Dementia guide

Real story: living with dementia

Peter Van Spyk had Alzheimer’s for 10 years before he was diagnosed. In that time, the family business failed and his relationship with his wife Pat became very strained.

Pat and Peter describe in their own words how dementia has affected their lives.

Before the diagnosis

"It wasn’t until 1995 that I first noticed that Peter was acting strangely. I thought he wasn’t interested in his business any more. He appointed a manager and took early retirement at the age of 54. From then on, he became a different person.

"It all came to a head in 2005 when I opened a letter from the bank asking for £35,000. I read all the bank statements and paperwork from the previous five years. I realised the business, which we were relying on for our retirement, was heavily in debt. The best option was to go into voluntary liquidation. It took a long time to sell the factory and sort out our £360,000 debt. It gave me a very big shock.

"I went to see the doctor in 2005 because I was depressed and terrified about what was happening to the business. I told the doctor I didn’t know what was wrong with Peter. I said I couldn’t communicate with Peter and that he didn’t seem to understand what was happening.

"We went to Addenbrooke's Hospital, where Peter saw a psychiatrist, and had blood tests and MRI scans. In October 2006, the Alzheimer's was officially diagnosed. I think it was a relief for Peter.

"For me, it was a double blow because I had thought that Peter would be normal once we sorted out the money situation. I can remember hearing the diagnosis from our GP. I went incredibly still, and I don’t think I took a breath for ages. Taking it in was so hard, really. I saw no future for us because I realised how difficult it was going to be.

"We were given the drug Aricept, which made a big improvement initially, though it's now less effective. Peter has been quite positive about his condition, but occasionally he doesn’t want to face the reality."

Peter and Pat Van Spyk

Reading the signs

"You'd never suspect Alzheimer’s in someone so young. Peter was 61 when he was diagnosed but, looking back, I could see that he was about 50 when he started acting strangely.

"It was his lack of spatial awareness, his lack of comprehension and his slightly irresponsible attitude that made me first aware that something was seriously wrong. He started scraping the car, which we spent a fortune fixing. Also, he twice tried to cut the hedge and nearly cut his fingers off.

"He didn’t want to socialise. Conversations that involve more than two or three people are too fast for him to understand. I used to think he was being stupid. He would look at me blankly as if he didn’t know what I was saying."

Everyday life

"Peter changes a lot. One minute he’s very worried because he’s lost sight of me, the next minute, he’s full of confidence and pushing through the crowd. He also finds dressing himself very difficult and gets the shirt buttons all mixed up.

"I might say to him, ‘Put the kettle on and let's have a cup of tea’. He’ll say ‘yes’, but I’ll come into the kitchen and find that the kettle isn’t on because Peter hasn't really understood the message. Or he’ll put the kettle on and forget that he’s doing it, so you have to watch him. Once I get Peter to do something, he'll complete it, but if he doesn't know how to start it he'll stand there and wait.

"You have to learn to be patient. Sometimes I get angry, but I just walk away and hope for the best. I spoke to the doctor and told him that sometimes I speak very sharply to Peter.

"It’s awful because he was so full of energy, and I trusted him with everything because he had a sharp mind.

"We finally sorted our finances out last year (2007). We can stay in our house but I don’t know for how long. It has been quite traumatic for me. Peter doesn’t seem to realise our problems, but apparently that’s part of the disease.

"When you're affected by Alzheimer’s it's very hard for you and your family not to become depressed. I don’t have children to share the load and sometimes I feel rather low.

"Things are getting better, though. We were allocated a nurse by the NHS who is our link to the team at Addenbrooke's Hospital. Also, an outreach person from the Alzheimer’s Society is coming to see us and assess how things might be. I keep putting off thinking about the future, and so does Peter. Obviously I’m at the beginning of a long journey. I’m just trying to be as positive as possible."

Peter's story

"I think it’s a terrible disease, I really do. I owe my success to Patsy. She’s really been doing good. She's absolutely fair in everything. She gets a bit cross, so I try to keep it back."

Peter begins to struggle with conversation. He says: "If you’ve had a good education then it’s easier to remember words... I was very lucky to get Aricept. That made a difference. Pat said I changed immediately, but things have gone down again."

When asked what advice he’d give someone diagnosed with Alzheimer’s, Peter encourages them to be realistic and accept their limitations. "Some people complain that they can’t have their car… when I was diagnosed I realised the bad things I was doing while driving. You have to surrender your licence."

About joining the Alzheimer’s Society, he says, "That’s something I’d suggest to anybody. They really should get in touch with them."

For more information on symptoms, diagnosis and treatments, go to Alzheimer's disease.

Page last reviewed: 19/06/2015

Next review due: 19/06/2017

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