From the balcony you can see the yard and nearby forest – and you can see them very clearly, even when you are looking from the living room.
“With the gift card I was able to get a two-hour cleaning session that I used for window cleaning. The windows of three rooms and the balcony glazing are now thoroughly clean,” says Ritva Kokko.
Mia Toikkanen from Jyväskylä, on the other hand, took her 14-year-old daughter and spouse to Tampere to stay at a hotel.
“The whole family were able to relax and enjoy breakfast that was made by someone else. My daughter, who needs a carer, finds it hard to be away from me, so spending time together was a less stressful alternative. She is interested in trains and she enjoyed watching them go by through the hotel window. That was an additional bonus.”
“Carers do their work out of love”
In all, 100 carers won a form of respite of their choice in a raffle organised by Orion and Carers Finland. In addition to gift vouchers for cleaning services or a hotel stay, a spa holiday was also on offer.
“We want to support the quality of life of both carers and their family members. Carers do very important work, but in order to cope, they need breathing space and the opportunity to recharge their batteries,” says Janne Maksimainen, head of Orion’s commercial operations in Finland.
Sari Tervonen, Executive Director of Carers Finland, which is celebrating its 30th anniversary, thinks it is important to value the work of carers.
“Carers do it out of love and sometimes also out of obligation. Taking responsibility for loved ones is part of our cultural DNA, but it takes a lot of services and support for informal care scenarios to be successful, as it is a stressful job that requires full commitment.”
Decades spent together bring us closer
Ritva Kokko has been her husband Helke’s carer for 12 years. Her husband suffered a cerebral infarction and became paralysed on one side, and his most recent symptoms are epileptic seizures. Last December, the couple moved from their detached house in Lohja to an apartment in Vantaa.
“I do miss the garden though,” says Kokko. Now they have a balcony instead, which is filled with geraniums and has an electric grill in the corner. Steaks and mushrooms are cooked on the grill.
Kokko cares for her husband with a familiar routine. Two people from home care come in the morning to get Helke out of bed, but Ritva wonders why two people are needed when she could help too.
“Naturally, I would like to help my husband myself, but I am not supposed to do this morning routine. The 10-minute home care visit uses up half of my informal care allowance, which is why I stopped having the evening visits. There would not have been any money left. They are pretty expensive minutes.”
After breakfast, 83-year-old Helke Kokko likes to watch television, and McLeod's Daughters is a particular favourite. It is important to take care of hygiene and there are plenty of medicines to take during the day. Ritva also takes her husband out in his wheelchair every day.
“We always go on an hour's walk. It is hard work, especially when you are getting older and have less energy. But we have coped so far. We have been together for 58 years and my husband’s illness has brought us closer,” says Ritva Kokko, who is 78 years old.
School and athletics are favourites
Mia Toikkanen’s daughter has been diagnosed with epilepsy and mild intellectual disability. Jemina had her first tonic-clonic seizure when she was in first grade at school, and after this her epilepsy has been in the form of absence seizures.
“Jemina had already undergone examinations at the child health clinic, so we already suspected that something was wrong. Later on, they also discovered a genetic defect.”
Toikkanen says that her 14-year-old daughter is at the level of about a 5–6-year-old, but her strengths are her visuality and good visual memory. The only thing she finds difficult is being separated from her mother.
“Although she is very familiar with her grandparents, she has fits of crying when she goes to stay with them overnight, which only end when she gets distracted by something else. Jemina goes to a special school, which she enjoys. While she is at school, I go to work.”
Her daughter’s hobbies include, among other things, horse riding, swimming and athletics, which will continue again after the summer break.
Support is available for informal care
The Ritva and Helke Kokko receive support from their son, who lives in the same house and takes his mother shopping, among other things. Another son also lives nearby, and six grandchildren are a great source of joy.
Once a week, a volunteer from disability services comes to take Helke out for a couple of hours at a time. It is not a good idea to get too attached to the volunteers, as a different person turns up at the door each time.
“First, there were a couple of young Iraqi men and then a Colombian woman, who would have liked to continue taking Helke out. Most recently, a Finnish physiotherapy student turned up.”
They also have the right to use a taxi for the disabled, and a nurse attends for a few hours once a week. The City of Vantaa also provides a substitute carer to look after Helke for 9.5 hours per month, so Ritva can have some free time.
“During that time I take care of my own things, go for a walk, go to the pharmacy and the grocery store, and go shopping for impulse buys with a friend. Most recently, I bought the dress and shoes that I am wearing now. I'm happy that someone comes to look after my husband, as he can't be left alone just in case something happens.”
Perseverance and information are vital
Toikkanen has made use of the service vouchers offered by the City of Jyväskylä for a substitute carer to come to their home to look after Jemina for a few hours. The hours turned out to be rather expensive as Jemina always wanted to go to town or the cinema.
“After Jemina was diagnosed with a learning disability, they wanted to transfer her to another, unfamiliar school, even though changes are challenging for her. I became thoroughly exhausted writing letters to the decision-makers. Fortunately, I received support from that quarter and Jemina can continue at her familiar special school until the end of lower secondary school. She will get the support she needs there and will be able to successfully complete her education.”
Toikkanen wonders how it is possible to fight for the best interests of your child when not enough information is available. For example, at the adaptation coaching course we attended we found out that not everyone was aware of their right to disability allowance.
“I have been thinking that I should start helping others take care of matters, such as filling in applications and making complaints. I am lucky enough to be able to manage my daily routines pretty well, as my spouse helps to take care of our daughter and provides support. I have also gained a certain amount of experience now.”
Text: Tarja Västilä
Images: Minna Kurjenluoma, Aki Kolehmainen
July 16, 2021