Every morning I wake to the sometimes interesting but frequently worrying Today program on Radio 4. I feel it is a good start to the day, to have a general awareness of what's what. Dementia, care homes and an over-burdened NHS are all regulars which particularly interest me. That is because I care for my Granddad, who has suffered with dementia for a little while now.
After feeling the top of the microwave he shuffles back through to the living room. "How does the oven cook if it's not hot?" I try to keep things simple. "It's a microwave, it doesn't need to be on yet," which is clearly not a satisfactory answer for him. "How is it that the oven isn't hot?" he asks, and I'm not really sure what he wants; reassurance that everything is under control? Admittedly microwaves are magical things, but I have resolved to keep things simple. "It's a microwave, it doesn't need to be on yet."
I'm part of a team. Me, Mum, Sue the cleaner (hired 20 years ago and now absolutely indispensible), Sarah, who ‘helps out' while she looks for a job, a selection of pill-givers from a local care agency who pass by when no one else can, and my brother's dog Clive of course - essential to everyone's sanity. Mum first noticed Granddad's forgetfulness almost a year ago: he would tell her funny things and ring her incessantly. It wasn't even dementia at this stage, just Granddad. Granddad being lonely, or forgetful, or anxious or dare I say it demanding.
"That's curious, I thought cookery required heat. When will it be ready?" Granddad doesn't trust me. He thinks I'm going to forget to feed him. "12 o'clock" I reply. Annoyed at my simple answers, and exasperated by a mixture of worry and confusion he waves me away "you're speaking a foreign language. I want that dinner HOT. If that dinner is hot and on the table at 12 o'clock I will believe in miracles." Then he sits back and gazes angrily, trying to catch a lone thought flitting through his mind like a butterfly.
At first he could manage on his own with an array of ready meals in the freezer and a garden to tend, but his forgetfulness soon turned to confusion. Mum and Sue slipped into a routine of visiting daily and exchanging updates in a little notebook, kept on a high shelf in the kitchen
Sat 20 Feb. Dad phoned 8.45am he wondered if it was day or night and would I come over. Day and yes. He asked if I knew where he lived. Arrived - all seemed in order - table laid - oven on at 50 - but he wanted to know what to do next all the time. He helped cut up the veg. But needed to be shown how to cut them. T popped in about the drains. Dad didn't seem to recognise him. Gave Dad a shopping bill yesterday and he did remember that, and the amount he owed me. Dad is using the tea towel to wipe his false teeth so will put a clean one out each day.
At this stage we all felt that even the best care home in the world would be ‘the beginning of the end' removing any anchor points he had in his already bewildering world. Apart from that, he was ok really: good days and bad days, sometimes convincing us all that there was nothing wrong at all.
Wed 14 April. Dr came this morning and gave Dad a ‘verbal' test. He did really well!!! Slight memory loss but Dad able to answer most of the questions and chat away. She's arranging for a hearing test. Are we imagining it??!!??
Mon 19 April. Had a call to say Dad had left the gas on - he was a bit panicky when I arrived because the curtain had come down in the hall and kitchen window was open (to get rid of the gas smell!) - but he's had lunch and all well now, will be back later this pm.
So that's when I agreed to work from Granddad's instead of work from home. Why not? I have a portable job, laptop, mobile and internet, so I moved in to do the 10 ‘til 4 shift, and that's when I realised the lengths Mum had gone to, to keep Granddad safe and happy. He had lists, lists of what to do and when, to ease his constant worries. Everything was labelled, marmalade with its ‘breakfast' label, jam with ‘tea', toaster with its ‘no butter!' sticker, ‘Today is Monday' on a card in the kitchen. ‘Bedtime pills' in a little glass, and Granddad, with his hunched little walk, shuffling about.
Caring for a relative with dementia is hard work. Especially hard if you're a daughter. I can see in Mum the emotions she confronts daily, the sadness, the frustration, guilt and worry. Suddenly, at 64 she is caring again for a demanding toddler. Except the toddler is her father and he's never going to get better. Her nurturing will never be rewarded, but it's her responsibility to do what's best.
"Would I be right in saying it's being belted by microwaves?" he asks suddenly. Where did that come from, I wonder. Which store cupboard did he get that bit of physics from. "Yes," I say. Then he's pleased with himself and confirms "not heat" and I wonder if I should have told him that to start with. "Yes," I say. Simple is best. "If it's so clever, why does it take so bloody long!" I don't think he requires an answer. Not my foreign answers anyway. Ten minutes later, I put his dinner in front of him. He touches the hot edge of the plate, and tries to hide his amazement. Living with dementia is hard but rewarding. I go upstairs to do some work with a sense of satisfaction. I am a miracle worker.
What can you do to reduce the risk of dementia?
A panel of independent experts, chaired by the Alzheimer's Society recently evaluated more than 70 research papers and articles and concluded that plenty of exercise and reducing cholesterol stand you in good stead for a dementia-free retirement. Good news, but interestingly they failed to compile enough evidence, as yet, to suggest that ‘brain training' will protect against dementia, and the jury's still out on vitamin supplements too. Being seriously overweight is a risk factor and all agreed that high blood pressure is linked to dementia. Some evidence suggests that following a Mediterranean diet and being socially active can reduce your chances but heavy drinking increases the likelihood.
Where to get help.
The Alzheimer's Society have some great local services, check out www.alzheimers.org.uk for information and useful downloadable factsheets.
The Sussex Partnership NHS Foundation Trust estimates that there are 25,000 people in Sussex who are affected by dementia, an estimated one in 12 of all elderly people in Sussex. The Trust has a range of on-going innovative service and research projects on dementia - these include rolling out dementia care mapping and running singing classes as a therapy. Visit www.sussexpartnership.nhs.uk.
Guild Care charity in Worthing also offer fantastic services for dementia sufferers see www.guildcare.org
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