I’m caring for someone with ALS
Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. In basic terms, it means the brain is no longer able to communicate with the muscles of the body that people are typically able to move at will.
As ALS progresses, people living with the disease will find it more difficult to walk and move around, and they will eventually require support to do so. Their symptoms will gradually worsen and take away their ability to move, swallow, speak and eventually breathe. How fast and in what order symptoms occur is different from person to person.
After a diagnosis
Life changes after an ALS diagnosis. There are decisions to make, symptoms to manage, treatment options to evaluate, and adjustments to almost every detail of your care recipient’s daily routine. It’s a lot to take in. You may be feeling a range of emotions, which is only natural. For more about this topic, see how you might be feeling after a diagnosis.
Learn as much as you can
The more you can learn about ALS, the better you’ll be able to help your care recipient make decisions about care, therapy, and end-of-life planning. Talk to your care recipient’s healthcare team about what you need to be prepared for as the disease progresses.
Make a plan
Have discussions with your care recipient about long-term care, such as breathing and feeding supports, before such interventions are necessary, and, before communication becomes more difficult. Talk to the person’s healthcare team about what options and supports are available.
Types of support you may need to provide
ALS is not a common disease, and it is unlikely you or your family will know anybody else who has been impacted. Encourage your care recipient to join an ALS support group to connect with and get advice from other people who have ALS and who may have more experience with the disease. A support group can also help them deal with the emotional struggles that come with a diagnosis.
- Help them live as normally as possible. Encourage them to continue with their usual day-to-day life as much as they can
- Encourage them to share their feelings with you. Let them know it’s OK to express fears and concerns about what is going to happen
- Coping with a critical illness sometimes means that you and your care recipient will need to take some time alone to think, reflect or just take a break
Personal care, physical and medical support
You may be asked to help someone:
- Walk or move around with a walker or wheelchair
- Get in and out of the tub or shower or give sponge baths in bed
- Get into or out of a bed or chair or help them turn or roll over in bed
- Use the toilet or bedpans or change incontinence pads
- Brush their teeth, keep lips moist or rinse their mouth
- Wash their hair, moisturize skin and trim their nails
- Take and monitor their medications
- Determine what you are and aren’t comfortable doing. Be honest with yourself and the person you’re caring for about what you can realistically do
- Talk about your role – it’s important that you, your care recipient and the healthcare team know what you will be doing as a caregiver
- Look into what home care services are available where you live. Home care staff can help with administering medication, bathing and also teach you tasks like how to turn someone in bed
- Ask about getting assistive devices such as a walker, lift, wheelchair, shower chair, grab bar, portable commode or communication devices
Someone with ALS may experience difficulty swallowing, which will require specialized food, assistance with eating, and possibly a feeding tube.
- Plan for food that is softer or smoother, such as porridge, apple sauce, and mashed potatoes; chop or mince food into smaller pieces; puree food in a blender
- When eating, have your care recipient sit up straight in a bed or chair
- Have your care recipient take small bites. Try using a teaspoon rather than a tablespoon
- They should chew each mouthful thoroughly before swallowing
- Small, frequent meals may be easier to eat and digest
- Ask an occupational therapist or dietician about assistive devices, such as dishes with gripper pads, cutting utensils made for one-hand use and modified cups
At some point, your care recipient’s medical team may recommend a feeding tube to supplement what they are able to eat. Even though the idea of a feeding tube may be scary, it can make life easier by allowing your care recipient to get the nutrition and liquids they need.
ALS affects muscles of the tongue, lips, and throat. As the disease progresses, your care recipient may experience difficulty speaking.
- If your care recipient still has the use of their hands, have them carry a notepad with pen or an erasable whiteboard to write messages
- Work out hand signals for frequently used phrases and non-verbal yes or no signals (using eye blinks or head movements)
- Try to frame questions so that they need only a yes or no answer
- Ask the person if it is ok for you to guess part of their message
- Don’t simplify sentences when you speak – impaired speech does not mean impaired hearing or understanding
- Talk to your care recipient’s healthcare team about other options ranging from low–to–high tech alternative and augmentative communications devices: from alphabet boards to electronic devices and apps
Medical interventions and end-of-life care
At some point, you may be required to make a decision about medical interventions. You may also need to make decisions about end-of-life care, which is a very difficult and emotional responsibility.
- Talk to your care recipient about their wishes – having open discussions and making decisions together can ensure their wishes are met and help avoid having to make rushed decisions during a crisis
- Help them create an advance directive, which is a legal document that lets their healthcare team and loved ones know what kind of healthcare they want, or who they want to make decisions for them when they can’t
- An example of an advance directive is a Do Not Resuscitate (DNR) order, which means they don’t want CPR (cardiopulmonary resuscitation) or other extraordinary measures to be taken in order to save their life
- Talk to your care recipient’s healthcare team about any questions or concerns you may have regarding end-of-life care, including options for hospice and palliative care
- Reach out to the ALS Society of Canada for information, support services, their equipment program, and ALS clinics. They can also help you navigate healthcare options and connect you with the ALS community. Visit als.ca or call 1-800-267-4257
- Connect with other young caregivers in our online peer support group or be part of the conversation in our online forum
- See also, I’m caring for someone with mobility/physical disability
- Contact the Canadian Hospice Palliative Care Association or call 1-800-668-2785 for free resources and guides about hospice and palliative care
Not sure where to start? Call our 24/7 helpline or talk to us in our live chat to find resources in your community.
*Source: ALS Canada