Looking after yourself as a caregiver

You are not the only one carrying this load

At the end of 2025, EURORDIS carried out a survey of about 10,000 people in Europe. Of the parents of a child with a rare disease, 71 percent said their mental health was poor. In another survey in 2017, 62 percent of caregivers spent more than 2 hours a day on care. In other words, exhaustion is common. It is not a weakness.

Source: EURORDIS – Rare Barometer ruh sağlığı anketi (18 Haziran 2026) · EURORDIS – 3000 hasta ve bakım verenin günlük yaşam anketi (2017)

Signs of stress

Stress leaves its mark on both mind and body. Anxiety, anger, crying often and being absent-minded are some of the signs. Sleeplessness, loss of appetite and tiredness that does not go away can also occur. Some people get dizziness, muscle spasms or shortness of breath. If you have had these signs for a long time, you can talk about it with a doctor.

Source: Carers UK – Dealing with depression and stress

When should you ask for more support?

You may find yourself unable to cope with your everyday tasks. You may feel hopeless, tense or close to tears all the time. If so, talk to someone close to you and to your doctor. It is important not to bottle up your feelings. If you have thoughts of harming yourself or someone else, ask for help without waiting.

Source: Carers UK – Dealing with depression and stress

Do not put off your own health

Being overwhelmed and worn out by caregiving can affect your health. If your doctor knows you are a caregiver, they can keep a closer eye on your health. You will also have someone to whom you can easily say how you feel. Put your own checkups and appointments on the calendar too.

Source: NHS – How to care for children with complex needs

A break is not a luxury

A break means someone else takes over the care for a while. This time is for looking after yourself. A break helps protect you from becoming worn out. Spending a little time apart from your child is often good for both of you. Even stepping away for five minutes during the day and breathing slowly can help.

Source: NHS – Carers' breaks and respite care · NHS – How to care for children with complex needs · Carers UK – Dealing with depression and stress

Asking for and accepting help

Relatives, friends or neighbors may be able to take over the care for a few hours. It is easier to ask for help before problems grow. Talk together about who can do what. Small tasks also lighten your load.

Source: NHS – Carers' breaks and respite care · Contact – Looking after your relationship

Day care centers

The Aile ve Sosyal Hizmetler Bakanlığı (Ministry of Family and Social Services) provides day care services for people with disabilities. One aim of this service is to give the family member who provides care some time for themselves during the day. The service may be full-day or half-day. The person with a disability needs a disability medical board report.

1. Apply to the Aile ve Sosyal Hizmetler İl Müdürlüğü (Provincial Directorate of Family and Social Services) or to a Sosyal Hizmet Merkezi (Social Service Center).
2. You can also apply directly to a day care center.
3. You can ask ALO 183 which center is near you.

Source: Aile ve Sosyal Hizmetler Bakanlığı – Engelli bireylere sunulan bakım hizmetleri (SSS)

Who will care in your place? A backup plan

Think ahead about what will happen if you fall ill or cannot be reached. Choose a relative, friend or neighbor who can step in for a few hours. Write short notes on how the care is done. Put the notes somewhere everyone can see them.

Source: NHS – Carers' breaks and respite care

ALO 183 Social Support Line

ALO 183 is the line of the Ministry of Family and Social Services. It provides guidance and counseling on family, child, disability and older-person issues. The line is open 24 hours a day, 7 days a week. Calls from within Türkiye are free of charge. Details of the line are also given in the “Rights and support” guide.

Source: ALO 183 – Hakkında

Family counseling and individual counseling

The Ministry provides family counseling and individual counseling. This service is free of charge in 81 provinces, at the provincial directorates and Social Service Centers. In December 2025, online counseling also began to be piloted in 7 provinces. These provinces are Adana, İzmir, Erzurum, Şanlıurfa, Ordu, Sivas and Sakarya. Applications are made through the e-Ailem system or psikodestek.aile.gov.tr.

Source: Aile ve Sosyal Hizmetler Bakanlığı – Çevrimiçi Psikolojik Destek ve Aile Danışmanlığı Hizmeti (29 Aralık 2025)

Talking to your doctor

If stress or low mood lasts a long time, you can talk to your family doctor. Your doctor can explain the kinds of support that suit you. These may include counseling or talking therapy.

Source: Carers UK – Dealing with depression and stress

A WHO guide to coping with stress

The World Health Organization (WHO) has prepared an illustrated guide to coping with stress. The Turkish title of the guide is “Stresli anlarda ne yapmalı?” (in English: Doing What Matters in Times of Stress). The guide describes simple skills that can be practiced in just a few minutes a day. It can be downloaded free of charge.

Source: DSÖ – Stresli anlarda ne yapmalı?: resimli rehber (Türkçe, IRIS) · WHO – Doing What Matters in Times of Stress (2020)

In an emergency: 112

112 is the single emergency number in Türkiye. All emergency lines, such as health, police and fire, are gathered here. If you or someone close to you is in danger, call 112.

Source: T.C. İçişleri Bakanlığı – 112 Acil Çağrı Merkezleri Projesi

Mixed feelings are normal

It is normal for siblings to have mixed feelings. The same child can be both happy and sad. Anxiety, anger, embarrassment, guilt and jealousy are common. Feeling proud of their brother or sister is also among these feelings.

Source: Sibs – Your feelings

Listen first

Try to hear the feeling behind what the child is saying. You can name the feeling when you ask: for example, “Did that make you sad?” Do not rush to find a solution or to blame. First acknowledge the feeling. Look for a solution together once the child has calmed down.

Source: Sibs – Supporting your sibling child with their feelings

Short but full attention

Short but full attention does a sibling more good than long but interrupted time. Do something with them alone for a few minutes every day. A small note or message also helps them feel loved. Notice their good behavior and tell them.

Source: Sibs – Giving your sibling child attention

Siblings may also help with care

Some siblings help with care at home. This can be a burden for them too. When looking at the family’s needs, the other children also need to be taken into account.

Source: NHS – How to care for children with complex needs · Sibs – Brothers and sisters of disabled children and adults

Talking and listening

Share your feelings and worries with your partner. Also show that you are listening to them. When you argue, give each of you time to speak without being interrupted. Try to find the real issue underneath the argument.

Source: Contact – Looking after your relationship

Sharing the tasks

Divide the tasks in a way that suits you. Your roles may be different. What matters is that the load does not fall on one person. Recognize each other’s efforts and say so.

1. Write a list of the tasks that need to be done during the week.
2. Decide together who will take on tasks such as appointments, medicine times and housework.
3. Review the list from time to time.

Source: Contact – Looking after your relationship

Everyone copes differently

Partners may react differently to the same situation. One may want to talk, while the other may choose to stay quiet. This difference should not stop you from supporting each other. Keep the children out of arguments and tell them they are not to blame.

Source: Contact – Looking after your relationship

Time and support as a couple

Set aside time for the two of you regularly. This can be as simple as watching a movie together one evening. When things are hard, getting support from a counselor can help. The Ministry’s family counseling service is free of charge.

Source: Contact – Looking after your relationship · Aile ve Sosyal Hizmetler Bakanlığı – Çevrimiçi Psikolojik Destek ve Aile Danışmanlığı Hizmeti (29 Aralık 2025)

Balancing work and care

In the 2017 EURORDIS survey, 41 percent of patients and caregivers needed special leave from work but could not get it. This is a difficulty that many families face. That is why it helps to find out in advance which types of leave and rights you have.

Source: EURORDIS – 3000 hasta ve bakım verenin günlük yaşam anketi (2017)

For your rights: the “Rights and support” guide

The leave rights of working mothers and fathers are described in the “Rights and support” guide. It includes information on paid leave, part-time work and companion leave for employees and civil servants. The home care allowance is also covered in the same guide. This allowance is paid to the family member who provides care and meets the conditions. You can call ALO 183 with your questions.

Source: Aile ve Sosyal Hizmetler Bakanlığı – Evde bakım yardımı (SSS) · ALO 183 – Hakkında

Grief is different for everyone

Grief can bring feelings such as shock, deep sadness, anger or guilt. These feelings can come and go. Not everyone goes through grief in the same order or at the same pace. For most people, the feelings ease over time. Set yourself small, achievable goals.

Source: NHS – Grief after bereavement or loss

Getting support in grief

Talking to someone close to you, a doctor or a counselor can help. Talking to people who have had a similar loss can also be a support. If low mood lasts longer than two weeks, see your doctor. Trying to numb the pain with alcohol or cigarettes can make mental health worse.

Source: NHS – Grief after bereavement or loss · ALO 183 – Hakkında

Meeting families who have been through similar experiences

Talking to families of children with the same condition can be a relief. Patient organizations and family groups make this easier. EURORDIS offers a search page for finding organizations by disease. For organizations in Türkiye, see the “You are not alone” section of the “Newly diagnosed: first steps” guide.

Source: NHS – How to care for children with complex needs · EURORDIS – On your disease (hasta derneği bulma)

Things to keep in mind in a peer group

The experiences shared in a group are valuable. But every family’s and every child’s situation is different. EURORDIS also states that it cannot answer medical questions and that a doctor should be consulted for these. Before trying any treatment suggestion you hear, talk to your doctor.

Source: EURORDIS – Find medical expertise