How to Support Someone With ALS: Communication, Dignity and Closeness

How should you treat someone with ALS? Ways to keep communicating, protect their dignity and stay close as a family when speech and movement decline.

One morning you notice your father's hand trembling as he holds his tea glass; months later, the same hand can no longer lift it. ALS (amyotrophic lateral sclerosis) often begins with quiet changes like this and pushes a family to learn a language it has never used before. Speech slows, walking becomes harder, and eating starts to require care and attention. The question I hear most often during this time is this: how to support someone with ALS without hurting them or leaving them alone? In this article I look at ways for spouses, adult children and close relatives to protect communication, dignity and closeness. Medical decisions should always be made together with your neurology team; what we are discussing here is the human relationship that surrounds those decisions.

What Does an ALS Diagnosis Stir Up in the Patient and the Family?

ALS is a progressive illness that affects the nerve cells controlling the muscles. Its course varies enormously from one person to another, so generalisations online or other people's stories do not describe your loved one's path. The healthiest approach is to put every question about how the illness may progress to the doctor who is following them.

Psychologically, what makes ALS especially hard is that the person is often fully aware of the changes in their body. For many patients, the world of thinking and feeling stays vivid while the body obeys less and less. This can bring intense helplessness, anger, shame and grief. "I'm trapped in my own body" is a sentence people often use to describe this feeling.

In the family, the diagnosis usually triggers two opposite reactions. Some family members spring into action straight away: researching equipment, rearranging the house, chasing appointments. Others freeze; they find it hard to walk into the room or to look the patient in the eye. Both reactions are fed by fear, and both are understandable. But the patient senses this rush or this avoidance very clearly.

Some people also experience changes in the way they think, make decisions or regulate their emotions. If your loved one is reacting differently from before, for example having episodes of crying or laughing without an apparent reason, talk to the neurology team before interpreting this as a change in personality or as "being spoilt".

How to Support Someone With ALS: Core Attitudes

Although the answer to how to support someone with ALS changes with the stage of the illness, some attitudes hold true at every point. What they share is not reducing the person to their illness and continuing to treat them as the owner of their own life. The principles below can guide you both in the first months and in the periods when care needs increase.

Talk to them, not about them

Once someone's speech slows or stops, people start talking in front of them as if they were not there: "He hasn't got much of an appetite today", "She probably didn't sleep last night." Sentences like these can make the person feel like an object. Direct your question to them and wait for the answer; even if someone else is going to answer, look at them first.

Respect their mind

A weakening body does not mean a weakening mind. Speaking to them loudly, in simplified words or in a sugary tone as if to a child is hurtful. Keep asking their opinion about the household budget, a grandchild's school choices or what to plant in the garden. Being left out of family decisions can wound more deeply than the illness itself.

Ask before you help

Doing up a button, passing a glass, pulling out a chair… Well-meant gestures like these turn into a kind of takeover if the person still wants to do them themselves. Asking "Shall I help, or would you rather do it?" takes a few seconds but protects their say over their own life. Doing something slowly does not mean being unable to do it.

Show patience with time, not with words

With ALS, speech slows and sounds become unclear. Finishing their sentence, guessing and jumping in, or closing the subject with "Okay, okay, I understand" silences the other person. When you don't understand, be honest: "I missed the last word, could you say it again?" This is far more respectful than pretending to understand.

How Can Communication Continue When Speech Declines?

The period when speaking becomes difficult is one of the most worrying for families. Yet communication is a much broader field than words. A speech and language therapist and the neurology team can guide you in finding communication methods suited to the person. The family's part is to learn these methods patiently and weave them into daily life.

• Set up a yes-no system. Agree on a signal the person can make comfortably, such as blinking, raising their gaze or moving a finger. Ask questions one at a time, in a form that can be answered with yes or no.
• Use letter and word boards. A simple alphabet board, or a card listing frequently needed things, allows them to express a need without long explanations.
• Talk about technology early. Systems that let someone type or speak aloud using eye movements can be an important door for some patients. Discussing this with the team before speech is completely lost gives the person time to get used to it.
• Consider recording their voice. Some families find it meaningful to record favourite sentences, or messages for grandchildren, in the person's own voice. You may want to suggest this; but the decision is theirs.
• Don't lose your sense of humour. A misunderstood signal sometimes leads to funny moments. Laughing together is a reminder that communication is still alive.

Communication does not end where the voice ends; it continues for as long as someone keeps listening.

What to Say, and What Not to Say, to Someone With ALS

The sentences below are fictional examples. The aim is not to memorise them but to notice the difference in tone.

Sentences you may want to avoid:

• "Oh God, look what's become of you." (It reminds the person of what they have lost, as if holding up a mirror.)
• "Don't let your spirits drop; if you stay strong, the illness won't progress." (Linking the course of the illness to their mood creates guilt on bad days.)
• "If I were in your shoes, I couldn't bear it." (It isolates the person and hands your own fear over to them.)
• "You look so well today, it's as if you weren't ill at all." (It can give the impression that the difficulty they face is being played down.)
• "You can't do that, stop, I'll do it." (Taking over without asking undermines autonomy.)

Sentences you might try instead:

• "We're in no hurry; I'm waiting for what you want to say."
• "What kind of day is it today? Would you like to talk, or shall I just sit with you?"
• "We don't want to make this decision without your view."
• "If you're angry, I understand; you can be angry with me."
• "I can't wait to finish this series with you."

Living With ALS by Age and Role

ALS mostly appears in adulthood; however, the patient's age and role in the family markedly change the psychological burden they carry.

The working-age adult

For an adult who carries their job, the household income and their children's school routine, ALS means a shaken identity. The thought "What use am I now?" is common. It is important to give this person the chance to keep the roles they can still fulfil, rather than focusing on the physical tasks they can no longer do: looking over a child's homework, giving an opinion on the family budget, passing on their work experience to a colleague.

The older patient

In people diagnosed later in life, dignity and privacy are very sensitive. Depending on someone else in the most private areas, such as bathing, using the toilet and dressing, can create deep shame. Having the same people provide care as far as possible, closing the door and explaining each step in advance soften this shame. An elderly father not wanting to be washed by his son or daughter is a preference that deserves respect.

Children and teenagers at home

Children whose mother or father has been diagnosed with ALS always notice the change at home. Short, honest explanations suited to their age, and a school and play routine that is protected despite the changes at home, give them a sense of security. Teenagers sometimes pull away from the ill parent, and sometimes take on caring responsibilities beyond their years. Both extremes can be a sign that support is needed.

How to Support Someone With ALS at Home: Practical Tips for the Family

In Turkey, the burden of care is mostly carried at home, usually on the shoulders of a female family member. A wife, a daughter or a daughter-in-law quickly becomes nurse, psychologist and household manager all at once. When this burden is not shared, relationships wear thin and the patient starts to feel like a "burden" too.

• Share out the care. Divide tasks such as night shifts, hospital appointments, keeping track of medication and equipment, and official paperwork clearly among family members. Siblings who live far away can also take on jobs such as paperwork, research or financial support.
• Plan visits by asking the patient. Visits from relatives and neighbours can be both cheering and tiring. In periods when speaking is hard, trying to communicate in a crowd can make the patient feel even more isolated.
• Discuss decisions in advance. Talking with the doctor, while the person can still communicate, about medical decisions that may come up later, such as nutrition, breathing support or hospital stays, both respects their wishes and protects the family from being left undecided in moments of crisis.
• Don't make the patient's room merely a care area. Photographs, music they love and a plant visible from the window stop the room from turning into a "hospital corner".
• Don't neglect yourself. A caregiver's lack of sleep and loneliness can turn into irritability over time. I discuss how this burden builds up in detail in my article on caregiver burnout.

Many relatives begin to grieve for who the person used to be while they are still alive. Although this feeling creates guilt, it is deeply human; I described this experience in more detail in my article on anticipatory grief.

When Should You Seek Professional Support?

In a progressive illness such as ALS, sadness, anger and anxiety are expected feelings. Sometimes a family becomes too exhausted to answer the question of how to support someone with ALS on its own; this is not a failure but a natural result of the size of the burden. However, in some situations it can be helpful for both the patient and the family to get support from a mental health professional:

• The patient being unable to enjoy anything for a long time, or refusing to communicate altogether
• The caregiver being unable to sleep, crying often or having outbursts of anger
• Conflicts over decisions growing within the family, or resentment between siblings
• Marked changes in the behaviour of children at home
• The illness turning into a secret that cannot be spoken about

If the patient or a family member says they want to die or has thoughts of ending their life, do not carry this alone. In an emergency, call 112 (emergency services) or go to the nearest emergency department. It is also important to talk openly about these thoughts with the treatment team; where there are marked depressive symptoms, an assessment by a psychiatrist may be needed.

How Are Families Living With ALS Supported in Therapy?

Psychological support does not replace the medical follow-up of ALS; however, it can open up an important space for carrying the emotional weight of living with the illness. Some hospitals have psychologists, social workers or palliative care teams working alongside the neurology team; you can ask your treatment team about this.

In work with the patient, grieving the losses, redefining what they value, recognising the areas they can still control alongside the things they cannot, and finding new ways to express their feelings come to the fore. When speaking becomes difficult, sessions can continue in writing or with a communication device. In the cognitive behavioural approach, automatic thoughts such as "I'm a burden to everyone" are examined, and an effort is made to open up a space in which the person can look at themselves with more compassion.

With caregiving spouses and adult children, guilt, anger, exhaustion and setting boundaries are frequent themes. The process of individual therapy can be a place where the caregiver can put their own feelings into words without passing them on to the patient. For family members who find it hard to leave the house, sessions can also take place online.

Frequently Asked Questions

Does a person with ALS understand everything?

In many patients, the ability to think and understand is preserved for a long time; so it is important to always address them as an adult who understands. In some people, however, changes in thinking and behaviour can occur. If you notice such a change in your loved one, consult the neurology team for an assessment.

How can I spend time with someone with ALS who can no longer speak?

Listening to music together, looking at old photographs, reading them a book they love or telling them about your day creates a strong sense of closeness. Sitting quietly in the same room is also a valuable way of being together. Don't forget to ask them what they want during the day using yes-no questions.

Should I try not to cry in front of the patient?

Hiding your feelings completely can widen the distance between you. Showing your sadness now and then lets them feel how much they matter to you. But if it turns into a situation where they constantly have to comfort you, it is a good idea to find another space to share your intense feelings.

Relatives keep suggesting treatments; what should I do?

A calm, short sentence is enough: "Thank you for your concern; we make decisions about treatment together with our doctor." Limiting how much the patient is exposed to these conversations is a protective role that one person in the family can take on.

• #als
• #family caregiver
• #communication
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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