How to support people affected by ALS
A caregiver breaks down the 3 main types of backing families need
I was recently asked, “What can I do to support someone diagnosed with ALS?”
I thought back to the days after my husband, Todd, was diagnosed with the disease. We knew little about it, except that it resulted in paralysis and usually death within two to five years.
I remember walking with my good friend, pushing our babies in strollers while our preschoolers pedaled bikes ahead of us. There wasn’t anything my friend could do to change the upending of our lives, but she listened as I tried to wrap my mind around our new reality.
As it turns out, Todd’s ALS progressed more slowly than predicted, and with the help of noninvasive ventilation, he is still with us.
Over the last 15 years, I’ve learned that people with ALS and their families need three kinds of support: social/emotional, practical, and financial.
Social and emotional support
As the disease progresses, socializing becomes more difficult, especially when breathing and speaking are affected — and it’s particularly hard when the person with ALS becomes homebound.
Todd has been homebound for five years. We can no longer get out to church or community events, and I often feel isolated.
I’m thankful for out-of-town friends and family who make yearly visits, and for a few local friends who stop by. Recently, friends brought over an Escape Room game, and we had a good time working the puzzles to get out of the room. We succeeded with 41 seconds left on the clock!
Over time, some people faded away from our lives. I don’t know why — maybe their lives got busy, or perhaps our world is too different to maintain ongoing connections. Or maybe it’s hard to walk alongside someone for many years when there’s no hope of getting better.
But for what it’s worth, even very occasionally touching base with somebody affected by ALS will go a long way to boost their spirits.
Practical support
When Todd was diagnosed, we decided to put our house on the market and move near my parents, because we knew they would provide practical support to help with our kids, house projects, and Todd’s care.
Family and friends helped us get our house ready to sell, and when it finally sold, they helped us move.
When we built our new home, we hired a builder to do most of the work, but we saved money by doing some things ourselves. Family and friends volunteered their labor to install cabinets, tile floors, and trim around doors, windows, and baseboards.
As the disease progressed, we’ve also needed caregiving support at night so I could sleep, and a few volunteers have helped with Todd’s night care over the years.
We’ve also been blessed with a neighbor who helps me keep up with snow removal in the winter — and has helped with other house projects that were beyond my abilities.
Financial support
People with ALS need accessible homes, bathrooms, and vehicles. In the United States, none of these are usually covered by insurance unless one is a veteran.
Our biggest out-of-pocket expense has been caregiving, another expenditure not typically covered by insurance. Todd needs 24/7 care, but I need to sleep. I take care of Todd 18 hours a day, and we hire care for six hours each night. That costs over $50,000 a year, none of which is covered by Medicare or his secondary insurance, and the cost far exceeds what we can afford on his disability income.
Thankfully, we have been able to fund his night care with the help of generous family and friends. We have some people who give a monthly gift that covers one or more nights of care. Others give a yearly gift. We would not be able to keep going without their support.
What can you do?
If you want to help someone with ALS, show up. Give the gift of presence. Help out in practical ways. Give financially.
And keep doing those things, because as time goes on, life with ALS only gets more difficult to manage, and it becomes increasingly hard to maintain connections and form new friendships.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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