Sandwich generation

*When 83-year-old Herbie Winokur showed the first signs of dementia, his daughter, filmmaker Julie Winokur, and her husband, photojournalist Ed Kashi, moved with their two children from San Francisco to live with him in New Jersey. The pictures in this dossier show scenes from their everyday life.

«Welcome to the madhouse!» says Jasmin Dubois* and smiles. The 44-year-old has barely entered her home in Emmenbrücke LU when the phone rings. Yesterday, her 76-year-old mother-in-law - who has lived on Mallorca for 20 years - suffered a stroke and had to be hospitalised. Now her neighbour is on the phone and is urging a family member to come. Despite her limited knowledge of Spanish, Jasmin Dubois is now in constant contact with the doctors and is endeavouring to provide local support. Her husband and his brother are so busy at work that they cannot fly to Palma immediately. And she herself would first have to take her daughters, aged twelve and eight, to stay with friends.

Always energised

Jasmin Dubois' own parents are also dependent on help. For the past three years, the French-born woman has been travelling to their home in Mulhouse, 130 kilometres away, every fortnight, shopping for them and cleaning their house. Her brother takes care of all the paperwork and financial matters. The reason for this is her 80-year-old mother: she suffers from an incurable autoimmune disease. Apart from a carer, her 86-year-old father does not allow any outside help. He also refuses to move near her daughter. Jasmin Dubois submits to these circumstances for her mother's sake. She has five hours on site before she has to return. Because her daughters are waiting at home, having lunch with neighbours after school. She has no professional support for her own household or childcare. «It's not financially viable,» she says.

In more than two thirds of cases, women take over the care of their relatives.

Her everyday life is well planned. The only things that cause her stress are the unpredictable things, the tantrums of her teenage daughter, the jealousies of her younger sister or when one of them doesn't come home at the agreed time. «Then I need patience and nerves that I no longer have.» Around 220,000 people, 140,000 of whom are of working age, look after or care for people in or outside their own household, according to projections from the 2013 Swiss Labour Force Survey (SLFS). According to the Swiss Spitex Association, relatives provided 64 million hours of care in 2013. This corresponds to free labour worth CHF 3.5 billion. On average, the adult daughters and sons of those affected provide 30 hours of care per week.

Older people want to live independently - and live far away

Couples aged between 40 and 60 who started their own family late in life are particularly hard hit - they are the sandwich generation. Their problem is that they not only have to successfully manage their work-life balance, but also care for their parents or other older relatives. And this task does not only arise - as in previous generations - after their own children have left home, but while they are still growing up. In more than two thirds of cases, women take on this caring role.

This means that mothers, who are increasingly older due to long periods of education and employment, are just about to start their careers again and have to put their needs on the back burner once more. And this at a time when they themselves could still use support with childcare in view of the high costs of daycare and after-school care. What's more, today's older family members usually want to live independently in their own home for as long as possible - and this is often further away due to increasing job mobility.

Chronic concern

Sidonia Gianella from Gelterkinden BL knows this situation only too well. The 51-year-old visits her 77-year-old mother, who lives alone in Lupsingen BL, 30 minutes away, two to three times a week. Her mother, a trained dressmaker, was suddenly no longer able to match patterns and wandered around the hotel for an hour during a holiday in vain to get herself a peppermint tea. After these initial signs of illness, she was diagnosed with a rare form of dementia in December 2015. «Since then, I have been her main carer, organising her everyday life, accompanying her to medical appointments and trying to support her emotionally,» says Sidonia Gianella.

Once a month, Sidonia Gianella's son wants an afternoon alone with his mum.

A planned half day on site quickly turns into eight hours. This is because the mother's clear moments are few and far between. In between, she often falls into a depressive mood and needs to be comforted. Gianella's sister takes care of her mother's post and finances and visits her as often as she can. To relieve the pressure, Sidonia Gianella tried for six weeks to get her mother into a day care centre for two afternoons a week. But the first attempt failed: Her mother refused to go there on her own.
Sidonia Gianella decided to hire a cleaner to help with her own household chores. "I'm actually reluctant to pay for it, but this way I can take some time pressure off my everyday life. Every weekend, she discusses her agenda for the coming week with her husband and 14-year-old son. This way, the eighth-grader always knows when he needs to be without his mum and where he can reach her. When things get tight at home, Gianella's husband tries to step in, but has to make up for it by working at the weekend.

Relatives as a resource

Thanks to medical and therapeutic advances, life expectancy has increased significantly in recent decades: By 2050, the number of over 80-year-olds in Switzerland will almost triple from 442,000 (2017) to almost 1.2 million, according to estimates by the Federal Statistical Office. «However, medical progress also means that more and more people are being diagnosed and treated - even in old age. People with chronic illnesses such as dementia and Parkinson's disease are therefore living much longer today than 10 to 20 years ago and need to be looked after for longer,» explains nursing scientist Iren Bischofberger, Head of the «work & care» programme at Careum Research and the Kalaidos University of Applied Sciences Health.

According to the Federal Council's 2014 «Report on Relatives», the number of older people in need of care will increase by 46 per cent by 2030. «This will be offset by a shift in family structures towards nuclear families, an increase in childless couples and a higher employment rate among women,» emphasises Philippe Gnaegi, Managing Director of Pro Familia Switzerland. These social developments are reducing the number of relatives who can support their elderly family members. However, the Swiss healthcare system cannot meet the growing care needs of older people solely through professional and institutional providers such as Entlastungsdienst Schweiz, Caritas, Pro Senectute, Spitex or the Swiss Red Cross.

Gaps in pension provision can threaten the livelihood of family carers.

«The necessary carers and financial resources are lacking,» the Federal Council's report continues. Unpaid care and nursing provided by relatives is therefore important for the future of the healthcare system. On the other hand, in view of the shortage of skilled labour and the federal government's growth policy, as many women as possible should remain in employment. This puts even more pressure on family carers. «The health policy premise of «outpatient before inpatient» must not lead to overstretching the resources of relatives,» comments Iren Bischofberger. With this in mind, the Federal Council has decided that more attention must be paid to reconciling work and caring for relatives (see box).

When the balancing act becomes too great

«No empties», this motto from the catering industry could be Jasmin Dubois' personal motto. The restaurateur worked full-time until the age of 36, when her second daughter was born. She then took a break for several years before finally returning to work two half days a week. However, she had to give up this part-time job when her mother fell ill. Since then, she has only paid a minimum into her 3rd pillar. In order to meet the needs of both her daughters and her older family members, Jasmin Dubois puts her own needs to one side. The only «empty runs» she currently allows herself are short coffee breaks on her terrace. Her husband worked in Solothurn until recently, so he was only home late at night. They were often only able to discuss important matters by phone during the week.

Understanding is limited Sidonia Gianella had a similar experience. As a housekeeping manager, she managed 40 to 70 employees. Until the birth of her son - she was 38 at the time - her job was also her top priority. She then took a break for three years and returned to work with a part-time job in the specialised toy trade. She initially kept this job even when her mother was diagnosed with dementia. «In order to be able to work flexibly on a part-time basis, I gave up working in the job I had learnt and was prepared to be employed on an hourly wage basis.» A year later, however, she also resigned: The balancing act between professional and private demands became too great. «If a mother has to go to hospital with her child, people at work understand. If you have to do this with a parent, there is only limited understanding,» says Gianella.

To fulfil the needs of her family, Jasmin Dubois puts her own needs to one side.

In the event of absences for sick relatives and relatives in need of care over the age of 15, employees are required by labour law to rely on their employer's voluntary work-life balance arrangements. However, the resulting loss of income or pension gaps can jeopardise the livelihood of family carers. Family carers develop skills in care work. Some enjoy deepening these skills and passing on their experience. «This can open up new perspectives for their professional development,» says Iren Bischofberger. Sidonia Gianella seized this opportunity: In mid-2016, she made the decision to change career direction. «If not now, then never again,» she comments on her plan. After completing a care assistant training course, she is now training to become a «specialist in activation and cognition training for dementia patients». At the same time, she is working a 60 per cent part-time job as an everyday organiser in the dementia ward of a retirement home. This has taught her how to deal with her mother's behaviour even better.

Eliciting a firm hug or a thank you from those affected in later stages of the illness also makes her feel good. While Gianella is at work, a member of staff from Dementia Care, a special care service run by the Swiss Red Cross, looks after her mother once a week. On another day of the week, her mother attends an SRC day centre. «This time it worked out,» explains Sidonia Gianella with a smile. As far as her husband and son are concerned, they both support her new job. Only sometimes her son complains that he would like to have her to himself at least once a month. Jasmin Dubois is now also working again. She works in a staff restaurant two days a week until 4 pm. To make sure her daughters are fed at lunchtime, she cooks lunch for them. They both have lessons in the afternoon. Afterwards, mum rushes home to help them study and look after their household. And every fortnight - as before - she «visits» her parents in Mulhouse.

Stake out boundaries

Both women agree that it is good to give back the support they received from their parents. Nevertheless, both admit that they have already had health problems due to their multiple burdens. «Moral values, gratitude and responsibility for elderly relatives because there are no affordable, needs-based or sufficient quality support services available.»

Jasmin Dubois' mother-in-law has now recovered from her stroke. But it remains a balancing act: for several years, the elderly lady has been caring for her husband, who is paralysed on one side as a result of a stroke, with the help of a carer. He is in a wheelchair and can only eat liquid food. To make caring for him at home easier, her sons have had the shower converted and a hoist fitted to the bed The family hopes that the elderly lady will not overdo it again when caring for her husband. Otherwise, a move to a care home in Mallorca or Switzerland would probably be unavoidable. After all, Jasmin Dubois cannot shoulder another caring task.

«Action plan» of the Federal Council

In recent years, various parliamentary initiatives have been submitted to the Federal Council to relieve the financial and time burden on family carers. As a result, the Federal Office of Public Health commissioned a nationwide survey of care allowances and respite services. On the basis of this, the Federal Council drew up a «Relatives' Report» and an «Action plan to support family carers» in December 2014.

are given the right to take a short leave of absence from their workplace

In February of this year, it instructed the Department of Home Affairs to prepare a consultation draft by the end of 2017 on how relatives can care for elderly family members without overburdening themselves or running into financial difficulties: Employees should be given the right to take short-term leave from work to care for a family member. A variant with continued payment of wages is to be developed. Longer carers' leave is only being discussed for parents of seriously ill children.

Relief programmes planned for relatives

The law on old-age and survivors' insurance is to be amended in order to minimise gaps in old-age provision: In future, people who look after or care for relatives who are slightly helpless should also receive care credits. Relief services, such as support from volunteers or the provision of holiday beds in retirement and nursing homes, are to be expanded. To this end, the Federal Office of Public Health has launched the «Relief offers for family carers 2017-2020» funding programme as part of the skilled workers initiative. The aim of the programme is to research the situation and needs of family carers and to collect and document good practice examples of support services. The first results are expected in 2018.

Link tips

• info-workcare.ch
  National, cross-organisational, trilingual Travail Suisse Internet portal for working family carers

• careinfo.ch
  Information platform of the City of Zurich's Gender Equality Office on the subject of care and support by 24-hour carers

• alz.ch
  (Swiss Alzheimer's Association): Counselling, respite and visiting services, holiday offers and groups for relatives

• carers-care.ch
  Website for the day for carers and caregiving relatives

• caritas.ch
  Placement of professional 24-hour carers from the European Caritas network

• entlastungsdienste.ch
  Respite services for individual hours, days, weekends or holidays

• pflege-entlastung.ch (Swiss Red Cross)
  Advice, visiting, escort, driving and respite services, day centres and day care centres

• prosenectute.ch
  Counselling, meal and respite service, home help

• proinfirmis.ch
  Relief and transport services, aids and social counselling for disabled people and their relatives

• spitex.ch
  Nursing and health care, domestic support, counselling, coordination and social care support

Read more:

• A farewell in instalments: Sidona Gianella travels to visit her mother, who has dementia, several times a week. «I never know what to expect, every day is different,» she says.
• One in five employees would organise their working life differently if there were better solutions for caring for relatives in need of care, says Iren Bischofberger, head of the «work & care» research and development programme.