Living with Alzheimer's: A Love Story

When Robin's wife, Shoko, was diagnosed with Alzheimer's, nearly eight years ago, they had no clue about what lay ahead.

 A few years later, when the disease actually took over their lives, they learned the hard way about discouragement, relentless pressure, personality change and loss of her capacity in so many areas of life. Shoko died 18 months ago, from heart failure. And Robin has written a book, Living with Alzheimer's: A Love Story to document all that happened, and the lessons he learnt, with the intention of raising the question that concerns increasing numbers of people, and should bother everyone: "How do we respond?".

I provide, below (with Robin's permission!) an excerpt from the text of his talk given in Cambridge, UK, yesterday in the Food For Thought Café series.

"What kept us going were the love and practical help of family and friends, the support of the carers who visited us, and the backup of health and social care professionals.

So we were very grateful.

How did it start?

In March 2011, some of you will remember a huge tsunami struck Japan. We watched in horror. We were due to fly to Japan ten days later. (Shoko was Japanese, and we were going to visit family and friends).

Everybody there told us not to go. Fortunately, we were able to cancel our flights and other bookings.

But something else happened then which – looking back – may have been the first clue about what was coming: our own tsunami wave.

We had planned to have our home rewired while we were away. It would be very messy, so we needed to leave the house. We arranged to visit our son and family and began to pack things away as much as possible.

Shoko didn’t seem interested and couldn’t help much. ‘How did you manage to do it all?’ she asked me afterwards.

It was quite out of character but I put it down to our advancing age and thought no more about it.

But by the time we were able to go to Japan, in October that year, I could see that something had happened. Shoko had lost her ‘edge’. Once we were there, I needed to prompt her to make contacts with family and friends. And she had begun to repeat questions and comments, forgetting what she had just said.

Her sister noticed it at once and was concerned.

We needed to find out what was happening to her.

When we got home we consulted our GP, who referred us to the consultant at the Memory Clinic. A very nice doctor came to give Shoko various tests.

She could handle the mental exercises well but she couldn’t remember the names of the Queen or the Prime Minister.

‘It looks like Alzheimer’s disease,’ the doctor said.

And that was confirmed a few weeks later (January 2012) by a scan and further tests.

Alzheimer’s. What did that mean? We were not quite sure. In fact, we knew very little.

My father had developed it twenty-five years earlier. The family got used to his regular repetitive questions and it was difficult to have a ‘normal’ conversation with him. But he seemed able to manage his life and was always gracious and courteous. So we just accepted it, though we did feel an increasing sense of loss. Three years later my father died of heart failure, before his Alzheimer’s had progressed much further. We knew very little about his actual disease.

At that time awareness generally was low. There must have been literature and resources available, but we didn’t know about them.

So when Shoko received her diagnosis we had no real idea what lay ahead.

The scan said there was ‘minimal diffuse atrophy’ in the brain.

We didn’t know what all that meant, but we clung to the word ‘minimal’ and hoped for the best.

Our doctor explained that the scan indicated Alzheimer’s disease, the most common form of dementia, and not vascular dementia, the second most common. (More about that and related matters later).

We learned that ‘dementia’ was the umbrella term for this range of mental disorders.

We didn’t like the name ‘dementia’: it had negative connotations - and stigma as a result.

Most agree that it isn’t the best word – but so far nobody has come up with a better one.

The consultant explained that there was no cure and no way of reversing the effects. But he suggested one of the drug treatments that could slow down the symptoms. Shoko started Aricept (Donepezil) but she found it gave her side effects – vivid dreams at night and tension in the daytime.

I hasten to add: many people take Aricept with very good results; this was just our experience.

So she stopped and we looked instead for herbal remedies. We found curcumin, based on the spice turmeric (we called it haldi in India), and Shoko began taking the tablets regularly. We hoped this would contain the symptoms.

Our doctor was sympathetic to this but pointed out that the progress of the disease was inevitable.

Shoko had some realisation about it all, but possibly less than expected, because of some other medication she had been taking. She didn’t seem troubled by her diagnosis (as far as I could tell).

But we definitely had some feeling of stigma – we didn’t want to talk about it to outsiders.

Our GP suggested, ‘Say you have some memory loss – people will understand.’ But actually they didn’t.

We continued in hope and carried on with the curcumin tablets.

In the first year after Shoko’s diagnosis, life carried on much as normal. She could still manage day-to-day activities – looking after the house, cooking, sewing, writing letters, cycling here and there.

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 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.’ 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.

I was now working part-time, from home, so my hours were flexible. We tried to take alternate days when we would do things together, travelling in London, going shopping or visiting museums and galleries.

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 was being 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 wanted to call the police.

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.

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 connect all this with Alzheimer’s, because I thought that was primarily about memory loss.

So I was just irritated. And in fact I was really troubled by what was happening.

Over the next four years there was a steady progression of losing things, one by one.

Not from our house, but from our lives.

There were new limits that kept on appearing:

- We reduced our travel

- When we went out I had to make sure I kept my eyes on Shoko, or she could easily get lost (we had some adventures…)

- She began to find cooking more difficult – for example measuring to make a cake or a pie.

- she loved using her sewing machine But one day she looked at it and couldn’t work out how to set it up. She didn’t use it again

- It was difficult to plan the meal when guests came. I took over that function

But I was still able to go out and she was quite happy to be at home.

Then, at the end of 2016, things changed again.

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 couldn’t manage her daily life. She needed me to be with her, and she was very dependent on me.

Now I couldn’t go out and leave her on her own.

Soon she began to have difficulty going to bed and settling to sleep.

Suddenly Alzheimer's had begun to bite.

We had really entered its shadowy, twilight world, where nothing is quite what it seems and everything is unpredictable, both for the person with the disease and for those around them.

It was the unpredictability that I found most difficult:

·      How will we occupy this day?

·      Will she eat her lunch/supper?

·      Will she be willing to go out, or will she resist?

·      When we get home will she be confused and not want to go in?

·      If somebody comes to the house will she recognise them and engage with them?

·      Will she recognise me?

·      At night will she go to bed and sleep?

·      Will I be able to sleep…?

Our children, who were now both living abroad, noticed the change when they came to visit.

And as we grappled with our situation, we found ourselves asking, ‘Is this the same person? What has happened to her?’

About this time, friends lent us three books that were a revelation to us:

John Zeisel's, I'm Still Here, London: Piatkus, 2011

John Dunlop, Finding Grace in the Face of Dementia, Wheaton, IL: Crossway, 2017

Sally Magnussson's Where Memories Go, London: Two Roads, 2014

These books explained very simply and clearly what dementia was and how we could respond. Let me share a little of that with you.

What we learned about Dementia:

Dementia is an umbrella term for diseases of the brain

The World Health Organization (WHO) has a definition that includes several aspects, which combine in different ways:

“Dementia is a syndrome – usually of a chronic or progressive nature – in which there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement … commonly accompanied … by deterioration in emotional control, social behaviour, or motivation.”[1]

Mild Cognitive Impairment (MCI) is used to describe a condition in which there is memory loss, but no other signs of dementia. In some cases, MCI leads on to dementia.

The following indicates the relative prevalence of different types of dementia

                                                                                    %

Alzheimer's                                                             60

Vascular                                                                    15

Mixed A & V                                                             10

Lewy body                                                                4

Frontotemporal                                                      2

Parkinson’s related                                                2

and there are of course several other varieties of dementia.

Here are some further statistics for the UK:

In 2015: 850,000 people were suffering from dementia

7% of those over 65 are affected.

Demention is *not* a natural part of ageing – even though it is connected with age.

By 2025, it is projected that over 1 million will suffer some form of dementia.

And by 2051, it will be over 2 million

(the rate of increase is slowing, so the percentage risk seems to be decreasing - but no one knows why)

Worryingly, there is 5% young onset dementia: there are remarkable examples of persons living with Alzheimer’s but still able to speak and write about their experiences. They give us huge insight and are changing the way we perceive dementia (but they are not typical).

What is the cause of dementia?

In 1906 Dr Alois Alzheimer examined the brain of a patient who had died after suffering loss of memory and other symptoms of dementia. He found that many nerve cells had died, causing the brain to shrink. There were clumps of particles that had built up between the cells. And in the middle of the cells were further tangles of an unknown material.

Since then these three features have been recognised as the causes of what became known as Alzheimer's disease:

- a build up of protein called amyloid that forms plaques between the neurons. These destroy the brain’s ability to create memories by blocking the connections or electrical signals between neurons

- as the plaques increase they cause the growth of tangles called ‘tau’ (tubulin-associated units) inside the neurons that disrupt the internal movement of neurotransmitters and nutrients

- the result is the death of the neurons and the resultant loss of the brain’s different functions

Amyloid plaques, tau tangles and neuron death: these are the facts that can be observed in the Alzheimer's brain.

But what causes them and how can they be treated? That is much more difficult. Scientists are still trying to answer those questions.

The obvious targets are the proteins that form the amyloid plaques and tau tangles. There are ways of reducing their build up. But so far this has not resulted in significant reversal of memory loss or other symptoms.

The amyloid must have triggered other factors which continue to affect the brain. Or was excess amyloid itself triggered by other things?

Another clue is acetylcholene, a major neurotransmitter. Alzheimer's patients are found to have a loss of acetylcholene. Does this cause memory loss? Is there a way to restore it and could that lead to a cure? The four drugs approved to treat Alzheimer's work (in different ways) on this basis. They can delay symptoms for a period of 6 months to 3 years. But that is all.

Recent advances in genetics have identified possible genetic factors.

More recently still, scientists have been looking at diet, exercise and other lifestyle factors.

In Pursuit of Memory by Joseph Jebelli provides an account of all the research that has been done - though it doesn't by itself offer a huge amount of hope, at least it indicates the different lines of enquiry that have been pursued.

Alzheimer's disease – and the other forms of dementia – are not as simple as was once believed. There are many forms – 30 to 100 at least, depending on how one classifies them – and therefore many causes and many avenues of research for possible cures.

It’s not just memory, as we have seen.

Different parts of the brain are affected and affect many aspects of how we function

·       Cognitive – memory, losing things, storing things in odd places to keep them safe.

·      Emotional – becoming anxious about small things, being suspicious or paranoid, getting impatient, for example about waiting in line.

·      Functional – unable to plan, losing skills like sewing or cooking.[2]

If I had understood that sooner I might have responded better in caring for Shoko.

And the loss of social function is as significant as the loss of cognitive ability.

What we discovered about responding:  

This is the crucial question: how do we respond?

John Zeisel’s basic point was that the person with Alzheimer’s is still a person with whom we can relate, though it is a different relationship. It’s the same person, but it’s not the same person. We need to understand this change: we can’t go back to the old relationship.

But we can build a new relationship.

Alzheimer’s is a terminal illness, Zeisel explained.

We can’t cure it, but we can treat it, not necessarily with medicine, but by the way in which we relate and help to improve the quality of a person’s life.

The person is still there

She is the same but not the same

We can choose to have a continuing relationship.

These ideas came like a revelation to us. They fitted our experience exactly.

Our daughter wrote after one of her visits: ‘I felt sad that my mother isn’t as she used to be.’

We both wanted to go back to the old relationship. But we knew it wouldn’t happen.

But now we realised: we could choose to build a new relationship.

25 years ago Dr Tom Kitwood introduced the concept of person-centred care

He found that dementia doesn’t progress in a linear fashion, and it varies from person to person.

One of the most important factors in this is the quality of care and relationships. There is a need for high-quality interpersonal care that affirms personhood; one that implies recognition, respect, and trust. 

What do persons with dementia need? The answer begins with love at the centre, surrounded by five offshoots:

- Individuals need comfort or warmth to “remain in one piece” when they may feel as though they are falling apart.

 - they need to feel attachment when they so often feel as though they are in a strange place.

- they need to be included and involved both in care and in life.

- They need to be occupied and involved in past and current interests and sources of fulfilment and satisfaction.

- Finally, people with dementia need to have an identity and their caregivers must help maintain this identity (Kitwood, 1997).

All this means that our RELATIONSHIP IS VITAL

We had not read Kitwood.

But we did realise the fundamental importance of relationships, of love and affection.

What did that mean, in the shadowy, unpredictable world of Alzheimer's?

What if Shoko was confused, or unpredictable, or anxious?

What if she found it hard to recognise people? Or to recognise me?

That only happened a couple of times, I’m grateful to say.

One evening, she wasn’t very happy because she thought I was pressing her to go to bed. So she said to me crossly,

‘I’ll tell my husband as soon as he comes back.’

I was surprised! ‘I am your husband,’ I replied.

‘No, you’re not my husband,’ she said, rather scornfully.

I was dismayed and tried to persuade her that I really was.

‘I’m Robin, your husband. Look at me… look at my clothes… of course I’m your husband.’

She wasn’t convinced.

I didn’t know what to do. It was the moment I had been dreading.

‘So it has come to this,’ I thought. ‘She doesn’t know me any more.’

I stood there, thinking what I could say next to convince her.

Then I remembered the advice: “Don’t Disagree; instead Distract and Divert”.

So I went downstairs, opened the front door and rang the bell. I came in, shut the door loudly and said, ‘Hello darling, here I am.’

It worked.

‘Where have you been?’ she said. ‘I was looking for you.’

I was so relieved.

So maintaining relationships when things were confused could be difficult.

But that was just one side of the story.

The part of the brain that has an important effect on emotions is often not affected – (the amygdala, shaped like an almond).

Shoko’s affection was still there. We saw it in her relationship with children

- grandchildren when they came

- children at church or in the supermarket. She would see them and begin singing to them. They loved it.

I saw it in her affection to me. We had a carer who came on several afternoons, and I would go out to do other things, and get a break. When I came Shoko would often stretch out her arms: ‘I love you so much. I love you so much.’

Wonderful.

So loving relationships are the most important way in which we respond to, and treat, the person with dementia.

That raises another important question:

What support is there for the caregiver?

Caregivers need support, so that they can continue to love and care.

We got support. But it wasn’t joined up.

The first big division that we found was between Medical Care and Social Care.

Our doctor was very good at giving all the medical information. Really good. But when it came to practical matters of daily life, he said ‘go to the Alzheimer's Society’.

There was a gap between medical and social.

We know this is a huge issue for everybody today. Will our political leaders come together to deal with it?

Within social care there was also quite an array of helps.

There were different organisations offering

- Drop-in sessions

- Day care centres

- Singing groups

- People to come and visit

For us it was carers who came home who were the greatest help to us. It wasn’t easy to find the right person.

We had an amazing young lady called Yuna, who became such a friend and support to Shoko – and of course to me. (A whole story in itself).

But was there anybody to join it all up?

We were put in touch with the Community Dementia Nurse working alongside our local council. As a result, I got a call from Phil Parker, who then came to see us. Phil headed the Merton Dementia and End-of-Life care team in a new project, based not at a hospital but at the local council, aiming to bring together medical and social care.

Phil was the answer to our search.

He could give us a high level of professional medical care.

He was able to advise us, and our GP, about possible medication, when Shoko had difficulty with sleeping.

I could talk to him frankly about her prognosis and what might lie ahead.

He could link us to other services, like organising extra rails on the staircase through the occupational therapy team, or arranging a visit from the continence service.

Along with this he offered relational care. He was personal, interested in Shoko, talking to her directly and singing with her, as well as listening to whatever I had to say and the questions that I was asking.

He was accessible. An email or phone call would always get a reply and often a visit at home.

This was joined up medical and social care. Sadly, I know that this is not a provision that is available in most parts of the country

The other great source of support – apart from family – was our friends.

Friends are so important, both for the person living with dementia and for caregivers.

But friends don’t always find it easy. Sometimes friends would come and find Shoko so changed, perhaps not recognising them. Or even if she recognised them, not engaging very much with them that day.

If that is all that the friends saw, they might easily become discouraged and wonder if it is worthwhile to visit.

‘I found it very hard,’ said Shoko’s sister, who had come all the way from Japan. Shoko recognised her but conversation wasn’t easy. Their best time together was singing familiar Japanese songs, which Shoko could recall well.

Singing was always one of the best ways to relate with her.

 Friends need to remember that the person might be quite different on another day. Even if they aren’t, that’s what friends are for.

The visit could also be a great support to the caregiver

Also the visit would give pleasure to Shoko at the time. Even if the person forgot about it very soon afterwards, that feeling of pleasure would continue.

Visiting isn’t always possible. It might be a phone call, letter, email, video call – whatever works. A friend used to phone me regularly, just to ask how things were going. Others would email. Friends need to take the initiative and to keep going, even when visits may seem difficult. It is not a matter of technique, just friendliness and warmth.

A friend from India came to see us while he was in London. We had known him and his wife from the time that we got engaged in Madras, fifty years earlier. Shoko didn’t remember him now but realised he was somebody close to us and welcomed him, though at times she was disengaged. I was amazed at the intuitive way in which Ken related to her, talking to her warmly and directly, not at all put off when she didn’t respond.

Friends don’t forget. They don’t stay away. And they don’t give up.

__

[1] www.who.int/news-room/fact-sheets/detail/dementia (accessed 2nd October 2019).

[2] Simon Atkins, First Steps to Living With Dementia (Oxford: Lion Hudson, 2013), p 22; see also Wilton, Can I Tell You About Dementia?, p 17. Paraphrased.

Living With Alzheimer's: A Love Story is due out next month. It is available for pre-order on Amazon and Waterstones. Or you can contact @rasthomson for copies.