What to Say to a Loved One With ALS: 11 Messages

Updated

Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

Not knowing what to say to someone with a terminal condition can lead to avoidance. Although this is a normal reaction, your loved one needs you now more than ever before. ALS (amyotrophic lateral sclerosis), or Lou Gehrig’s disease, is a terminal condition with no cure. Some people live for many years with the disease while others are taken quickly.

Jump ahead to these sections:

ALS’s course is a slow deterioration of the ability to walk, talk, eat and eventually breathe. Your loved one may be diagnosed while they are relatively young or when they’re older. The caregiving duties for someone with ALS can be arduous and stressful.

Coping with a loved one’s terminal condition can make extraordinary emotional and physical demands of you. Sometimes the daily caregiving tasks can be overwhelming, but remember that what you say will bring exceptional comfort and healing to your loved one.

What to Say to a Loved One Just Diagnosed With ALS

You know your loved one best. You have to choose what to say that will resonate with your loved one’s personality and preferences. Accept that you may make some mistakes, and if you blunder in what you say, just apologize and ask for guidance on how you can do better. 

1. I am here to support you in ways that are meaningful to you.

Your idea of support may be entirely outside what your loved one wants and needs. Simply ask how you can support them. You may be surprised at what your loved one says. It might be physical comfort, encouragement, spiritual guidance, humor, or help completing their bucket list.

2. ‘We will take this journey together side by side.’

When we are in our greatest times of need we have that may not be realistic but is there nonetheless. Reassurance is crucial at this point, and let your loved one know that you will go through the journey together, regardless of how tough things get.

3. ‘This is not your fault.’

When people are diagnosed with a terminal condition, they may think that they are somehow at fault. There are no identifiable risk factors for ALS except for family history, so nothing that anyone does or doesn’t do increases the risk of getting ALS.

4. ‘I will keep you safe.’

As ALS progresses, the loss of function can be terrifying. Your loved one will slowly become more and more dependent on you to keep them safe and comfortable. What this entails on your part is being prepared for what will come before it does. Read, join support groups and educate yourself about what to expect and plan now.

5. ‘Express what you are feeling, no matter what it is.’

The shock of a diagnosis of ALS can be crushing. Feelings of hope and despair throughout the illness are normal, but your loved one might be reluctant to burden you with their overwhelming emotions. Let them know that expressing what they are feeling is something you want and will accept.  

6. ‘I love you no matter what happens.’

When diagnosed with a terminal condition that might mean years of caregiving, you can understand how someone would doubt your unconditional love. Continue to let your loved one know that you love them, especially during times of stress and strain.

Words of Encouragement for a Loved One With ALS

Words of encouragement are a tricky balancing act. You’ll know immediately whether you have said the right thing, so pay close attention to what your loved one needs. Sometimes, people resent being told something to make them “feel better” when what they need are realistic and healing words. 

7. ‘We only have today, so how can we bring more wellbeing into your life?’

Encouraging the idea of staying present in the moment can have a powerfully positive effect on people with a terminal condition. Racing thoughts about the future can cause intense anxiety and depression. Regardless of how ill your loved one is, there is always something that can bring more wellbeing to their life today. It might be going outside to hear the birds or listening to music you both enjoy, watching a favorite movie, or a road trip.

8. ‘There are many things you can do. Let’s talk about the ones that are important to you.’

Feelings of hopelessness and helplessness are common responses to a debilitating terminal illness like ALS. To instill a feeling of control, courage, and empowerment, encourage your loved one to do what they can to feel joy and passion. It might take a herculean effort, but with enough planning, you can make just about anything happen. 

9. ‘I want you to tell me what makes you feel calm.’

Help alleviate your loved one’s anxiety by asking them to tell you what works. Guessing might be a waste of valuable time. Once you know what actions or words help your loved one feel calm, change your approach, and make it a daily routine. Try not to get defensive about suggestions on how to adjust your care. 

10. ‘Your mental abilities are the same. Let me know how we can keep you mentally engaged.’

People with ALS experience profound physical changes, but their minds stay intact. A good example is Steven Hawking, the brilliant physicist who was diagnosed with ALS in 1963 but lived until 2018 when he died at age 76 after living with ALS for 50 years. He worked and published research almost up until his death. Granted, his public stature and scientific prowess allowed him access to medical technology not available to the average person. 

If your loved one’s mental abilities and communication are important to them, find ways they can continue to stay mentally active and engaged.

11. ‘Let’s look at inspirational quotes together.’

Inspirational quotes for people with a terminal illness can be very uplifting. Reading them with your loved one will allow them to talk about what resonates with them and helps to lift their spirits.  

What NOT to Say to a Loved One With ALS

Deciding what not to say to a loved one with ALS is like walking on eggshells, isn’t it? You will probably say something at some point that your loved one won’t appreciate, but these are some to avoid. 

‘You are so brave.’

You’ve heard this one before, haven’t you? The fact of saying this puts enormous pressure and expectation on someone who may not feel brave at all. They might feel scared, weak, and overwhelmed. Fear of death and the unknown might be recurring thoughts. 

What can you say instead? “I know you are doing everything you can to manage this. I also know you are frightened, and I am here to help.”

‘I know how you must feel.’ 

The fact is you have no idea how your loved one feels because you haven’t been in their shoes. The experience of dealing with a terminal illness is a lonely journey that your loved one faces each day. They may hide some of their emotions, and others come tumbling out unexpectedly. 

What can you say instead? “I don’t know how you feel, but I want you to tell me whenever you need to. I am here to listen.” 

‘We can beat this.’

Unfortunately, there is no defeating ALS. No matter how much courage or fight you both have, the illness eventually ends in death. Saying that you can beat it gives false hope while you could both focus on the quality of life. 

What can you say instead? “We don’t know how long we have, so let’s make the most of every day.” 

‘There is a reason for everything.’

For some people, their spiritual faith gives them a purpose in times of crisis or tragedy. But, your loved one may not feel that way, even if they have strong faith. Sometimes there is no explanation for the tragedies that affect people. Your loved one might think that saying “there is a reason for everything” demeans their experience. 

What can you say instead? “Everything we face in life has meaning and makes us the people we are.”

Other Ways to Help or Support a Loved One With ALS

There are many other ways to help and support a loved one with ALS. You might try keeping a list of things that work and others to try as they come to you. These are just a few examples.

Touch

Touch is a basic human need. Intimacy with your loved one may suffer during the course of the disease, but there are ways to stay physically connected. Offer a massage, or just the simple act of soothing touch during times of sadness or frustration.

Be the visionary

Regardless of what your loved one can’t do, there are many things they can. Think outside the box and offer inspiration by coming up with creative activities you can do together. Talk about your loved one’s “bucket list,” and even if some aren’t feasible, adapt and do what you can.

Get out in nature

Being cooped up is not healthy. Get your loved one out in nature, or at the least, into the sunshine. Being outside elevates mood. If possible, go to a park that is accessible if your loved one is in a wheelchair. Yes, it takes time to go outside, but it will be well worth it. 

Involve other family members

The symptoms of ALS can be discomforting for people to be around. Don’t let that stop you from making a concerted effort to urge other family and friends to visit and help in ways that they can. People will become more comfortable the more often they are with your loved one. 

Think about the little things

The little things can have a significant impact on your loved one’s mood and well-being. Thoughtful gestures and even small gifts show that you care. Possibilities are a special meal, a surprise day-long road trip, or anything that your loved one will appreciate. 

Take care of yourself

To be a mindful and competent caregiver, you have to care for yourself. If your health suffers, then your ability to provide care for your loved one will suffer, as well. Emotional and physical exhaustion can take a toll and lead to caregiver burnout.

Focus on the basics such as good nutrition, exercise, relaxation techniques, and counseling if you need it. And, ask for help from friends or family, and consider professional caregivers to give you some relief. 

What to Say to a Loved One with ALS

Knowing what to say to a loved one with ALS will take practice. The relationship between you has changed, and the adjustment is profound. Try to be patient, compassionate,  and flexible as you go through this journey together. 

Icons sourced from FlatIcon.