HS Vantaa A 24-year-old woman from Vantaa can’t talk or move – now she misses her only pleasure, because she can’t get help with money anymore

24 years old Jessica Grundström needs a breathing machine, a wheelchair and a computer with eye control every day.

Most of Grundström’s muscles have been replaced by adipose tissue and she is unable to move.

At the age of eight, Grundström’s heart stopped in a hospital operation, and she had to be fitted with a breathing cannula during a resuscitation. During the operation, Grundström’s vocal cords were damaged and she lost her ability to speak. Since then, he has had a tracheal hoop.

Those who know Grundström well read him by the lips. He keeps in touch with others through a controlled computer.

Recently, Grundström has been cared for in the facility, even though she would like to live at home.

Grundström needs constant round-the-clock care. Therefore, an administrative decision has been made for him: as a respiratory patient, treatment is free and is the responsibility of a public hospital. The treatment is provided either in the institution or in home care.

In the Helsinki region, the treatment of patients with respiratory paralysis is provided through the Hus Heart and Lung Center in the Rekola group home or at the patients’ home.

If care is provided at home, Hus hires employees for the home care network directly or procures employees as a purchasing service. Hus is currently responsible for 13 patients with respiratory stroke treated at home.

For years, Grundström’s care has been arranged according to her wishes at home in Korso. During that time, the home care service provider has changed twice.

In order for Grundström’s treatment to take place at home, there must be five nurses in the home care ring. If an employee is absent from the ring for only one day or a single weekend, Grundström will be transferred to Rekola’s group home, as treatment cannot be interrupted for a moment.

Here at home The walls of Grundström’s room are decorated with a singer Antti Tuiskun pictures. Plush toys crocheted by a familiar night nurse tuck at the end of the bed.

Dear godson and brothers can come to greet you when you have fun. Somea can be browsed until late in the evening, as do others of the same age.

In a group home, many things are different. Grundström says that he is used to going to bed at home at eleven o’clock at home, but in a group home he has to go to bed much earlier. If the mother did not drive to the facility in the evenings with her daughter and bring her to bed, Grundström would be put to bed in the evening in about seven countries.

While lying in bed in a group home, Grundström will no longer be able to use a computer with gaze control, because at least so far no suitable stand has been available. The computer is important to Grundström because it is his window to the outside world and a way to keep in touch with others.

These things make Grundström feel unwell in a group home.

“In a group home I’m a lot alone in the room. No one is dating me, the nurses just occasionally ask if everything is ok. I can’t meet my best friend or my godson, nor do my brothers, ”says Grundström.

Recently, the visit to relatives in Rekola’s group home has been affected by the fact that visiting times have been limited due to the corona pandemic. The situation has been the same throughout Hus’ wards, and it has felt heavy for many patients and relatives.

One the reason Grundström would like to be in her own home is related to dining. Grundström gets food through a hose, but is able to eat if he is helped. When the mind makes a treat at home, Grundström is fed a favorite, chrysanthemum or even lasagna.

“Eating is the only pleasure right now. I also want oral food, but the caregivers don’t eat in the group home. ”

Since there are not enough caregivers in Grundström’s home care ring, she has to move into a group home and it feels distressing to her.

Rekolan the group home is a pulmonologist Eeva-Maija Nieminen responsible unit.

He cannot comment on the affairs of an individual patient, but talks about the treatment of respiratory stroke patients in general.

“If there is a shortage in the home team and the patient cannot be left alone, he or she must be taken to a group home. Such a situation can arise if the nurse becomes ill or the position cannot be filled, ”says Nieminen.

Home care torin the recruitment of workers is hampered by the fact that the situation in the care sector is generally difficult: workers have left for other sectors and not all the vacancies are filled. The corona epidemic has exacerbated the situation.

“In addition, the care of respiratory stroke patients who are completely dependent on help is really challenging, and some find it very heavy,” says Nieminen.

Some nurses like to work independently, but according to Nieminen, most of the time, they prefer to do nursing work with strangers around. Some caregivers find it easier for relatives and others make caring more difficult. Personal chemistry also affects the experience.

“It’s different to be at work in a patient’s home alone without a work community than in a hospital. In general, it is even more difficult to get nurses to the home teams of patients with respiratory paralysis than to the hospital, even though not all places in Rekola are full, ”says Nieminen.

“Sometimes, despite trying, there are not enough people in the home care club, and it’s not that Hus doesn’t want to, but on the contrary, tries to get employees. If that happens, I realize it’s a huge disappointment. Then you just have to persevere in recruiting your employees and hope that the home market will still be up and running. ”

Jessica’s mother Marina Grundström says he has been told that employees do not want to come to them. The mother thinks this is not the case: some may think so, but she also says there are employees who are happy to come.

“I have been told that employees find me challenging and that I intervene in nursing,” says Marina Grundström.

“Of course I’m interfering, I’m doing my best for Jessica, and I don’t think there’s a parent who wouldn’t do it if my own child were in a similar situation.”

The mother feels that the attitude towards her on the adult side has changed.

“When Jessica was a minor, my help and knowledge were well received.”

Marina Grundström admits that sometimes, when tired, things are presented unnecessarily sharply.

“But if I notice a medication error, for example, I have to say about it,” says Marina, who works in the children’s ward in Jorvi during the day as a local nurse.

Jessica Grundström believes that the fact that some people find her mother difficult should not affect her care.

Jessica Grundström has a personal assistant, but if she moves into a group home, the time spent with the assistant will be reduced.

This is because the place of residence affects the support measures and there is no duplication of service.

Now a personal assistant has been available to Jessica for 105 hours a month. According to the mother, there has been an oral talk of 30 hours if Jessica moves permanently to the group home. A decision has not yet been made.

“In general, it can be said that if there are already staff in the place of residence whose duties include assisting in certain matters such as meals, personal assistance cannot be obtained for the same duties,” explains the service manager. Aila Halonen About services for the elderly and disabled in the city of Vantaa. He comments on the matter at a general level and does not comment on Jessica’s case.

When is unable to move, cannot speak and is in a ventilator at all times, time spent with a personal assistant has been important to Grundström. It brings content, tracking and doing to date.

During the summer, for example, he and his assistant went on a taxi in Järvenpää with ice cream.

“If assistant hours are kept to a minimum, even the last joy of life will be lost.”