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Dream of Being Out and About

Updated: Sep 12, 2022

Since I visited Helle in Sweden two years ago a lot has changed.

In 2019 before the pandemic Helle worked full time as a teacher and looked after her then 13-year-old daughter Johanna who has Unspecified Psychological Disorder, Autism and Neuromuscular Scoliosis. Johanna is non-verbal and 100% dependent on Helle and paid carers.

Back then Helle literally worked 2 full time jobs (one paid and one unpaid) simultaneously, which took its toll with stress and constant haunting thoughts about how to cope financially and emotionally. As well as these challenges Helle’s older pregnant daughter lived at home with her boyfriend and Helle’s eldest son slept on the sofa as he was in-between flats.

When in the cold winter of 2020 a whole wall of tiles came down in the damp bathroom Helle threw in the towel and went on sick leave so she could make up her mind about her and her family’s future. This break lead to dismissal but rescued her mental health and physical strength.

The Swedish social services are well established because of high taxes making it possible to support people like Helle.

It doesn’t mean it didn’t take a lot of form filling, inspections, assessments and time to equip Helle with the Care Plan she now has. Helle is now employed full time as 15-year-old Johanna’s carer.

Helle also manages herself and 3 additional full-time carers plus deals with all the school, physio and other outside the house activities for her daughter (whilst being paid).

This means that Helle works 40 hours a week which gives her time to run her household, spend time with her other children and her new grandchild. Her daughter’s young family has just moved to a flat.

With renewed energy and head space Helle has just received builders’ quotes for renovating her bathroom. Helle spends many hours administrating her life and care responsibilities logistically and financially but she is in a position now where she can join a weekly art class and go away for the week-end.

While I was there Helle had an appointment with a garage which together with disability organisations convert cars to fit individuals with different needs. At the moment Helle has to get Johanna from her wheelchair into a fixed seat. Because Johanna now is 15 and a solid young woman, she is both heavy and sometimes reluctant to get in.

When she is seated Helle then have to lift the bulky wheelchair into the back of her car where it only just fits if it’s positioned the right way. These manoeuvres means that it takes a lot of time and strength to get in and out of a car.

Helle and Johanna love to explore so they were happy when they were successful with the application to get financial help to convert a car to make it easier for them to get out and about.

At the meeting Helle is asked questions to determine what size and which changes will suit her.

Johanna’s assistant Lubna is present so Helle without disturbance can take in all the information given by the mechanics. It’s also an opportunity for both of them to try out different options and discuss afterwards what would be the perfect car for them.

When they have decided Helle will sell her present car and buy the kind of car appropriate for her, and the garage will make all the changes without extra cost for Helle.

After the meeting on the way back Helle and the assistant discuss excitedly if a small and easy to park car is a better choice than a big monstrosity which would hold the whole family including wheelchair. They are giggling, laughing at their excitement of opportunities this new vehicle will give them.

At home Lubna gets on with Johanna’s care while Helle starts supper pleased with their trip. Life is good. There is a lot to smile about.

When I leave, I know that Helle is in a happier place than when I left her at my last visit. I will be looking forward to following their new adventures.

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