Amyotrophic Lateral Sclerosis (ALS) Caregivers: You’re Not Alone (article)
The goal of this article is to help you care for someone living with Amyotrophic Lateral Sclerosis, better known as ALS, or Lou Gehrig’s disease. It is based on the video “Amyotrophic Lateral Sclerosis (ALS) Caregivers: You’re Not Alone“. While you may not feel prepared for this role, there are many resources, along with a whole community of professionals and ALS caregivers to help you.
In this article, we’ll look at the early, middle, and late stages of ALS, and focus on caregiving information and recommendations related to each stage. We will also cover what to expect, how to prepare, and provide strategies to help you along the way.
Let’s start with a quick overview.
ALS is a progressive neuromuscular disease that breaks down nerve cells in the brain and spinal cord that are responsible for movement. As nerves become affected, a person with ALS experiences muscle weakness and will eventually lose their ability to move, breathe, swallow and speak. However, they may retain many of their senses, including sexual and bodily functions.
ALS symptoms typically appear between the ages of 40 and 70. On average, individuals with ALS live 2 to 5 years after diagnosis, with some people living more than 10 years.
But keep in mind that the disease can progress differently for each person.
ALS – Early Stage
In the early stage of ALS, people are still mostly independent.
They may experience:
- Muscle weakness, twitching, or cramping in hands or feet
- Increased fatigue
- Balance issues
- Slurred speech
They will need you or another friend or family member to be with them more often for safety. Symptoms can begin in the hands and feet, or with speech and swallowing. Symptoms can continue to spread over time.
An ALS diagnosis involves ruling out other potential causes of these symptoms. Since no conclusive test currently exists for ALS, individuals may initially receive a diagnosis of “probable” or “possible” ALS.
These symptoms—and receiving a diagnosis—can be very distressing. For the person who is newly diagnosed and for their family, participating in a support group can help ease anxiety and teach pro-active coping skills. Individual counseling for you and the person you care for can also be very helpful.
Learn all you can about ALS. Start by connecting with medical providers who understand and have experience with the disease. The ALS Association website contains information on Certified Treatment Centers of Excellence and Recognized Treatment Centers across the United States.
Although there are no cures for ALS yet, there are ways to treat, manage, and slow the progression of symptoms. You may also want to explore current research opportunities where ALS-specific trials are being conducted.
If you are related to someone with ALS, you may be wondering if you should get genetic testing. About 10% of ALS cases are genetic. The ALS Association certified and recognized centers all have genetic counselors who can provide more information and guide you in this process.
Social workers can help connect you to resources and referrals in your community and provide you with supportive counseling. Check with your local Chapter of the ALS Association for a referral to a care manager who can provide you with this support. The ALS Association website can help you find local care services.
How are you feeling about your loved one’s diagnosis? Sadness, anger, fear? Disbelief? Perhaps you feel relief at finally having an explanation for the unusual changes you’ve been observing. All these feelings are normal.
As a caregiver, you may experience many different emotions over time. Feelings of loss and frustration can be profound. Two types of loss that are common for caregivers are “ambiguous loss” and “anticipatory grief.”
- Ambiguous loss is the grief we experience when someone is “there but not there” – when they’re not the same person they used to be.
- Anticipatory grief occurs when we know a loss is coming, and we begin grieving before they’re gone.
In the early stages, it’s very important to find support to cope with these feelings– even before you think you need it.
Although there is no one right way, there are healthy ways to deal with anxiety, loss and grief.
Healthy Ways to Deal with Grief
- Journaling: Writing in a journal can help you to name and express your feelings. Many caregivers find journaling, or writing in general, useful, even therapeutic.
- Physical exercise
- Relaxation exercises
- Support groups
- Talking one-on-one with a friend or counselor
- Creating new rituals
These activities can help you stay well and build resiliency. Engaging in activities that are fulfilling and decrease stress should be a priority.
ALS can affect everyone in the family in different ways. This includes you as the caregiver, the person with ALS, their relatives, and friends. Each will require their own kind of support.
Children who have a parent with ALS may benefit from talking to a school counselor and checking out resources designed specifically for children on the ALS Association website.
Both you and the person you care for will have to learn to balance ALS symptoms and care needs with the desire to be independent. You both should keep dates with friends, keep up with interests and hobbies, and do the things that fill you with joy as much as possible.
Legal and Financial Planning
One common question that caregivers ask, is what will happen to the person I care for if something happens to me? One thing you can do is make sure your own legal and financial documents are updated.
This is a good time to encourage the person with ALS to make or update their legal and financial arrangements
- Speak to Attorney: For the person you care for, it’s best to speak with an attorney who specializes in disability and estate planning.
- Complete Key documents including:
- Durable financial power of attorney
- Advance Health Care Directive
- Will and/or trust
- POLST which specifies the type of medical interventions wanted at end of life.
- Release of Information: This is also a good time for the person with ALS to sign a release of information, allowing medical staff to speak with you and others who are closely involved in their care.
Employment Benefits: If you or the person diagnosed with ALS is employed, it is important to contact the Human Resources department to learn about eligible benefits, such as long-term disability and paid and unpaid family leave options.
Government Disability Benefits: Securing financial help from the government can be a challenging and confusing process. We recommend seeking out experts to help you early on. Consult with an attorney, a community organization or legal aid office that specializes in SSDI (Social Security Disability Insurance), and SSI (Supplemental Security Income). They can also help you navigate Medicare and Medicaid.
- The ALS Disability Insurance Access Act of 2019 eliminated the required five-month SSDI waiting period for applicants who are approved on or after July 23, 2020.
Medicare: Most individuals with ALS are eligible for Medicare once they turn 65 years old or as soon as their SSDI benefits begin.
But it’s important to remember that Medicare does not pay for long-term care, such as care provided in an assisted living, skilled nursing facility or private care in the home. Medicaid will pay for long-term care if the person has very little income and assets.
Veterans Benefits: If the person you care for is a veteran, applying for benefits and enrolling in the VA health care system should be done as soon as possible. Your local ALS Association chapter or Veterans Service Organization can offer guidance about service-connected ALS and assist in completing the necessary paperwork.
Long-Term Care Insurance: Long-term care insurance will help pay for care if the policy was purchased prior to the ALS diagnosis.
ALS – Middle Stage
In the middle stage, a person with ALS may experience:
- Widespread severe muscle weakness
- Muscle paralysis
- Difficulty breathing
- Swallowing, eating, or chewing become harder at this stage.
- Individuals may also display bouts of uncontrolled and inappropriate laughing or crying, known as the “Pseudobulbar Affect”.
As symptoms progress, it is common for the caregiver to feel isolated as you deal with new stages of grief and loss.
Too often, just when you really need more support, friends and even family may step back due to their inability to witness your pain and the person you care for’s decline. They may not understand the disease or how to be of help. Some ways to deal with this are to:
- Reach out to friends and family with specific suggestions or ways to be supportive.
- Contact a social worker for additional resources, or to help facilitate a family meeting.
- At this point you may also want to bring in outside assistance from friends or hired caregivers to help with care.
If you’re feeling depressed, anxious, or angry, know that these emotions are hard to deal with on your own. Consider talking with your doctor or counselor and attending a support group or retreat designed for caregivers. There are effective ways to help you cope and feel better. Don’t wait to ask for help!
Take a break! Respite can come from a family member, friend, or paid in-home care provider.
You can also take moments for yourself throughout the day. Even if it’s just 15 minutes to drink a cup of tea, watch a funny video, or do something you enjoy; these intentional breaks can make a big difference!
And if you need more time-off, there are out-of-home respite options, such as adult day programs or a short-term stay in a 24-hour care- assisted living or nursing residence.
Too often caregivers don’t feel they need a break until they experience a crisis or problem with their own health. We encourage you to get respite early and as often as you can.
Some signs that you need more support and time to take care of yourself include:
- health issues like a rash or ache that are getting worse
- rising blood pressure
- your own chronic health conditions aren’t being managed well
- trouble sleeping
- feeling anxious, irritable and less patient
- turning to alcohol or drugs in an effort to relieve your stress
Remember, as ALS progresses, it’s easy to postpone your own healthcare needs. Be sure to prioritize your physical and emotional health!
It may cause you anxiety to take time for yourself because you worry something bad will happen. Or you may feel guilty. The truth is that it’s essential to confront these concerns and make time to step outside of the caregiver role.
To find respite and other local support services please see the Amyotrophic Lateral Sclerosis (ALS) Caregiver Resource Guide linked to in this article. You may download and save it to your computer.
Safety becomes more important during the middle stage of ALS. Connect to the following professionals for assistance in assessing safety issues and obtaining assistance in keeping the person you care for as safe as possible.
Physical Therapist (PT): Because ALS causes loss of motor functions over time, it’s important to identify potential hazards that may exist in the home. A PT can complete an in-home safety evaluation and suggest modifications such as bathroom grab-bars for getting in and out of the shower. PTs can also recommend other types of equipment and strategies to prevent falls and injury.
Occupational Therapist (OT): helps promote independence and safety for the person living with ALS. They can suggest assistive devices and tips to help with daily activities and personal care.
Speech Therapist: People with ALS may experience difficulty speaking, swallowing their food, and drinking beverages due to the weakening and loss of muscle control in the mouth and throat, also known as the bulbar muscles. A speech therapist can make recommendations to help manage speech and swallowing. They can also recommend devices that allow a person with ALS to communicate in a variety of ways.
Dietician: Those who lose muscle control in their hands and arms will need assistance eating and drinking. They may struggle to maintain a healthy weight and proper nutritional intake. A dietitian can help put together a diet that provides for their specific needs. Over time a person with ALS may no longer be able to safely swallow food or liquids, and a feeding tube may be needed.
Palliative Care: Palliative care helps to improve the quality of life for people who have debilitating chronic health conditions. A person doesn’t have to be in the end stages of a disease to qualify. Palliative care teams can help manage symptoms and reduce suffering.
Contact the medical team for referrals to any of these professionals. And if it’s difficult to attend an appointment in-person, ask providers about telehealth or virtual visit options.
If your health insurance does not fully cover the cost of a necessary piece of durable medical equipment or communication device, most ALS Association local chapters offer equipment loan programs.
ALS – Late Stage
During late-stage ALS, the person you care for, will need assistance with most or all of their personal care:
- Speaking, eating, and drinking may not be possible
- Mobility will be extremely limited
- Respiration becomes more difficult. Respiratory difficulties that progress over several months can become challenging to manage. However, there are medications to help relieve discomfort.
Talk with the medical team about all the possible ways to help reduce pain and/or suffering and increase comfort. Remember, you are their connection to quality care and services when they are no longer able to advocate for themselves.
There may come a time when the person with ALS requires a higher level of care than can be provided at home. Moving the person to a skilled nursing facility can be a tough decision, but a necessary one for some. You may feel like you’ve failed or that you’re breaking a promise – even when you know that placement will provide more safety and advanced care.
If you’re considering a nursing facility, it’s helpful to get a list of local options and visit them. You can find ratings for skilled nursing facilities at Medicare.gov.
Even if the individual moves to a skilled nursing facility, this doesn’t mean that your role as a caregiver ends. Your presence and advocacy will help to ensure that proper care is provided.
Hospice and End of Life Care
Hospice services are designed to support individuals towards the end of life. Hospice is a Medicare benefit for which individuals are eligible when a doctor has determined a patient has six months or less to live. The goal of hospice is making the patient as comfortable as possible.
Care can be provided wherever the person resides, whether at home or in a care facility. Services include visiting nurses, pain management, and personal care. Hospice can also provide spiritual, grief, and bereavement support, as well as respite for family caregivers.
The doctor or medical team may have a particular hospice program they recommend, or you can choose your own. Once you’ve selected a hospice program, you can ask the doctor for a referral to begin services.
We hope the information included in this article will give you a starting point for what questions to ask or resources to request.
You can find out more about all the topics addressed in this article;
- In the Amyotrophic Lateral Sclerosis (ALS) Caregiver Resource Guide
- By speaking with the person with ALS’ medical team
- By contacting your local ALS support organization
We hope that the time spent reading this article has helped you feel more informed and supported in your caregiving journey. And finally, we want to remind you of these key take-aways for caregiving:
- Get support early!
- Connect with ALS specialists
- Learn local resources
- Review medical, legal, and financial documents
- Take care of yourself
Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
FCA CareNav: http://fca.cacrc.org/login
Services by State: www.caregiver.org/connecting-caregivers/services-by-state/
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s, and other debilitating brain disorders that strike adults.
Other Organizations and Links
ALS Association (ALSA)
The ALS Center at UCSF
The Muscular Dystrophy Association (MDA)
International Alliance of ALS/MND Associations on the Internet
National Institute of Neurological Disorders and Stroke
Paralyzed Veterans of America
National ALS Registry
Written by Family Caregiver Alliance and reviewed by Audra Hindes, Vice President of Care Services and Jennifer Claxton, Director of Care Services of The Golden West Chapter of the ALS Association.
This article was underwritten with funding from Adira Foundation with additional support from other generous donors and produced by Family Caregiver Alliance.