My experience of Alzheimer’s Disease

My diagnosis was all Anne’s fault! It wasn’t true. I’d misheard. Yes, that was it! I wore hearing aids and had misheard. I’d ask the psychiatrist again. “What did my MRI brain scan show?”

He replied slowly, carefully and gently. “You’ve got Alzheimer’s Disease.” He immediately prescribed the Alzheimer medication which may delay the symptoms from progressing for some time, if started early enough.

I looked at Anne with shock and dismay. We’d come to this medical appointment with different expectations. I was convinced that everything was fine and that the brain scan would confirm this. Anne had long suspected that I was developing dementia. She had noticed subtle personality changes, not evident to people other than close family members. After nearly 50 years of marriage she was quick to realise that something was not quite right. So, illogically, it had to be her fault. Why had she persisted in encouraging me to see a psychiatrist, have cognitive and psychometric tests, and a brain scan? Now I knew why, and was furious. Couldn’t I have been left alone without having such a terrible diagnosis hanging over the rest of my life. I was grateful later on for prompt treatment has meant that  am now better than I would otherwise have been.

My anger seemed to be looking for a person to land on. “It’s not God’s fault so I can’t blame him!” I decided in the car, going home. Anne said nothing for a while, knowing how upset we both were. “But you are angry is it with me?” “Of course not!” I shouted. “Why should I be angry with you?”  But I was. Who else’s fault could it possibly be?

That night I woke at 3.00 am. My mind was more focussed. Yes, it was God’s fault, it had to be. I gave him a piece of my mind. “Why have you done this to me? You let me serve you in Thailand as a missionary surgeon, you gave me Anne, and gave us children, grandchildren and friends. This is crazy! Why won’t you give me more time with Anne? Is this my reward for trying to love and obey you – the advance warning of a future grey lifeless existence?”

I wanted to share my diagnosis with selected others. Anne encouraged me to go at my own pace. Relatives varied in their response: all were sorry, some cried, but most tried either to mitigate or to argue against my having Alzheimer’s. Denial was very evident. “There’s been a mistake, the diagnosis could be wrong. You sound so normal over the phone no one would guess.” “You’ll stay as you are for ages longer.” I had not anticipated the shock it might be for them, or the sense of impending loss they might be facing. I had wanted their comfort and support and had not expected them to need my help in facing my illness.

A few close friends were obviously sad, eyes filled with tears, pausing a long time before saying anything. Some hugged me silently, holding me. I wished I could hold on to them for ever.

We decided to share my diagnosis with four close friends with whom we share a meal each month. They would know how to support and help us. But their shocked denial of the situation led one to argue strongly again the diagnosis, stating that she too forgot things, and a brain scan might reveal that she too had Alzheimer’s, and brain scans could be wrong. A second agreed with her. Instead of deriving strength and comfort from them, we found that we had to prove that something was wrong with me. Anne left the room in tears. Just one of them listened thoughtfully, sensitive to what lay behind my words and saying few, but appropriately supportive, words.

Afterwards, we found ourselves dismayed at what seemed to be a totally useless response from close friends of many years standing. We later realised that they could not bear the thought of losing the John they had known for so long.

Sometimes sharing my diagnosis with others proved a complete conversation-stopper with brush-off responses like, “ My memory’s getting worse like yours – we’re all getting old!” , “My friend’s mother had Alzheimer’s!” and “Oh dear!” followed by an embarrassed brief silence and a change of topic of conversation.

In contrast, my Vicar and Area Bishop listened to me with empathy, offering me a future listening ear and their future help in any way in I might want it. That meant a great deal.

Those in my church who were frail, elderly or disabled listened with understanding and love. As I was a Reader, my vicar (at my request) told the congregation about my diagnosis and many told me how grateful they were that I had been so open about it. It removed some of the stigma attached to the dreaded ‘D’ word – dementia.

The local Alzheimer’s Society support group met in the Community Centre attached to our church. We called it: ‘Little Grey Cells.’  Six of us, facilitated by a couple of Alzheimer Society workers, shared personal experiences, supported one another and became friends.

We learned that our brain cells died more rapidly than those of others (meaning that our minds grew older faster), of the tissue tangles in our brains causing slowing of nerve transmission, and of the plaques that blocked nerve transmission. All this led to loss of memory, confusion, and other features of dementia. We learned that modern medication, like mine, slowed the rate at which acetylcholine is destroyed in the brain, allowing a few extra microseconds in which memories and orientation can be retained before they disappear again.

I was invited to share my personal story with a church group for elderly people. They knew me and wanted to hear what had to say. Afterwards someone commented “We’re so grateful you’re willing to talk about this. We’re all worried and frightened about Dementia and your words make it less fearful.”

After my diagnosis, I experienced a fresh urgency in relating to my Creator. God seemed nearer than before, as though he were trying to say something to which I wouldn’t listen. In between struggling to listen quietly, I still found myself hurling complaints at God and insisting on answers. I was terrified. God had told me not to be fearful, but I was still afraid. I had the impression that God was inviting me to unpack my fear and to understand it more fully. I realised that there were three areas which particularly scared me.

I was afraid of losing my identity – the essential me. When my mind became confused and my emotions blurred would I still be ‘me’? Would other people recognise me as the man they had known? I found myself phoning and writing to old friends and long-lost relatives, wanting them to remember me as I was then, rather than how I might be in the unknown future. I worked writing my autobiography with fresh enthusiasm, determined to leave as accurate a story as I could for my grandchildren, rather than a confused ramble. Responses were good. A dozen friends and family read each chapter as it was produced and comments were surprisingly warm and favourable. The exercise of putting words down on the computer helped my brain, especially when I searched for more accurate words, deleted useless words and sentences, and expressed myself as clearly as I could.

Then I was also afraid that I would be ignored, marginalised or spoken about as though I only half existed? My capacity to relate well to others has always been limited, although I have swum upstream all my life trying to be sociable. Many people do not realise that this is difficult for me. What if I couldn’t manage to go on doing this and sunk into my solitary but satisfying default position, and became a passive lonely person who no one could be bothered to get to know? When I couldn’t make the effort to connect with other would they leave me alone?

I was also afraid that I would lose contact with God? This seemed, of all things, the most terrible. What if I reached out and found I could no longer touch him? It was important for me, in prayer, to articulate all of this to God and to explain why I was frightened and fed-up.

It is three years since the diagnosis was made. In that time I have become less resentful and more reflective. I am one of the ‘lucky ones’ who was started early on the right medications and whose rate of deterioration is slower than that of some others. But the eventual outcome will be the same.

I enjoy a sense that my faculties are sharper, which makes reflective thought easier, though with the obvious loss of memory which impairs vocabulary. However, Anne notices that I now may miss what is going on around me and don’t always get the point or significance of what others are talking about. Someone may say something, I understand the words, but don’t realise possible consequences of their words. My awareness of space is not as it used to be. Although I was stopped from driving because my psychiatrist reckoned my decision-making capacity was too slow to make me safe on the road, I was scraping the car since I found it difficult to gauge where the car was relation to other objects. Being banned from driving was a blow. For 54 years, driving has given me great pleasure. I am sometimes annoyed with myself because I have slowed down and it takes me much longer to do things than in the past.

I realise that living the full life I had expected in old age, may no longer be possible. This gives me a greater sense of urgency in trying to complete those things that are of most importance to me. I suspect my left brain may be damaged more than the right because I find myself I wanting to write in poetic rather than prose mode. This makes parts of my autobiography a better expression of how I really feel, even though I don’t write poetry.

I try to be aware of others and of the anxiety and stress for the primary carer of a person with Alzheimer’s. I try to think about Anne’s situation. What does it mean to her to face a future of caring for someone with Dementia? I can’t possibly understand completely but I’m trying my hardest to.

I am discovering that Alzheimer’s disease is a useful tool for me to use in understanding life and death. Because the disease accelerates the death of brain cells, it foretells our own death. Each morning I embrace another day and want it to have meaning, love and friendship. But, at the same time, I am becoming more interested in embracing eternal day when I shall at last ‘know, even as I am known.’

A supportive church can be a wonderful gift to the carer. At its best a church can be a group of people who are secure in knowing that God loves them, who understand the issues of growing old and enfeebled – and who put their arms round carer and cared-for.  We hope that a day like today will contribute to heightening all our awareness of what it is like to be old and to be handicapped by Dementia.

John Townsend FRCS

February 9th 2012