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Hasse and Birgitta Hansson

Personal experiences of living with dementia

Hasse Hansson, 68, who was diagnosed with Alzheimer’s disease in 2003, and his wife, Birgitta Ekmanner Hansson, 64, have lived together for nearly 30 years. In this interview they talk with Alzheimer Sweden about living with the disease.

The news that Hasse has Alzheimer’s disease came as a terrible shock! Although Birgitta had realised that Hasse was sick, when it turned out to be Alzheimer's disease it first seemed like a disaster. Being aware of the fact that his memory is declining, Hasse prefers that Birgitta tells their story. And so she does.

“Our daily lives have been affected by the disease. Hasse's memory has gradually deteriorated. Take for instance all the bills which Hasse cleverly took care of before and which I have now taken over. Although Hasse understands his illness, it offends him when he cannot do what he has done before. Today he can get lost in the city, especially places he has not been to very often. Simple things like going shopping nearby sometimes result in Hasse coming home with wrong products. While realising that this can be the case, he always finds a humourous way to sort it out and save his honour. This highlights how vital humour is to us. We are actually in the middle of the grief which surrounds this incurable disease, and it is important for us to be able to laugh at the misery.

“We have both worked as teachers. I´m now retiring. During Hasse’s working life he has been a lecturer, rector of Konstfack (Art School) in Stockholm as well as having written pedagogical books of art. I have got a son, and Hasse a daughter and a son from earlier marriages. Together we have five grandchildren.

“The disease came on slowly. It began with Hasse getting very tired. In the autumn of 2002 he had been unusually busy at Konstfack with teaching and lectures. In addition, he had several book projects which should have been completed. He had not managed to get much sleep and he had felt a tremendous amount of stress. Added to this, at Christmas, there were many people and many obligations to fulfil.

“It was then that Hasse broke down. "What`s happening to me?" he said with anxiety. Whereas Hasse would normally be very well-organised and calm, Christmas proved to be too much for him. It was obvious that something was wrong and I told him to go and see the doctor.

“We all thought that Hasse was burnt-out, but the doctor started investigations which continued for a long time. I knew nothing. I thought the samples were taken for a medical investigation. We were finally told that the test answers were clear and that we would see a doctor at Huddinge hospital. It was a Friday. I got a shock when it turned out that we were going to the Memory Clinic.

“The doctor entered and looked Hasse straight in his eyes and said: “You have got Alzheimer's disease!” I felt like falling headlong into an abysmal darkness. I had never had any thought of Alzheimer's disease.

“Now I saw Hasse disappearing in front of me and we both started crying. Finally we calmed down and then something very strange happened. Hasse had relaxed and was relieved to finally understand what had been wrong. We stopped talking and thinking about this dramatic information and instead we took romantic long walks and went to different events going on around us.

"However, this feeling did not last We woke up the following Monday morning and landed straight back in reality. What would happen now? We had to grope our way along. Much seemed to revolve around different types of medication. For a long time Hasse had many problems with medication. Finally he got the medication that worked for him.

 “Hasse wished that everything would carry on as usual, for as long as possible. It took a very long time before we told anyone about the disease. Our own fear and ignorance made it difficult, but we realised that it must be done. First we told close friends and some of Hasse´s colleagues at Konstfack. At last we got the courage to tell the family. We told our grown up children when we all were gathered and we were nervous of their reaction, but despite anger and strong emotions, they all took it well.Hasse continued stubbornly to work even though he began experiencing severe concentration problems. Retirement came earlier than expected.

 “I felt very bad and became increasingly concerned. What happens to Hasse later? How will I be able to handle this?I began searching for more information on this disease and found the Alzheimer's Association. When I talked to a woman at the association's office, she asked: "How are you Birgitta in all this?" This had never been an issue in the past. Normally, the question would be to enquire after Hasse. When she instead asked how I felt, I started crying and said: "We were going to grow old together, and now this!" I will never forget that conversation. It was the first time I met real understanding. She knew exactly how I felt. Coming into contact with the Association was like getting a life-line.

“During that time, 2006, the Alzheimer’s Association had launched an Alzheimer Café in Stockholm for young people diagnosed with early onset Alzheimer disease.It felt absolutely fantastic to meet and talk with others in the same situation. Often the Café provides lectures from researchers, health professionals and entertainers. We have got new friends there.

“We are forced to adapt ourselves to new situations as time goes by, which is especially difficult for me as carer and I don´t know how I could cope with this disease or my grief without support from other people in the same situation!

“We have our “twilight” days and sometimes everything feels hard. But then we try to go out to see an exhibition or go to theatre or cinema. It’s important to find stimulating things to do together.”

Published in Dementia in Europe Magazine, issue 4, December 2009

 

 
 

Last Updated: Thursday 21 June 2012

 

 
 

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