About a year ago, after many months of unsubtle guerilla tactics, we managed to persuade dad to get a carer in to help mum for a couple of hours a week. For anyone who is currently considering this and struggling to convince either the person with dementia or the spouse of the person with dementia that they may need a little extra help can I share two useful little bits of advice:
1 – A very nice lady we met from the Alzheimer’s society said that if she could have one thing tattooed across her forehead it would be “get carers in early” (or maybe it was “get help early” or maybe “do not wait for there to be a crisis before you get help in“). It obviously wasn’t all these phrases because she did not have a massive forehead. She helpfully outlined a scenario for us that illustrated her point by suggesting that we consider what would happen if we had not initiated care and dad became incapacitated in some way (an eventuality too terrifying to contemplate). She asked us to imagine how distressed mum would be to have a complete stranger turn up on her doorstep and demand that she accompany them to the bath (I don’t think she was suggesting that this is what most carers would actually do – I suspect they are a little more gentle in their approach). She persuaded us that there is absolutely no benefit in waiting until you really need outside help, it is then too late to introduce care slowly and respectfully. It’s a bit like being faced with a mille-long queue for the ladies loo at a concert or sporting event; start queuing with an empty bladder and by the time you reach the sanctuary of the portaloo you will be able to use the conveniences in a relaxed and unhurried manner. Wait until you actually need to go and then join the queue? That way madness, incontinence and cystitis lies. Pre-emptive steps my friends – that is the key.
2 – This one came from a consultant geriatrician colleague who suggested that a good way to introduce care is to establish the precedent of a new face about the house. This need not be a carer initially; a cleaner, a gardener or someone to pop in and do the ironing would be fine. It also need not be an expensive option – one of the very few benefits that mum gets (in fact the only one – I can’t remember the name but it’s not means tested and it’s for under 65’s) can be used for extra help in the home. Dad uses the princely sum of £40 per week to pay for our lovely new carer but he could equally have spent it on any of the people listed above. Indeed, initially he did try to pass the carer off as a cleaner to get mum used to the idea of a new person in the house (she’d always wanted a cleaner although in her past life I suspect that nobody would have come near to her very exacting standards of domestic hygiene). As with many of the issues we have faced over the past few years, we had assumed that mum would have difficulties adapting to the idea of a carer but in reality she was as unfazed as she had been about stopping driving. Witnessing a parent meekly accepting infringements on her liberty is not necessarily what one would wish for but it does make life a lot easier when the anticipated battle fails to materialise.
So – to summarise: get help before you need it and introduce it slowly and gently – do not feel bad about the use of deception – it is a means to an end.
Once we’d persuaded dad that we needed someone he looked into the options available. There were two private care organisations in their local area and the first (and cheaper) one blew their chance when they came round to assess mum and proceeded to ask her lots of questions about her dementia. This in itself would not have been too bad had dad not told mum that they were a home-cleaning company. Clearly there was fault on both sides; it is unfair to ask a professional to enter into the duplicity you have orchestrated and it would have been entirely inappropriate for the client manager to masquerade as an expert in domestic hygiene. However, dad felt that the situation could have been better managed and that was the end of carers company number one. This caused mild panic for me and my sister when we realised that there was only one option left and if dad didn’t like them we were stuck.
However, the second company came up trumps and a lovely carer was found. Let’s call her Alison (for that is her name). Alison, it became evident, made mum smile, shared funny anecdotes with her about her other part-time jobs which included acting in commercials and taking drama workshops. She was, according to dad, a great personality and mum soon became very fond of her. My sister and I wanted to meet her but because we tended to ‘cover’ dates and times when Alison couldn’t look after mum, our paths didn’t cross. Subconsciously I hoped that mum’s carer wouldn’t think badly of us. I wanted her to know that we were close by, that we saw mum very regularly and that even thought she may not have clapped eyes on us we were very much present and involved in mum’s care. This is a ridiculous notion really because of course it makes no odds what anyone thinks – we know we are doing all we can. But in reality nobody wants to be judged and found wanting and I have seen many examples at work where families completely abandon their more troublesome members. I will never forget learning about the concept of ‘Granny Dumping” during my first house job in hospital. Two or three days before Christmas little old ladies mysteriously arrive in the assessment unit supposedly ‘Not coping’ or what we euphemistically call ‘Off legs’. They inevitably end up being admitted, kept in for observation and discharged a few days later with most medication unchanged and no real treatment having been received. A senior but not especially jaded registrar informed me that this was ‘Granny dumping’ – families who didn’t want granny or granddad messing up their Christmas by weeing on the sofa or getting drunk on sherry and calling the daughter-in-law a tart simply ship them off to hospital for a few days with vague non-specific symptoms. It’s free and simple and it clearly happens frequently enough to have become a recognised phenomenon. Good old NHS can just help us out with this inconvenient festive problem and then we can get back to the rest of the year, ignoring granny in her residential home but not feeling guilty because it’s no longer Christmas. I digress.
So, lovely Alison had been visiting mum for almost a year, mentioned in dispatches but never actually observed, until two weeks ago when I actually met her! The plan was to drop mum off at home after a day at our house, Alison would arrive and sort out supper and get her settled in for the evening before dad returned from the rugby club. I was hoping to meet her alone and unencumbered by small children but due to a combination of events involving a puppy, a muddy quagmire and totally inappropriate clothing this was not to be. Instead the full grubby entourage was in situ to greet her and bless her, she was just wonderful. Garrulous, irreverent and as comfortable chatting with the kids as she was with mum. We heard about her quest to find a suitable swimsuit, her thoughts on personal grooming and depilatory treatments and her views on mum’s colouring book (very handy that mindfulness is all the rage at the moment, you can’t move in most stationers for adult colouring books – adult as in grown-up obviously, not porn). She also managed a few well targeted jokes at the children’s expense – which they loved. Back in the car a few moments later my youngest child asked if Alison could be her new mummy, or at least an extra mummy, high praise indeed and obviously not distressing in any way to have your child ask if you could be replaced with a relative stranger. My eldest had been a little perturbed to discover that the erratic scribbles in granny’s colouring book were actually her own artistic efforts and we had a short conversational update on the favourite theme of granny’s diminishing abilities – but in general, in spite of the mud and the dog and the fact that mum had spent the whole day with her shoes on the wrong feet I felt pretty good. Because although I may suffer the tiniest twinge of envy when I see mum’s face light up as her friend arrives, how lucky are we to have found a person who makes mum that happy, a person who does not get paid much and could probably get away with being surly and dour if they were that way inclined but instead chooses to share her sunshiny nature with those who most need a little joy in their lives. How utterly fantastic is it that people like that choose to become carers.
N.B. How hideous would it be now if having eulogised about how fabulous this woman is she then proceeds to rob my parents blind – sure it won’t happen – if it does then I am a terrible judge of character.