
A primary caregiver needs to help the person with ALS handle emotions while respecting his or her psychological process.
“I was ready to rejoin the work force, or so I thought, as I waited for [my husband’s] condition to improve or level off. My reality check came the day I walked into the bedroom and saw him using his teeth to pull up the sheet. I was crying on the inside but remained calm on the outside, realizing his frustration and how upsetting this was for both of us.”
One key to living with ALS is acceptance and restructuring life according to the new rules set by the disease. Some people with ALS and some caregivers find happiness and peace by focusing on personal growth and learning to live in the moment.
Recrafting a Life: Solutions for Chronic Pain and Illness, by Charles Johnson, Routledge, 2002
While the primary family caregiver is closest to the person with ALS and may spend most of the day and night with that person, others want to help.
“A support group is very empowering because you may be upset about something, but somebody there has already been dealing with it. You know that they understand what you are going through, or they usually have some kind of practical advice to make you feel like there is something you can do about it.”
A huge amount of support is available. To reiterate some of the important points made throughout this book:
Sometimes attending a support group is difficult at first; it may bring you and your loved one face to face with people in later stages of ALS, which can be scary. Most people find that the connections, the information and the understanding they derive are well worth any initial discomfort. If an initial support group visit is an overwhelming experience, consider trying again in a few months or a year, when your feelings may have changed.
Muscular Dystrophy Association — USA
222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
The Muscular Dystrophy Association (MDA) is a qualified 501(c)(3) tax-exempt organization.
©2015, Muscular Dystrophy Association Inc. All rights reserved.