DEMENTIA: A PERSONAL HISTORY: The Activity Trail
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Quite the best thing in my experience you can do for someone living with dementia is spend time with them. Even if they’re difficult or completely uncommunicative.Being left alone with the confusion which increases with frightening force is the biggest challenge they face. I am convinced that the more time you can spend with them, the slower their cognitive powers deteriorate. I was struck by the speed of decline in my own father after his stroke when, with great reluctance, we felt that he needed to be admitted to a care home. I don’t believe it was just the stroke that was to blame. The isolation from the last links of familiarity and living as part of either a couple or family set the seal on his state of mind.
My father was a brave man who had faced numerous daunting difficulties in his life and conquered them. So, the look in his eyes when the dementia was blocking the connections in his mind told me how scared he was by the condition. However, he never gave way to panic or anger. He just calmly, though persistently, asked why it should be that he couldn’t remember what he was supposed to be doing (this in the context of ‘helping’. He could remember that I was his daughter. That was enough of a starting point: I was touched by how he always seemed to feel that he ought to be doing things to help me in one way or another). When people say that dementia can exaggerate (as well as distort) a person’s personality, I would agree. I was lucky in that my dad was the kindest human being I have ever known. I realise that this is not the experience of every relative. Whilst accepting the fact that he was living with me in the here and now, the next question he wanted answered was where he was. I would tell him the town and he would reply that he knew that perfectly well. The subtext was of course, how he had got there? Crisis point was reached one day when I was unwise enough to have a lie-in until 8 o’clock on a Sunday morning. By the time I got downstairs, Dad, who slept on the ground floor, had called an ambulance, thinking that I must have had some terrible accident and, being unable, due to his broken hip, to climb the stairs to check on me, had gone into emergency mode given that it was so late in the day. The crunch came when he was asked for his address and, of course, he couldn’t answer. It was an action that had a logic shaped by his caring personality. He felt that he was still part of the family, with the responsibilities that went with that.
Whether or not the person with the condition lives with you, these are my recommendations for shared activities. You will, of course, note that most of them involve time together – the most precious thing you can gift to them. And keep communicating with them throughout. Just because they may not be responding to your stream of chatter, does not necessarily mean that it’s passing them by. Sometimes it was striking how Dad would repeat back a word or phrase of mine later which had struck him for one reason or another. The most obvious option for you, depending on the stage of the disease, and also what sort of a day they are having, is a day out. I would recommend that you start by planning this around having an easy exit. Perhaps a nice afternoon tea in a garden (sadly, tea gardens are increasingly rare) or open-air concert where your party can leave quickly and without fuss if need be.
It’s all much easier in the summer. My father very much enjoyed a walk along the seafront which I heartily recommend if you’re lucky enough live near one. There is, of course, something timeless about ice cream vans, beach shops, naughty dogs and excited children with everyone happy and a lovely sea view. The concept of time (as opposed to time of day) is the enemy of the person with dementia.
At other times of the year, Dad enjoyed going round the garden centre which just so happened to have a nice Christmas ‘grotto’. I well remember this festive expedition. It just happened to coincide with a good day, where he was almost completely normal. For that marvellous day, I got my dad back, chatting animatedly, speculating on cars, routes and plans for the future. What a lovely Christmas present that was.
Dad enjoyed a country show, particularly for its silver band. I also remember taking him to an air show which was good for one who had watched the Battle of Britain as a child, and he was thrilled by the appearance of a Hurricane and a Lancaster bomber. A major consideration to be aware of in the planning stage is of course, is the likelihood of loud noises which can be very upsetting. Sporting events should be treated warily, especially those where aggression is possible or likely. It could quickly turn into a nightmare.
Games are a godsend though a lack of co-ordination can be frustrating. Crazy or clock golf is my top suggestion. For indoors, the board games they played as a child can be a way of having a connection with younger family members. It can be surprising how well some dementia patients remember obscure rules! You can try jigsaws though these can be hard for many where spatial awareness is a major challenge. I have nothing but praise for chess too. My father was able to beat my son at it, right up until a very short time before his death.
Singing and how it can unlock people whose speech has gone has been well documented. One of the nicest memories I have of my time working as a care home hostess was during an afternoon visit where three generations of a family were part-singing a selection of the patient’s favourite songs and, yes, she was joining in with huge enjoyment. You might also try church if you have an understanding vicar. This will depend on how keen and regular a church goer the patient was in their younger days; the days which they are likeliest to remember.
Old hobbies are great for the early stages of the condition. Gardening and walking being two of the most beneficial. Without annoying them, try to encourage lots of arm movement. I got Dad to remember the sort of Swedish drill he’d leant as a young boy. Beware of the hazards of cooking and needlework, though component tasks like rolling out pastry, mixing, beating or perhaps icing a cake could be considered. I haven’t tried crochet but I guess it might work for some.
As a full-time carer, you will need downtime, even if it’s just a few precious minutes, and the television can be as good a friend to you as for the harried young mother needing the babysitter box in the corner, or screen on the wall these days. Like the mother, you don’t need to feel guilt and there will no question of jeopardizing their development. My advice is to beware of action films (even former favourites). These can be frightening as complicated plots or unobvious motivation is hard for a person with dementia to follow and violence can rock their equilibrium and/or wellbeing. My father enjoyed watching programmes involving gentle skills such as painting or antique restoration, travel shows, particularly about places he’d visited in years gone by. The Fred Dibnah steam train programmes were particularly enjoyed. That said, I’m painfully aware that in care homes, the tv is often on constantly and indiscriminately as something of a pacifier.
Reading matter too for former keen readers, may need some thought. Adult fiction, rather like TV drama, can be confusing. It brought my dad a lot of pleasure to read some of the children’s books he’d loved as a child and the later ones which he’d read to me. Simple magazine articles of things they enjoy may work, or perhaps a collection of well-known or well-remembered encyclopaedic facts – making everything concrete, not abstract. Presenting Dad with Arthur Mee’s Book of Everlasting Things was a great hit. Short extracts are good and may bring longer ones to their mind.
Dad missed out on the British animal-loving gene. He was indifferent to them. Perhaps that was why, when he first moved in with us, he was openly hostile to the dog. He viewed her as a bother to me, particularly as she demands long walks. But helping to care for an animal can have huge benefits, not least for the person him or herself. I believe it tunes in to their essential humanity. There are plenty of cuddly and/or robotic animals to be seen in the better care homes which can offer huge comfort.
Best by far, in my opinion, are encounters (regular if possible) with the family and the different generations within that family. I remember during the moderately early stages of Dad’s dementia, when I was unavoidably delayed getting home one evening and had to instruct my teenagers to look after him. When I – panicked – finally got in, I was relieved and astounded to find that, far from having had what they would term a ‘mare looking after him, my children’s grandfather had risen to the occasion and had sourced from the fridge and cooked a hearty supper of scrambled eggs on toast for everybody (without burning the toast as my children would have been quite likely to have done)! Talking about family members, and, if you can and have the time, putting together a memory book (or having one written) will be popular and keep them rooted in reality. Dad and I spent many hours poring over old family photograph albums and today’s technology makes it so much easier to create such memory books and reproduce them complete with appropriate photographs which, of course, you can edit along the way. It’s been a revelation, sharpening features and adjusting colour, exposure etc and putting them into scans. I learned a lot about the family which I didn’t previously know during these chats which, I think, boosted his confidence just as it stimulated long-term memory.
And as they progress, and things become more difficult? It’s still worth trying to help them revive old skills. My father retained his cadet corps boot polishing and Hamleys Export Department packing and packaging skills throughout his life.
Time spent in nature is golden time. Even if it’s a little chilly and they’re not terribly mobile, I would recommend even just a little time spent outdoors (well wrapped up) in all but the coldest or wettest weather. Sitting in the garden was a joy to my father and it was my pleasure to grow things which he could reach as well as colour and planting combinations which would delight his eye and sense of smell. The seasons and the time of day are of huge significance to those with dementia as it grants time and order to their uncertain and scary world. Who wouldn’t after all, draw delight from a winter bird table placed near a window?
In many ways, I feel, dementia cuts through the nonsense of our daily lives, leaving an appreciation of the things which really and truly do matter, not just to those with the disease but to all of us.