Portraits
Portraits of People Caring for Family Members
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.
Where can I find support?
"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.
How can I stay healthy?
“The hardest thing is to not let it get to you.”
Le frère de Sibylle Glauser (59 ans) souffre de schizophrénie et vit seul dans les environs de Zurich. Dirigeant la consultation aux proches des Services universitaires de psychiatrie à Berne, Sibylle Glauser vit un difficile double rôle: à la fois spécialiste et proche aidante.
L’accompagnement d’un proche peut être vécu de manière très diverse. Dans chaque cas, il est essentiel de veiller à son propre bien-être: prenez au sérieux vos signes d’épuisement et réagissez à temps. Accordez-vous du repos. Gardez du temps pour des loisirs ou des projets personnels et entretenez vos contacts sociaux.
Et n’hésitez pas à vous faire conseiller. L’échange au sein d’un groupe d’entraide peut également vous aider à réaliser que vous n’êtes pas seul dans ce rôle exigeant.
Can I look after my adult relatives?
“I told myself that what she was going through was so hard, I couldn’t complain.”
La mère d’Elisa Luginbühl (26 ans) souffre de sclérose en plaques. Elisa s’en est occupée durant toute son adolescence, jusqu’à ce qu’elle quitte la maison à 21 ans. Durant de longues années, Elisa n’a pas exprimé ce qu’elle ressentait. Ce n’est qu’après s’être adressée à une consultation pour proches aidants qu’elle a pu libérer ses émotions.
Lorsqu’un parent ou un autre membre de la famille est malade, les enfants et les jeunes endossent souvent l’accompagnement ou les soins comme s’ils étaient des adultes. Environ huit pour cent des enfants âgés de 10 à 15 ans s’occupent de proches.
Il peut être très lourd d’assister des proches lorsqu’on est un enfant ou un jeune. Il est important que tu parles de ta situation, de tes émotions et de tes besoins avec ta famille ou une personne de confiance. Et aussi que tu aies suffisamment de temps libre pour te reposer.
En Suisse, il existe différentes offres d’entraide et groupes de parole. Tu peux y échanger avec des personnes se trouvant dans une situation similaire à la tienne. Sur 147.ch tu peux chatter à toute heure avec des conseillères et des conseillers ou leur téléphoner. Que ce soit pour parler de la prise en charge ou de toute autre question. Les conseillères et conseillers respectent la confidentialité.
How can I make myself understood?
“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.
How can I combine work with my caring duties?
“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.
How can I pay for it all?
“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.
- Health insurance: Many services are covered by your health insurance policy (basic and supplementary insurance). You are advised to get a doctor's prescription for external care and nursing services.
- OASI care credits: You can apply for these from your cantonal compensation office (AHV-Ausgleichskasse) if you have not yet reached OASI retirement age.
- Supplementary benefits: You can apply for these if the person being cared for is drawing an old-age and survivors’ or invalidity pension (OASI/DI). Contact your cantonal compensation office (AHV-Ausgleichskasse) for more information.
- Helplessness allowance: A helplessness allowance is available to all those who require help with daily activities such as dressing, getting up, eating, personal hygiene etc. Contact your cantonal compensation office or disability insurance office (AHV-Ausgleichskasse/IV-Stelle) for more information.
- Assistance contribution (disability insurance): You can apply for this if the person requiring care is drawing a helplessness allowance.__
- Aids: People with disability insurance are entitled to various aids under certain conditions.
- Contributions from health organisations and health leagues: Find out about support and services available from these organisations.
Find out about other financial support available or seek advice.
How do I plan ahead?
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.
How can I say goodbye?
“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.