Caring for a Loved One With a Brain Tumour: Patience When Behaviour Changes

If a loved one with a brain tumour is changing in personality, what can you do? Guidance for families facing anger, forgetfulness and distance.

Imagine the husband you have shared a table with for thirty years pushing his plate away one evening and shouting at you for no reason. Your father, always calm and thoughtful, starts making inappropriate jokes in front of his grandchildren. Your mother, who once planned everything, asks the same question four times in five minutes. Caring for a loved one with a brain tumour often means coping not only with an illness but also with the gradual change of the familiar person you love. In this article I look at the effect on the family of the changes in behaviour and personality that a brain tumour can bring, how these changes can be approached, and how relatives can look after their own feelings.

Why Can a Brain Tumour Change Behaviour?

The brain is the organ that regulates our emotions, impulses, attention, memory and personality. That is why a tumour taking up space in the brain, surgery affecting the tumour or other treatments can also lead to changes in a person's behaviour. Which change appears and why varies according to the location and size of the tumour and the treatment given; the people who can assess this are the doctor and team in charge of treatment.

The changes families most often describe include:

• Emotional ups and downs: sudden anger, crying for no reason, impatience, a touchiness that was not there before.
• Reduced impulse control: saying things without filtering them, behaving inappropriately in social settings, losing a sense of proportion with spending or food.
• Apathy: loss of interest in things they used to enjoy, sitting still for hours, not joining in conversations. From the outside this may look like depression, but it is not always so.
• Memory and attention problems: forgetting what was said recently, repeating the same question, being unable to do two things at once, mixing up appointments.
• Being unable to recognise their own condition: some patients are not aware of the changes they are going through; they say, "There's nothing wrong with me, you're exaggerating."
• Language and communication difficulties: being unable to find the right word, leaving sentences unfinished, struggling to understand what is said.

Some of these changes may be temporary, and some may increase or decrease during treatment. Whenever you notice a new or sudden change in behaviour, be sure to tell the treatment team. Sometimes such changes can be the first sign of a situation that needs medical attention.

What Does a Relative of Someone With a Brain Tumour Feel?

During this process, relatives experience many conflicting feelings at once.

Estrangement: "The person in front of me is my mother, but it's as if she isn't" is a sentence heard very often from the relatives of people with brain tumours. The person is physically beside you, but some parts of the personality you knew seem to have drifted away. It is a sense of loss experienced while the person is still alive.

Anger followed by guilt: It is very human to get angry at a patient's hurtful words or repetitive behaviour. But right after the anger comes the guilt: "How can I be angry with someone who is ill?" This cycle is exhausting for relatives. You can find a broader discussion of these feelings in the article on feeling angry with a sick person.

Embarrassment: When the patient says something inappropriate in front of guests, at the supermarket or at a wedding, it can cause embarrassment and social withdrawal in relatives. Some families stop receiving visitors altogether for this reason.

Anticipatory grief: When the course of the illness is uncertain or difficult, relatives may begin to grieve before the loss has happened. This is not a lack of love but another face of love. I have covered general information on how grief is experienced in the article on the grieving process.

Loneliness: People around you usually ask only about the patient's physical condition. The question "How is the chemotherapy going?" is asked, but "How are you coping with your husband's changed state?" rarely is. This invisible struggle can leave the relative feeling alone.

Changing roles within the family

A brain tumour often changes the inner order of the family as well. If the father who made all the household decisions now forgets to pay the bills, who will take this on? If the grandmother who looked after the grandchildren now needs care herself, how will the family reorganise childcare? These questions are as emotional as they are practical. Partners may find themselves turned overnight from partner into carer; adult children may feel as if they are parenting their own mother or father. This change of roles sometimes finds words in sentences such as "I'm not his wife any more, I'm his nurse" or "I've become my father's father."

In Turkey, this burden often falls on the daughter who stays at home or on the spouse. Siblings living in faraway cities give advice over the phone, while the person nearby carries both the care and the pressure created by that advice. At times when the cost of living makes it hard to take time off work, being caught between caregiving and earning a living increases the relative's anxiety. Imbalances like these, if not discussed openly within the family, can turn into resentment over time; that is why it is important to talk about sharing tasks early and openly.

How Should You Respond to Changed Behaviour?

Separate the behaviour from the person

When the patient says something hurtful, it can help to remind yourself: "This is the brain under the influence of the illness speaking." This does not mean the behaviour does not hurt you; but it reduces the likelihood of experiencing it as a personal attack and softens your reaction.

Don't argue; redirect

Arguing "No, that's not what happened" with a patient who has memory or perception problems usually achieves nothing and increases tension. Acknowledging the feeling and gently changing the subject tends to work better.

Fictional examples:

• Better to avoid: "I told you yesterday, have you forgotten again?"
• You could try: "The check-up is on Thursday, I've written it on the calendar too; shall we look at it together?"
• Better to avoid: "You weren't like this before, what's happened to you?"
• You could try: "You seem a bit tense today, are you tired?"
• Better to avoid: "You embarrassed me in front of everyone."
• You could try (at a calm moment, just the two of you): "It was a bit hard at the table today; next time you get tired, you could go to your room earlier."

Simplify the environment

Crowds, noise and several people talking at once can be overwhelming for a patient who has difficulty with attention and regulating emotions. Keeping holiday visits short, switching off the television and setting aside a quiet corner can reduce outbursts of anger.

Use routines and reminders

Daily routines are something to hold on to for patients whose memory is struggling. A weekly calendar on the kitchen cupboard, notes written in large letters and phone reminders both protect the patient's independence and reduce the burden on relatives of constantly having to remind them of the same thing.

Don't leave them out of the conversation

Even if the patient has difficulty understanding or speaking, talking about them to someone else in their presence can be hurtful. Including them in conversations about decisions as far as their capacity allows protects their dignity. Using short sentences, giving them time to answer and asking yes-or-no questions can make communication easier.

Keep safety in mind

Some changes in behaviour can create safety risks: driving, leaving the cooker on, making big financial decisions. It is important to discuss these issues with the treatment team and, where necessary, to make arrangements without humiliating the patient. Instead of "You need to stop driving", listening to the doctor's assessment together and making the decision in a way they can also hear creates less conflict.

The changed behaviour of someone you love reflects not your love for them, but the effect of the illness on the brain.

Differences by Age

If the patient is a child or teenager

Brain tumours can also occur in children. In children, changes in behaviour may show up as falling school performance, attention problems, temper tantrums or a return to behaviour typical of a younger age. Parents should address these changes in cooperation with the treatment team and the school, without interpreting them as "being spoilt" or "naughtiness". In teenagers, peer relationships, body image and the need for independence come to the fore; it is important to give the young person age-appropriate information about their own condition and a say in decisions.

If the patient is an adult

In a working adult, the changes can deeply affect working life, the parenting role and the relationship between partners. A partner may suddenly find themselves both carer and the only person responsible for the home. Children, meanwhile, struggle to understand the changed state of their mother or father. Giving children at home short, honest, age-appropriate explanations such as "Dad's illness sometimes makes him get angry more quickly; it's not your fault" can stop them blaming themselves.

If the patient is elderly

In older patients, changes in behaviour are sometimes put down to old age or dementia and missed. It is important to report every change that is new or increasing quickly to the doctor. It is necessary to protect the dignity of an older patient, not to talk to them as if to a child, and to respect the decisions they are still able to make. For example, letting them choose which clothes to wear, which programme to watch in the evening or who comes to visit may seem small, but it helps them feel they are still the subject of their own life. A relative caring for an elderly spouse with a brain tumour is often someone with health problems of their own; it should not be forgotten that they, too, need support.

How Can a Relative of Someone With a Brain Tumour Protect Themselves?

A long and unpredictable period of care also strains relatives' mental health. Making room for your own needs is a condition for being able to accompany your loved one with a brain tumour well.

• Find a place where you can talk about your feelings. Describing the patient's changed state to a friend, a sibling or a professional lightens the load.
• Share the care. Dividing tasks within the family prevents a single person from burning out. Siblings who live far away can also take on paperwork, phone follow-ups or financial planning.
• Don't neglect taking breaks. Short walks, a coffee with a friend you love and a few hours of sleep prepare you for the next difficult day.
• Write down medical questions. Noting changes in behaviour in a notebook with the date and a short description makes it easier to give concrete information when you see the doctor.
• Make room for remembering how they used to be. Looking at old photographs or playing songs you used to listen to together sometimes offers a new way of connecting with the patient, and sometimes makes room for your own grief.

When Should You Seek Professional Support?

Caring for a loved one with a brain tumour can be heavier than most people can carry alone. In the following situations, seeing a mental health professional may be helpful:

• Feeling caught in a constant cycle of anger, guilt and burnout
• Marked disruption of sleep, appetite and work routines
• Being afraid of reacting to the patient in ways that are hard to control
• Not seeing anyone, life revolving entirely around the illness
• The patient's apathy and low mood continuing for a long time

If you notice a wish to die, thoughts of self-harm or a risk of harming others in the patient or in family members supporting you, report it to the treatment team immediately; in an emergency call 112 (emergency services). An assessment by a psychiatrist for changes in the patient's mood can be planned together with the treatment team.

How Is a Relative Supported in Therapy?

Therapy offers the relative a space to make sense of changes in behaviour, regulate their emotions and protect their own boundaries. Within cognitive behavioural therapy, thoughts such as "I must be enough for everything" or "If I get angry, I'm a bad person" are addressed, and work is done on calming and communication skills that can be used in difficult moments. Anticipatory grief, guilt and fear of loss are also among the main topics that can be talked about in therapy. The article on guilt in family caregivers may also offer guidance on this.

Individual therapy can be a time when the relative can talk for themselves alone. For relatives who cannot leave home for long because of caring duties, sessions can also take place online. Some hospitals offer psychosocial support within their neuro-oncology teams; you can ask your treatment team about this.

Frequently Asked Questions

The patient says nothing has changed in them. Should I try to convince them?

Trying to convince them usually achieves nothing and creates tension. Some patients may be unable to notice the changes because of the illness itself. Passing your observations on to the doctor and calmly taking safety measures in daily life is more useful.

I'm embarrassed when they say inappropriate things in front of guests. Should I stop having visitors?

Stopping visits altogether can isolate both you and the patient. Instead, it can help to plan short visits with small groups and to give close friends and family a brief explanation of the situation beforehand. Keeping up ties with a few understanding people may feel better than crowded visits.

Will they go back to how they were?

The answer to this question depends on the type and location of the tumour and on the treatment; only the treatment team can give information about this. From a psychological point of view, learning to live with uncertainty and looking for ways to connect with the person as they are today can ease the burden of waiting a little.

Is it right to set boundaries around the patient's hurtful behaviour?

Yes; understanding the effect of the illness does not mean you have to silently accept every behaviour. Saying in a calm voice, "I can't talk when you shout at me; I'll come back in a little while," and stepping away briefly both protects you and gives the tension a chance to ease. If there is physical aggression or a safety risk, be sure to share this with the treatment team.

• #brain tumour
• #family caregiver
• #personality change
• #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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