A daughter’s story: caring for my father who suffered from dementia

When a close relative is diagnosed with dementia it may come as a shock. When journalist Hanna Jensen’s 74-year-old father was diagnosed with dementia, she became his carer at the age of 39.

Hanna Jensen’s father had probably been suffering from dementia for years, but Jensen and her brother were unable to associate his strange behaviour with dementia. For example, he made notes in his diary every day about everything, with exact times – he would make a note of appointments and who he had met, trips to the toilet, moods, the weather and his alcohol consumption.

“Dad had always done slightly strange things. Sometimes we’d give him a vague time instead of a precise one, just to annoy him. We didn’t realise that his calendar was a survival method,” says Jensen.

“Dad’s dementia was diagnosed in tests carried out at hospital after he’d suffered a sudden illness. Looking back, signs of his dementia had been apparent much earlier than this: he’d repeat things during a conversation, he’d leave things behind, and he lost weight and suffered from depression. Dad also started cancelling appointments and started spending more and more time on his own. He also had trouble with his balance, which is something not many people would associate with dementia.”

It is important for a carer to live near to the dementia sufferer

“Dad lived alone in Lohja when his diagnosis was confirmed.” The doctors suggested that he move to a local authority care home for dementia sufferers, but Jensen and her brother decided against this. They found sheltered accommodation in Helsinki where their father was able to live in his own home and retain his independence.

As a mother of two, Jensen had to divide her time between her family and caring for her father, so it was important that the distance involved was not too great. Now she was able to visit her father a few times a week. Fortunately, he settled in well to his new home.

“Dad’s move to Helsinki was crucially important, as it meant that he was nearby.”

Dementia is not all bad

Jensen decided to adopt the approach that caring for her father would be tough but also rewarding. She believed that a carer should not expect thanks from a dementia sufferer, but should instead be grateful for the chance to care for someone close to them. Carers also need support, however.

“The weight of responsibility was huge. Caring for Dad was not stressful, but he was constantly on my mind. It was a relief to be with people who weren’t afraid of the illness and whose behaviour made me realise that we can get through this. That really helped me a lot.”

Jensen’s father was an easy patient in that he was never aggressive at any stage, and right to the end he was very grateful for all the help given. Previously, he would get agitated easily, but now he mellowed out and Jensen found that they got on better than they had before his illness was diagnosed. The relationship between father and daughter improved after the diagnosis.

Jensen found it most difficult to cope with her dad’s loneliness

According to Jensen, dealing with her father’s loneliness was the hardest thing about taking care of him.

“I couldn’t do anything about his loneliness, as my other responsibilities prevented me from doing any more than I did. It was tough, as he had previously been so sociable and now he would just spend his time sitting by the TV.”

Jensen is convinced that she did her best for her father. However, looking back, she wishes she’d gone to see him more often before he became ill rather than always inviting him over to her home.

“When you visit someone’s home you can see if something is not right. There might be unpaid bills or a lawn which needs cutting, for example.”

Role of carer: listen – don’t make judgements

While her father was ill, Jensen found out about validation, which helped her cope and deal better with changes in behaviour.

The basic idea in validation, is that a dementia sufferer is behaving illogically only from a healthy person’s perspective, not from their own perspective. You shouldn’t try to pull dementia sufferers into the world of healthy people, to change or judge them, or argue with them or lie to them. Neither should you ever ask them “Why?”

It is important to focus on their strengths as they are only too aware of the things they can no longer do. And if you are tired, don’t take this out on the person you are caring for.

“As little as eight minutes of non-judgemental, genuine and emphatic listening a day is enough,” says Jensen.

When things get difficult, Jensen says it is important to remember that this is an illness in which the brain is not processing messages the way it did before. Try to suppress feelings of anger and aggravation and instead show an interest in the disease and try to understand what is actually happening in the brain.

Author: Suvi Huttunen