Losing Things, One by One
In the first year after Shoko’s diagnosis, life continued much as normal. She could still manage day-to-day activities – looking after the house, cooking, sewing, writing letters, cycling here and there. When her cousin sent us a book he had edited, with the history of her mother’s family and their successful silk-weaving business, she wrote in all the names of her aunts and uncles and cousins in English. She continued to compile photos for her series of family albums, going back to the beginning of our marriage.
But she lacked an overall framework.
‘What day of the week is it today?’
If I said ‘Sunday’ or ‘Monday’ she knew what that meant and what activities were connected with it. But she could never remember that Monday night was the time to put the rubbish out for collection. By Saturday she would want to put it out. I found this an irritation: why couldn’t she remember the correct date?
At the same time, I did begin to realise what an extraordinary thing memory is. When you start the morning not knowing what day it is, not remembering what happened yesterday, not quite sure what happens next, each day is a succession of new experiences. We received a book called Helps to Memory from the Alzheimer’s Society. It had useful tips on how to strengthen memory by writing things down, making lists and so on. But already Shoko was unable to do any of that. We had a sign about the rubbish day on the fridge. I would point to it, but it had no relevance for her: she had already passed that stage.
‘Until you start losing your memory, you take it for granted.’8 But when it starts going, you can’t plan, you can’t look forward to things, you can’t keep track of things you are doing. You lose the security of knowing what has just happened and the assurance that it will continue.
I had begun to work part-time and could work from home, which meant that my hours were flexible. We tried to take alternate days when we would do things together, travelling in London, going shopping or to museums and galleries. Sarah was living with her husband, Tom, not far away in Tooting. We saw them often and Shoko continued to look after our granddaughter, Sasha, on Tuesdays. She would pick her up from school and bring her home to play and have supper. I would then take her back to her parents in Tooting. Jonathan and Elsa were living abroad, but we saw them from time to time as well. They were all very supportive, as we watched for signs of change. They too had earlier experienced my father’s illness.
Shoko’s memory wasn’t very good. But it didn’t seem to be getting worse. Maybe, I thought, the herbal medicine was helping her.
But something else was happening. Shoko began to be concerned that things were missing from the house. We had a lodger who shared the downstairs bathroom and a passage where we stored things. Shoko was convinced that the lid of a container had been opened and rice was being taken from it. I didn’t think so, reassured her, and didn’t take it too seriously. But a few weeks later she saw that a gold chain and brooch were missing from the bedroom and couldn’t be found anywhere. This led to greater tension and in the end we decided that we would have to ask our lodger to leave. It was difficult for the lodger, and a very unhappy time for us. Shoko was convinced that things had been stolen. She insisted that we call the police. (They came, listened carefully and advised us that pressing charges could create a very difficult situation.) I didn’t understand what was happening and found it hard to handle.
Shoko continued to worry that things were going missing. Again and again, she would count the cushions in the sitting room, the mugs hanging in the kitchen, the cutlery and plates in the drawers and cupboards. We made lists of everything and put them in prominent places. Shoko began to move things and hide them so they wouldn’t be taken.
She worried about any cup or mug that seemed near the edge of the table and would move it away. She insisted on keeping the dining room cupboard with her best china locked. We kept the key in a small box in a drawer. She couldn’t always remember where it was, and then she would find it and insist that we needed to move it to a safer place. (‘But where?’ I thought. ‘You will forget again…’) So we argued – quite fiercely at one point – over where to keep the key.
I found all this tiresome, and often became irritable. I tried to reason with her that everything was safe. The house was locked. The lodger had gone and we had changed the locks. Nobody could get in to take things. She was not convinced.
I knew that her behaviour was not normal. But I didn’t really connect all this with Alzheimer’s, because I thought that was primarily about memory loss. That was what we had observed with my father. And Shoko seemed reasonably stable in that regard.
So I was just irritated. And in fact I was really troubled by what was happening. Some mornings I lay in bed, wondering how to get up and face the day. I felt so helpless. But I thought that if I could explain things better, Shoko would understand. So I did my best to reason with her, without great success. Our son, Jonathan, told me there was no point in reasoning, but I didn’t see it that way at the time. A close friend gave a lot of help and advice over the missing objects and dealing with the police, but didn’t make a connection either with Alzheimer’s. So we just struggled on.
What I learned later might have helped me to respond better. Books that I read afterwards explained how Alzheimer’s affects different parts of the brain:
- Cognitive – difficulty with memory, losing things, storing things in odd places to keep them safe.
- Emotional – becoming agitated about small things, being suspicious or paranoid, getting impatient, for example about waiting in line. Shoko became very restless when we reached the supermarket checkout; she didn’t want to wait.
- Functional – unable to plan, losing skills like sewing or cooking.9
Shoko’s concerns and worries were completely consistent with the changes that were taking place in her brain. Reasoning with her was not necessarily the right response, because she wasn’t being unreasonable or difficult. If I had understood this, could I have been more understanding and less stressed?
Other changes were taking place, step by step. The pattern of our life was being altered.
Shoko loved her sewing machine and could do (almost) anything with it. But one day she looked at it and couldn’t remember the sequence to set it up. I couldn’t do it without carefully studying the manual, so wasn’t much help. She didn’t open it again.
She was still cooking, but when it came to making her famous apple pie or Victoria sponge cake, I needed to do all the measuring and eventually the whole thing (she still rolled the pastry and did the icing, for a while).
When we had guests, it became difficult for Shoko to plan and organise so I took charge and did most of the work, with all my limitations in the kitchen. Shoko wanted to help and advise, but would get confused. I should have been encouraging her to help and keeping her involved, as all the books I later read advised. But that wasn’t easy to do, especially in the kitchen. In my controlling way, I wanted her to sit quietly at the table. ‘Just let me get on with it,’ I said. I didn’t realise how different it would be when she really did sit quietly, in the years ahead.
We were experiencing the gradual loss of function of different parts of the brain, particularly the ability to plan and execute, along with certain skills.
One by one, she was losing them.
Despite all that Shoko was gradually losing, our life still continued more or less normally. In September 2013 Tom and Sarah moved with Sasha to Barcelona, where Sarah joined the regional office of WHO. They were concerned about leaving us but we assured them that we were fine, though we would miss them greatly.
We kept what was happening to ourselves. From the outside nobody would have noticed any change, beyond our immediate family and close friends. (The family did notice and sometimes felt they needed to ‘cover up’ lapses in conversation or unusual behaviour, as Jonathan told me afterwards.)
Later we learned that the symptoms of Alzheimer’s ‘can be stable for up to five years’.10
But the wave was steadily advancing.
We were still going out as usual, by train or bus, enjoying the liberty of our Freedom Passes. Shoko’s sense of direction had never been good, but she knew central London well and we could arrange to meet at a straightforward spot, for example the ticket barrier on Platform 1 at Waterloo Station. But then a series of incidents brought an end to that.
Shoko had never been comfortable with a mobile phone. Early in 2013 we bought one with a simple display and she agreed to carry it. I phoned her to try it out, as she was going by bus to pick up Sasha from school. She answered, which was great – but as a result she missed her bus stop and got lost. A few minutes later the school phoned to say that nobody had come for Sasha. Then I got a call from another school to say that Shoko had arrived there. I had to go quickly to pick up Sasha and walk with her to the other school, where Shoko was waiting, not quite sure what had happened. We couldn’t really use the mobile phone after that. And I began to pick up Sasha in Shoko’s place.
Another day as we returned home she stopped to go the ladies’ at the station, while I waited for her in the waiting room. After five minutes I began to look for her but she was not in the station. Somehow she had gone past me and was nowhere to be seen. And I was holding her handbag with her house keys. As I stood outside the station, peering at the bus stop and looking in the shops, our neighbour’s car pulled up. He told me that Shoko was at their home. She had met one of our friends and they were waiting in our neighbour’s house. He had very kindly come to tell me. What a relief: but what a worry as well. Would she get lost again?
A few weeks later I asked her to wait in the busy concourse at Wimbledon station, while I went outside to check something. When I came back, after just two minutes, she was no longer there and I had to search to find her. She had been confused and was anxiously looking for me. I realised I couldn’t leave her on her own anywhere outside the home.
The following week Jonathan was visiting and we decided to go out to a restaurant in Tooting. I waited for Shoko and Jonathan at our station, just seven minutes’ walk from the house. From there we would go together to Tooting. I meant to tell Jonathan not to let her out of his sight for a moment, but I didn’t. A few minutes later he met me at the station – alone. A bus had arrived as they were walking past the bus stop, and Shoko had jumped on, saying she would get down at the next stop. But she didn’t.
Where had she gone? Had she gone on to the restaurant (which would mean changing buses at Wimbledon)? We drove around looking for her, then went home, in case she would phone us there. We waited an hour, and had just phoned the police when amazingly she turned up. She had gone all the way to the restaurant and been puzzled not to find us there. Somehow she had managed to get the right bus to bring her back home.
I was very tense and stressed, but of course Shoko had no idea why. Jonathan thought I was cross with her. ‘It wasn’t her fault,’ he kept saying. I wasn’t cross with her, but with myself, for allowing this to happen. But it would have been hard for an observer to tell the difference. And I was also frustrated – and angry – that our situation had come to this.
Later Jonathan told me how sad he had felt, seeing his mother’s loss of capacity and my inability to handle it well. He felt powerless and frustrated too.
Our life was changing, and not for the better, it seemed.
In 2013-14 we had travelled a lot, visiting Sarah and Jonathan and also going to India and Japan, where we enjoyed time with family and friends. However, it became harder and harder to leave the house. Shoko was worried that it wouldn’t be safe. She also found it increasingly difficult to plan what to take and to pack her things. Setting out on a journey became more and more stressful, for both of us.
So in 2015 we only went away once, for a few days. The following year we made short visits to Tokyo and Barcelona. Shoko felt very unwilling to travel, but agreed to do what I suggested. Both times, as soon as we arrived, she was unsettled and wanted to go home. ‘We can get a bus from here or go by the Underground,’ she said. We all tried to explain why that wasn’t possible, but she wasn’t listening. With great difficulty we persuaded her to stay for a bit, and eventually she settled and we had good times with the family. But both times we had to change our flights and come home early. It was only later that I understood that she had thought she was still in London, and of course preferred to go home for the night.
After these two experiences I realised that we wouldn’t be travelling anywhere again. It was another door closing on us.
I tried to go out and do things together on alternate days, but as 2016 went on I found that the pattern didn’t work. I needed to be available any time, whenever Shoko felt like going out or doing something different.
In September we went to my cousin Janet’s birthday party. Our extended family, who had not seen Shoko for a year or more, were shocked at how different she was. She greeted them all with her lovely smile but didn’t really recognise them. But she went to the kitchen to help, as she had always done. Knowing how Shoko loved to help, Janet gave her a dish to take through. Shoko reached the kitchen door and then stopped. ‘What did you ask me to do?’ she said. Janet explained once more and the same thing happened again.
As I talked to another cousin there, I told him that I was still able to go out and leave Shoko at home, where she was contented and I had no worries about her being there on her own. He was relieved to hear it. ‘You would find it very difficult otherwise,’ he said.
But in fact it was around this time that I realised how much things had changed. Shoko was no longer able to initiate her own activities or plan what she would do each day. She couldn’t finish things on her own. She stopped playing the piano. She was often confused about what was happening or who was in the house. When the family came to stay at Christmas, as usual, she was puzzled to see them in the kitchen or dining room.
In short, she was no longer able to manage daily life. She needed me to be with her, and was very dependent on me.
Suddenly Alzheimer’s had begun to bite.