Category Archives: ageing

A Woman of Ninety

When I go into her living-room, the heat and the smell hit me simultaneously. The heat is from the small electric fire, which is always on, making the centre of the room a furnace, whilst icy blasts from the winter outside creep in at the edges, around windows and under the ill-fitting door to the unheated kitchen beyond. The smell is that of stale urine and faeces, radiating from her, almost palpable in the sudden fetid warmth of the air in the tiny room, strong enough to make one gasp and mouth-breathe involuntarily.

She sits in front of the fire, her body angled slightly towards the large television in the corner, its sleek lines and modern look entirely at odds with the net curtains, the threadbare carpet and the few pieces of 1950s furniture. The volume is turned high and she fixes her unseeing gaze on the flickering screen, her face registering no emotion whatsoever as a toothless man on The Jeremy Kyle Show is booed by the studio audience for leaving his wife for her younger, thinner sister and a punch-up ensues. There is one card on the mantelpiece, wishing her a happy 90th birthday, from the care agency engaged by the Council to deliver basic care to her. Her birthday was several months ago and this appears to be the only card she got.

She is wearing a long, summery skirt in mid-winter, with an old, food-stained, hand-knitted jumper and her feet, with long, yellow toenails and fissured heels, are bare, toasting in the heat of the fire. I see a new looking pair of fur-lined slippers in the corner of the room and bring them to her, trying to guide her feet into them. It is no good – on closer examination, her swollen lower legs and feet, so unexpected given her otherwise emaciated appearance, are of variegated hue and the purpled flesh bulges painfully over the sides of the slippers. She starts to get cross and I put them back in the corner.

A carer – a cheerful, breezy, strong-looking woman who comes every morning – lets herself in. I excuse myself and stand in the icy kitchen whilst the carer expertly hoists her charge to her feet and changes her incontinence pad. The carer then bustles briefly into the kitchen, emerging shortly afterwards with tray containing a bowl of microwaved porridge, a small sugar bowl and a cup of tea. The tray is balanced precariously on an upturned wastepaper basket in front of the old woman, the stained carpet at her feet bearing testament to the apparent inadequacy of this dining arrangement.   With shaking hand, she takes a heaped spoonful of sugar and sprinkles it liberally over the porridge, returning again and again to the sugar bowl, repeating the sweetening multiple times, until her breakfast is more sugar than oats.   Then she starts to eat, lifting the spoon to her mouth, a good deal of porridge soaking into the wool of her jumper as it drips from the spoon. Without attempting to help further, the carer announces brightly that she is finished and will call back at lunchtime. She has been there only twelve minutes.

I ask her if I can turn the television down, so that I can try to talk to her about something important. She does not answer me, so I do it anyway. I ask her if she will talk to me about whether she will accept more help and whether she would like to move to somewhere she can be taken care of. I tell her that it seems that she is sleeping on her couch (she has some blankets to one side which she may or may not pull over herself) and, with her last care call being tea time, is not changing her clothes, her incontinence pads or even her seating position through the night. The morning carer reports that she is always sitting in her usual position on the couch when she arrives, wearing the same clothes as the day before. She becomes upset and shouts that this is her house and no-one can force her out of it.

I come back to visit her again, and again, to see whether I am able to communicate with her and understand what she wants. She always sits in the same place, staring unblinkingly at whatever is showing on the television. Sometimes she smiles at me, sometimes she shouts from her own, private world which I cannot gain access to. She claims that she is climbing the stairs daily to air the bedrooms, that she is walking out to the local library with her father and that she is cooking good plain food for herself.

She has advanced dementia. She has no friends and no family. Apart from the scheduled care calls three times a day, and occasional professionals’ checks, she has no visitors. She is a million miles away from someone else who has recently had a 90th birthday.

I find the loneliness and vulnerability of her old age almost unbearable.

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Leaving Home

Pristinely presented, impeccably dressed

She receives me from next to her hospital bed,

Casts disparaging glances at fellow inmates,

With their gaping nighties and matted hair,

Still disgracefully abed, not up in their chairs,

‘I’m not like these women, I don’t belong here.

I want to go home’.

 

I tell her about professionals’ concerns

That she can’t manage alone, she shouldn’t go home.

There’s nothing wrong’ she repeated stoutly,

Except being terribly old – I’m well past ninety –

I forget some words, I’m very deaf

And I’ll be gone soon, I don’t have long left.

I want to go home’.

 

‘Can you make your own food, brew a cup of tea?’

I go out every day with my trolley on wheels,

Buy enough just for me, prepare my own meals’.

‘But they say you’ve lost weight, you’ve been wasting away,

Your cupboards were bare, your food was rotten,

That, perhaps, you had simply forgotten?’

 

I don’t remember that’.

 

‘Can you manage your money, pay your own bills?’

After my husband died, in ‘88…’

(My entire adult life, I swiftly calculate)

‘…I had to cope, I learned the drill’.

‘But they say you’ve been giving money away,

Five hundred a month to a ‘friend’ you don’t see,

And thousands more, unaccounted for…’

 

‘I don’t remember that’.

 

‘Can you manage at night, do you ever feel scared?’

I’m not fussed about that! I’m very strong,

I’ve managed alone for ever so long’.

But they say you bang on the neighbours’ doors,

Distressed, undressed, at all hours

And they ring the police to report on your plight,

Concerned for your safety, especially at night’.

‘I don’t remember that.’

 

But I remember my son, he was born in the house

And died there too, a terrible waste –

Just seventeen. And my husband’s gone,

I’ve outlived them all, there’s nobody left,

I don’t have long,

I’ll remember them there, I want to go home’.

 

 

 

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What Visiting Care Homes has Taught Me

I have spent a lot of time in the past few years visiting people in care homes – usually frail, elderly people, often with dementia and, in the main, those who lack any (suitable) friends or family who visit them. I sometimes come away saddened, sometimes uplifted, occasionally entertained but nearly always pretty emotional one way or another, so I wanted to spend some time reflecting on that and why it was making me feel the way I do.
I intended to write a piece, along the lines of ‘ten things I have learned from going to care homes…’ – the way people do – but it seemed too trite, too reductive, for something so complex and individual. Many people have their own view on care homes – particularly if they have had a relative in one – but there are some popular perceptions about residential care that you hear a lot, which I wanted to think about, such as:

‘Don’t let me end up in a place like that; shoot me first’
It’s true, I’ve yet to meet anyone who actively looks forward to going into residential care and there are certainly plenty of people who are not happy to be in a care home, as well as plenty who are pretty happy with their lot. However, a lot of people say this type of thing when they are fit, well, young(ish). What I have seen is that there is a hidden group of extremely vulnerable people whose only alternative to residential care may be living alone and who are really very lonely, with three or four brief calls a day from an ever-changing roll call of carers; people who may crave more companionship; people who cannot get out by themselves but whose care package, cut back to its very barest bones by cash-strapped local authorities, will only fund someone to come and defrost a frozen meal in the microwave and change their incontinence pad. In fifteen minutes flat.

‘It’s just God’s waiting room’
Well, yes, pretty much, I suppose it is. For the very frail, the very old, the incapacitated, the vulnerable, the abused, who are in residential care, there are certainly a depressing number of homes where the residents are stationed in a hot living room, arranged in a traditional semi-circle around a large, very loud TV most of the day, every day.
I have also seen some homes with more innovative ideas: for example, chests of drawers placed randomly in corridors, stuffed with scarves, necklaces, dolls and handbags, with hooks on nearby walls, to enable dementia sufferers with a compulsion to rearrange, to carry things around, to nurture, to have some sort of focus to their walking. Some also have chickens or dogs, for residents to stroke and feed or café stations, where they can work to retain whatever skills they have remaining.

However, what I think sometimes people don’t see is that ‘God’s waiting room’ can just as easily be one’s own living room if you’re old, infirm and on your own. Take Lilian for example: she lives alone in the same house she has lived in for sixty years. She has advanced dementia and is doubly incontinent. Lilian does not speak much these days but has always been adamant that she wants to stay in her own home. Now, however, she cannot go upstairs at all and she barely moves from the couch, where she also sleeps, in her clothes, sitting up. Lilian refuses to wear nightclothes or even have a bed. The television has always been on when I have visited. The carers come three times a day, for twenty minutes in the morning; fifteen minutes at lunch and fifteen minutes at tea. Between these times and for the long stretch from 5pm to 9.30am, Lilian is on her own, sitting on the sofa, staring at the TV. The channel is never changed; her expression never varies, whether the screen is showing Jeremy Kyle punch ups, a game show or the news or if it goes off-air. At 9.30am, the carer comes, attempts to give her a wash standing up in her living room (logistically very difficult due to her frailty and often not possible due to her resistance), changes her pad (which is often soiled overnight) and makes her porridge in the microwave. At lunchtime, the carer comes back and leaves Lilian a cheese sandwich and a cup of tea. At teatime, a frozen meal is heated up for her. Once a week, a carer cleans her house and shops for her food, but Lilian never leaves the house. Lilian recently turned 90 and received only one card, from the agency that her carers are employed by.

There are more Lilians out there than it is comfortable to contemplate.

‘All care homes smell!’
Yes. In my experience they mostly do. Of urine and faeces. I’ve never been in one that doesn’t, at least some of the time. Some are worse than others. What’s important is how quickly the staff change the residents and how respectfully they do it.

‘All carers are angels/devils’
I have seen some fantastic carers, who are endlessly patient and wonderfully kind. This is sometimes despite the verbal and physical assaults sent their way by the people they care for: answering the same questions many times a shift, day after day; finding out and honouring the little things that matter to a person; getting to know a person properly and being alert to physical cues, respecting that someone has a right to exceptional physical care even when they cannot tell anybody what’s wrong.
I have seen some shocking carers, who are thoughtless, lazy and occasionally deliberately unkind: meeting frustrating behaviour with raised voices and rough hands; not changing someone’s incontinence pads when they have had a bowel movement; taking the path of least resistance; not noticing or caring that someone’s wheelchair is parked at an angle that means they can’t see the television; neglecting personal care interventions, like cutting nails or washing hair; and numerous tiny acts of thoughtlessness or neglect that rob someone who can no longer speak up for themselves of their dignity.
What I see most of the time, however, is overworked, underpaid, well-meaning people, the majority of whom are women working shifts for one reason or another, struggling in a massively under-funded industry, in a society that does not respect them or what they do, doing the work that is so necessary, so difficult and which most people could not do.

‘They just take all your money and I want to leave it to my kids’
They won’t take all of it, but they will take most of it. If you’re on benefits, you’re currently left with about £25 per week for yourself and the rest is your contribution to your care. If you have savings above a certain level, you pay a lot more and at a different rate than the council pays. It’s complicated. It’s expensive. If you try to leave it to your kids you may well be pursued for deliberate deprivation of capital. Funding elderly care is a ticking time bomb for our ageing population.

 

So what has visiting care homes taught me? (Apart from the fact that extreme old age can be immensely sobering and that life is unfair). In my opinion, it boils down to just one thing – ultimately, it is compassion and respect that matter.
I sincerely hope that I have the opportunity to live to a ripe old age, surrounded by people who love me and that I am as healthy as possible for as long as possible. But I have seen many people who are, unfortunately, alone at the end of their lives and do not have anyone they love or who loves them. Perhaps their partner went first. Or they never had a partner or children. Or they have fallen out with their children. A lot of people towards the end of their lives are difficult, intractable, rude, vulnerable, difficult to like let alone love. You can’t always give love to people, but to have a meaningful society, to make life worthwhile, you don’t just house and feed the vulnerable, you also give compassion, respect and dignity – to the cared-for and their carers. I think it really, really matters.

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A Life Ends Alone

il_340x270.94197839Grace came to England from Jamaica in 1962, when she was a capable, enterprising young woman in her thirties. She settled in the Moss Side district of Manchester and never left the country again, scarcely even set foot outside Manchester again, and died recently in hospital at the age of eighty-something.

I first met her about a year before she died, when she was ill, virtually housebound and stubborn as a mule. The Council had embarked upon an extensive renovation project involving several streets of terraced houses and was busy relocating the (mostly grateful) tenants to better and brighter homes. Not so Grace, however, who point-blank refused to consider moving from the dilapidated mid-terrace that had been her home for the past fifty years. She liked where she lived and she wasn’t about to move out of her home, she explained tetchily to the series of increasingly exasperated – and increasingly senior- Council employees who trooped in through her front door to try to change her mind.

I had my suspicions during my first couple of visits that Grace was in fact living only in one room of her home, the back room, with occasional shuffles from there into the kitchen which ran directly off it.   I do not know at what point she had given up trying to climb the steep Victorian stairs but, when she eventually trusted me enough to send me on an errand to her bedroom, the upper floor of the house had a strange, unlived-in air. The bed’s pink candlewick cover was entirely undisturbed; the bottles and pots covered in a thick layer of dust on the dressing table.

Where was she sleeping, I asked her? At first she maintained that she was sleeping in her bedroom but later, defiantly, confirmed that she was sleeping in her armchair because of her COPD. What about the toilet, I asked her? Wordlessly, she jutted her chin in the direction of a bucket half-concealed in the corner of the room. Washing herself, it turned out, was a precarious, infrequent event standing at the kitchen sink.

I tried to talk to Grace about accepting some help, explaining that the housing officer and others were very concerned about her, and that the GP was frustrated when she rang with emergencies. It took several visits even to be able to mention ‘social workers’ without a sucking of teeth and a vehement shaking of the head. I told her that I needed to alert social services to her vulnerability, as I was concerned about her safety, at which point she asked me to leave, subsequently refusing to answer the social worker’s knock at the door.

A couple of weeks later, she rang and asked me, stiffly, if I would kindly rearrange the appointment. I called round to meet with her before the social worker arrived, and she asked me to help her tie her headscarf and put in her earrings. She was donning her armour, I realised. And I felt like I had been taken into a circle of trust, a club of which I was perhaps the only current member.

Over the next few months, I got to know Grace a little better and she told me about her life in England. About how she had come over from Jamaica with her brother and had always been ‘one of the boys’. About the fine life she had had, when they all looked after her and she looked after them. About how she had never been interested in marriage or children, telling me that you can get on with men just fine, if you operate on their level, but you must never trust them an inch – experience (darkly hinted at but never disclosed) had taught her that. About how, when her brother died ten years ago, she had lost her last link to her family, having never kept in touch with the extended members back in Jamaica.   One by one, her friends had passed away or moved away until, finally, she was the last one left in the street from the old days. Her friend’s son now kept the shop she had always patronised and, if she rang him up on the telephone, he would (for a cut) go and draw her pension for her at the Post Office and then drop off parcels of ackee, rice and chicken.

The ‘package of care’ which she reluctantly accepted from the social worker was endlessly problematic in its operation. Grace did not fit the mould: she did not want cheery carers turning up in pairs to wash, dress and feed her in fifteen minutes flat – she wanted a discrete lady to sit outside the bathroom whilst she took a bath by herself, just to be on hand in case she ran into difficulties. She did not want microwaved frozen shepherd’s pie and sponge pudding plonked in front of her – she wanted saltfish, rice and peas, freshly cooked.  Grace did not want to be carted off to day care, to sing along with other pensioners, or play bingo. All her friends had gone, she said and she did not want new friends. Several times, the care agency complained to the social worker that they were running out of carers who could work with Grace, as she continually refused their interventions, but the endless parade of interchangeable young women only served to enrage her further.

And all the while, the Council’s renovation works went on around her. Grace was by now quite the only person left living on her street. There was scaffolding all along the outside walls of the terrace and the resolution had been taken to carry on with the outside work only whilst Grace was still a thorn in their sides. The house vibrated and dust rained down around her – COPD or no COPD – as the workmen pressed on. I expect they thought she’d give in eventually; I think she knew she didn’t have long left and she wasn’t about to give them the satisfaction of making things easier for them.

One day when I turned up to see her, birthday cards – about fifteen of them – were strung up on a piece of wool around the walls of the back room. I congratulated her and commented on how lovely it was to see she had such a lot of cards. She looked me straight in the eye and nodded, looked at the cards, looked slowly back at me and admitted that she put them up herself every year. It dawned on me that these were the same birthday cards that she had kept and displayed year after year: on closer examination, five were from her brother and the most recent card was from about 8 years ago. I recall feeling close to tears as I looked back at her, but her defiance (almost) repelled sympathy.

Grace died about three weeks later. She was found, collapsed, by one of the carers on the floor of her back room and taken to the local hospital. She never regained consciousness and died a day later, alone.

I wish I had known she was in hospital. I would have gone to sit with her and hold her proud hand.

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An Inspiring Mother

hands2If you were to catch a glimpse of Anne walking down the street, you would not think her extraordinary in any way. Perhaps you wouldn’t even notice her in the first place – most people don’t notice old women. If you did pause to look for a moment, you would see a white haired, stooped, smartly dressed eighty three year old who still moves quite briskly for her age. If you looked a little longer, you may pick up in her unflinching, challenging gaze a hint of the steeliness and determination that sustains her.

Anne’s son is nearly fifty now. He does not live with her, but she sees him three times a week. One day she visits him, one day he is brought to see her and one day they are supported to go on an outing together. If they have enough staff on the rota to provide him with the two-to-one cover that is required to keep everyone safe, that is, so quite often it gets cancelled.

She told me that she knew from when he was a toddler that something wasn’t right. To start with, people told her the tantrums were a phase that he would grow out of and that all children behaved this way. She so wanted to believe that her beautiful, bewildered boy would stop the biting, the head-butting, the rocking, but as time went on and he didn’t grow out of anything, she grew more and more worried. As the months and years ground on, it was clear to everyone that he wasn’t developing as he should; that he was not ‘normal’. The few words he learned were simply not adequate for him to articulate the frustrations he felt with the world and so the lashings out continued. He clung to Anne as to an anchor in a stormy sea but, sometimes, she got in the way and the older he got, the more it hurt.

Friends drifted away. He was too difficult to be around and people – even the kind hearted, sympathetic ones – didn’t want their children to be around him. Eventually, when their boy was five, Anne’s husband left too and neither of them have seen or heard from him since.

The doctors tried to help her, but they couldn’t find an answer. He was definitely autistic, they told her, but that couldn’t explain everything. There was no other specific diagnosis, but talk of ‘developmental delay’. They talked about finding him a place in a children’s home, about how this would be the best place for ‘a boy like him’. So she went to look at the one they wanted to send him to and decided that no-one was going to lock her son up and throw away the key.

Who will love him when I’m not here?

So she fought the doctors who thought they knew best and kept him at home with her. She fought the social workers and she found a special school that would take him. She fought the local authority and she got the budget for transporting him to school and home again and for some respite time for her, so she could keep going. She fought the system and – eventually – she got the disability benefits to which they were both entitled.

Who will fight for him when I’m not here?

When he got to be adult sized, Anne realised she could no longer cope by herself. She couldn’t keep him safe and she couldn’t keep herself safe. She couldn’t believe that he wanted to hurt her, when she knew he loved and needed her so very much, but she did keep getting hurt. The amount of physical restraint required to control him became impossible when there was only her there to do it and he was bigger and stronger than she was. The complexities of dealing with a boy whose hormones, cruelly, developed normally whilst the rest of him did not, were too great for her to manage alone. So he went to live in a house with ‘boys like him’, with staff there day and night. And then, in due course, to another house, with different men.

Now, at almost fifty, he has been living in the same house for nearly two decades. Other men have come and gone, carers’ faces have changed regularly but there has been stability and security for him and always his mother at the centre of it all. Anne has continued to fight for him every step of the way, has been at every assessment and has protested against every repeated attempt to cut his care package. She has taught herself about the law and about his rights and she has been tenacious at securing those for him.

And now, as she progresses into old age, Anne is preoccupied with trying to make sure everything is as secure as it can be for her child before she dies. She has made sure that her son is not just locked away, that he has the opportunity to have physiotherapy in a hydropool, that his physical health needs are not neglected just because he cannot articulate what those needs are, that he is taken out into the community with an appropriate level of support.

Who will make sure he gets what he deserves when I am gone?

She has made friends with each and every one of the underpaid, endlessly replaceable carers assigned to be his key worker, to show them she appreciates what they do in the hope that they will be more inclined to look kindly on her son.

How will he cope in a world when he is difficult to like and there is no one left who loves him?

She is dismayed at the news of the austerity measures and the public sector cuts and what this will mean for her boy. She has refused to accept austerity-inspired attempts by harried social workers to ‘still meet his assessed needs, but in a cheaper way’ and has harnessed the support of charities and solicitors to prevent her son being moved, aged 49, to a care home with people decades older than him.

Who will protect him when I’m not here?

Anne once told me that she wished people who said they never wanted their children to grow up had some understanding of what having a child denied the opportunity to grow up was like for a mother. Meeting her, witnessing the strength of her love for her son and the extent of the fight she has made, has been humbling and moving.

She is an inspiration as a woman, an (unsung) disability campaigner, carer and mother.

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Helen and David

romance_first_love_wedding_engagement_couple_postcard-r2c233c0ace4c4be68c634e7258800d57_vgbaq_8byvr_324

She had always promised him that she would never put him in a Home, however bad things got, whatever happened.  But that is what happened.

She had always told him that she would be the only one to look after him. But she wasn’t, not after what she did. Or rather, what she didn’t do.

She had always assured him that, just as for the last fifty five years, it would be just the two of them, seeing it through together, right to the end. But it turned out that lots more people than that had to get involved. After David’s Fall. Or ‘The Incident’, as others referred to it.

She had married late; well into her thirties, quite definitely on the shelf and completely despaired of by her mother. She didn’t really understand why no one had wanted to marry her before then – the girls she had grown up with seemed to have no problem getting married off from the age of 17 – but she’d barely ever spoken to a man. A couple of times, when out with Margaret or Beryl or Ann, someone had offered to buy her a drink or twirl her round the dance floor, but she had always frozen and rebuffed their advances immediately, completely unsure of how to respond to the jokey comments they inevitably made. She always felt that she hadn’t been pretty enough for them to give her a second try and that was just fine by her.

 

David had been different from the start. He was shy, like her. He was older too – and he had never had a girlfriend either. He respected her reticence, admired her awkwardness, and approached her gently and gradually. He didn’t confuse her with jokes like other men; he seemed to ask her straightforward questions that she knew how to answer.

 

They married after a year’s courtship of evening walks and classical music concerts. Children had never come along for them – she said it was just never meant to be. She did get pregnant a few times, but her body wasn’t able to hold onto the babies for long. Helen knew that people pitied her for her childlessness but actually, she didn’t really mind that much. She would have loved them, she knew, but she liked her life with David as it was and didn’t want to share him with anyone else.   She was sad for him though, as she knew that he secretly yearned to be a father, though they never even really discussed the miscarriages between themselves. People didn’t in those days.

It wasn’t until David was into his mid-eighties that she noticed something wasn’t quite right with him. It had started almost imperceptibly with the little things, those same little things that she felt were happening to her. They joked about getting old together, about forgetting what they came into the room for, about forgetting names, about forgetting their own heads if they weren’t careful!

 

But then, gradually, it started to get more worrying. He got lost coming back from the corner shop and, when he finally made it home after two hours, he didn’t have the milk or the paper he had set out for and no memory of what had happened.   He was a man of few words to start with, but she couldn’t fail to notice that he was increasingly unable to find the right word at the right time.   He fed their beloved cat six, seven, eight times a day, unable to remember he had already fed her. The opposite was true for himself: he started to refuse meals lovingly prepared by Helen, convinced that he had already eaten and that she was trying to confuse him. He started to look worryingly thin and he gripped onto their antimacassar backed armchairs and dust free sideboard as he shuffled his way around their immaculate living room. She had to start following him up the stairs, one hand on his back to guide him up and steady him if he stumbled; the other hand gripping the bannisters as she heaved herself up, as arthritis was making climbing stairs increasingly difficult and hazardous for her too.

 

Helen admitted to herself, in quiet reflective moments, in the dread of the wee small hours, that perhaps there was something wrong with her too. She was never quite sure of the day any more. She found the television difficult to follow and had taken to shutting it off in a temper when she did not understand the twists and turns of a drama.   She wrote herself endless prompts and notes – even how to make meat pie, after that awful time when she stood, frozen, in her kitchen unable to start cooking the meal she had made weekly, automatically, for fifty years.

 

She spoke to her sister on the telephone every Sunday, but they had not seen each other for years as they lived in different cities and neither of them drove. She had been friendly with the couple next door, but since the new young family had moved in, there was no one to see or talk to and no one to notice what was happening to Helen and David.

 

For the first time, there were cross words between them. She did think about whether David should see the doctor, but she didn’t know how to bring that up with him.   David had always made all the decisions for both of them and she didn’t know how to start changing that now. They didn’t want other people knowing their business and what could the doctor do for him anyway? You only went to the doctor if you were ill, and they were both just getting older and they would get through it together. She kept telling him that – that she would look out for him and he would look out for her, as though they were facing a common enemy together, against which they could emerge victorious. Helen and David against the world.

 

David’s Fall happened sometime in the middle of the night, in the middle of winter. He had been getting up to go to the bathroom through the night for many years. On this night, however, he must have lost his balance in the dark coming out of the bathroom and he crashed down onto the small upstairs landing. (Afterwards, she privately decided that it was a raised lip of carpet between the landing and the bathroom lino that was to blame. She had been asking David to fix it for the past two years).

 

The noise of David’s head colliding with the edge of the wooden bannisters woke Helen. Her first confused thought was that they had an intruder and she felt over to David’s side of the bed to prompt him to go and investigate. On realising he wasn’t there, Helen made herself get up. It wasn’t easy – it was cold and dark and the pain in her hips and knees prevented her moving anywhere quickly.

 

David was out cold on the landing, blood trickling steadily from the wound on his forehead. Helen tried to deal with that first, rinsing a flannel under the cold tap and pressing it to his head until the bleeding came under control. He was a silly billy, she told him. He was a nuisance, she snapped as she struggled to bend down to him. He’d better get up sharpish, she said, as he was going to get pretty cold lying there if he didn’t get himself up. Not to mention the mess he was making of the carpet.

 

Helen carried on trying to help David. She decided that the best thing to do was to get him back into bed, so he could sleep it off. So she took hold of his ankles and tried to heave him into the bedroom. Despite his recent weight loss, she only managed to turn him and drag him a few inches, so that his feet and legs were now pointing into the bedroom and his head was aligned with the top of the stairs. Every time she got a hold of his ankles and tried to pull, a searing pain shot through her left hip and she couldn’t carry on.

 

Helen decided that the best thing she could do for David at that point was to put a blanket on him. She stepped over him in the doorway and went to the spare room, pulling the camberwick bedspread off the bed and draping it carefully over him. Then she took the pillow from his side of their bed and placed it under his head. Then she sat down on their bed to catch her breath and plan her next move, eventually dropping back off to sleep again.

 

In the morning, David was still lying motionless between the landing and the bedroom and, though she could tell he was breathing, she still couldn’t wake him. Helen was frightened and couldn’t quite remember what had happened, what she had done, how long it had been since he had fallen. She realised that she needed some help as her ability to lift David was no better in the daylight than it had been in the middle of the night and the gash to his head now looked more alarming. She made her way downstairs, found David’s black leather telephone directory for their GP’s number and made the first of many attempts to get through. She listened patiently to a recording telling her that surgery hours were 8.30am to 5.30pm and that she should call back between those hours for an appointment.

 

Helen waited for 8.30am to start dialling, then eventually got through to the GP receptionist sometime after 9am to request a home visit for her husband. On being told that the GP she had asked for had retired some months previously and that there were no appointments with his replacement for the next week, she finally broke down and cried to the receptionist that she could not manage to move her husband and asked how she was supposed to manage for a week if he wouldn’t get up off the floor.

 

After that, things moved pretty quickly and all the other people started getting involved. First the paramedics, then the hospital doctors, then the nurses and the social workers. And the questions started. Why had she not called an ambulance for her husband when he fell in the night? Why did she not call an ambulance in the morning when she could not get through to the GP? Why had they not sought help from their GP earlier? Did they not know that there was help out there, from social workers, from dementia support groups, from Admiral Nurses? Because she didn’t want to cause a fuss she replied, because he had just fallen over and you don’t need to bother a doctor for that, because they were looking after each other.  She had made him warm, she pointed out – she had given him blankets. And no, she did not know there was ‘support available’.

 

David spent some weeks in hospital, recovering (physically) and being assessed and that’s when the terrifying meetings started happening for Helen. When nurses looked sympathetically at her when she visited the ward, when a social worker announced to her that they had assessed David as ‘lacking capacity’ to decide where he should live when he was discharged from hospital. Helen had never considered any other option than him coming home to live with her again, until she was told that ‘professionals’ did not think it was in his best interests to come back to live with her. Helen was filled with fury at a room full of people, none of whom had been born when she had married David, all of them younger than the babies she had lost, and not one of whom knew how they had lived their lives, presuming to know better than she did what was in his best interests. So she tried to tell them of their privacy, how they just liked their own company, how David’s worst nightmare would be to live in a nursing home with others. And they smiled sadly at her, heads on one side, assuring her that her views had been taken ‘into consideration’ as part of the best interests process, but how they had decided that David simply could not come home.

 

Helen still did not understand why and told them anxiously how she still cooked him his favourite meat pie, how she tried to help him up the stairs by walking behind him, how she was looking after him. And they told her (sadly) that, because of The Incident, David could not come home as they did not think she was fit to look after him. Mortified, she told them stiffly that she would accept help in her home if they did not think she was fit to look after him alone, to ensure there was no repeat of David’s Fall. And they told her (sadly) that, as David required 24 hour care, and the couple did not have the very considerable resources to pay for it in their own home, the local authority would only fund a standard bed in a nursing home appropriate to meet his needs and keep him safe. She asked if she could go with him, but they told her (sadly) that, unfortunately, her assessed needs did not qualify her for funded residential care. David would have to go to a nursing home and Helen would have to go back home alone, with three fifteen minute calls a day from a local agency.

 

So that is what happened in the end for Helen and David.

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