The ravages of early onset Alzheimer’s disease

 

Jurg Kunzle

Wollstonecraft, New South Wales

Jurg is 65 years old. Born in Switzerland, he still has a Swiss accent and European mannerisms. He was diagnosed with early onset Alzheimer’s disease in early 2013. I interview him with his wife Marion by his side. Marion is able to fill in the blanks when he is no longer able to. The couple are friends of my extended family and I notice that Jurg – always fluent in English – finds it more difficult to express himself than I remember as a child. Words, especially in English, no longer come easily.

 

Jurg: I was retrenched in 2000 after twelve years with the same company. This was a great disruption to my life, and began a four-year period where I changed jobs twice and was unemployed for two years.

Marion: I saw the signs of Alzheimer’s back then. Jurg was looking for jobs and doing phone interviews, but he started to have trouble answering questions and requests for information on the phone. At the time, I suggested putting a card with the basic details near the phone. My mother had Alzheimer’s disease, and I knew the signs. All I could think was ‘this can’t be happening to me twice’. In late 2012 I spoke to my GP about it, and then booked Jurg in for an appointment with a specialist.

Jurg: It was very difficult for me to admit I needed to go to a doctor. But I knew there was something wrong with my short term memory. I think the stress from unemployment made it worse. And when I did go to the specialist, I couldn’t do the memory test. When the doctor asked me where I was, I couldn’t say, aside from knowing that I was in Sydney.

Marion: It was a difficult time. When the doctor asked whether Jurg had thought about suicide, he said ‘yes’. I was deeply shocked. When asked what had stopped him, he said ‘family’.

I notice that Jurg is agitated, he does not like this topic. It brings up painful emotions, and he does not have the words to express himself as clearly as he would like. As Jurg struggles to explain, his speech reverts to more European speech patterns. Marion suggests words at various intervals.

Jurg: We told the children straight away, Berenice and Danielle. Danielle, the youngest, is more sensitive and took it hardest.

Marion: Jurg could no longer work. But we had debt. For financial reasons, we had to downsize. We have been in this apartment for two years. We were very lucky, as we had a great deal of help from our friends. One couple even temporarily covered our deposit so we could buy this apartment as we were in the process of selling our old home.

Jurg: I worry about Danielle, my biological daughter. I don’t have the inheritance I thought I would have to give her. I am on welfare... I received the Disability Support Pension until I was 65, and now I receive the Age Pension. It is a lot less.

Marion: I have had to take over the household finances – something Jurg always took care of. We had to spend all of our resources before we we became eligible for welfare payments. But I was rejected for the Carer Allowance, I do not understand why. This makes our financial situation more difficult than it would otherwise be. We have gone through the whole process, we have also set up our wills and Power of Attorney.

Jurg: I understand what my path will be. I was thrown from a car accident into a tree when I was 25 and almost died. I still have a scar all the way up my chest. So I have thought about the ‘why’ of life. And now years later I am here, in Australia.

I ask whether Jurg has thought about Danielle inheriting Alzheimer’s disease. Jurg says no, but Marion responds.

Marion: My mother and grandmother both had Alzheimer’s disease. I worry what will happen to me. My mother died from complications from the disease – she stopped communicating with people, and then she fell and broke her hip. With Alzheimer's disease, routine becomes so important.

Jurg nods his head vigorously.

Jurg: At this stage, I only know what is routine. I can walk to my post box, which I have had since 1982. And I can still meet Marion at her work. I know where it is and how to get there, one suburb away.

Marion: He knows to sit in the white chairs near my work and wait for me. But there have been problems. He got lost one day. I was desperate when I couldn’t find him. It turned out that he was in the wrong place in the right building, but he thought he was in a different suburb. I have lost 10kgs due to the stress.

Jurg (directly to Marion): I want to help. I can still do the small tasks. I buy the apples.

Marion (laughing): Yes, and the raspberry jam. You forget, and have now bought us four jars of raspberry jam.

Jurg (addressing me once again): I used to swim. That was my time. But now I can only go if someone drives me there. And I no longer drive... There was an incident.

Marion: One time Jurg caused a car accident and didn’t tell me. Another time he drove past me because he didn’t recognise me. He hasn’t driven for three years, and he officially lost his licence this year.

Jurg is engaged in this topic. He is gesturing wildly with his hands, and sitting up straighter. He wants me to understand what he is losing and has already lost.

Jurg: The world is closing in on me. I don’t even know when I am not here. It is the reason I don’t talk that much. And when I get lost, I don’t ask people for help. What would I ask? At those times, I don’t know what I need to ask.

Marion: Jurg doesn’t remember the most recent episode. When he got lost in Chatswood.

Jurg: I got lost. Why can’t I remember that?

Marion: There is anger and frustration when he can’t remember, when he can’t express himself, when there is no routine. And he has no patience. Our grandchildren are 9 and 6. They are boisterous and exuberant, but Jurg gets frustrated and angry with them. These days, other people mean the chance for misunderstandings and confusion.

Jurg: Sometimes I have to walk away, I have to leave the room. The doctor told me to walk it off when I get angry, and so now that is how I calm down.

Marion: Jurg has trouble with his maintaining his emotions, especially anger. He tripped someone over in a shopping centre because they were in the way. When he was driving, there was road rage.

Jurg: I don’t have any patience. Now I go prefer to go out in the morning, when there is no one in my way.

Jurg laughs at this. Humour is one way to cope. I decide to ask if Jurg takes anti-depressants. He seems uncomfortable, but says yes. Marion tells me she takes the same antidepressant, at half Jurg’s dose. Both look ashamed. I tell them I also take the same antidepressant, and Jurg thinks this is hilarious. We laugh and high-five: antidepressants are a part of chronic disease life.

Jurg: I understand what my path will be. But it has taken me this long to realise what has happened. I hope for a miracle drug, but that is years away. But I would take anything, I don’t have a problem with trial drugs. And if it comes to the end… well, I won’t know, I will have a great time! The important thing is to have a good time getting to the end. I am positive, though. Maybe there will be a new drug. Anyway, my father died at 52 – I can say I beat him!

Marion: This year, and for the first time in 15 years, we are going back to Switzerland. When I took over the finances, I tried to close Jurg’s old credit card. And I found out there were 650,000 frequent flyer points that hadn’t been used. Jurg had forgotten about them! It was a lovely surprise. It means we can take this last holiday. We are going to New York, London, Paris, Barcelona and Zurich.

Jurg: It is the right time for us to go. I want to see my brother, who I haven’t seen in ten years.

I ask Marion how she is planning to look after Jurg. Jurg is silent, and seems resigned to the fact that this is necessary.

Marion (hesitantly): I might need to pin a sign to his shirt with our current hotel and phone number.

Jurg interrupts, suggesting that the problem will be solved if he wears his old dog tag. He seems excited about this. Marion tries to explain this won’t help, as while it has his name it doesn’t identify where he is staying or how to get in touch with her. Jurg protests then falls silent; I am not sure he understands.

Marion: I worry about losing him in the men’s room. What if he leaves by a different exit?

I ask if they have asked for help from Alzheimer’s Australia or another organisation.

Jurg: That is my next step. At the moment I am figuring it out, but I probably need more information.

Marion: Anglicare picks Jurg up twice a week, on Wednesdays and Thursdays. Sometimes the group goes on excursions, like to the Modern Art Gallery, but mostly they spend the day in a community centre. They do paper crafts and keep each other company.

Jurg shows me his paper craft displayed nearby. He is proud, but I am saddened. I had assumed it was the work of one of his grandchildren.

Jurg: Ten years ago I wouldn’t have gone to this type of thing. I am an atheist. But I like to help. I am physically able, unlike the others that go. So I can help, helping is still something that I can do. I help those with physical disabilities, and I help the Reverend. They are good people, we talk about what has happened. Now I even listen to his sermons.

Jurg appears happy, even peaceful, as he talks about the sermons. They are a constant, a routine, and they bring this atheist comfort in a world dissolving around him.

Marion: Friday is Jurg’s day alone. He does the vacuuming, and he still walks to the train station to wait for me.

Jurg: I want to help. I am doing everything the best I can. I am up, I am positive – I don’t want to kill myself. If this is what it has to be, then I am doing this. I am carrying on and I am enjoying life. With Alzheimer’s disease, people think that ‘this is it, I am useless’. But that is negative, and the negative, it kills you. It is what it is. If you lose something, it is gone. Forget about it, move on. Be now, and enjoy. I will do everything I can, as long as I am here. I want to do the right thing. I hope to help others who read this. Anyone can talk to me, and I will tell them that has happened, and that I am still happy. This interview is for the others, the ones who have what I have.

Throughout the interview Jurg has been wearing gloves, even though we are inside. Like many with neurological diseases, he suffers from cold extremities, particularly the hands. He removes the glove to clasp my hand as I leave, and he is shocked (and pleased) to find my hands are as cold as his. We compare our hands to Marion – she is the only one in the room without a neurological disease. Her hands are warm. Jurg hugs me and promises to send me a photo from Zurich.