In March 2015 Carina turned 60. It had then been 10 years since she was diagnosed with Alzheimer’s disease. Leading up to her birthday her daughters Felicia and Julia fundraised for Alzheimerfonden to raise money for research.

The very first day money started coming in from relatives and friends and the sum soon exceeded 10 000 SEK. A couple of months later more than double that amount had been raised.

  • We wanted to contribute so that future generations would not have to suffer the same thing we have, says Felicia.

10 years with Alzheimer’s

During 10 years the sisters have seen their mother change and deteriorate. From being an active and loving mother, Carina today can neither walk nor talk and does not recognise her own daughters.

It started with her driving on the wrong side of the road and suddenly not remembering places she had visited hundreds of times, the sisters recollect. Carina was then not even 50 years old and her daughters Julia and Felicia were only teenagers. She soon took time off work as she thought she was burnt out, a diagnosis that soon changed to Alzheimer’s disease.

When their mother was first diagnosed, Felicia and Julia didn’t know what the disease meant. The fight to get their mother the right kind of help was long and was followed by one assistant officer after the other. Not once did someone within the care system or municipality ask the girls if they needed any kind of support.

Boiling with frustration

  • Looking back, I am amazed how bad things really were. We received zero sympathy and no feedback, says Felicia.
  • When I think back I boil with frustration over the quality of the help we received over the years, Julia concurs. 

The shocking news

For Julia the realisation of the gravity of the illness first hit her when she in class was told about different neurological diseases of the brain, amongst them Alzheimer’s disease. Julia then understood the disease her mother had both in terms of it being incurable and deadly. Shocked she rushed back home from school and cried in her mother’s arms.

Older sister Felicia reacted to the news about the disease in a different way.

  • I entered some kind of darkness and was bedbound for two weeks, she explains.
  • I had always had high demands on myself. I wanted to excel in school and in my career as a ping pong player. I always wanted to help everyone around me. The news about my mothers disease hit me hard as I felt I didn’t have any control over the situation and like there was nothing I could do.

Personality change

At the time the sisters were unaware of how the disease would turn out. Their mother Carina’s personality eventually changed and sometimes she had violent hallucinations and aggressive outbursts, even towards her own daughters. Once she took a strangling grip on Felicia. Today, when they have heard other young relatives talk about their experiences they start to understand she might have had a mix of different dementia diagnoses.

Julia describes everyday life as hard. During her time at upper secondary school she had to stay at home a lot to take care of her mother after school instead of seeing her friends.

-The most difficult part was to se my beloved mother disappear in front of me. To come home every day without any clue about how my mother was doing that day.

Painful move

The worst part was when Carina finally moved away from home. Julia chokes on her words when she describes:

-To leave mother at the home that cold January day was the worst thing I have ever experienced. The guilt over to leave her there… It felt like I had failed because I no longer could take care of her. Even if I had lost my healthy mother years before the move it was extremely painful to know that she wouldn’t be there when I came home.

– It was also very hard to know that she was so lonely and that she was not being taken care of.

Mistreated and drugged

Carina ended up in a care home that at first sight seemed good but that after a while turned out to be gravely understaffed. The staff for example didn’t cut her toenails, which turned crooked under her toes. She also fractured her hip, which went unnoticed for three months due to the heavy medication she was on.

Julia was the one living at home at this time and she chokes on her words when she describes it:

– Mother ended up at a home with only old people. The staff thought she was difficult to handle and gave her a lot of sedatives. When we came to visit her she just sat and stared down her coffee cup.

After one and a half years the sisters found a better home for their mother, Kullabo in Graninge. There they had different departments adjusted to the severity of the progression of the disease in the patients. Julia and Felicia thinks that their mother received great care there.

Affected quality of life

That the sisters have had each other for support during these years has of course been a relief. Recently they have come into contact with other young relatives. To exchange experience with other affected relatives is important and can help the processing of the experience, they think. Julia’s boyfriend was also like an extra son to their mother. He spent a lot of time with her before she moved to the home.

The mother’s disease has shaped the daughters’ view on life.

– I cherish life in a different way now. I try to live in the moment, says Felicia.

Today Julia studies and lives in Halmstad.

-For me the disease has affected my career choices. I study psychology and I want to help other people, especially children, Julia says.

-I am also a temp at a school and work as a contact person.

People don’t understand that dementia is more than forgetfulness

Today the sisters feel ready to spread knowledge about the dementia diseases.

-Most people seem to think that dementia means forgetfulness for a certain age group, says Felicia. They don’t understand that when the cells in the brain deteriorate the body also stops working.

-Sometimes we hear that we should be happy that we still have our mother, but for us she disappeared years ago.

-I wish there was the same kind of attention around dementia that there is around for example cancer. A gala would an interesting thing to help organise, she says with enthusiasm.

Too much responsibility for young relatives

Felicia thinks that politicians should focus more on dementia diseases, that despite their prevalence receive such small funds.

-Too much responsibility is put on the young relatives, on teenagers whom are expected to become parents to their own parents. I wish I could change that, Felicia says.

Text and photo: Christina Nemell

If you want to do what Felicia and Julia did and fundraise for dementia research, read more on Alzheimerfonden’s webpage .

http://www.alzheimerfonden.se/

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