And today’s C word is not COVID, or Cancer, or the obvious and oft misrepresented Old English word. Today’s C word is Care-home (so perhaps it’s two words? Less catchy click-bait though).
The day is about to arrive. Care Home Day. We knew it was on the cards and to those who say, ‘I’d never put my mother in a home‘ I would say, ‘With all due respect, you are a clueless, deluded fool,’ (because, as everybody knows, if you use the phrase ‘with all due respect‘ it instantly alerts the person on the receiving end to the fact that you are about to insult them). This has not been an easy decision for our family, and it is not one we have undertaken lightly. Knowing it’s the right thing to do doesn’t necessarily make it straightforward – there are complicated emotions involved, not least, guilt – and outsiders having an opinion on the rights and wrongs of a decision without understanding these complexities can do one, quite frankly.
A friend whose parent had early onset dementia told us many years ago that it was only a matter of time before residential care became the safest and best option for Mum; the clinical specialist nurse (the only specialist we have seen during the entire process) said that Mum’s rate of deterioration would likely necessitate a care home placement by the age of sixty-five. Well, Mum is now the grand old age of seventy-one and my father has lived with her and her dementia for more than twelve years. For the last quarter of his marriage Dad has watched the woman he loves make a slow and incremental decline, losing verbal communication, mobility, and continence – her loss of function directly proportional to the increase in her care needs. And there comes a point where most people become too frail, unsteady, or distressed to be safely cared for by just one other person, even if that person happens to be a devoted spouse.
If you cannot feed, wash or toilet yourself, if you cannot physically get out of bed without assistance, then you need help – and you probably need that help for sixteen hours a day – at least. There is no employment law that would recommend a 112 hour working week as being safe. As an aside, there have been times in the past where junior doctors have been forced to work these kind of hours until the European Working Time Directive came in and reduced them to marginally safer levels, and then Brexit ensured that those protective measures were removed once again. Good work, British voters – congratulations on Taking Back Control! Anyway, even if the occasional 112 hour working week was admissible, to do this for every single week of the year for twelve years without annual leave, sick leave or time off for good behaviour – is preposterous. It’s not safe for the carer and it’s not safe for the person being cared for.
My biggest fear over the past two years has not been, ‘what if Mum catches COVID‘ – it has been, ‘what if Dad catches COVID.’ So, we can add that to the, ‘what if Dad breaks his leg, what if Dad has a heart attack, what if Dad becomes depressed and suicidal,‘ list of horrors. As it happens, Dad did get COVID, but he was triple vaccinated and Mum was thankfully in respite care for the weekend so the only thing that was scuppered was his three day holiday in Devon. But the point is that my father has become defined by his role as carer. Our concerns for his own individual safety and wellbeing are inextricably linked to the practical issues raised by him not being able to fulfil his caring duties. In this way (as in many other ways) the label Carer is not dissimilar to the label Parent, except that most people voluntarily sign up for the latter.
Basically, we have reached the point where Mum needs two people to transfer her safely and she needs someone to keep an eye on her for the majority of the day. She is also starting to suffer from some of the further indignities that dementia can throw at a person; urinary infections are now a monthly treat as well as a couple of epileptic fits requiring assessment in hospital, which has been as fun as you’d imagine. It’s fair to say that we have reached the end of our capabilities in terms of safely caring for her and it is difficult to see how she benefits from being at home. She doesn’t recognise us, she doesn’t recognise Dad, she is ambivalent about her surroundings and shows no signs of distress or pleasure irrespective of geography. There was a time where we felt that it was kinder for Mum to be somewhere familiar, surrounded by the faces of people she loved. But she no longer seems able to differentiate the faces and voices of close family from those of complete strangers. Perhaps we have reached a point where nothing is familiar to her, a point where home is both nowhere and everywhere. Either way, the benefits of staying are now outweighed by the risks. And so we once again start looking at our options.
We know she will be self-funding and we have not used the state for any element of Mum’s care to date. Even the incontinence pads which we could get for free, have been dutifully purchased by Dad during his supermarket trips. Despite being virtually bedbound Mum is still not medically unwell enough to warrant nursing care and the NHS budget that goes with it. She needs ‘looking after’ rather than ‘treatment’ – and being looked after is pretty bloody expensive. The average cost of residential care in our neck of the woods is over £900 per week. I’m just going to let that sit with you for a while as you ‘do the math’ (as our American chums say).
Forty-five thousand pounds a year – more than the cost of the seemingly obligatory Eton education of any future Prime Minister, and more than the net household income of a family where two adults are employed full-time in well paid jobs. And these prices are almost certainly set to rise. The cost of living increase affects those on the margins of society the most; the old, the frail, the vulnerable, the disabled, as well as those who are fit and well but work in low-paid jobs, like carers. I don’t for one minute begrudge care home staff the cost of the care they provide, nor care home owners – the ones I’ve seen both professionally and as the daughter of a potential customer aren’t turning over a large profit and many are being forced into closure due to unsustainable financial pressures. Care costs money and good care costs a lot of money – although it doesn’t necessarily follow that the most expensive home is the best one. A lot of the time you are paying additional pounds for the hotel services; the appearance of the rooms, the catering and the grounds (and some homes charge double the figure that I’ve stated purely to cover these add-ons). We have tried various establishments over the past few years, mainly for respite – a weekend here, a week there – and we have used different care agencies for in-house care. We have no horror stories to share – every person involved in Mum’s care has been an absolute delight, particularly during the pandemic when my parents went for days without seeing anyone other than the home care team.
So, if you’ve weighed up the pros and cons and come to the sad but inevitable conclusion that now is the time to look at permanent residential care, and you’re not necessarily going to use price as a marker (assuming that it’s all going to cost an absolute fortune), and you’ve had no bad experiences of local facilities, then how do you decide which is the best ‘forever home’ (an unfortunate but particularly apt phrase in this case) for your loved one? What criteria should you use? What things should you be looking for?
Fear not. For I shall tell you in my next post how we came to discover…
THE BEST CARE HOME IN THE WORLD!!!*
* (and once I’ve told you about the criteria for choosing a home then I’ll also tell you how to cope with the crippling anxiety and waves of guilt that assail you during the small hours of the night when you contemplate the realities of the situation – I can’t tell you about these strategies just yet because I haven’t quite worked them out myself)
mumhasdementia.com 
Well done, Nancy and family. It is a hard decision, but (as you say) it is the right one. The only people I know who have managed to keep a severely demented parent at home had a full-time live-in carer and the incredibly fortune of another carer as a loving and devoted next door neighbour who was always on call. Even they had a care home Plan B (rather wonderfully known in that family as “Operation Pants Down”). I will look forward to your next post with interest. There are a few pointers, based on our experience below, but I might have a few more to contribute to your list of criteria/questions to ask. And, on a subject I feel passionately about, readers just make sure the care home has a copy of any Lasting Power of Attorney (Health and Welfare) so that, on the odd occasion the home has to call 999, the ambulance crew will talk to you and you can, if necessary, stop your loved one being taken to hospital. [NB: Nancy, there is a potential post in this subject – once in care home, if a hospital transfer proves necessary, how do you get your loved one out of hospital again as fast as safely possible.]
My mother, who died in June last year, spent her final two and a half years in a care home. Prior to that, she lived in her own home with latterly two full-time live-in carers, when she became too challenging for one. We’d had a Plan B for some years, but when we came to activate it, it turned out that the lovely care home in question didn’t take “difficult” dementia-sufferers. So we had to find somewhere else. We looked at two care homes, one of which wasn’t going to be open in time. The other would have been our choice anyway and it was a very good choice. I was able to see Mum (and the other residents on her floor, several of whom i became very fond of) throughout lockdown because the care home ran a volunteer programme and, although nothing is ever perfect, the care was caring and very good indeed and everything else was of a decent/high standard. Nancy is right about the cost, in fact my mother paid a good deal more (not double, but close). She did receive full attendance allowance, which is not means tested but the DWP process is detailed and slow, and she’d had several years of council tax exemption (a little known benefit), including a refund of £11,000 for backdated exemption.
Before Mum went into the care home, the arrangements had become fragile and were at risk of breaking down. I did get the call at 2am, when the carer said your mother has just come into my room and hit me, please come now. I did have to organise cover care when the carer had her breaks, for which we used an agency for around two years. Once Mum was in the care home, someone else was responsible, though I was notified of serious issues (only a handful – far fewer than when she was at home). This was an enormous relief and quickly overcame any guilt I might otherwise have felt about the elaborate arrangements we used to get her into the care home.
Mum made new friends (other residents and staff) in the care home, which were clearly important to her. I had electronic access whenever I chose to her care home records, which was surprisingly comforting. We could see that generally she had considerable continuity in her carers, as well as what they were doing. It was generally easy to speak to the nurse in charge of the dementia unit on the phone and the home also has a Facebook page. There are some cracking photos of Mum on it and an incredibly touching short video of one of her fellow residents on the unit reading “Peter and the Wolf” to her.
The home manager is key, the person in charge of the dementia unit is key. The expected standard of care and the number of carers to deliver it are critical. Take hotel standard promises with a pinch of salt and don’t complain too much if they are not met, provided your loved one is getting very good or excellent care. Comfort, going with the flow that works for the demented person (within reason) and a clean bottom are honestly more important than surroundings maintained to hotel standards and Michelin standard food (if the sandwich is going to be torn up to go in the soup because that is how the demented person will eat it, so be it – this upset my chef sister a lot). We chose somewhere with nursing care as well, in case things deteriorated to the point where she needed to be transferred within the home, although I can only think of one person who made such a transfer during the time Mum was there. The care home was brilliant as she approached the end of life and kept us very well-informed and her comfortable. One of my sisters and I were able to be with her throughout her final hours.
If you are looking for a care home now, please be aware that the sector is under enormous strain and short staffing is widespread because they are losing staff to slightly better paid jobs in hospitality, retail etc. Normally well-staffed homes may well have large numbers of vacancies.
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Thank you so much Annabel, many useful points here and several of the things you mention come up in the next post (not least the rate of hospital admissions and how well prepared staff are for EoL care – both areas of special interest to me at work). I’m really glad to hear that your mum was happy and well cared for in her home and that you were able to see her during the pandemic. And I totally agree about your final point – the care sector is at breaking point and more people should be made aware of this fact.
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