Jackie and Derek
Derek and Jackie met in Singapore in April 1963. Derek was a Navigator in the New Zealand Airforce and Jackie, whose father was attached to the British RAF, was out there with her parents and had a job in the Officer’s Club. They got married in Singapore Cathedral in 1965. For a few years they moved around a lot, returning to New Zealand for six months and then being transferred to the UK. In 1968 they went back to Singapore and their first daughter Karen was born there in 1969. They returned to the UK again in 1971, where they settled down and their second daughter Alison was born.
Derek’s first symptoms appeared in 1996, but it would take another 11 years before he would receive the correct diagnosis. They had installed a home computer for Derek to work on, but on using it for the first time he struggled to understand it and spent too long achieving very little. The idea had been to make things easier and quicker, but after this initial failure Derek decided to see his GP, who diagnosed depression.
Over the next year the Post Office they ran together no longer made a profit and they were eventually forced to sell up. Their financial problems continued and towards the end of 1997 they very sadly had to sell their Oxfordshire home where they had lived for the past ten years. From January to June 1998, Jackie and Derek lived in a caravan in Crewkerne, in Somerset, while they looked for a property to buy. Derek began to feel physically unwell and after moving in to their new home he went to see a new GP who diagnosed IBS (Irritable Bowel Syndrome). Jackie, not satisfied with this outcome, took him back to the doctors. Derek was suddenly diagnosed with bowel cancer and was told that he only had two years to live. He had a major operation and was left with just 6” of bowel. A week after surgery Derek’s stomach swelled up and he had to have an emergency operation during which an Ileostomy bag was fitted. This was followed by six months of Chemotherapy, a reversible operation to lose the bag and then a long period of recovery. By this stage Derek only weighed nine and a half stone.
This all happened over the course of a year coming so soon after moving to a new county where they knew no-one. Jackie was all alone with no friends close by to support her and they still both knew that Derek’s memory was failing him.
Jackie nursed Derek back to health and when he had recovered enough she drove them down to the South of France for a holiday. Upon their return they began to seek help for Derek’s memory weaknesses. They went back to their GP, who referred Derek to a neurologist, where he was asked to undertake a series of tasks. Derek performed brilliantly at some and exceedingly badly at
others, so didn’t fit any particular diagnosis. In fact, the consultant implied that it was all psychological and that Derek was deliberately being difficult. At home Jackie would ask him to do some chores for her but he always failed to complete them, and even if she wrote them down, Derek would put the piece of paper down and forget where he had put it. It was increasingly difficult to live like that, having no help or support, which eventually led to a crisis in their marriage.
Derek really wanted to move back to Oxfordshire. and so in early 2003 they moved to a new home in North Leigh, near Witney. Jackie didn’t give up on Derek. Between 2003 and 2007 they saw a number of different consultants at the JR, the Radcliffe Infirmary and the Warneford hospitals. Whenever they met a new consultant Jackie would always ask if Derek’s memory problems could be connected to a bang on the head he had received in 1973, while away in Cyprus with the RAF, as she had noticed a difference in him when he had returned home. No one listened to her! On one visit to the JR they agreed to be filmed. Derek was asked a set of questions, but all he could do was to look at Jackie for the answers. Dementia at this time was still considered to be a condition of old age and because Derek was still in his fifties it was completely ruled out, leading to constant mis-diagnosis.
Out of the blue in 2007 they received a referral letter to go and see another doctor, who said she would organise a “Peak Scan”. After another six month wait, Derek finally had the scan and they were given the news that he had Alzheimer’s which could have be associated with a bang on the head.
Going forward Jackie and Derek attended memory clinics and a chap called Simon from Young Dementia UK would come and take Derek out. Life continued, but not without a few ups and downs along the way.
Jackie remembers a trip to Sainsbury’s . She left Derek with the trolley with strict instructions not to move, while she looked for a card. When she turned round he was gone. She rushed outside to the car park in a panic, but he wasn’t at or near the car. She turned and walked back towards the entrance of the supermarket and suddenly there he was pushing the trolly towards her which was still full of unpaid groceries.
Derek liked to walk a lot and was trusted to follow the same route each time which generally took about an hour. It was a lovely December afternoon, the sun was shining in a clear blue sky. Derek was taking longer than usual to complete his walk, so Jackie decided to jump in the car and go and look for him. He wasn’t where he should have been or anywhere near by. Jackie went home and told her neighbours that she was worried about
him and so they came out and helped her look. A few hours went by and it began to get dark. One neighbour who lived opposite said that her sister-in-law worked for the police and that they might be able to help. The police soon arrived at the front door and said that they had had a call and that they thought they had probably found Derek. He had walked much further than normal and had ended up on a farm, where the owner had seen him but couldn’t immediately help as Derek could not remember where he lived. She managed to keep him there, having called the police in the meantime, who arrived to take him home.
However, Derek still had a great need to walk which of course is a very familiar trait of Alzheimers, so Jackie purchased a tracking device which Derek wore around his neck. It was connected to a helpline and Jackie could also monitor his progress on her TV screen. It was set up so that Derek could walk within a mile’s radius and if he went out of area, Jackie would also receive a phone call.
Looking after Derek was a 24 hour job and it took its toll on Jackie. Now and again a carer from an agency would come and look after Derek so that she could get away and visit her daughters for a weekend.
Jackie knew of Vale House when it was still in Botley, in Oxford. In October 2013 her daughter Alison accompanied her on a visit to the new building in Sandford and they were so impressed that they completed and returned an application. Tricia made a home visit to assess Derek’s needs and said she could offer respite care.
In July 2014 Derek came to Vale House for two weeks of respite care and never returned home. Jackie was exhausted. She had looked after Derek for so long that she didn’t know what to do with herself. She contacted her social worker who told her it was OK not to be able to cope any longer. A month later her 99 year old mum died and two weeks after her funeral Jackie had her 70th birthday.
Initially Jackie found it very hard to let go, it had been a very long and difficult journey and looking after Derek full time, had been her life for the past 18 years. She sought help from Jen Courtney, Vale House’s full-time Social Worker, who supported her through the early stages of Derek moving from home to Vale House.
Jackie belongs to the University of the 3rd Age and helps out at an Oxfam bookshop. She is involved with the new Dementia Café at Vale House and enjoys Line Dancing and Pilates. On a good day, when Jackie arrives at Vale House, Derek’s face will light up and he will gesture kiss kiss. She no longer feels guilty or worries about him because he is so well looked after.