Caring for Someone with ALS: Managing Daily Care, Planning Schedules and Preventing Burnout
Caring for a loved one with ALS (Amyotrophic Lateral Sclerosis) is one of the most selfless and challenging journeys a person can take. It’s a role filled with deep love, but also with emotional, physical and logistical demands that can feel overwhelming.
As ALS progresses, the responsibilities of caregiving shift — from helping with mobility and daily activities to managing complex care routines, medical equipment and even communication challenges. Each stage brings new questions and adjustments, but also opportunities to build meaningful connection and support.
Whether you’re just beginning your caregiving journey or have been navigating it for a while, these strategies can help you manage daily care, plan ahead and protect your own well-being along the way.
Managing Daily Care
Daily care for someone with ALS is never one-size-fits-all. Each person’s experience with the disease is unique and the care needed will evolve. Establishing routines and systems early on can make daily life smoother for both you and your loved one.
1. Build a predictable routine
Having a consistent structure helps create stability and reduces stress. Set regular times for waking up, meals, medication, stretching and rest. Try to group tasks together when possible — for example, doing physical therapy exercises right after bathing, when muscles are relaxed.
Routines don’t just make your day more efficient; they also provide a comforting rhythm for your loved one, especially as communication or mobility becomes more limited.
2. Use assistive devices and technology
Don’t wait until things become too difficult before seeking adaptive tools. Power wheelchairs, communication devices and home modifications can dramatically improve independence and safety.
Many ALS United chapters and other organizations offer loan closets with equipment that can be borrowed or donated at no cost. This can save you both time and financial strain. If you need help finding one, reach out — there are programs dedicated to connecting families to these resources.
3. Keep clear records
A simple notebook or digital caregiving app can help you track medications, symptoms, appointments and equipment maintenance. Write down any changes you notice — even small ones. Over time, these notes become invaluable for care planning and communicating with healthcare professionals.
4. Accept help — and ask for it clearly
Many caregivers feel they have to do it all themselves. But caregiving works best as a team effort. When friends or family ask how they can help, give them specific options:
“Could you pick up groceries on Tuesday?”
“Can you stay with my loved one for an hour while I go for a walk?”
People genuinely want to help — they just need direction.
Planning and Scheduling
As the needs of your loved one increase, planning becomes a cornerstone of caregiving. Good organization can ease stress, prevent last-minute scrambles and ensure you have time for rest.
1. Use a shared care calendar
Digital tools like Google Calendar, Lotsa Helping Hands, or CaringBridge can coordinate care between multiple helpers. Include doctor appointments, therapy visits, medication refills and even “quiet days” for recovery.
A shared system ensures everyone stays on the same page and helps avoid double-booking or missed appointments.
2. Build flexibility into your schedule
ALS symptoms can fluctuate from day to day. Fatigue, breathing difficulty or emotional strain can alter plans unexpectedly. Keep buffer time between major activities so you can adapt without feeling rushed or guilty for needing to adjust.
3. Plan ahead for transitions
As care needs grow, anticipate what’s coming next, the best you can.
Will your loved one soon need a power wheelchair or a lift?
Is the home accessible enough for future mobility changes?
Should you start researching home health aides or respite care options?
Thinking ahead helps you avoid crisis moments and gives you time to make thoughtful choices. Your medical team or ALS clinic can often provide guidance and connect you with vendors or services covered by insurance.
4. Keep communication open
Regularly check in with your loved one about what’s working and what isn’t. Their needs, comfort levels and preferences will shift. Creating space for honest dialogue — even about difficult topics like end-of-life care — can bring peace of mind to both of you.
Recognizing and Managing Burnout
Caring for someone with ALS can be physically draining and emotionally heavy. It’s easy to put your own needs last — but when you do, burnout can sneak in.
Burnout might look like constant exhaustion, irritability, forgetfulness, or feeling detached from your loved one. Recognizing the signs early allows you to take action before it becomes overwhelming.
1. Give yourself permission to rest
You cannot pour from an empty cup. Schedule regular breaks, even short ones. Go outside for fresh air, listen to music, or take a nap while someone else sits with your loved one. Rest is not a luxury — it’s a necessity for sustainable care.
2. Seek respite care
Many ALS organizations, local agencies and faith-based groups offer respite services. This temporary care allows you to step away for a few hours or even days, knowing your loved one is safe and supported.
3. Join a support group
Connecting with other caregivers who understand what you’re going through can be life-changing. Support groups — both in-person and virtual — offer emotional validation, practical advice, and a reminder that you’re not alone.
ALS United and I AM ALS both host groups that meet regularly. These spaces are safe havens for sharing challenges, fears, and small victories.
4. Care for your mental health
It’s normal to experience sadness, frustration, or guilt. If those feelings linger or intensify, reach out to a counselor or therapist. Emotional support isn’t a sign of weakness — it’s a sign of strength and awareness.
You Are Doing Enough
There’s no perfect way to be a caregiver. Some days you’ll feel strong and capable; other days you’ll feel completely drained. What matters most is your presence, your love, and your willingness to keep showing up.
Caring for someone with ALS is not a journey meant to be walked alone. Reach out for help, accept support, and remember to care for yourself as fiercely as you care for your loved one. Every act of kindness — toward your loved one and toward yourself — makes a difference.
You are doing more than enough.
At The Golden Stem, we know that connection makes the caregiving journey lighter. That’s why we created a free tool called The Hive — a welcoming online forum where both caregivers and individuals living with ALS can share experiences, ask questions and support one another.
Whether you’re looking for practical advice, emotional encouragement, or simply a community that understands, The Hive is a space to connect, learn and feel less alone.
🟡 Visit The Hive today and join the conversation — you don’t have to go through this journey alone.
