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.