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Mojca Hladnik and Matjaž Rižnarič (Slovenia)

Personal experiences of living with dementia

Living with dementia: things become easier once you know the diagnosis

Mojca Hladnik, a kindergarten teacher and her partner Matjaž Rižnarič, a croupier in a casino, made their home in Jesenice. Ten years ago, when their first baby was born, Mojca noticed Matjaž's changed behaviour. He kept losing and forgetting things, usually his keys or wallet.

She was even more bewildered when he started coming home without doing what he went out for in the first place. She attributed his forgetfulness, absentmindedness and exhaustion to the thrill and stress accompanying the birth of their first child, and to his strenuous night shifts at the casino. Nowadays, Mojca knows these were the first signs of Matjaž's disease, which went unrecognised - even by doctors some years later. At 42, he was too young for anyone to suspect dementia.

Unusual behaviour

Matjaž's unusual behaviour slowly subsided, their child was growing up, Mojca went back to work and their life was back to normal. But not for long. When their second child was born four years later, the thrill at the birth of the baby daughter was tainted by strange behaviour from Matjaž again. Mojca realised that she could no longer trust him with errands anymore.

She remembered similar changes in Matjaž's behaviour after the birth of their first child; however, this time the changes did not disappear but were aggravated. Among other things, Mojca noticed that Matjaž no longer recognised the value of banknotes, and he started to leave for work very early without being able to give any reason for it.

When she asked him whether he has any problems at work, he denied it. Soon after, she received a call from the casino and was told that Matjaž should take sick leave because he was unable to perform at work. She was also asked to accompany him to his doctor because he seemed unaware of any problems.

In search of a diagnosis

Following the first visit to the doctor's office, the long process of searching for a diagnosis began. For a long time, nobody had a clue about the reason for Matjaž's sickness. Tests were performed and doctors mentioned stress and depression, but nobody ever mentioned dementia.

“It is difficult to get the right diagnosis if someone does not fit the usual professional criteria. Matjaž was simply not old enough that anyone would suspect dementia. All the tests were more or less within normal frames, and he was not being far from being declared a malingerer”, Mojca recalls the difficult times.

She was also very upset by the remark of a psychiatrist that Matjaž's referral to him was unnecessary. When additional reports were demanded by the disability commission, he was sent to a neurologist who performed the usual tests for dementia and the diagnosis was finally affirmed.

The long way to the right diagnosis was partly due to his young age and partly to his intelligence, which was above average and made the cognitive deficit less observable. Some more tests were performed, including a genetic one which showed a specific gene mutation. His parents were already deceased at the time, but some relatives testified that Matjaž's father might have had dementia.

Problems

“The period of uncertainty was the hardest to bear”, says Mojca. “After the diagnosis was established, I felt a certain relief. It is easier to fight when you know what you are fighting and you know what to expect, although I was aware of the fact that the disease is incurable.”

After the diagnosis in 2010, a formal solution came quickly and Matjaž became eligible for a disability pension in 2011. “But the problems were not over”, says Mojca. “What we needed most was down-to-earth practical advice, which you most often get from other people facing similar problems.”

Day care

Mojca still works and the question of what Matjaž would do while she is away bothered her. Even now, he can be at home alone for a short time, but cannot leave the house without an escort. She inspected several day care centres and finally found one close to their home.

She drops him off in the morning and picks him up after work. Matjaž feels very well in day care and is included in several activities which are intended to diminish mental and physical decline. He has also been prescribed drugs which slow down the course of the disease and alleviate its symptoms.

Family

Mojca is trying to organise family life so that the children are least affected by their father's disease and he is taken care of in the most effective manner. In this she is supported and helped by her parents. She gets a lot of understanding also at her workplace, where she can get a leave of absence whenever it is necessary for her to accompany her husband.

When she went for a holiday to the seaside with their children, Matjaž spent his holiday in the nearby old peoples’ home. Every change of routine upsets him and he does not want to go even on short family trips anymore. But the family found help in their own block of flats, in the form of a kind neighbour who is happy to take care of Matjaž when Mojca is absent.

Children

Their father's disease is openly discussed in the family; nothing is ever covered up. “For now I have always been able to explain the children everything - on their level of understanding, of course”, says Mojca.

Although the children are only 10 and 6 years old, they understand their father's disease very well and are well aware of his limitations. In spite of this relentless disease, they still function as a happy family. When you set eyes on the parents and children sitting cheerfully at the dinner table and playing with and cuddling their pet lizard Elizabeth - which Matjaž also likes to put around his neck - you can feel their optimism and courage.

Will Mojca get enough help and support in future to be able to support her children and husband through her own resilience?

Mojca, Matjaž and Neža

 

 
 

Last Updated: Monday 16 November 2015

 

 
 

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