Below, eight individuals describe their personal experiences.
Listen to the concerns of people caring for and nursing family members in a series of short videos. Discover the solutions they have come up with together with their loved ones.
"You need to be creative when it comes to finding ways to ease the burden: unconventional solutions are sometimes the best.”
Tanja Reusser’s (46) daughter was born a butterfly child with very fragile skin. Tanja was able to carry on working thanks to the support of her parents, the school and later Spitex. Jenny Reusser is now 22 years old and lives in a flat of her own thanks to external support.
Caring for someone close can be stressful and very time-consuming. Do not be afraid to ask for help early on. It is important that you stay healthy and that you do not wait until you reach breaking point before asking for help.
There are no standard solutions for support and relief. Make sure you get all the information you need and seek advice, for example from Spitex, your GP or another specialist. They will be able to help you decide what kind of support would be most useful.
An outpatient nursing service such as Spitex can support you with your daily nursing routine. Help is also available in the form of home visits by members of voluntary organisations, home-delivered meals and taxi services in your region. There are also respite beds in nursing homes as well as special offers for day and night facilities. Parents of a severely impaired child are entitled to fourteen days’ paid respite care per year from July 2021.
“The hardest thing is to not let it get to you.”
Sibylle Glauser's (59) brother suffers from schizophrenia and lives on his own in the Zurich area. She heads the counselling service for family members of Bern University Psychiatric Services. Sibylle has a difficult dual role: on the one hand she is a specialist and on the other, a family member.
Looking after someone close can be experienced in different ways. In all cases, it is important to look after yourself: you must take signs of exhaustion seriously and take prompt action. You need to find ways to relax, make time for your hobbies or interests and maintain your social contacts.
Seek advice. Exchanging ideas in a support group can also be useful to help you realise that you are not alone in this demanding role.
“I told myself that what she was going through was so hard, I couldn’t complain.”
Elisa Luginbühl's (26) mother suffers from multiple sclerosis. From the early age of ten, Elisa cared for her mother until she left home at 21. Elisa did not talk about her feelings for a long time. That only changed when she attended a counselling session for people caring for family members.
If a parent or other family member falls ill, children and young people often take on caring or nursing roles as if they were adults. Around eight per cent of children aged between 10 and 15 take care of family members.
Caring for family members can be particularly stressful for children and young people. It is important that you talk to your family or someone you trust about your situation, your feelings and your needs. It is also important that you have enough time to yourself to recharge your batteries.
In Switzerland there are a number of support groups and peer support programmes, where you can share experiences with people in a similar situation to you. The 147.ch 24-hour helpline is available for you to speak to or chat with counsellors. All information provided remains confidential.
“My mother is ashamed of her poor language skills.”
Jelena Mitrovic (64) and her sister care for their elderly mother. The now 85-year-old fled former Yugoslavia for Switzerland 30 years ago. She still lives in her own flat. For Jelena it is normal for her to look after her mother. Her mother does not want any external support: she is ashamed of her poor knowledge of German and the cost of external care.
When an immigrant family requires care, there are often additional challenges to face: communication difficulties, precarious residence status, a painful history of migration, and experiences of trauma and discrimination.
Poor knowledge of a national language can be a major obstacle when it comes to seeking external support and care. Find out whether there are any counsellors or caregivers who speak your native language or enquire about the possibility of accessing an intercultural interpreter.
Immigrants are entitled to various types of financial support. Find out more or seek advice. An immigrants’ advice centre can assist you by providing the contact details of specialist agencies or by helping you fill in application forms.
“It took me a while to realise that I was no longer just a partner but also a carer.”
Silvan Rüegg (51)’s partner suffers from multiple sclerosis. He worked full-time and cared for her at home. This double burden became too much for him and he was forced to take sick leave. Today Silvan has a job that he can reconcile with caring for his partner.
It is a challenge to balance work and being a caregiver at home. Talk to your employer as early on as possible and try to find a solution that works for you. Flexible working hours, short leaves of absence, reducing your working hours or working from home can help you balance your caregiving and professional commitments.
Seek help with providing care and support.
Parents of a severely impaired child are entitled to fourteen days’ paid respite care per year from July 2021.
“If my husband were in a home, we would be in a dire financial situation.”
Regina Christen (59) has been caring for her husband at home since 2014. He developed dementia at the early age of 56. Caring for her husband is a full-time job for Regina. Although looking after him is very time-consuming, she is keen to carry on caring for him at home, partly because of her financial situation: she cannot afford a nursing home.
Family members often care for and nurse their loved ones without external support partly because they worry about the costs. However, there are various forms of financial support available. Find out what you are entitled to.
Find out about other financial support available or seek advice.
“I knew then that my wife was all that mattered in my life from that moment on.”
Peter von Ballmoos's (79) wife suffered from dementia and cancer. He cared for her at home for several months until she had to be moved to a nursing home at short notice. Peter visited her there daily for four years. He cared for her and was there for her for seven to eight hours a day until she died.
It helps to plan care and nursing in advance. Find out about the various types of support available and decide which persons close to your loved one will be involved in their care. It is important to involve the person being cared for in the discussion. Their GP or healthcare worker can support you during the planning phase.
A crisis or emergency can require changes in the way you care for your loved one, and unplanned changes can cause great uncertainty. It helps to plan in advance how you intend to organise care and nursing in such an event. You will also need to plan for the eventuality that you may suddenly no longer be able to perform the task yourself (emergency plan). Find someone you can talk to about your situation.
Help the person being cared for to write down their wishes, decisions and values in good time so that these are respected even when they are no longer able to make decisions for themselves. Draw up a living will (advance healthcare directive) and a power of attorney.
“For us it was very important to have an ongoing dialogue about ourselves and about the disease. The challenge was to talk to about death and the hereafter.”
Maurizio Martongelli's (58) partner died of cancer. After she received the diagnosis, the couple rented a holiday apartment in Liguria and spent a lot of time there. Talking about the disease, fears and death itself was difficult but very important to both of them. Today Maurizio Martongelli says that when his partner died, everything that needed saying had been said.
It helps to talk to the sick person and the family about saying goodbye and death itself early on. It is often hard to talk about these things. A palliative care provider, hospice nurse or someone close can help you find the words. Attending a support group or mourning seminar can also help you deal with the grief. Family members say this helps them overcome their grief.
When it comes to saying goodbye, the quality of professional treatment and care is crucial for those caring for family members. When palliative care services are sought early on, seriously ill and dying people are well cared for, they feel empowered, and their quality of life is improved. The family members caring for them are also supported.