Following on from our initial catastrophic foray into day-care two unexpected and brilliant discoveries were made – one by me (coughs modestly into sleeve) and one by dad. Neither of these gems have resolved our essential problem (I haven’t suddenly found a cure for Alzheimer’s and decided to publish it here on an anonymous blog rather than in a hefty scientific journal) but they have added a little light to our daily shade.
Firstly (accompanying trumpet fanfare)…..
The link to ‘Mind for You holidays’ came through a Facebook post from Young Dementia UK who are one of THE MOST BRILLIANT AND AMAZING DEMENTIA CHARITIES IN THE WORLD!!! and who regularly send me (and all subscribers) useful information about events specifically aimed at young people with dementia (the clue is in the name). I had a quick nose around the Mind for You website and pinged off an email to dad who, in an uncharacteristic display of spontaneity, sent me a reply ten minutes later saying he’d booked a holiday with them! A few weeks later off they went for a five day trip to Norfolk. The holidays are designed for people with dementia and their carers. A small group (five people with dementia, their five holiday companions and three staff) exclusively commandeer a holiday home so there is none of the awkwardness associated with a large impersonal hotel where incontinence and shouting obscenities may be frowned upon (unless perhaps you are a rock star).
The aim is to allow carers a bit of time to themselves – on daily activities, such as visiting a National Trust property, carers are encouraged to wander off for a couple of hours, dawdle in the café or pop to the pub safe in the knowledge that their charge is safe, entertained and, most importantly, not anxious about their absence. As those with young children know well, however enjoyably an hour of me-time is spent it is poor recompense to return to an inconsolable toddler, particularly when reports confirm that he or she has spent the past hour wailing “But WHERE IS MY MUMMY???!!” and you sense immediately that you will not be forgiven. Ever. If however you are reasonably confident that your loved one is being appropriately cared for in your absence and is unlikely to be scarred for life by your brief foray into the local botanical gardens then you can fully appreciate the few moments of peace.
On this, their first ‘dementia friendly’ holiday my parents were, as always, significantly younger than the majority of the group, although one of the couples consisted of a mother and daughter which helped balance things up. The carers were a variety of ages and interacted with the guests in a natural, unforced way, whether they were the person with dementia or the carer – the priority was to ensure that every guest enjoyed their holiday. From dad’s description it seems they struck a perfect balance between being available and unobtrusive. There was none of the “ARE YOU ALRIGHT DEARIE?” and more of the “Do you fancy popping to Tescos with me to get the groceries for tonight’s meal?”
Dad struck up an unlikely friendship with an elderly gentleman who had a dementia of the angry, frustrated sort. This chap was clearly pissed off with his wife’s cheerful ministrations, having been used to a conventional marriage where he was the boss prior to the dementia taking hold. His frustration at having ‘the little woman’ help him dress, eat and get about was evident but he clearly identified dad as another alpha male who’s help and company he was prepared to accept. Dad took him to the pub one evening while mum stayed at the hotel with the carers and the other guests. Although swapping one person with dementia for a disgruntled other person with dementia may not seem a recipe for a perfect night out it seemed to suit everyone, including dad, quite well.
The holiday was such a success that they signed up for another trip with the same company to Scarborough a few weeks ago and this led into a weekend where we benefitted from the second unexpected treat of the summer; finding a respite service who offer 72 HOURS OF CARE IN YOUR OWN HOME FOR FREE!!!! I have documented the cost of care in previous posts and while money is not horribly tight for my family we need to ensure that we can cover care costs for mum potentially for another thirty years without going bankrupt. The lovely Alison (mum’s carer who visits a couple of times a week) remains a wonder and a delight but to pay her to stay with mum around the clock for a three day period would cost more than £1300. A week would cost around £3000 and given the fact that this would be the approximate value of a fortnight for two in a luxury Caribbean resort it seems an imprudent use of pension or savings. Thus we scrabble around to cover the odd weekend for dad with a combination of me, my sister, the lovely Alison and my aunt (on my dad’s side who is happy to come and look after her sister-in-law for a weekend just so her brother can get away – I mean, words fail me, the woman is a saint). Again I have bleated on about this in previous posts but basically it’s a bit of a faff to keep doing this and we really need something a little more robust in place – enter the amazing 72 hours of free cover provided through a charity paid by the council. It’s not exactly well publicised (or presumably it would be completely swamped) but dad stumbled across the existence of the service during a coffee morning for carers. This in itself was a significant departure for him (coffee morning for carers not having a much of a jaunty ring to it) but whilst mum was being crooned to by the hired entertainment (local pub singer) dad was chatting to a representative from the charity and came home in bemused disbelief with a contact number clutched in his hand.
And thus – Mavis came to visit – she assessed. She confirmed that mum was a suitable recipient of care and that the house was a suitable venue for their carers. She promised to return for the weekend of dad’s Bridge tournament and my sister and I were placed on standby in case it all fell apart. We were scheduled to ‘drop in’ at points over the weekend to check all was well and that there wasn’t a carer cowering in corner while mum staggered about the house swigging from a 2 litre bottle of Baileys and smashing furniture (unlikely but not impossible).
My sister was the first visitor on Saturday morning and she phoned me when she left saying ‘Everything was fine but Mavis is in fact Stephen….’ It turns out that Mavis had called in sick and in order to cover the 72 hours mum had a total of 5 different people coming in and out of the house. Interestingly, if we had known this from the start we may not have proceeded, deciding that it would be too stressful for her – but once more she surprised us and coped admirably with the comings and goings. Luckily the overnight carers were women (as an unfamiliar Polish chap getting her ready for bed may have been a bridge too far) and the lady I met on the Sunday (Jackie) had a nursing background. She told me that clients like mum were a lot easier to look after than those who were bed-bound and completely uncommunicative, clearly in that scenario one is counting down the hours until the shift ends. All of the carers had all written copious hand-over notes, even during the night shift documenting how many times they had popped in to check she was sleeping and although they may not have provided as much entertainment as Alison would have, they were at least there, keeping her safe, enabling her to stay in her own home while dad went away. The final proof of success was when dad returned home there were no recriminations. That really is as good as it gets – positive feedback from mum just doesn’t happen so an absence of negativity is the best sign and there wasn’t a single sulk, pout or tear.