Information Guides

The ALS Caregiver’s Field Guide

Practical guidance from someone who’s been there.

ALS evolves quickly. Something that worked last month, or even last week, may suddenly stop working. New equipment arrives. Physical abilities change. Roles within relationships change. Care needs increase. The life of the person with ALS, the caregiver, family members, and people connected to the household can all change dramatically. And somehow, while all of this is happening, there are appointments to schedule, benefits to navigate, decisions to make, meals to prepare, and a life still being lived.

It can feel impossible to keep up.

This Field Guide grew from our family’s experience with ALS and from lessons shared with us by caregivers, healthcare professionals, social workers, hospice providers, and those who helped us along the way. It is not a prescription for how to live with ALS.

Every person, family, relationship, and experience with this disease is different. Your family’s way through this will be unique to your circumstances, your relationships, your needs, and the person living with ALS.

We believe deeply in autonomy. Our goal isn’t to tell you how to do this. It’s to share what we learned, including the things we wish someone had told us earlier, so you have more information and more possibilities as you decide what is right for you and the people you love. Take what helps; leave what doesn’t.

The person you love needs care. So do you. Caring for yourself is not separate from caregiving; it is part of it.

This guide is organized around three parts of the caregiving experience:

Finding Your Footing
Practical guidance for navigating changing needs, learning the mechanics of care, and building the right support around you.

Preserving the Life Inside the Care
Making room for safety, dignity, autonomy, comfort, and the life that is still being lived alongside ALS.

Caring for Yourself and Each Other
Supporting your own nervous system and emotional well-being while making room for the complicated, very human experience of caring for someone you love.

Finding Your Footing

1. You Don’t Have to Solve ALS Today

Our Experience

In the beginning, it felt like something changed every few weeks. Mykl began losing the use of his right arm. Getting dressed became difficult. Then bathing became difficult, so we got a shower bench and I learned how to help him bathe safely. Shortly after, he began falling. Stairs that had been completely ordinary became dangerous, so we moved downstairs. Then the wheelchair arrived.

Later came the hospital bed, Hoyer lift, suction equipment, breathing equipment, and new ways of doing things we had never previously thought about. Every change seemed to create another problem that needed solving. I wanted to get ahead of ALS. Eventually, I realized I couldn’t.

What We Learned

You cannot solve the entire disease at once. ALS progresses differently for different people, and trying to prepare today for every possible need tomorrow can become overwhelming very quickly. But waiting until the middle of an emergency isn’t ideal either.

Deal with what is happening now, while looking just far enough ahead to prepare for what may reasonably be coming next. A solution doesn’t have to last forever. It has to help with what is happening in the moment. When circumstances change, you adapt again. That isn’t failure. That’s caregiving.

What You Can Do

It is easy to become so overwhelmed by everything that might happen that you don’t know where to begin. Start with what is pressing today. These questions can help you identify the next problem to solve:

  • What is becoming difficult right now?
  • What is becoming unsafe?
  • What seems likely to change next?
  • Is there equipment we should learn about before we urgently need it?
  • Who can show us how to do this safely?

Watch for This

Try not to wait until something becomes dangerous before making a change. At the same time, try not to remove independence simply because something might happen. Safety matters, but so does autonomy. Whenever possible, make changes with the person living with ALS, not for them.

I learned this is relevant in small moments too. Once, I got frustrated with Mykl for doing the dishes because I wanted him to conserve his limited energy for something more important. He pushed back: “Let me do it. Let me feel normal. Let me contribute in the small ways I still can.” The task was ordinary. What it represented was not.

PERMISSION SLIP

You have permission to not know what you’re doing yet.

You are going to encounter equipment you’ve never seen, physical care you’ve never performed, systems you’ve never navigated, and decisions you’ve never imagined having to make.

You do not need to know all of it today.

Learn the next thing. Ask for help. Adapt when things change. That is enough.

2. Learn the Mechanics Before the Emergency

Our Experience

Nobody taught me how to physically care for a full-grown adult before I needed to know how. I learned how to help Mykl dress, bathe, transfer, and position his body; how to use a Hoyer lift; how to change bedding with him still in the bed; and how to manage equipment without turning every movement into a hazard. These skills became ordinary to us, but they weren’t ordinary in the beginning. At first, I was simply a wife trying to figure out how to safely move the man I loved.

What We Learned

There are some caregiving skills you should not have to figure out through trial and error. Moving another adult incorrectly can hurt them. It can also hurt you. When you’re exhausted, frightened, and responding to something at 3:00 in the morning, that is not the ideal time to learn a complicated physical task for the first time. Learn the mechanics before you desperately need them.

What You Can Do

There are practical skills you can ask to be shown and practice before an emergency requires you to know them. Start with your ALS clinic or medical team. Depending on the skill, that may include your neurologist, nurse, respiratory therapist, occupational therapist, physical therapist, speech therapist, or social worker. A caregiver agency or hospice team may also be able to provide or arrange appropriate training. Depending on your loved one’s needs, these skills may include:

  • Safe transfers using a gait belt
  • Positioning in bed and in a chair
  • Rolling and turning
  • Bathing and toileting
  • Changing bedding with someone still in bed
  • Using a Hoyer or other patient lift
  • Wheelchair safety
  • Fall prevention
  • Protecting your own back and body
  • Safe ways to give oral medications in bed, when appropriate for the person’s swallowing and medical needs

If your loved one has completed a Physician Orders for Life-Sustaining Treatment (POLST) form or advance directive, keep copies where caregivers and emergency responders can find them quickly, and consider keeping a copy that travels with the person. We kept ours on the refrigerator for easy, fast access. Ask your care team what placement they recommend for your situation.

Watch for This

Ask someone qualified to show you, not simply explain it. If a task is designed to be done with two people but you may sometimes be alone, ask explicitly what is safe, what is not, and what alternatives are available. Do not improvise beyond what you have been trained to do.

I practiced the Hoyer lift repeatedly with an experienced registered nurse until I understood the mechanics and felt comfortable keeping both Mykl and myself safe. That practice mattered.

Love does not make your body indestructible. Your loved one’s safety matters. Yours does too.

PERMISSION SLIP

You have permission to say, “I can’t do this safely by myself.”

That is not weakness. It is information.

Ask for another person. Ask for equipment. Ask to be shown another way.

You do not have to injure yourself to prove how much you love someone.

3. Build the Right Care Team: Know That It May Take Time

Our Experience

For a while, I was working full time and caregiving at the same time. As Mykl’s needs increased, we hired professional caregivers. I assumed that bringing in paid help would make our lives easier. Often, it didn’t.

Over time, we went through roughly twenty-five caregivers and four agencies. Many arrived without the skills our household needed and had to be trained repeatedly by us. Mykl was a nurse practitioner and knew exactly what he needed, so he often had to spend his own limited energy training the people we were paying to help us. ALS was already depleting his physical reserve; having to use that energy teaching caregivers how to care for him was the opposite of what paid support was supposed to provide. Instead of reducing the chaos, caregiver turnover and inadequate training often added to it. It became one of the reasons I eventually had to leave work and take FMLA.

Then we found the right agency and an experienced caregiver who truly understood complex physical care. Our world changed. For the first time, help actually felt like help.

Near the end of Mykl’s life, that caregiver left suddenly. We were devastated. And then, unexpectedly, the final weeks largely alone together became precious to us. Both things were true: losing dependable support was frightening and painful, and the privacy we gained became a gift I could not have anticipated.

What We Learned

Paid caregiving and helpful caregiving are not automatically the same thing. The right caregiver should reduce the physical workload, understand the person receiving care, learn the rhythms of the household, and allow the primary caregiver to truly step away. The wrong fit can create more work.

It may take time to find people you trust, and even excellent caregivers are human. They may become emotionally affected. Their circumstances may change. They may leave. A care team is not something you build once and then forget. It may need to change as the disease changes.

What You Can Do

Ask agencies specifically about experience with mobility limitations, lifts, transfers, respiratory equipment, communication challenges, and the level of care your loved one currently needs. NorCal ALS, Inc. also has a “Questions to Ask When Evaluating a Caregiver Agency” guide to help families prepare for these conversations.

Questions to Ask When Evaluating a Caregiver Agency: norcalals.org/questions-to-ask-when-evaluating-a-caregiver-agency/

  • Include the person with ALS in caregiver selection and training whenever possible.
  • Notice whether a caregiver actually reduces the household workload after the learning period.
  • Keep written routines and key care information so one person does not hold all of the knowledge.
  • Have a backup plan when possible.
  • Use friends and family for concrete nonmedical tasks too: meals, errands, pets, transportation, paperwork, phone calls, or sitting with your loved one.

Watch for This

Do not assume that because you are paying for help, you must accept help that makes the household less safe or significantly more chaotic. At the same time, allow for a learning curve. A new caregiver will not immediately know your loved one the way you do. The question is not whether they know everything on day one. It is whether they listen, learn, respect the person receiving care, and become more helpful with time.

PERMISSION SLIP

You have permission to keep looking for the right help.

Needing help does not mean you must accept every person who arrives at your door.

You are allowed to ask questions. You are allowed to teach. You are allowed to say a caregiver is not the right fit.

And when you find someone trustworthy, you are allowed to lean on them.

You are still the caregiver when other people carry part of the load.

Preserving the Life Inside the Care

4. Create Safety and Sanctuary Wherever Care Happens

Our Experience

When Mykl needed a hospital bed, we put it in the middle of our living room. As he became increasingly immobile, I wanted our lives to flow around him rather than have him tucked away while life happened somewhere else. That worked for us, and, most importantly, it was what Mykl wanted.

From his bed or chair, he could see our hummingbird garden and fountain. He could see the backyard. He could hear me cooking and playing piano. Rush was almost always nearby. We also had medical equipment everywhere, so we organized it. We secured cords, kept pathways open, put frequently needed equipment where we could reach it quickly, and made enough room to safely use the Hoyer lift and move his wheelchair.

I wanted the room to work during an emergency. But I also wanted it to still feel like our home.

What We Learned

Medical care can take over a space very quickly. Safety matters. But so does the experience of living there. Wherever care happens, consider both: What makes this space safer? What makes this space feel like theirs?

For Mykl, that meant nature, music, Rush, familiar food, favorite shows, and being in the middle of household life. For someone else, it might mean privacy and quiet.

What You Can Do

  • Keep pathways clear.
  • Secure cords and tubing.
  • Make frequently used equipment easy to reach.
  • Leave enough room for mobility equipment and safe transfers.
  • Reassess the space as equipment and abilities change.
  • Bring in favorite photographs, objects, music, lighting, blankets, or other familiar comforts.
  • Ask the person receiving care what makes the space feel right to them.

Watch for This

Our family was able to care for Mykl at home. Not every family can. Not every person wants to. ALS may require care that cannot safely or sustainably be provided in a particular home. Financial circumstances, housing, caregiver availability, medical needs, and personal preferences are different for every family.

Where care happens is not a measure of how deeply someone is loved. Sanctuary is not an address. It is the experience of being treated with safety, comfort, dignity, familiarity, and care.

PERMISSION SLIP

You have permission to choose the care setting your family can actually sustain.

Home is not the only place where loving care can happen.

If care needs exceed what you can safely provide, choosing more support is not abandonment.

Love is not measured by an address.

5. Preserve Dignity as Independence Changes

Our Experience

For months, I made safety rules. And Mykl broke them.

One evening, after we had agreed that the stairs were no longer safe, I told him I needed a break. I made sure he had everything he needed downstairs and went upstairs to call my friend. About fifteen minutes later, I heard a terrible crash. I ran downstairs and found Mykl at the bottom of the stairs. He had fallen hard enough to dent the wall with his head. Thankfully, he wasn’t seriously injured.

Once I knew he was okay, I was furious. We had already decided the stairs weren’t safe. I desperately needed that little bit of time, and suddenly I was managing another frightening emergency that seemed entirely preventable. Versions of this happened again: I made a safety rule, Mykl resisted it.

I admit, it took me much longer than I wish it had to understand what I was witnessing. I was trying to keep him safe. He was trying to remain free. Walking upstairs wasn’t simply walking upstairs. It was something he had done without thinking for more than fifty years. Now another adult, even one who loved him deeply, was telling him he couldn’t do it anymore.

ALS was taking away more and more of his independence. Some of what I had interpreted as stubbornness or defiance was also something else: independence, adulthood, life force. He was still fighting to be himself. Once I understood that, I was grateful for his fight.

What We Learned

This may be one of the hardest tensions in caregiving: safety matters, so does autonomy.

As abilities change, caregivers naturally begin seeing risk everywhere. Sometimes the risk is very real, but if we aren’t careful, protecting someone can gradually become controlling. The person living with ALS may make choices you wouldn’t make. They may accept risks you wouldn’t accept. They may resist help. They may desperately want to continue doing something for themselves because being able to try still matters.

The conversation can’t only be, “How do I keep you safe?” It also needs to include, “What matters enough to you that you’re willing to accept some risk to keep doing it?”

What You Can Do

  • Ask what matters to them about continuing an activity.
  • Ask how you can make it safer without automatically taking the choice away.
  • Ask what help they are comfortable accepting.
  • Return small choices whenever you can: what to wear, bed or chair, music or quiet, what to watch, what game to play, now or later, who helps, door open or closed.

Watch for This

Caregiving can quietly change a relationship. A spouse can begin to feel like a parent. A parent can begin to feel like a nurse. An adult can be spoken to like a child. Requests can become instructions. Concern can become surveillance. Safety can become the reason the caregiver makes every decision. Watch for that. Physical dependence does not diminish personhood.

PERMISSION SLIP

You have permission to let someone you love make choices you wouldn’t make for them.

You can explain your concern. You can say you’re scared. You can help make the choice safer.

And when the person you love is able to make their own decisions, you can remember: This is still their life.

Safety matters. So does autonomy.

6. Remember: A Life Is Still Being Lived

Our Experience

One of the things Mykl and I discovered was what we came to call “joy in the mundane.” Even as ALS narrowed our world, ordinary life kept happening around the disease. That fuller story is part of Our Story above; the lesson we carried forward was simple: the disease was real, and so was the life happening around it.

What We Learned

ALS can consume the household: appointments, equipment, insurance, medication, transfers, breathing, eating, bathroom needs, paperwork. It can become easy for everyone, including the person with ALS, to disappear underneath the management of the disease.

Keep looking for the person. You do not need to manufacture profound moments. Sometimes a good bowl of soup is enough. Sometimes someone simply saying, “I’m here,” is enough.

What You Can Do

  • Ask, “What would make today feel good?”
  • Notice what still makes the person laugh.
  • Keep favorite music, food, games, shows, people, pets, nature, or routines within reach when possible.
  • Talk about things other than ALS.
  • Let ordinary days remain ordinary.
  • Ask yourself what would make today feel a little better too.
  • If you are a friend and don’t know what to say, say exactly that, and let the family know you are still there. It helps more than you can imagine.

Watch for This

Do not put so much pressure on “making memories” that ordinary life becomes another caregiving assignment. You do not need to create a perfect final chapter. You do not need a bucket list. Some days are just hard. Some days everyone watches television. Some days nothing beautiful happens. That is life too. And when joy appears in something small, you are allowed to let it be enough.

PERMISSION SLIP

You have permission to enjoy this life while it is still happening.

You don’t have to feel guilty for laughing. You don’t have to make every moment solemn because someone is dying.

If something tastes good, enjoy it. If something is funny, laugh. If a hummingbird appears outside the window, watch it.

Joy does not deny what is happening. Joy in the mundane is still joy. It belongs here too.

Caring for Yourself and Each Other

7. Your Nervous System Is Part of the Care Plan

Our Experience

For much of the first ten months after Mykl’s diagnosis, I was still working full time from home. My office was upstairs. Mykl was downstairs. I could be on a Zoom call while another part of my brain was listening for him: Was that a fall? Did he call me? Was he choking? Did something sound different? Eventually, I didn’t have to consciously listen anymore. My body did it for me.

Even when someone else was there to help, it could be difficult to completely let my guard down. So I began looking for small ways to give myself a break. When a trusted caregiver was with Mykl, sometimes I went upstairs, closed the door, and took a real shower. Sometimes I cried in that shower. Sometimes I put my feet in our cold pool. Sometimes I exercised.

And sometimes, during a difficult conversation with Mykl, I recognized that I couldn’t be fully present. I’d ask, “Can we pause this conversation so I can come back and be more present for it?” I’d move my body, settle myself, and come back. Those pauses mattered.

What We Learned

Caregiving isn’t only something you do with your hands. Your whole body participates. When someone you love falls, chokes, has trouble breathing, or suddenly needs physical help, you may find yourself constantly listening and watching. You may startle easily. You may have trouble relaxing when help finally arrives. You may feel exhausted and strangely unable to rest at the same time.

You don’t need to analyze it. Start by noticing it. Your nervous system is part of the care plan. Supporting yourself is not separate from caring for the person you love.

What You Can Do

  • Step outside for a few minutes.
  • Take a shower when someone trustworthy has the watch.
  • Listen to music.
  • Move your body in a way that feels good.
  • Eat something and drink some water.
  • Call someone who doesn’t require you to pretend you’re okay.
  • Cry.
  • Sleep when you get the chance.
  • Sit quietly and do nothing.
  • When someone trustworthy takes over, let them actually take over.
  • Breathe long, deep breaths.

Watch for This

Sometimes help arrives, but the caregiver never actually stops caregiving. Someone else may be sitting beside your loved one while you’re three rooms away listening to every sound. Technically, you have help. But you haven’t handed over the watch. When you trust the person who is there, practice doing exactly that.

PERMISSION SLIP

You are allowed to stop listening.

When a trusted person takes over, you are allowed to close the door.

Take the shower. Go outside. Sleep. Cry. Sit somewhere quiet and do absolutely nothing.

Someone else has the watch.

You do not have to be on duty every minute to be a devoted caregiver.

8. Permission to Feel All of It

Our Experience

Caregiving can bring emotions you expect and others that may surprise you.

There can be fear and sadness, but also anger, resentment, loneliness, guilt, numbness, and grief. You may grieve the life you had before illness entered it. You may grieve plans that have changed, roles within your relationship that have shifted, or parts of the person you know that the illness has changed. You may miss the person they were, the relationship you had, or the life you shared before the illness changed it. You may miss who you were in that life, too.

And sometimes the hardest feelings are the ones you think you are not supposed to have.

You may desperately want the caregiving to end. You may want your old life back. You may feel trapped by circumstances you never chose. You may feel surrounded by people who care about you and still feel completely alone.

You may not feel acceptance. You may not feel gratitude. You may not even be able to access the love you know has been there.

What We Learned

There is no right way to feel your way through caregiving.

Emotions do not arrive in an orderly progression. You may not feel acceptance, gratitude, or hope. That is okay.

Serious illness can create losses long before death. Independence, intimacy, routines, roles, plans, communication, freedom, and the future you imagined may all change. Those losses are real, and you are allowed to grieve them.

Trying to push away feelings that seem wrong, inappropriate, or even awful does not make them disappear. It can simply make an already difficult experience lonelier.

A feeling is not a decision. It is not an action. And it is not a measure of who you are or how well you are caring for someone.

What You Can Do

Name what you are feeling without judging it. Sometimes simply saying, I am angry. I am lonely. I am grieving. I am exhausted. I feel lost, can create a little room around the feeling. You do not have to immediately fix it or make it mean something.

Give yourself somewhere safe to tell the truth. Some thoughts may feel frightening or even shameful to say out loud. I don’t want to do this anymore. I want my old life back. I just want this to end. Find someone you trust who can hear the truth without judging you, whether that is a friend, therapist, caregiver support group, spiritual advisor, or another caregiver. You deserve a place where you can be honest about what you are feeling without having to edit yourself.

Recognize the losses that happen before death. You do not have to wait for someone to die before you are allowed to grieve. Illness can change the person you love, your relationship, your responsibilities, your independence, and the future you thought you would have. Acknowledging those losses does not mean you are giving up.

Watch for This

Be careful of turning difficult emotions into evidence that you are failing.

Caregivers can place enormous expectations on themselves about how patient, loving, grateful, generous, or strong they are supposed to be. When their actual feelings do not match those expectations, guilt and judgment can become another burden to carry.

You do not have to turn every difficult feeling into a lesson. You do not have to immediately make it go away.

And you do not have to carry everything alone. If what you are feeling becomes too much to hold by yourself, reach for someone who can help you carry it. Your ALS Association social worker can be an extraordinary resource. They understand the realities of ALS caregiving and can be a safe person to call when you are overwhelmed, frightened, angry, or simply need someone who understands to listen.

PERMISSION SLIP

You have permission to feel all of it and know that it is okay.

It is okay to be angry or resentful.

It is okay to feel lonely, numb, overwhelmed, or lost.

It is okay to desperately want the caregiving to end.

It is okay if you cannot find acceptance, gratitude, or even access the love you know has been there.

Feelings are not decisions. They are not actions. They are not a measure of who you are or how well you are caring for someone.

Judging yourself for what you feel does not make you a better caregiver. It simply asks you to carry guilt on top of everything else you are already carrying.

You don’t need to carry that too. It’s okay.

9. Make Room for the Messy Parts: Come Back to Each Other

Our Experience

There was tremendous beauty in our experience with ALS. There was also a lot of mess. A frightening incident could be followed by laughter. Fear could be followed by Qwirkle. We could have a difficult conversation and then eat dinner. We learned to give each other room to express what we were actually feeling, even when it wasn’t tidy or quiet.

We also got really fast at apologizing to each other. Two days before Mykl died, we got into an argument. We knew he was dying two days later. We still had a fight. And within minutes, we were both searching for each other to apologize. We stopped wasting precious energy holding onto anger. We learned to come back to each other quickly.

What We Learned

You do not have to make this experience emotionally tidy. You may love someone deeply and be furious with them. You may be grateful and resentful. You may laugh five minutes after crying. You may lose your patience.

The goal is not a relationship without conflict. When you can, repair quickly. Say, “I’m sorry.” Accept the apology. Begin again.

Grief does not cancel joy. Anger does not cancel love. Exhaustion does not cancel devotion. Human beings can hold more than one truth at once.

What You Can Do

  • Notice what you are actually feeling without immediately judging it.
  • Find safe ways to express emotion: cry, talk, write, move, go outside, laugh, or ask for space.
  • When a conversation is going badly, try: “Can we pause this conversation so I can come back and be more present for it?”
  • Come back when you can.
  • Apologize when you need to.
  • Let forgiveness be simple when it can be.

Watch for This

Do not turn emotional expression into another thing you have to do correctly. Some people talk; some don’t. Some cry easily; some rarely cry. Some want therapy, prayer, silence, humor, movement, or privacy. There is no required emotional style for ALS. There is no requirement that you be endlessly patient because someone you love is dying.

PERMISSION SLIP

You have permission to get it wrong.

You may snap. You may argue. You may say something you wish you hadn’t.

When you can, come back. Apologize. Forgive. Begin again.

Love does not require perfection. It asks us to keep finding our way back to each other.