By Jacob Ahlstrom | Posted - Dec 7th, 2020





The Burden of ALS and the Value of Family Caregivers

Each home is different and everyone’s situation is unique, but an ALS diagnosis changes the life of both the pALS (person with ALS) and their family. Whether tasked with assisting your father out of bed in the morning or helping your wife get into bed at night, most family members are given the responsibility of becoming informal caregivers. This abrupt change can have a strong impact on the quality of life. Even so, professionals point out the value in family caregiving both for the caregiver and patient.  

One of the values and burdens of family caregiving is a deeper concern for both the patient and the caregiver. Cara is an ALS patient who worries that her diagnosis is taking a heavier toll on her husband than it is on her. When explaining his burden, she stated: 

“Obviously he would worry, probably more than I would. I always think the other person who has to put up with an ill person, goes through more …. I feel that he’s going through so much more than I am.” 

There are many reasons why a caregiver may have to take on a heavy load after a loved one is diagnosed with ALS. No matter how directly involved you are with their loved ones, after diagnosis life takes a sharp turn and you must re-evaluate your priorities. One day you are working, or you are in charge of taking care of the house and the kids, and then the next thing you know, all your responsibilities have shifted.  

Often after diagnosis a caregiver is faced with 5 major challenges;

  • Taking over for daily tasks that their pALS can no longer do on their own
  • Engulfing themselves in information about ALS
  • Balancing this new life with competing obligations
  • Striving to keep life as normal as possible
  • Managing the added resources and assistance necessary as the disease progresses 

This is a lot for anyone to take on their own, so below, we have created a breakdown of what you can do to alleviate common burdens as a caretaker and make your tasks as a caregiver more manageable.  

Immediate Care 

Immediate care often requires taking over everyday tasks that the patient can no longer do for themselves, such as; adjusting arms and legs, turning the page in a book, or simply being nearby for safety purposes. Sometimes families do not feel comfortable with paid personnel taking on these responsibilities, while others may not have the resources for paid personnel.  

When trying to mitigate the demand of immediate care, various things will not change. But everyday tasks will only become more complicated as the disease progresses. The best way to counter this increase of demand is to find the best equipment to aid with these day-to-day activities and to invite friends and family members to help.  

Seeking information and clarity about the disease 

Caregivers are often the ones bringing their pALS to and from doctors' visits. They often take on the responsibility of finding the best treatment options available. Because of the complexity of the disease, they often find themselves becoming a self-taught specialist in all things ALS, whether that be from personal research or talking to doctors. Sometimes this newfound knowledge comes with added responsibility. How much does one share with their loved ones? One patient reported

“Sure, I have read, among other things. And if she is wondering about something, or is feeling bad..., I can say: ‘No, it has nothing to do with [ALS], you’re just in bad shape, or you have a cold or something like that’ It is much better that she’s living the life she wants to live, and then I can carry some of the burdens for her.”

For some, gaining knowledge and looking for a cure is a major source of motivation, while for others, it can be discouraging. Caregivers often feel responsible for the way new knowledge affects their loved ones. When you don’t know what to do or how to handle a specific situation, remember that other people have gone through the same thing. Become involved in an ALS community and don’t be afraid to reach out for help or guidance 

Managing competing obligations 

Before becoming caregivers, you were parents, spouses, employees and providers. Becoming a caregiver often means making accommodations to previous lifestyles. Everyone’s situation is different. Some caregivers are also responsible for their own children and even parents, while others have to balance their career. Whatever your situation is, remember that you are also responsible for yourself. Just like the classic “oxygen mask on an airplane” example, you must help yourself first and then you can help others. Taking time for yourself can take many forms including making time for hobbies, finding ways to relax and practicing mindfulness. Mindfulness is a practice that helps us not over react or be overwhelmed by the things going on in our lives. With this in mind we acknowledge that life is going to be different that it was before. 

Maintaining normality  

Oftentimes pALS feel as though it is their responsibility to keep life as normal as possible. One caregiver, with 3 years of caregiving experience under their belt, shared

“And that was the challenge. To try to live as normally as possible, without creating more problems than those that already existed.”  

When much of your attention is focused on the caregiving aspect of your life, it is easy to forget what it is you are fighting for. Joy in life is found in the little things; eating together, playing games, listening to music, or watching movies together. It is important to fortify relationships outside of immediate care work.  

Along with this, immediate care work throws off the “normal” lifestyle for some people. For others, it becomes the source of consistency and normality. Some find that they need to take regular breaks from immediate care, while others feel that they lose intimacy and privacy when they let others get involved. Find what works for you and your relationship with your family members. 

Managing external resources and assistance 

Becoming a caregiver basically means becoming a personal manager for your pALS. You become tasked with overcoming the bureaucratic mountains that stand between your pALS and health insurance. Not only are you responsible for taking your pALS to the doctor, you are also tasked with sitting through the appointment and keeping track of the demands listed off by the neurologist, physical therapist, and other physicians.  

Once home from the doctor’s office, the real task begins. Learning to use new assistive devices, figuring out how to involve paid caregivers, and getting the proper care equipment for your pALS to list a few challenges left to caregivers. One caregiver reported, after their pALS was given a PEG because they could no longer swallow food: 

“The first time the hospital ordered the PEG food. It arrived at our door the day after. The next time, when we started to run out of food, I called the company providing the food. I ordered, and everything went well. The second time I called, they asked me if I could call Social Services, ‘because they hadn’t got any papers approving that she should have the PEG food. And when I called the Social Services... Well, first they asked if they could talk to her. “No, sorry, she only talks through a machine, so…,” I said. “Well, are you the proxy to formally talk on her behalf?” they asked. “I have been married to her for 20 years,” I said. “Okay, but we need to send you a form to sign,” to make me the proxy. But then I said, “I haven’t installed this PEG, they did it over at the hospital.” But it didn’t help, I had to fill in the form. There was nothing else to do but to hang up on them. But I got the food, finally, because I called them up later.” 

Caregivers are our heroes because they overcome these, and countless other challenges, in trying to give the best life to their pALS. A burdened caregiver, after calling ALS “the worst illness imaginable,” shared, “For some strange reason, I found strength during that period, I even slept well. I thought: ‘This is my life; I just have to make the best out of it … and be strong’. And I think I handled it really, really well, actually.”  

Another caregiver recounted, “I was told all the time: ‘You are not supposed to be the caregiver for your wife. You’re her husband.’ I was told that a million times. But did I listen? It was the only chance she had to eat anything. She loves food, and so much of what we had together revolved around food, I still cook for her a lot…”  

Learning to balance these various aspects of life can be challenging to say the least, but you can do it! Connecting with local ALS communities or on Facebook is one of the best ways for you to know how to manage both big and small tasks. And although it may not feel like it at the time, every single thing you do is worth it. Thank you caregivers! 

Jacob Ahlstrom
About the Author

Jacob Ahlstrom - Jacob is a Neuroscience undergraduate at Brigham Young University. Jacob's interest in researching and writing about ALS is fueled by his hope to make the process easier for everyone else. Over the last year he has worked alongside Seth Christensen to find ways to educate and connect ALS patients.