And suddenly everything is different – seven years in a wakeful coma

"I hope this helps", says rosalinde werb and prints an envelope into monika betz's hand. Monika betz is an extraordinarily strong woman, but she has a trane in the corner of her eye when she says thank you. "Everything helps," says, she says and strokes her husband hubert's forehead. The man from prappach has been in a vegetative state for almost seven years. His wife cares for him sacrificially. The kolping family in eltmann wants to support this kind of care. The proceeds of last year's children's clothing bazaar benefit hubert betz and the locked-in patient jonas thein in holzhausen.

The summer of 2008 turned hubert and monika betz's lives upside down. Having just returned from his vacation in sudtirol, hubert betz wanted to enjoy the last few days off at home before returning to work at the water and shipping office in habfurt.

He was an enthusiastic athlete, a soccer player and coach. He was happy to get on his bike, as he did on this day.

In two hours, the then 47-year-old wanted to be back – monika betz saw her husband again in the intensive care unit.

Shortly before prappach, at the end of his bike tour, hubert betz had a heart attack and fell off his bike. Although he was helped quickly and professionally, the consequences were dramatic," she says. At the hospital, it was discovered that he was suffering from a disease that could only be diagnosed by heart catheter.

For monika betz it was clear: "hubert is coming home." Even though doctors and nurses in rehab advised her against it. She has focused her whole life on her husband, who needs care. Both sleep in the living room. She hasn't slept through the night in years, because she has to check on him again and again and move him. He reacts to his environment "better one day, less the next", according to monika betz. But hubert betz no longer has his body under control. Even swallowing is often problematic. Nevertheless, he is making small progress. Twice a week ergo- and logopadin come to the house, three times a week there is physiotherapy.

"I get a lot of support, says monika betz, whether through the nursing service, neighbors or friends. But she bears the main burden of care with great commitment and without complaining. Grobartig is her family doctor dr. Leitgeb and also the health insurance is accommodating. Nevertheless, she is currently fighting for the assumption of costs for a medication. She has to pay 144 euros for each 90-pack. Hubert betz needs two of these to make his stomach work.

In these almost seven years, the saleswoman has become an experienced nurse.

The actual care is not really a problem for them – for the observer an obvious understatement. But what wears her down is the constant confrontation with the health care system. Your husband was prescribed rehab without any problems whatsoever. She scheduled her own surgery so that her recovery coincided with this time; his transport to rehab suddenly became a problem three days before it began. The newly-operated patient had to make several phone calls, but then it worked out after all. "But I sometimes wonder what elderly caregivers do in such situations", she wishes for a less complicated system.

The MDK (medical service of the health insurance companies) was there to question her about the quality of the nursing service. "The young man rolled a thick folder back and forth, a thousand questions, but no one was interested in how the nurses dealt with my husband." She has seen a lot of overwork and time pressure among nursing staff, especially in hospitals and also rehabilitation facilities. That's why she's disappointed but not angry about many things. Of course, she can always get rehab to recover from the rigors of care, she said. Her husband also had to be admitted to the rehabilitation facility. "But when I say that he is a coma patient, they kindly wave him off."

Now and then she takes time out – for hours. About for the first communion of her godchild. Then there are neighbors, the nursing service or relatives who look after hubert betz. Couples they used to meet in south tyrol drop in once or twice a year. "Then last year we went to vierzehnheiligen with hubert. He was such an enthusiastic pilgrim, tells his wife. What logistical effort this trip has meant, she conceals.

Hubert betz can sit in his wheelchair for two to three hours a day, then he has to lie down again – this is also the case towards the end of the visit by rosalinde werb, who watches with interest how the petite monika betz manages to get her husband out of the wheelchair and into bed using the lift.

Rosalinde werb knows hubert betz from the old days, from soccer and from birthday parties at monika betz's home. It took her a long time for her first visit, she admits. Many people feel that way, explains monika betz. Many struggle with an invisible inhibition threshold.

But she is happy about every visit, emphasizes the prappacherin. "And please write that I recommend everyone to fill in the patient's power of attorney and health care proxy", she says at the farewell. Many things would have been easier with these documents, but she and her husband had also been reluctant to deal with this issue in their forties and therefore had neither.

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