Many relatives to people suffering from dementia have to expend a lot of time and energy on organizing everything practical around the care of their spouse. Sometimes this responsibility is put on the persons’ children. This is what happened to Hanna.

When Hanna was six years old she and her younger sister lost their adoptive father to cancer. They were left with their mother Birgitta who alone kept fighting to give her girls a safe upbringing in Kungälv outside of Gothenburg.

Parent to her mother

Around 15 years later, when Hanna was 21, the next blow to the family came. Birgitta was then diagnosed with Alzheimer’s disease. Since she was a doctor she new exactly what awaited her and had a hard time concealing her despair.

A few years with the typical symptom developments followed: problems with short-term memory, sudden changes in mood and an unwillingness to receive help. Hanna led the role in the family to instead become the parent of her mother.

-It was extremely hard. We argued all the time, despite the fact that I only wanted the best for her, Hanna remembers.

Today it is easier. Birgitta is more accepting of the disease and the help that she receives.

-Paradoxically it is easier as the illness progresses, Hanna concludes.

Hard to get help

The responsibility to take care of all the practical issues around the illness was first put on Hanna and her younger sister Geeta who was 19. The siblings felt alone and hardly knew where to start in order to get help. Authorities, laws, LSS- it was unknown territory.

Hanna is still amazed that nobody within the health care system asked if the girls needed help, despite the fact that they knew there was no other parent around.

-We were so young, my sister and me. Where was society’s safety net – for our mother but also for us?

The municipalities need to wake up

Hanna thinks that there are so many teenagers and young adults that are forced to take on a lot more responsibility than they should.

-The municipalities need to wake up and prioritize dementia illnesses, she thinks.

The savourer for Hanna was when her friend recommended her a dementia nurse who helped connect people. Finally, someone who was on her side.

-The contrasts are huge between not getting any help and these troopers who you are lucky to meet. I don’t know what would have happened had I not met her.

Hanna also gathered strength from her mother and the way she fought for the family on her own. Without resentment she tried to move on as her rationale was that you can’t change what is in the past.

-If mum could fix everything for us I could fix this, Hanna reasons.

The network for relatives a huge support

Support also unexpectedly came from reading an article about a young woman who fought for her ill father fighting dementia in Malmö. She started searching the internet for caregivers and relatives for younger people and found them on Facebook. One of them was Don’t Forget Me that amongst other things arranged café meet ups for young relatives in different cities.

  • I can’t believe it! There are more people like me, was my first thought, Hanna explains.

The network has been invaluable for her. She says that other young people in the same situation in a certain way understands what you go through. There are always someone to talk to and ask questions, both when things are good and bad.

-I try to think about what my mother when she was healthy would have said and done, Hanna says.

-People around us say my sister and I are coping so well, but we don’t think like that. We do it out of love. She says that when somebody new in their network appears she and others support the person by telling them how they solved different situations.

-It is a very particular and long grieving process when it comes to dementia. If your parent gets a physical disease you can talk about difficult questions that occur when the end is near, but when a parent becomes ill with dementia this opportunity disappears. You are forced to handle these type of questions on your own. Which is extremely difficult.

Hanna recommends relatives that haven’t yet contacted a network should find one to receive support and help.

-It eases the feeling of being alone, she says.

This interview was made in July 2014, in February 2015 Hanna’s mother passed away.

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