Living every day to the full, in shadow of Alzheimer’s

ANTHONY and Jackie Garrood are looking forward to taking a ride on the Settle-Carlisle Railway this week. They’re also planning holidays for later in the year, and discuss them while out on daily walks close to their home near Huddersfield. The retired Huddersfield University lecturer and his retired high school English teacher wife lead a full and active life – seeing friends, going to the theatre, travelling. These days they take care to stop and admire the little things – like clumps of snowdrops, the trees preparing themselves for spring and even the clouds.

“We’ve learned to appreciate all the things that make the day lovely,” says Jackie. “None of us knows how long we’ve got, so you really should make the most of it.” This couple probably always did make the most of life, but recent times have taught them to value it even more.

Four years ago, 60-year-old Anthony spent ten days helping out with lambing at his daughter and son-in-law’s farm in the North-East. Rather than the usual hectic weekend visit, Anthony had a lot more time alone with his daughter Penny, who’s a paediatrician. She saw something different about her dad.

Things he would normally have no trouble with at all, such as measuring the quantities of feed for the animals, seemed to confuse him. Anthony, a biochemist by training who went on to teach Environmental Science for 32 years, is by nature very particular about detail, and precise in his use of words. Penny was alarmed to realise that her articulate father was at times grasping around for the right word. She noted, too, that he appeared to be less physically balanced then usual.

Unknown to her father, Penny rang Jackie and suggested that she should get Anthony seen by the doctor. Jackie was shocked, but then rang the GP.

“The doctor suggested I got Anthony to go and see him. I felt disloyal and found it very difficult to tell him, but you just have to say it, gently. He was a bit surprised, but quickly reassured me that I had done the right thing.” Jackie says it was hard, at that stage, to disentangle what was possibly just part the ageing process and what could be something else. Anthony had left his university job a couple of years before and moved into research work, but his contract had ended after a year. Out of 120 job applications, he had only three interviews. Not yet ready to retire, Anthony had become depressed.

“I was rather down in the dumps,” says Anthony, who just occasionally is noticeably lost for a word. “I just decided to be up-front about it all from the start. It was a blow, but it’s important to try and get over the shock quickly. You either stick your head in the sand or tackle it head-on.” Anthony and Jackie went to the doctor together, and he asked the usual battery of questions used to do the initial screening for dementia. He was sent for more investigations to the local Memory Clinic. After around three months of tests including an MRI scan, Anthony was diagnosed with early-onset Alzheimer’s Disease, the most common form of dementia.

“I was all geared up for a fight if he didn’t get the drugs he needed, as I’d heard about cases where people could not get them because of the expense,” says Jackie. But in Anthony’s case there was no problem. He was prescribed Aricept, which is often effective in slowing down the symptoms in the early stages of dementia. “We decided we were going to be as positive as possible, even though the whole thing was an incredible shock for the whole family, especially for Sam, the youngest of our four children, who was then 15.”

After a few months, Anthony’s medication was changed to Reminyl, as Aricept appeared to be causing agitation and aggression. Things have gone more smoothly on the second drug, but looking back Anthony wonders if the anger was simply that he felt at the time that he had a lot to feel angry about. “There is, of course, the issue of ‘why me?’ and the realisation that no-one can give you a straight answer about the prognosis. The doctors were circumspect about my future, saying each person is different and the disease advances differently in each one. It can go at a steady pace over 20 years before you die, or progress much more rapidly. It’s the great unknown. But at the beginning, especially, you are desperate for answers they can’t give you.

“It is very scary, but after the first few months I decided to do as much as I could to make the most of whatever time I am given. You have to adapt and carry on. I’d always been a cyclist, but a few months after the diagnosis I took on the first of five cycling challenges, cycling in the mountains of Peru to Macchu Picchu, raising funds for Macmillan. The next challenge was in Cuba, then a long bike trek through China, a London-Paris fundraiser for Alzheimer’s research and Pennine challenge. In all, I raised £12,000 for charity and I’m proud of that. These days I’m more of a fairweather cyclist, but in the coming weeks I’ll be out again.”

Anthony says having a close, loving and supportive family has given him great strength. He has also found solace and comfort in Quakerism, and he and Jackie have joined a local Alzheimer’s support group. But there are still difficult, emotional moments. “You think after a while that you’ve got it all taped, you’re doing fine, then something gets underneath your skin and you’re in puddles. With me it’s started off when I hear beautiful music. We all deal with it in different ways. I feel it’s cruel to have got this illness at 60, but we’ve met people who are only in their early 50s.”

Anthony and Jackie are very open in discussing how his illness has progressed in four years. “I know my memory is vulnerable. I have to say to people I know well ‘I’m really sorry, I know I know you but please remind me of your name.’ And my balance has deteriorated a bit. Although I still drive okay, I can’t plan long routes the way I used to, and I know that a day will come when I have to stop.” Reading isn’t as easy as it was, and spatial awareness has become more of an issue than it was at the beginning. “I feel the world is coming in on me, sort of narrowing, and being in the noise of a crowded place like a pub is difficult because distracting peripheral noises mean I can’t follow conversation easily. My reactions are also slower.”

The Garroods went to Australia in November, and trips to France and Italy are planned. “You just have to keep on going,” says Jackie. “We can still go everywhere we want, but instead of independent travel it’s easier to go with a tour company. Friends have been great; there’s just been the odd one who doesn’t know how to deal with it.”

The Government has launched a campaign to increase the early diagnosis of dementia. Across this region there are estimated to be around 63,000 with it, but only around 36,000 (40 per cent) have been formally diagnosed. The rest are missing out on treatment and support to help them to live their lives as well as possible.

“People are afraid of dementia, and rather than face the possibility that someone they love has the condition, they wrongly put memory problems down to ‘senior moments’,” says Care Services Minister Paul Burstow.

“If you are worried, the sooner you discuss it and help the person to seek support the better. Being diagnosed won’t make the condition worse, but leaving it untreated will. We can’t cure dementia, but we can help you keep the person you love for longer.”

Anthony Garrood would agree. “Be gentle but up-front with your loved one. Encourage them to go for the tests. It might be dementia, or something else that can be treated and cured.”

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