After Cheran's death in April 2020, I decided to set down these memories of her last three years for two reasons.  First, as a form of catharsis, to release some of my own emotions, and second, maybe to encourage others with a friend or family member who is living with the cruel effects of Alzheimer's disease - while appreciating, of course, that dementia takes many forms and develops in different ways, and that the progress of dear Cheran's illness will not be typical in every case.

Early symptoms

Cheran and I had some wonderfully happy times together in the early years of our marriage, and with our dear children when they were growing up.  We shared a large number of interests, such as walking, in both countryside and by the sea, photography, gardening, live theatre, family history and, of course, our Christian faith.  With her lovely smile and warm personality, Cheran gained many friends in the neighbourhood, at the school gates, at church and in the Shoreham community; many of them became friends for life.  She was loved by all who knew her.

Suddenly, in 1991, early signs of dementia crept into her life, mildly at first in the form of fantasies, obsessions and losing interest in former hobbies.  But, from 2014, it became more aggressive, in the shape of psychosis, delusions, suspicions and hostility, especially towards me.  In November 2014, after one severe psychotic episode, Cheran was persuaded to be admitted as an inpatient to a local mental health unit, where she stayed for four weeks and afterwards was visited regularly by a community mental health nurse.  But, despite additional symptoms such as becoming disorientated in the street, department stores and holiday hotels, she persistently denied that her problems were serious.  It was not until July 2017, following a brain scan, that we received the diagnosis of Alzheimer's disease.

Several times before that, I had written letters and tried to speak to doctors and other health workers about Cheran's deteriorating condition.  Each time, until just before the final diagnosis, I was told that, because of doctor/patient confidentiality, they could not discuss her condition with me without Cheran's express permission, and that was not forthcoming.  Fortunately, those of us who were close to her realised that the sometime hurtful words she spoke to us were not from the Cheran we knew and loved but were from the disease.

Before Drumconner

When we returned home after receiving the diagnosis in July 2017, Cheran 'opened up' to me for the first time in many years.  She accepted the diagnosis and told me she was not surprised by it.  I told her that I and our family loved her very much and would always be there for her; we would do everything we could to support her.  She then said that, when the time came that I could no longer care for her in her own home, she would like to move into Drumconner nursing home in Lancing, about which she had heard many good things.  From that time on, Cheran accepted me as her carer and was happy for me to do more and more for her as her condition worsened.

By the end of 2017, Cheran had begun to suffer from physical as well as mental difficulties.  She was increasingly unable to stand or walk, and she needed personal care both day and night.  She also began to become severely overweight.  After resisting for some time, she did finally agree to our buying a stairlift in May, a community alarm pendant in September and a hand-pushed wheelchair in October.  She began to accept that she was becoming confused over dates, names and words, and was having difficulty expressing herself verbally.  For Cheran, there was one last highlight in that, in October, she was able to attend the annual reunion of her former school's past pupils in Sittingbourne, Kent.  She greatly enjoyed herself that day, as all the ladies made a great fuss of her, in her wheelchair.  It was the last time I was able to take her out in the car for more than a few miles.

A new home

In the winter of 2017/8, Cheran fell out of bed three times, and I had to call for help from paramedics.  It became clear then that she needed full-time professional care.  She agreed that the time had come to move to her chosen nursing home; indeed, she became very excited when I suggested that to her.  And so, she was transferred to Drumconner at the end of January 2018. 

Her room was on the ground floor of the 60-bed home.  There were patio doors opening on to a paved area and a very large and beautiful garden, with lawn, paths and flowering shrubs.  The room was spacious, having a padded armchair, dressing table, fitted cupboards and drawers, a television, shelves and plenty of wall space for Cheran's photographs and calendars  Her air bed was fitted with an electric hoist and there was an ensuite room with shower, toilet, commode and wash basin.

From the time of her admission to Drumconner, Cheran's demeanour changed dramatically.  Apart from one or two throw-away early comments such as 'when am I going home?' which were easily answered with gentle reassurances, she quickly accepted that this was her new home and that she had chosen to live there.  Although there were isolated instances of resistance and, rarely, aggression, Cheran was generally compliant, friendly and loving.  The delusions became fewer and the suspicions, psychosis and hostility towards me disappeared completely.  She was more like the person we had known all those years before.

Generally, I visited Cheran for a couple of hours every afternoon, allowing the staff time in the morning to administer personal care, dress her and hoist her into either her own wheelchair or the comfortable armchair in her roon.  Often, I found her in one of the lounges, just resting, watching television or taking part in an activity.  But, each time I or anyone she knew came into the room, she would welcome us with literally open arms and a broad smile that showed that she remembered us and was delighted to see us.  Almost every time, she would have her favourite doll, 'Chez', with her in her chair or in bed:  'Ooh, she's lovely', she would say.  Despite her communication difficulties, Cheran appeared to understand things we were telling her, and she often tried hard to tell us things, even though her words were often unintelligible.  In the early days, she would frequently mumble memories of school, college, university and how she obtained her first job ahead of several men who were interviewed at the same time.

Activities

I took in a CD player because Cheran loved to listen to music, especially Karl Jenkins compositions and the voices of Michael Crawford, Hayley Westenra and her childhood heartthrob, Pat Boone.  She had favourite songs that never failed to bring an emotional response.  Tears would come whenever she heard 'If I loved you', 'You'll never walk alone' (she once played the lead in 'Carousel', or songs from 'Phantom of the Opera'.  She would beat time to music and often imagined herself conducting the orchestra.  When our daughter bought her a DVD player, Cheran loved to see programmes about steam railways, and would often imitate their sounds.  She also enjoyed vintage comedies like 'Keeping up Appearances', 'Hi-de-Hi' and 'Some Mothers do 'ave 'em', which frequently caused her to laugh out loud.  During her first year in Drumconner, she was eager to use colouring books, but in her last year, she was unable to colour the pictures and lost interest in the books.

As a committed Christian, Cheran was keen to take part in the monthly holy communion services led by a lay worker from the parish church.  Although she found it difficult to say the words of the liturgy, as each service ended, she would always make the sign of the cross.  When able to join in the home's general activities, Cheran enjoyed listening to visiting entertainers.  She sometimes took part in keep fit, carpet bowls, darts and memory games in the lounges, and smiled her way through two garden parties in the spacious grounds.  On one occasion she participated enthusiastically in a silent disco, wearing headphones and sunglasses and 'playing' a blow-up guitar.  She also specially enjoyed one hilarious occasion in the garden, when carers and residents together tried their hand at potting plants.

While at Drumconner, Cheran had a few severe seizures, causing her doctor to prescribe an anti-epileptic drug that may have added to her increasing drowsiness.  These never seemed to distress her, but usually she fell into a deep sleep afterwards.  Normally, when she had trouble remembering things or speaking, she tended to make light of it and chuckle.  Problems like this never seemed to distress her during her last two years.  Cheran enjoyed most of her meals, of which fish and chips was her favourite.  She also loved afternoon treats, suh a chocolate marzipan, ice cream and cakes from the tea trolley.

The highlight of Cheran's time at Drumconner was the celebration of our Golden wedding anniversary in June 2019.  The staff of Drumconner came together to give both of us a delicious, surprise lunch for two on the patio outside Cheran's room, on a beautiful summer's day.  They put up displays of photographs from our life together, and there were visits by many members of staff and a huge bouquet of flowers and commemorative balloon, presented by the home's owner.  Afterwards, back in Cheran's room, the chef brought in a specially baked celebration cake.  Cheran repeated asked '50 years?', as the meaning of the occasion sank in, and she smiled from beginning to end.  It was great to see her so happy.

During the winter of 2019/20, Cheran became more 'jumpy' and 'twitchy' when being given personal care in the mornings.  Whenever this happened, and the carers feared another seizure, they decided she should stay in bed to rest.  Nevertheless, I was able to tell family and friends at Christmas that, although Cheran was becoming more and more drowsy, she remained generally comfortable and content in the home.  Sometimes she would sleep nearly the whole time I was with her but, when awake, usually she was happy just to listen to favourite music, hold my hand and say that she loved me.  She became less interested in DVDs and was content with just her music or certain mindless afternoon TV programmes.  Every day I still looked forward to my visits as, I believe, Cheran did, too, often greeting me with a welcome such as , 'Ahh, it's the lovely man!'  For the second year, we enjoyed a wonderful meal together on Christmas Day, with other residents in the dining room.  However, she spoke very little during her final six months.  Generally, she just mumbled incoherently, but sometimes took us completely by surprise by exclaiming loudly and clearly, remarks such as 'I like your shoes' to our visiting daughter, and 'He's not Colin, he's Col!' to a carer unfamiliar with how Cheran always referred to me.

Coronavirus

Early in 2020, Coronavirus began to spread across the world, and its effects started to be felt in our own part of southern England.  On 14 March I arrived at Drumconner to find that visits to residents were no longer allowed.  A few days later, I left Mothering Sunday gifts and cards at the front door.  A nurse took them to Cheran and I was able to walk into the garden to see Cheran through her windows.  When she saw me, she waved and blew kisses.  Although it is impossible to know for certain the mind of a dementia patient, I believe that the ensuing month must have been very distressing for someone like Cheran, being denied visits from people she loved to see, and seeing nurses and carers come into her room clad in plastic gowns, gloves and face masks.  Drumconner kindly did arrnge for Cheran and I to meet via Skype once a week so, for two weeks, I could speak to her and see that lovely smile again, by means of technology.  But, the third time, on 8 April, she was fast asleep and the carers were unable to wake her.

On 14 April, Drumconner phoned me to say that Cheran was very poorly indeed, and the doctor had been called because she was no longer taking food or drink.  They assured me that she was not showing the widely publicised symptoms of Covid-19 such as fever, coughing or shortness of breath.  Two days later, Cheran's doctor told me that her oxygen levels were very low, but agreed with me that to be taken into hospital would severely distress her.  Drumconner nurses then invited me, with our daughter, Su, to come in and sit for a while with Cheran in her room, with appropriate Covid protection.  We did so on 17 April, when we found her in a very deep sleep, her life clearly slipping away peacefully.  We came away realising that this might be the last time we would see her alive.  I contacted Drumconner later and suggested that they play some of her favourite music on the CD player, and this was done until her life passed away at 6.20pm on 24 April.  Sadly, the actual end came too quickly for me to be called, and I was unable to hold her hand and speak to her as she passed away.  I was told that she had died very peacefully, still with no evidence of those widely known Covid symptoms.

Later, I had a conversation with Cheran's doctor because, after discussion with colleagues and the Coroner, she had certified 'Suspected Covid' as one of two causes of death, along with 'Alzheimer's dementia'.  The doctor told me that there was some evidence of blood clotting in Cheran's toes, which was a feature now being linked to Covid-19.  Sometime afterwards, I learned that low oxygen levels was also a sign of Covid-19.  However, the doctor agreed that the absence of personal family visits and the scary procedures necessary in the home during lockdown may well have been factors leading to Cheran's refusal to take nutrition and 'give up'.

Peace

I remain very thankful that our dear Cheran passed from us in the home that she had chosen, and amongst people who had loved and cared for her for more than two years.  And I am comforted by the belief that she was aware how much she was loved by everyone who knew her.  I am thankful, too, that it was a peaceful passing, with no outward sign of pain, anxiety or distress.  All her life, Cheran had believed that, when this life is over, she would move on to a new life of joy and peace, and I am convinced that now, free of all of this world's diseases, she lives for ever in the presence of our beloved Saviour, the Lord Jesus Christ.