Carers need more than hugs and chocolate

Jane McIntyre /   June 29, 2015 at 8:35 PM 1,342 views

She`d waited a long time for this weekend away; so it had to be right. Dinner B&B, twin room, sea view, parking on site–and shops within a stroll. After scouring the south coast from Deal to Dorset; we found a place that ticked all five boxes–and they were off: Phyllis–my dad`s partner– and for company, her cousin Mags. Apart from the odd day trip, this was Phyl`s first escape from the demands of looking after dad, whose dementia is really taking hold. Sometimes you can only understand the pressures on a single carer by `doing the math` to work out how you`d cover them. So–to replace one Phyllis for two and a half days, and two nights?  Five people: three professionals to deal with his `personal` care round the clock, plus, armed with copious amounts of chocolate: my sister and I . How did we feel? Anxious. A weekend `in charge` of our beloved dad, who`s spent a lifetime doting on us, guiding and protecting us–and is now frail, with Alzheimer`s. His health problems meant this would be a total reversal of roles. When you have a toddler, you note the development of each new motor, speech or social skill with pride. When you have a dad with dementia, you watch each one disappear, with sorrow. Before we arrived, we wondered, to be honest, if his increasing sleepiness would make our `job` easier. It`s true, there were `nodding off in the chair` times when we could get ahead with laundry or preparing food. There were `not really sure what to do` moments where we re-loaded with coffee, and chocolate, and more chocolate, `to keep us going`….and just about muddled through. But there were angry, befuddled moments too. He had a rant about, of all things, the political situation in Turkey –we just about kept up with that. But those flashes of anger surfaced several times when reminded, gently, that the carer had arrived to help with various, personal tasks. He responded on two occasions with a heartbreaking mix of confusion, hurt pride, incredulity that carers were even needed, and eventually, a complete, stubborn refusal to budge. That`s the short version of a couple of `scenes` that lasted about an hour each, and ended , inevitably, in tears. My sister and I had coped with all kinds of conflict at home and at work. We`d survived professional prima donnas, achingly long hours, crushed commuter trains and domestic toddler tantrums. We`d emerged unscathed from those `five minutes to get to work` mornings where your three year old`s in PJs, face smeared with raspberry jam; not budging from under the kitchen table. We`d faced, and defused dad`s wrath when, as teenagers, we`d try and sneak back home three hours late, hoping he hadn`t heard the click of the lock or the quiet swoosh of boyfriends` motorbikes being rolled silently down the road before being fired into life once clear of the house, round the corner. We`d convinced him that our two week teen breaks to Majorca and Rimini wouldn`t be a licence for moral turpitude. (They were). We`d discussed things. Negotiated. But now, his mind is addled; hard to reason with. You might think your points are persuasive, but they`ve sometimes been forgotten by the end of your sentence. There were bright times, too. He didn`t fancy our attempts to rekindle his talents for art, or piano playing. But a `quick coffee` out in the front garden melted into three or four hours soaking up the sun, watching village life, squinting at the frothy vapour trails from silver birds high in the blue skies above, wondering together where they were heading. More coffees, ice lollies, more chocolate, a hug from a neighbour who`d spotted us sitting together and dashed across the lawn to say hello. And, best of all, the moment Dad,  in the straw hat he`d chosen for his venture outside, beamed at both of us, proclaiming `this is the life !` Meanwhile, under the same sun in Bournemouth, Phyl was lapping up the sea view, strolling along the prom; hopping on a bus for a day trip to Swanage, relaxing in a hot bath without worrying what Dad was up to, and slipping into her new dress for dinner. She deserved that escape, and many more. For all she does, we consider Phyl to be one in a million, but in fact she`s one of six and a half million carers in this country. We survived our weekend with dad, through professional agencies, sisterly support, caffeine and chocolate. And we`ll be back. But real, regular carers face daily difficulties and challenges 24/7, with varying degrees of help. Carers` Week, on now, aims to highlight some of the problems they face, part of a vital, ongoing campaign to give them the benefits, the back up, and the breaks, they all need. http://www.carersuk.org Courtesy of Jane McIntyre at Once a journalist…

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