Chapter 1 - The ALS Caregiver
WHAT IS ALS?
Amyotrophic lateral sclerosis — ALS or Lou Gehrig’s disease — is a disorder of the motor neurons or nerve cells in the brain and spinal cord that control the action of voluntary muscles. For unknown reasons, in ALS these motor neurons die, and the muscles they control no longer function, gradually becoming paralyzed.
ALS usually starts out in one of two ways: bulbar onset or limb onset.
When the motor neurons in the brain stem are affected first, then symptoms start in the face, mouth, throat and tongue, called the bulbar region.
More commonly, motor neurons in the spinal cord are affected first and symptoms start in the limbs — arms, legs, hands or feet. Rarely, the respiratory muscles in the trunk are affected first.
In all types of onset, symptoms eventually spread to other areas of the body.
What Can You Expect?
Each case of ALS is unique.
It used to be that about 70 percent of people died within five years of the onset of symptoms, but that figure is changing thanks to better use of medical interventions, like assisted ventilation and feeding tubes. About 10 percent live for 10 years, and some even live for 20 years or more.
ALS doesn’t unfold in a predictable pattern. Some people have slow progression of symptoms, while others experience a rapid loss of ability. Sometimes there’s a big loss followed by a plateau.
Although each individual follows his or her own course, it’s possible to make broad generalizations about the progression of the disease.
For the most part, ALS doesn’t affect automatic body systems like the heart, digestion, urination, defecation, blood pressure, temperature, etc. The senses (touch, hearing, vision, smell) are largely unaffected. The muscles that move the eyes, even though classified as voluntary muscles, usually aren’t affected, either.
The intellect usually is unaffected. However, some people with ALS will exhibit disordered or irrational thinking, or unexpected emotional behaviors. Sometimes this is due to damage from the disease (see “Dementia” and “Pseudobulbar Affect”) or to other factors, such as depression or poor respiration.
Sexual function remains normal and there are numerous reports of men with ALS fathering children and women with ALS carrying healthy babies to term.
Below is a look at three general stages of ALS: early, middle and late. The time frame and symptoms for each of these stages is totally individual. People with ALS can move very quickly through the stages, or have frequent plateaus and progress slowly, or any combination thereof. The information in the chart gives a general idea of the requirements of life with ALS at each stage.
Stages of ALS
Early Stages
Muscles
- Muscles may be weak and soft or stiff, tight and spastic. Muscle cramping and twitching (fasciculations) occurs, as does loss of muscle bulk (atrophy).
- Symptoms may be limited to a single body region or mild symptoms may affect more than one region.
Physical Effects
- The person may experience fatigue, poor balance, slurred words, a weak grip, tripping when walking or other minor symptoms.
- Sometimes this stage occurs before a diagnosis is made.
Assistance Needed
- The person may need help with some physical tasks, and might benefit from the use of a cane, leg brace or other simple device.
Caregiver Role
- Provide assistance when asked
- Provide emotional support, including the assurance “we’ll get through this together.”
- Look for helpful ways to adapt the environment for safety and independence.
- Review and update your legal, financial, medical and other affairs. Investigate government and insurance benefits.
- Begin to share the news of the ALS diagnosis with children, relatives and friends.
Middle Stages
Muscles
- Symptoms become more widespread.
- Some muscles are paralyzed, while others are weakened or unaffected. Fasciculations may continue.
Physical Effects
- Unused muscles may cause contractures, in which the joints become rigid, painful and sometimes deformed.
- If a fall occurs, the person may not be able to stand back up alone.
- Driving is relinquished.
- Weakness in swallowing muscles may cause choking and difficulty eating and managing saliva.
- Weakness in breathing muscles can cause respiratory insufficiency, especially when lying down.
- Some people experience bouts of uncontrolled and inappropriate laughing or crying (pseudobulbar affect). Despite how it seems, the person usually doesn’t feel particularly sad or happy.
Assistance Needed
- Range-of-motion exercises, especially for the shoulders, help keep joints limber.
- Leg braces, hand and wrist splints help extremities remain stretched and in a good position.
- Feeding tubes end the fear of choking and keep weight stable.
- Noninvasive ventilation (BiPAP) helps compensate for weak breathing, especially at night.
- Adaptive equipment becomes more valuable.
- Wheelchairs conserve strength and promote independence.
- Communication devices enable people to stay part of the conversation.
- Adaptive eating, writing and computer tools preserve independence.
- Shower chairs make hygiene easier and safer.
- Lift chairs and rising toilet seats help with getting up from a seated position.
- Transfer boards and mechanical lifts enable safer, less strenuous transferring from one location to another.
- Anti-depressants and anti-anxiety medication help bolster coping skills.
- Several drugs help with uncontrolled laughing or crying (pseudobulbar affect).
Caregiver Role
- Ask for help; don’t try to do it all.
- Give your loved one physical assistance with eating, drinking, bathing, toileting, dressing, communicating and mobility.
- Ensure range-of-motion exercises are performed each day.
- Evaluate your loved one’s standing, walking and swallowing abilities, and make changes to ensure safety.
- Help obtain needed assistive equipment.
- As much as possible, help your loved one stay involved in the affairs of daily living, including decision-making and planning.
- Watch for signs of depression and discuss them with the doctor.
- Be aware of your own depression and/or anxiety. Discuss it with your doctor and work out coping strategies. Keep on top of your physical health.
- Learn how to operate equipment and perform care tasks from nurses, therapists and others on the health care team.
Late Stages
Muscles
- Most voluntary muscles are paralyzed.
- The ability to move air in and out of the lungs is severely compromised.
Physical Effects
- Severely limited mobility. Unable to care for own needs.
- Poor respiration causes fatigue, fuzzy thinking, headaches and susceptibility to pneumonia.
- Speech may be no longer possible.
- Eating and drinking by mouth aren’t possible.
Assistance Needed
- Power wheelchair, hospital bed, mechanical lift, switches that enable any moving body part to operate computers, environmental control units and communication devices.
- Assisted ventilation, either noninvasive or invasive (tracheostomy).
- Feeding tube.
- Urinary catheters aren’t required but can make toileting easier.
Caregiver Role
- Find and train caregiving help.
- Oversee 24-hour care of your loved one.
- Find ways to help your loved one stay socially and mentally active.
- Get into a routine that supports you as well as your loved one.
- Although this stage is all-consuming for caregivers, surprisingly many report great stability and satisfaction in their daily lives at this later stage of the disease.
Resources: For a more detailed explanation of ALS, see MDA’s booklet “Facts About ALS.” |
The Role of the ALS Caregiver
| “To those of you caregivers who have chosen to not only stick by your loved one with ALS but actually love them as partners, not just patients, I commend you. You did have a choice to stay or go ... and you chose to LOVE and STAY. May you know each day that your sacrifices are not in vain.” |
Taking care of someone with ALS isn’t like taking care of a person with an acute illness lasting a few weeks, nor is it like caring for someone with a stable, chronic condition, such as someone who has had a stroke. It’s somewhere in between.
The caregiver’s job gradually becomes harder as ALS progresses, meaning you’ll have time to learn how to give assistance. The health care team and MDA staff will help you learn as you go.
ALS caregivers move from helping with buttons and balance to providing a steadying arm, feeding a meal bite-by-slow-bite, helping with more intimate personal tasks, learning to operate medical equipment and supervising a 24-hour care operation that includes other sources of help.
ALS robs people of their movement, but not their spirits. The toughest — and most rewarding — part of your job may be figuring out how to help your loved one still feel in control of his or her life, even as you provide more and more care.
The Family Caregiver Alliance (www.caregiver.org) lists these “rules of the road” for caregivers:
- Take it step by step.
- Spend time at the beginning understanding your situation and options, so you don’t have to rush into action without a plan.
- A team approach is the key to success. (Your loved one with ALS is a central part of that team.)
- Conditions change along the way and your strategies will shift accordingly.
- Knowledge and confidence come a little at a time.
- You must ask for the support you need.
ALS feels like a series of losses. Part of a caregiver’s job, for themselves and their loved one, is to find the gains in the losses.
A Caregiver’s Bill of Rights
by Jo Horne
I have the right:
- To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
- To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.
- To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
- To get angry, be depressed, and express other difficult feelings occasionally.
- To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
- To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
- To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
- To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
- To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.
(Reprinted with permission of “Today’s Caregiver,” www.todayscaregiver.com) |
Caring for the Caregiver
You must take care of yourself. This may seem impossible when so much attention is required by the person with ALS, but if the caregiver gets ill or is overcome by depression, he or she can’t do a proper job of caregiving.
Caregivers make a long-term commitment to a 24-hour-a-day job. Feeling not up to it is a normal, common reaction. But with planning, the job is manageable.
Due to the nature of ALS, it’s not uncommon for caregivers to experience sleeplessness, anxiety and depression. Physical symptoms can include back pain, headaches, stomach disorders and weakened immune systems. Studies show that caregivers develop chronic conditions twice as frequently as others their age. The more hours spent caregiving, the higher the chance of illness.
Nurses and other health care professionals at the MDA clinic can help you find resources to assist with caregiving tasks (also see Chapter 8).
This book, your MDA ALS support group and your MDA health care service coordinator also can suggest ways to effectively handle the job.
Use these resources — don’t be reluctant to admit your frustrations, exhaustion or fears. No one can do it all or do it alone.
Watch yourself to make sure you’re getting proper nutrition, as much rest as possible, some exercise and some time for yourself. Acknowledge and accommodate your limitations — back problems, illness, time required by children or elderly parents.
One way to make the caregiving job manageable is by building a caregiving team.
“My wife and I just decided to take each day to enjoy what we have (which isn’t much in worldly terms), each other, our families, the world we live in, and the fact that we have been granted the time we have to do it.”
“I gave up a job which I loved, gave up going to lunch with friends, hobbies, going to the mall, etc. But now I know this is my calling. I am the best caregiver my daughter will ever have.”
“Caring for a person with ALS is stressful but once you put your mind to it — once you make the decision that it’s your life to take care of this person and put your life on hold — then the outlook on life is much easier.”
“One minute and one day at a time. That’s become my motto. Guilt, fatigue, it all goes away for a little while every time my wife smiles and laughs.” |
As primary caregiver, think of yourself as a captain with troops to whom you can delegate some tasks. Enlist family members, friends, or members of your church or synagogue.
Start thinking about your team early, and make a list of people who say, “Let me know if there’s anything I can do to help.”
Equipment also is a godsend to caregivers. There are numerous mechanical devices to assist with lifting, mobility, feeding, etc. Insurance and Medicare often cover the rental or purchase of these items, or they may be available through the MDA Loan Closet.
Rewards of Caregiving
Despite its many demands, caregiving can be one of the most gratifying, and spiritually and emotionally powerful experiences of a person’s life.
The intense closeness with the loved one who has ALS, the chance to discover that you can meet needs and solve problems, the gratitude felt by the loved one — all these enrich the psyche and the heart.
Just as caregiving can take a physical and emotional toll, new research shows that the act of helping can do the opposite — bolster well-being, increase coping skills, provide satisfaction and even strengthen the caregiver’s ability to ward off or recover from illness.
But these benefits can’t occur when the caregiver is overwhelmed.
Support, respite and perspective will help make the ALS journey one of depth, growth and meaning, instead of only exhaustion, sacrifice and despair.
Your life as an ALS caregiver will be unlike anything you’ve experienced before. Know that you aren’t alone in this experience, and that help is there when you need it.
Rules for the Care and Treatment of Caregivers
by Jeff Lester
As a person with ALS who has been fighting this disease for over 11 years (seven on a vent), I realized early on that if I were to have a somewhat normal life, I’d have to depend on my incredible wife, Lisa, to achieve it. This meant that I’d have to follow some rules about the way I treated her, my primary caregiver. It’s essential that caregivers and care receivers have some ground rules about their behavior toward one another.
The rules I’d give to caregivers are: Keep the relationship the same as it was before ALS (don’t make it an adult/child relationship). And don’t abuse the power you’ve been given as the other person becomes dependent on you.
Lisa’s and my close relationship only partially prepared us for the changes that occurred as I became dependent on her for my most basic needs. Therefore, this transition may be even more difficult for two people who don’t start out with a close relationship, especially if the person with ALS neglects his or her role in the relationship. That’s why the following rules are for the people with ALS:
Don’t Take Advantage.
When I have to ask for something, I ask myself, “Am I using my condition and others’ empathy to get something extra?” For instance, we shouldn’t demand a gourmet meal when Spaghetti-Os were OK before, or insist on watching what we want on television (I’ve had to develop an appreciation for Lisa’s soap operas since I’m around all the time now). If we violate this rule, I feel it’s entirely appropriate for our caregivers to call us on it.
End Pity Parties.
Those of us with ALS alone are responsible for our happiness. I don’t mean that we shouldn’t express our true feelings of frustration or pain about our situation, but we shouldn’t wallow in it. If we do, it’s right for our caregivers to point it out.
Be Useful.
No matter the limitations, there always are ways that people with ALS can be useful, contributing members of our households and world. It’s up to us to find out what those ways are, even if it’s just listening to those around us and being supportive. Contributing is vitally important because it allows us to see that our lives still have meaning.
Take Care of Yourself.
As much as possible, people with ALS need to stay involved in planning for their needs, whether it’s a lift, wheelchair, adapted van, special diet, constipation aids, feeding tube — whatever. Also we must keep in mind easing our caregivers’ burdens whenever possible. We should keep knowledgeable about the best way our needs can be met, and when possible we should be the leader in our care decisions. It’s entirely unacceptable to take a passive, or even worse, a resistant role in care decisions and then complain when something is not done to our liking.
It’s inevitable that problems are going to arise between caregivers and care receivers. It’s helpful for both to write down their needs and talk together when they’re calm. I think the most important thing that my wife and I do is to make sure my care doesn’t interfere with our normal spousal relationship. We absolutely don’t let disagreements over my care have any impact on our marriage. Care and marriage are best dealt with as two totally separate relationships.
I feel strongly that those of us with ALS have responsibility for our own care and actions, even though our lives may depend entirely on the efforts of our caregivers.
May God bless our caregivers for all they do for us!
(Excerpted from the MDA/ALS Newsmagazine, February-March 2005) |
RESOURCES
MDA Resources
MDA resources are available from local MDA offices or can be found online at www.als-mda.org.
Everyday Life with ALS. MDA book about equipment, therapies and accessibility.
“Facts About ALS.” Introductory booklet about the disease. (Also available in Spanish.)
MDA ALS Division Web site. www.als-mda.org.
MDA/ALS Newsmagazine. Monthly newsmagazine covering ALS research, medical, psychological, financial and caregiving issues. Free to anyone with ALS who’s registered to receive MDA services.
“Milestones In ALS Research.” Booklet tracing major research developments since the 19th century. MDA has led the worldwide ALS research effort since the 1950s.
Quest. MDA’s bimonthly national magazine covering a range of issues related to neuromuscular diseases. Free to anyone with ALS who’s registered to receive MDA services; available by subscription to others.
“With Hope and Courage: Your Guide to Living with ALS.” 2008 video to orient and inform people with new ALS diagnoses and their families.
Books
Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, by Hiroshi Mitsumoto, M.D., and Theodore Munsat, M.D., Demos Medical Publishing, 2001
Amyotrophic Lateral Sclerosis, ed. by Robert H. Brown, Jr., M.D., Vincent Meininger, M.D., and Michael Swash, M.D., Blackwell Science, 2000
Amyotrophic Lateral Sclerosis, by Robert G. Miller, M.D.; Deborah Gelinas, M.D.; and Patricia O’Connor, R.N, American Academy of Neurology Press and Demos Medical Publishing, 2005
Biographies of People with ALS
Challenging Nature Photography, by Angelo Sciulli (a person with ALS), www.ebookstand.com/m/angelosciulli, 2003
Closing Comments: ALS: A Spiritual Journey into the Heart of a Fatal Affliction, by Brian Smith, Clements Publishing, 2000
Confronted With Death, by B. J. Bloch, www.novel-books.com, 2001
Down the Yellow Brick Road, by Joseph J. Conte and Constance J. Schneider Conte, Tate Publishing & Enterprises, 2006
Facing the Lion: How to Cope with Misunderstanding, Injustice, and Suffering, by Pamela Vack, WinePress Publishing, 2001
Falcon’s Cry: A Desert Storm Memoir, by Major Michael Donnelly, USAF retired (a person with ALS), with Dennis Donnelly, Praeger, 1998
Falling Practice: What Illness Teaches Us, by Karen Jorgensen, Silent Press, 2005
I Choose to Live: A Journey Through Life With ALS, by William Sinton, Banbury Publishing, 2002
I Remember Running, by Darcy Wakefield, Avalon Publishing, 2005
Learning to Fall: The Blessings of an Imperfect Life, by Philip Simmons, Bantam Books, 2002
Letting Go: Morrie’s Reflections of Living While Dying, by Morrie Schwartz, Walker Publishing, 1996
Luckiest Man: The Life and Death of Lou Gehrig, by Jonathan Eig, Simon & Schuster, 2005
On Any Given Day, by Joe Martin and Ross Yockey, John F. Blair, 2000
Tales from the Bed: On Living, Dying and Having It All, by Jennifer Estess, Washington Square Press, 2005
Terminally Sane: One Man’s Journey Beyond Lou Gehrig’s Disease, by Jay A. Rouelle, Jarou Publishing, 2001
Tonight at Noon: A Love Story, by Sue Graham, Pantheon Books, 2002 (about jazz bassist Charles Mingus)
Waking Up: Climbing Through the Darkness, by Terry Wise, Pathfinder, 2004
You’re Not You (fiction), by Michelle Wildgen, St. Martin’s Press, 2006
Web Sites, Chat Groups & Listservs Focused on ALS
MDA/ALS Division
www.als-mda.org
(800) 572-1717
“Living with ALS” chats are held three times a week; check the chat calendar at www.mda.org/chat/calendar.html
ALS Advocacy Community
Turning Points in ALS
http://tpals.org
Stories from people with ALS and caregivers about turning points in the disease.
ALS Care
(336) 340-6400
www.alscare.com
ALS Care offers telephone consultations with a registered nurse, specializing in ALS home care and other related issues.
ALS Forums
www.alsforums.com
Publications and extensive chat schedule.
ALS Therapy Development Institute forums
www.als.net/forum
Caregivers for ALS
http://z4.invisionfree.com/CaregiversForALS/index.php
Living with ALS Yahoo group
health.groups.yahoo.com/group/living-with-als
Very active forum for people with ALS and caregivers, offering detailed information and support.
NeuroTalk Communities — ALS
http://neurotalk.psychcentral.com
Patients Like Me
www.patientslikeme.com/welcome/community/als
World Federation of Neurology
www.wfnals.org
Web Sites by People with ALS
(current as of 2008)
Alan Coleman (caregiver)
www.firmlyinhishands.com
George Goodwin
www.alsindependence.com
Diane Huberty
www.living-with-als.org/Diane/
Jeff Lester
www.ragingbearscloset.com
MDA Anyone’s Life Story series
www.als-mda.org/anyone/als_stories.html
“Randy’s ALS Manual,” by Randy Roberts
www.55jer.com/randysalsmanual.htm
The Role of the ALS Caregiver
Books on Caregiving
Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive, by C. Berman, Owl Press, 2006
Counting on Kindness: The Dilemmas of Dependence, by Wendy Lustbader, Free Press, 1991
Candlelights for the Family Caregiver’s World: Spiritual Keys for Avoiding Caregiver Burnout and Promoting Inner Peace, by Alice Johnson, Ed.D., and John Johnson Jr., Ed.D., Mal-Jonal Productions, 2001
Caregiver’s Reprieve: A Guide to Emotional Survival When You’re Caring for Someone You Love, by Avrene L. Brandt, Ph.D., Impact Publishers, 1998
Caregiver Daily Journal, by Sylvia Barron Baca, www.lulu.com/content/746190
Caregivers Are People Too: A Primer for Those Who Take Care of Disabled Persons, by Gloria M. Sprung, M.S.W., Author House, 2006
A Family Caregiver Speaks Up: “It Doesn’t Have to be This Hard” by Suzanne Geffen Mintz, President of the National Family Caregivers Association, Capital Books, 2007
The Fearless Caregiver, ed. by Gary Barg, Caregiver Media Group, 2001
If Only I’d Had This Caregiving Book, by Maya Hennessey, Author House, 2006
The Resourceful Caregiver: Helping Family Caregivers Help Themselves, by the National Family Caregivers Association, Mosby Lifeline, 1996
To Survive Caregiving: A Daughter’s Experience, A Doctor’s Advice on Finding Hope, Help and Health, by Cheryl E. Woodson, M.D., Infinity Publishing, 2007
Caregiver-Specific Web sites
AARP
(800) 687-2277
www.aarp.org
Search “caregiving” for several publications and other resources on aspects of caregiving.
Area Agency on Aging
National Family Caregiving Support Program
www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp
Caregiver.Com
(800) 829-2734
www.caregiver.com
www.caregiver911.com
Produces Today’s Caregiver magazine, the Sharing Wisdom Caregivers Conferences, topic-specific newsletters and online discussion forums.
CareGivers.com
(888) 405-4242
www.caregivers.com
Part of the AgeNet Eldercare Network.
Family Caregiver Alliance
(800) 445-8106
www.caregiver.org
A public voice for caregivers with programs of information and support at national, state and local levels.
Family Caregiving 101
www.familycaregiving101.org
The site includes a message board for family caregivers.
Friends’ Health Connection
(800) 483-7436
www.48friend.org
Friends’ Health Connection links people with illness or disability and their family caregivers with others experiencing the same challenges.
Mather Lifeways
(800) 492-7500
www.matherlifeways.com/re_empoweringfamily.asp
Offers a variety of supports for caregivers, especially related to aging.
National Alliance for Caregiving
Family Care Resource Connection
www.caregiving.org
National Caregivers Library
(804) 327-1112
www.caregiverslibrary.org
The library, which offers articles, forms, checklists and links, has an ALS section.
National Family Caregivers Association
(800) 896-3650
www.nfcacares.org
The leading U.S. organization supporting the more than 50 million Americans who care for loved ones with a chronic illness or disability or old age. Offers publications, information, referral services, caregiver support and advocacy.
Rosalynn Carter Institute for Caregiving
(229) 928-1234
www.rosalynncarter.org
RCI provides educational programs for caregivers, conducts research and disseminates information about caregiving.
Strength for Caring
(866) 466-3458
www.strengthforcaring.com
A project of Johnson & Johnson, the site offers multicultural resources, including a caregiver manual, message boards and tips for daily living.
Well Spouse Association
(800) 838-0879
www.wellspouse.org |
