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How Do You Take Care of Someone with ALS?

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What to Expect and How to Care for Yourself, Too

Posted by Terry Heiman-Patterson, MD

In my work with patients who are diagnosed with amyotrophic lateral sclerosis (ALS), I find that even though one person has the condition, it affects their whole circle of friends and family, too.

If you’re the one who is going to take care of someone with ALS, there’s a heavy burden to not only learn about the disease itself, but also to understand how you can best help your friend or family member. It’s definitely a full-time job.

A diagnosis of ALS — also called Lou Gehrig’s disease — is extremely overwhelming. And then the more outward physical changes start to take place. It’s a lot to take in.

Why being a caregiver is so important

As time goes by, patients and families juggle confusing emotions, changes in the way they live their lives every day, and in the respective roles they play within their family and social circle. This is why we built our program around families, not just patients. We believe caregiver support is an essential component of patient care.

Just to clarify, an ALS caregiver is a person who helps someone with ALS take care of the things they can’t take care of themselves. As a caregiver, you may help the patient with:

  • Completing daily living tasks
  • Taking them to appointments
  • Keeping them company
  • Assisting them in making decisions that impact their care

You may also be the support they go to on bad days, and good days.

Caregiving can often be rewarding, but over time, it can take a physical and emotional toll. To prepare yourself to be an ALS caregiver, try to learn all you can about the condition, and talk to your friends or family about the role you’d like to play in their care. More importantly, don’t lose focus on yourself!

Get to know the basics of ALS

ALS is what we call a “progressive” condition that affects the nerve cells in the brain and spinal cord. These nerve cells, called motor neurons, control movement in your muscles. As your motor neurons become damaged, your muscles start to wither and deteriorate. This leads to many symptoms that worsen over time, including:

  • Weakness in the arms and legs
  • Stumbling or difficulty walking
  • Difficulty speaking, or slurred speech
  • Problems with chewing or eating
  • Muscle twitches and cramps

ALS symptoms can differ from person to person, but as the disease progresses, people experience:

  • Muscle paralysis
  • Difficulty breathing
  • Other problems that can be life-threatening

Although life expectancy after diagnosis is usually about 2 to 5 years, some people with ALS can live for many more years, especially those who have a good support system.

Put yourself in your loved one’s shoes

As a caregiver, it helps to put yourself in the patient’s shoes. It’s life-changing to hear you have ALS. Some people react with shock, while others may be confused or angry. It may take a while for the diagnosis to sink in for both you and your loved one.

At this point, it’s not necessary to try to solve anything for your family member or friend. Just be there for them.

Listen and let them know you’re there to talk. Encourage them to sit with the diagnosis. It may take time for them to come to terms with it, and their emotions may calm along the way. This is when you can work together to form a support plan.

Before you take on the responsibilities of caregiving, make a promise to yourself: “Even if it means someone else takes care of my loved one for a day, I will take time for myself.”

Learn about ALS treatments and how you can help manage symptoms

Your loved one’s healthcare team will work together to develop an initial treatment plan that may include the following:

ALS medications

The doctor may prescribe your loved one a combination of medications to help slow the progression of muscle deterioration and to manage physical symptoms.

You can support this plan by going to your loved one’s appointments, asking questions and taking notes. You may also go over the list of medications to ensure your loved one is taking the correct dosage at the right time.

Physical therapy

With ALS, it’s important for your loved one to keep moving, even if that means they need assistance. Physical therapists help those with ALS maintain strength and flexibility. Even after the muscles no longer function, ongoing physical therapy is important.

A physical therapy plan may include a schedule of at-home activities. If you’d like to assist your loved one with these exercises, be sure to talk to the physical therapist about your role.

It’s also important to understand the proper way to support your loved one while they exercise to prevent injury or harm.

Occupational therapy

Occupational therapists are trained to evaluate the ways patients move in their own environments. As their movement becomes more limited, occupational therapy will help equip your loved one with aides to help them be as independent as possible. This may include:

  • Teaching different ways of doing things
  • Providing equipment
  • Suggesting technology that may help improve quality of life

You can help this process by watching your loved one in their home and making note of any challenges they may face while performing daily activities.

Skilled nursing

At some point, you might also look into skilled nursing visits to help you take care of your loved one in the home. This may involve scheduled visits by a nurse who is trained in caring for those with ALS.

Skilled nursing services include:

  • Activities such as help with bathing and getting dressed
  • Making sure your loved one is taking their medicines correctly
  • Watching for signs of pain, skin breakdown or breathing problems that may need attention

These visits are often covered by insurance with a doctor’s order.

Take Care of Yourself, Too

Caregiving is a selfless act, but it can also take a heavy toll on you. As a caregiver, you want to support your loved one as much as possible. Part of that support means taking care of yourself, too.

Caregiver burnout can lead to emotional and physical problems that, over time, can affect your outlook and your own quality of life. Before you take on the responsibilities of caregiving, make a promise to yourself: “Even if it means someone else takes care of my loved one for a day, I will take time for myself.”

ALS Caregiver Tips

Here are some strategies that ALS caregivers have shared with me throughout the years:

  • Take a few moments every day to reset yourself – just sit and breathe.
  • Engage in activities that reduce stress, like daily walks or yoga.
  • Eat healthy foods and try not to use alcohol as a stress-reliever.
  • Ask a back-up caregiver to care for your loved one while you schedule an activity for yourself.
  • Read books, take baths, or engage in other activities where you can be alone with your thoughts.
  • Get out with friends, or talk to a friend. If you’re feeling down, schedule an appointment with a counselor.
  • Join an ALS support group.
  • Know that your feelings are just as important as your loved one’s feelings.

Partner with Temple’s MDA/ALS Center of Hope

At our MDA/ALS Center of Hope, we believe caregivers make a huge difference in the quality of care our patients receive.

Caregivers are often the patient’s biggest advocate and become a trusted part of Temple’s extended care team. While we focus on the clinical needs of the patient, you can focus on helping them feel empowered in their own care.

I encourage all my patients’ caregivers to come to appointments, get to know the healthcare team, bring up any issues the patient may be having, and be there as a guiding light.

Caregivers are truly irreplaceable when it comes to ALS treatment.

Terry Heiman-Patterson, MD

Dr. Heiman-Patterson is a neurologist and a Professor of Neurology at Lewis Katz School of Medicine at Temple University. Her clinical interests include amyotrophic lateral sclerosis and neuromuscular diseases, and she’s nationally renowned for clinic and research work with ALS. Her research interests include autonomic, pulmonary, and cognitive involvement in ALS and other motor neuron diseases, as well as caregiver burden in ALS.

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