episode fourteen: jelly wobbles

in which jelly, once a special treat for her grand daughters, becomes a threat to mum’s life

It was a day like any other. That’s how it felt when I got up around six-thirty and showered and started to get the medications ready. I had no idea that by the evening I would be alone and angry, without knowing who to blame. But blaming myself…

Now I think back, the first signs something was not right came the day before. Only I didn’t spot the signs. Mum was confused. Tense. When I tried to give her a drink, she gripped my hand hard, digging her nails in, like she meant to hurt.

With dementia, you expect mood changes and you can’t easily ask for an explanation. When I spoke to her, she didn’t hear me anyway. Or if she did, she didn’t react. But then some days are like that.

By the evening, I was tired and she was tired too. When I took her some food in bed, she didn’t eat much. I had to scrape most of the cold macaroni cheese into the bin. That sometimes happens , so I didn’t make much of that either.

The next morning though, it was hard to wake her. Her eyes opened, but there was a stranger behind them. She’d gone to another place, and I had no idea where that place was.

When the carer arrived at eight o’clock – it was Carrie who came – I said I wasn’t sure what was going on but maybe something was. When we began to change mum’s pad, soaked from the night, the urine was dark brown and smelt strong. ‘Offensive’ was the word Carrie used. It’s a medical term. Though it sounded like a judgement. On mum and maybe, I thought, on me and my care.

Probably a UTI, Carrie said. I knew what the word meant. Urinary Tract Infection. Mum had had them before, both when she was with my father, and in the care home. UTIs are a normal hazard for older people, especially those who are bedridden or incontinent or both. But for some reason, I hadn’t expected one so soon. Maybe I’d done something. Or not done something. But I knew Carrie was right, even though all we had to go on was the urine and the way mum was. Confused, anxious, out of it. Even though the difference in her was only one of degree from the everyday symptoms of her dementia.

 Carrie had to go for to next client and I called the doctor. He came maybe two hours later, cramming us in with a lot of house calls that morning, by which time mum was sleeping. Or maybe even unconscious. She was certainly hard to wake. Harder even than she had been in the morning. Taking her blood pressure, listening to her chest through a stethoscope, the doctor pressing on her tummy with his fingers searching for any pain, did little to bring her round.

He was measuring her blood oxygen levels. Seventy-nine per cent. The doctor said that was low. Low enough that he did it again. Then he stood and stared for a moment. Her temperature is low too, he said, just a degree or so, but together with the oxygen levels, it could be a problem. I had no idea what kind of problem he meant, so I asked.

He told me sepsis. I’d heard that term too. The doctor said it was a sudden release of chemicals by the body designed to fight infection. Only it causes widespread inflammation that can be harmful, especially to someone like mum with a weak immune system due to age and illness.

The doctor said sepsis could lead to organ failure. He said it could happen quite quickly, and it would be best to call in the paramedics and get mum to hospital, just to be sure. He said the doctors there would also be able to isolate the bug in her bladder and give her stronger, intravenous antibiotics, something he couldn’t do. He said not to worry. Just a precaution.

But I did worry, of course I did. The paramedics arrived, calm, almost nonchalant in their green uniforms with bags of kit and a lot of forms to fill in. One asked me questions and the other casually toured the house looking for the best way to get the ambulance stretcher in.

They’d come quickly, maybe an hour after the doctor left. And they had questions. When the questions were done, they told me I should pack a bag. Anything mum might need in hospital. Nightclothes, toothbrush, slippers, whatever. So I did that. I wondered how long she might be there, if I should have a change of clothes or something.  I used the same shoulder bag I’d used in taking things to my father when he was in hospital, just before he died there. It occurred to me maybe I shouldn’t use the same bag, because of bad luck or something, but I did because superstition is not really my thing , even if we were going to the same hospital.

The paramedics strapped mum to the stretcher and put the metal guardrails up. They got her out through the conservatory doors and by the garden path to the ambulance. They said I could follow on if I wanted to. They didn’t seem to think it was necessary. But I thought it was.

At the hospital, it took me a while to park. There was always a queue when I went to visit Dad too. I explained at the accident and emergency reception that mum had just been brought in, but they said she hadn’t. But then the receptionist said she was there, just not registered yet. I said needed to be with mum because she had dementia. She made a note of that and directed me through the doors to one side and said she’d press the access button to let me through.

It was crowded. Not crazy, but busy. The paramedics were still by her gurney, parked in a corridor waiting with quite a few others. Some were lying down like mum. Some were sitting on chairs or in wheelchairs.

The paramedics soon left. I stood with the bag in one hand, holding my mother’s hand with the other, and we waited. After a little while, a nurse came with a porter. He looked tired but with the nurse leading the way, he wheeled mum expertly through the metal-clad doors on his own, refusing my help.

I didn’t see that nurse again. The porter left us in a booth with a curtain, like half a dozen other booths we passed on the way, some with their curtains open so you could see in, some closed. He left our curtain open. There was a chair in the booth, but the gurney was set high. If I sat, I couldn’t see mum. So I stayed standing.

Her eyes were mostly closed but she wasn’t sleeping. Her lips were moving. No words I could make out. She felt hot to the touch and she was flushed in her cheeks and down the side of her neck. Like a rash. I hadn’t thought to bring a bottle of water and I wondered if there was a shop or a machine where I could buy one, but I didn’t want to leave her alone.

Maybe twenty minutes later – I can’t be sure…time is warped in these situations – a nurse or a doctor with a clipboard pulled back the curtain and looked for the name of the patient in her paperwork.

Who is this? She said. She didn’t introduce herself. I said my mother’s name, in full. She asked some questions and filled in a sheet of paper with my answers and said a doctor would see mum on the admissions ward. So I guessed she was a nurse from the way she said ‘doctor’ but I never did find out. She went and reappeared ten minutes later with a porter. A different one from the first guy. The porter pressed hard on a pedal to release the gurney’s brake, and we started down the corridor.

In the admissions ward, there were other people on other gurneys. Half an hour passed. Then a doctor came. She was young, smartly dressed, and she didn’t waste much time on bedside manner. She seemed hassled. She too had questions to ask and more forms to fill in, so she set straight to it.

A check on the name. Date of birth. Marital status. Next of kin. Existing medical conditions. History of medical conditions. Known allergies. Smoker or non-smoker…

It was the smoking thing that stopped me dead. She repeated the question and l shook my head. Non-smoker? She asked.

I struggled to answer. No, I said. Then, yes, I mean, yes. The doctor looked at me, waiting for a clear answer. I said, look, can’t these questions wait? We’ve been here a long time now. Mum needs a drink, some water, anything. And I’d like someone to examine her.

The doctor tried again to ask a question. But I said I wouldn’t answer any more questions until something was done. I probably looked angry. I know I felt hot and tired. So she went away.

A little while later, another doctor appeared. He was older and he also had a stethoscope around his neck, as they do. But he had no paperwork and he introduced himself. He even said hello to mum, though she didn’t hear him. I told him what I’d done, but it was clear to me he already knew. It was probably the reason he was there. He said not to worry, they’d get to the questions later and he said a nurse was coming with some water from a machine.

I apologised. He said it was okay. He said we’d get mum to a ward and sort things out later. He said ‘we’ like that, but I didn’t mind as long as things got moving.

Mum was put on a regular ward with a saline drip feeding into the back of her wrist. There was a clear plastic tube leading to a bag of fluid on a metal stand and what looked like a green plastic tap, taped to her skin.

It was six or seven hours after I’d called the doctor, maybe four hours after we got to the hospital. Mum looked peaceful and properly asleep for the first time. I wondered if she looked peaceful because the drip was doing its thing, or because she was dying.

The ward sisters let me sit with her until suppertime came around. The catering trolley parked in the middle of the ward. It had mince and mashed potato on a plate with peas and an aluminium cover to keep the food warm. There was salad too. I took the mince and I took a yoghurt the catering lady offered. I took a coffee for me and some juice with a straw for mum.

I got some help to raise the back of the bed and mum was awake enough to take some juice and a little of the yoghurt. It was six o’clock.  The lady with the trolley had come by and picked up plates and rubbish and mum was resting again. Visiting time had started officially, so now I was no longer the only person sitting by a patient’s bed. The ward had men and women, young and old, but no children. There were family or friends by other beds now, chairs pulled around to face whoever was in the bed.

Soon though, the other visitors left. The nurses’ station now had table lights on and there was a hush about the main ward and with the neon striplights off, a kind of twilight. There was nothing more I could do. It was time to go.

It was pretty much dark when I left the hospital by the main entrance. The sky was a deep purple and I walked under the yellow street lights and paid the ticket at the machine. There were so few cars by that time, mine was easy to find. I rolled a cigarette and put it behind my ear. I wound the window down once I was clear of the barrier, and set off home, smoking as I drove, my mind a blank.

I tried to think what I should do next, but nothing much came. Phone my sister perhaps. And tell her what? That everything would be okay? Would everything be okay? Could I say that to her?

When I got back to the house, the stillness of the place hit me. There’s something different about the quiet of being alone in a house. It’s a strange kind of quiet, more like a noise you can’t hear. I’d spoken to the care agency and told them not to come the next day whilst at the hospital. I knew I had to call my sister, so I did. She was at work, so I was quick and reassuring. She was okay with it I think. We’d speak again anyway, and soon.

After I put the phone down, I started to hate the quiet of the house. It felt like the place had been robbed. Or there’d been a death. I had a drink. Gin I think. Then some wine. I suppose I came down too fast, because I began to wonder again if my mother was going to die. People do die in their sleep. They die when they’re alone. My dad did. Maybe mum wouldn’t die tonight. But maybe soon. And I knew if she did, I would feel responsible. Even though I wasn’t.

It was not my fault. And there was nothing I could do now to save her or make her well. She was no longer in my care. She was in their care, the doctors and nurses, the professionals who were paid to care and to save lives. All of them strangers who didn’t know my mother and wouldn’t be able to get to know her because the sepsis‑if that’s what it was-would disrupt her ability to communicate, and the dementia would alienate, and the pressure of time and other patients to care for, would mean they’d leave her alone. Not mean, nothing cruel, just the way of the place.

If she needed something, they’d tend to her. If she cried out or pushed the orange button on handset, they’d go to check on her. Of course she wouldn’t press the orange button. She wouldn’t think to, wouldn’t be able to, but anyhow, she was sleeping when I left. Nothing would happen.

It was eight o-‘clock in the evening. The whole day taken up to get her from one bed to another. I’d tried to wake her at eight o’clock this morning. Twelve hours. She didn’t even get lunch, let alone touch the supper. Some yoghurt, a bit of juice, that was it. They wanted to isolate the bug before treating with an antibiotic, so no medication either. Nothing but an endless day of waiting and walking, sitting and lying, questions and answers, strangers that weren’t me and strange places that weren’t home. And all this in the name of medical care.

Was I angry? And who with? Me? Them? Who? And what did it matter if I was? This is how the system works. You’re home until you’re ill, then you’re not. Then you’re in hospital. Still, it would be fine, even if it felt like an affront, like an insult to do that to her, and me, it was all for the best, wasn’t it?

Ånd if I went back to the hospital first thing, she might even realise I’d left. She might not know where she is, but if she sees me, she’ll know she’s not alone. I’ll do that, I thought. I’ll go in, early. I’ll just go there. What can they say?

So that’s what I did. On the first day, she was mostly asleep. On the second day, I arrived just before lunch to find a nurse giving my mother water using a teaspoon. The teaspoon had what looked like clear jelly in the bowl and the nurse told me she’d been there for an hour or more trying to get my mother to take the jelly. I think she said ‘drink’ but you couldn’t drink what was on that spoon. It was piled high and the clear jelly wobbled as the nurse held it to my mother’s closed lips. I asked her why she was doing this and she said the SALT team had ordered thickened fluids. She was just doing what she was told.

The nurse told me the first anti-biotic hadn’t worked. The consultant had ordered a new and different antibiotic and had called in the SALT team. Speech and Language. They advise on feeding and watering if a patient doesn’t seem able to easily take food or drink.

Standing there, not knowing quite what to say or do, I noticed there were two laminated notices above mum’s bed, one yellow and one pink. The first said, ‘nil by mouth’. The second, bizarrely, read ‘no ice cream’. I thought maybe there’d been a mistake. The beds had been moved maybe. The wrong patient given the wrong notices. But no. the nurse said there was no mistake.

She told me the test the SALT team use. They give the patient a piece of banana to eat. They put the banana in the patient’s mouth and then they watch to see if the patient chews and swallows without difficulty. That’s what they did with mum.

Only, she had not much idea where she was or who these people were or why they put a bit of banana in her mouth and then stood back and watched. She had an infection, she was on an antibiotic drip and she was barely conscious. She didn’t do well with the banana. And because she didn’t do well with the banana, they thought that fluids too might be a problem. So the fluids should now be thickened in order not to choke the patient.

But there was worse. If mum didn’t take enough food and liquid, the SALT team had recommended peg feeding. That means inserting a tube directly into the stomach wall and pouring liquidised nutrient through it, bypassing the mouth, swallowing and chewing altogether. Yet another tap is inserted in the stomach wall that can be switched off between feeds and to help prevent the frequent infections that result from your insides having a direct link to the outside world.

I asked the nurse. Mum wasn’t taking enough food and drink. Hardly any in fact.

So I went to the ward sister in charge. I had to wait to see her, but I wasn’t going anywhere until I did. Eventually she came and she said it was not her decision and only the consultant or the SALT team could make a change. So I asked to see the consultant. It was clear relatives are not entitled to see consultants as a matter of course. Perhaps not at all, ever. These are busy people. Important people. They know what they’re doing and they’re not accustomed to being cross-questioned.

I said I would wait all day if necessary. All night if it came to that. The rest of the day passed and just before visiting time, when they knew I was serious, a meeting with the SALT team and a completely different consultant was offered in three days time. I got to speak to someone on the internal phone.

I was calm when I told the person at the other end that my mother was perfectly capable of eating normally when well and at home. I said that if any attempt were made to insert a peg feed into my mother’s stomach before that meeting, I would fight it. There was a silence at the other end, so I added for good measure that I believed it was wholly wrong for such decisions to be made without reference to me as her carer and without my mother’s consent. I think I said I would sue.

I had to take the call in front of the ward staff, so what I’d said was no secret. But I felt no embarrassment. I told the ward sister I would be there for every meal from now on. That she should tell her nurses to refer to me with any issues or concerns. So  that’s what I did. Every meal of every day. The timing was good. As the new antibiotics kicked in, mum began to brighten and to eat more, drink more. As the days went by, I did nothing to hide what I was up to, even making a show of bringing her a favourite ice cream on a stick, covered with chocolate and nuts. I got the impression the nurses backed me, but couldn’t say so.

By the time of the meeting, she’d been in hospital for more than a week and was clearly almost fit enough to go home.

They used a side office for the meeting, no more than a desk and a chair. In all, there were four of them, the consultant perching on the edge of the desk, and three SALT team members. I think. I never did find out what each of them did.

There was some chat about a release date, maybe even the next day, and no mention of the peg feed dispute, until one plucked up the courage to ask me how I intended to take care of mum once she was home again.

I said I would do just as I’d always done, being careful what foods to offer her, aiming for as much as I could in terms of quality of life, adjusting to the situation and to her needs.

They asked me if I understood I was ‘feeding at risk’ as they put it. I said I did. They looked at me with a kind of helpless pity. But I was unmoved. They got me to sign something and the meeting was over.

Forty-0eight hours later, discharge delayed by yet another consultant’s opinion, I was wheeling mum down the long corridors of the hospital towards the entrance and the car park and home. I’d given chocolates to the nurses and I got the impression they approved of me, or at least the stand I’d taken.

Because we’d won the fight. In a way. Mum was weak, but she was eating and drinking again. And if her heels were heavily bandaged because bedsores had developed, sores I would only discover that evening were two inches across, with blood seeping through the dressings, sores would take a month or more to fix, with daily visits from district nurses to dress and re-dress the wounds, still I felt we’d won.

I was happy she was alive. Happy she was coming home. Happy I wasn’t guilty as charged. That I hadn’t taken her from the care home and killed her in her own home within a few months of becoming her carer.

Then it occurred to me. Why would this whole process feel like we’d been in a fight, a warzone? Why did my mum sustain injuries from all this over and above the infection? How did a simple UTI end with a ten day stay in hospital, more than enough time for a major operation and a full recovery? Even with me as her advocate, the impetus to escalate, from infection to peg feeding and nil by mouth, is built into the system. And I began to think, what happens to vulnerable people, the old especially, who have no advocate, no-one who knows them well, no-one who can fight their corner?

When Carrie came that evening to help with the bedtime routine, we were both a bit giddy and had only bad things to say about hospitals. That wasn’t fair. Our health service is second to none, health workers, from all over the world, driven by vocation because it certainly isn’t the money, and all this free at the point of delivery, still, despite efforts to dismantle what is a miracle of co-operation and care.

No, we weren’t being fair. But what is fair to say is that our hospital beds are clogged with vulnerable people who don’t need to be there. Vulnerable people who experience interventions too late in the day – and yes, I count myself at fault in that respect – but who fall through the cracks in our care system.

That’s why John’s Campaign, started by Nicci Gerrard and Julia Jones in 2014 matters so much to people like me. More than being allowed to be with my mum in hospital, I want to be welcomed, consulted, involved, helpful. I want to look after her there, just as I would here, at home. That’s what the campaign is about and that’s why I’ve put the contact details on the website, together with a link to Nicci’s brilliant book, What Dementia Teaches Us about Love.

Because until there is the bridge between social care and hospital care, or better still a new system altogether including intravenous rehydration and medication in the home, until there is proper funding for our district nurses, for regular GP visits to pre-empt issues arising, incentives for neighbours to check in on the vulnerable and effective support, even training, for family carers, we will be fire fighting and the system will be burning valuable resources trying to keep up. It’s not so muc new money we need, though that would help, it’s new thinking.

Mum is home again, and she’s recovering well. I am too, but I’m wary now. You have to be. It’s not the way things have to be. It’s just the way things are.

‘Me and my sister would visit every couple of months when we were younger…and she would sometimes have made us orange jelly with little mandarins in it…for a treat I guess…yeah I guess I don’t remember very much from before she had dementia…because I was quite young, but I do remember that she was always smiling when I saw her and she had just the biggest smile and she would laugh, she would laugh when my Dad would make jokes and she would laugh at me and my sister playing in the garden…I remember once she bought me this jumper that I just begged for, it was bright red with a big picture of a Dalmatian on the front, from my favourite film at the time, and there was this name printed underneath the picture that read ‘Josey’ and I remember her saying to me everyone’s going to think that’s your name…yeah, I mean I always wish I could have known her better, known who she was…but I can still get to know her…get to know her now…

You’ve been listening to love and care, written, voiced and produced by the author, who must remain anonymous for the sake of his mum. If, as I hope, you’ve been listening since the beginning, thank you, that’s season two done and dusted, but there’s more to come…season three for example, where you’ll hear from my uncle, mum’s brother, we’ll talk to experts and passionate advocates, we’ll check the plenty of fish net and, well…a lot more, so please make it a date…

Love and care is a family affair. The assistant producer is the author’s daughter, Leah, and the associate producer is the author’s sister, and now co-carer, Karen. Title music is by Wes Hutchinson, with spoken contribution by Leah, granddaughter to my mum and a singer-songwriter in her own right. This podcast is a me2mama production, all rights reserved.