My father was a man three months ago but now he looks like a living corpse. My father has pancreatic cancer – a form that is fast, loaded with pain and often leaves no room for treatment. His prognosis was direct when it was first diagnosed – uncurable cancer, no more treatment left, so all that is left now is trying to diminish the pain. Most nights he lies awake – either because pain strikes or because he ponders how close he is to meet his maker. Not sick enough for the hospital, but too sick to be alone, he is currently in home care. At least until we are capable.

Many people are faced with this kind of situation when a family member is dying. Trying to care for the ill relative, while simultaneously burdened by work and life, many people are left struggling with the emotional pain and impossible demands of caregiving. When the burden becomes too heavy, there are only a few options left. In Slovenia where my father and I live, approximately 20,000 people die annually, with a significant portion succumbing to terminal illnesses such as cancer and diseases of the circulatory system.

The hidden burden of family care

Despite trying not to be a burden on his family, my father’s care takes a toll. Having an overview over the large stack of pills he needs to take every day. Trying to lift up over a 90 kg heavy man because he fell as his legs don’t work anymore. Bringing food and drinks all day and completely forgetting what sleep looks like because of night cries that wake everyone up. Caring for someone when (s)he is dying is emotionally and physically draining. Without the help of doctors and visits from home care nurses, such care would not even be possible for a few days.

Family doctors and home care nurses are the first line of care when an ailing family member is still living at home. Home care nurse visits range from every day to once a fortnight, depending on person’s condition. Apart from health centres in Slovenia, the state provides home care through social services that includes help with basic living tasks (dressing, washing, feeding), domestic assistance (bringing meals, buying groceries, house cleaning, etc) and help with maintaining social contacts. This aims to keep care decentralized and keeping people in their home environment for as long as possible.

Home care is extremely expensive

The problem with home care is that it is extremely expensive. The hourly rate for it is 6€, which means with eight hours of care per day for 30 days, the cost arises to 1440€ a month – slightly below the average monthly salary in Slovenia. Even though municipalities provide subsidies for home care, most people still find it expensive, especially for people who need 24-hour care.

The government’s new Act on Long-term Care from 2023 presented the possibility that a family member is trained and partially reimbursed for lost income for caring for their family member. Although this might seem a viable option for some, quitting their job is not an option for many.

Janja, a home care nurse is checking my father’s pulse that, despite the pain, still beats strong. She takes his blood, checks if his diabetes sensor is working and makes sure that his catheter is in place. Janja visits a lot of patients at home, mostly elderly and people with chronic illness. It mostly helps these patients to be with their family, but it depends on how they get along. People with good family relations want to die at home, whereas in dysfunctional families, patients prefer to leave so they can die “in peace”.

If domestic care is not an option – whether for financial or other reasons – there is only institutionalized care left, which includes elderly homes or hospices. Elderly homes have long waiting lists and even then, most rooms need to be shared.

A system stretched beyond its limits

A report from early 2025 by the Community of Social Institutions Slovenia concluded there were 36.222 applications for 22.267 available beds, signifying a huge demand for elderly care, well beyond current capacities. One of the reasons for this shortfall is serious staff shortage. For illustration, Anja, a senior nurse, who formerly worked in two elderly homes in Notranjska region said that one nurse and two carers had to take care of 60 patients.

“If a person is dying, you don’t have the time to devote your attention to him because you need to take care of others”, she said. “So, you only check if he is still alive or dead, despite how sad that sounds.”

For the terminally ill, other options are palliative teams that visit only occasionally or hospice. But with just one hospice in the whole of Slovenia, with a capacity of 12 beds, the chances of getting in is minimal – even if you are just days from death. 

Everybody Janja visits confronts the prospect of dying soon differently. Religious people in general face it more easily, she said, but those without any religious beliefs are really unnerved and scared of dying. Anja confirmed this sentiment. People with spiritual beliefs find it easier to deal with imminent death. Some people uphold hope to live if they are relatively okay, but others in tremendous pain just wish for the pain to stop.

My father is screaming with pain but does not want to go to a hospital or hospice because he knows he might never return. Preferring to scream in agonizing pain just to be at home instead of going into hospital or institutionalized care where his symptoms might decrease, is a sign that being with family in your final moments means everything. The problem is just that his family might burn out in the process.