How’s my mum?

It’s a simple question isn’t it?

I wish it was so simple to give or even get an answer. First, I had to find out where my mum is.

She’s been in a home for the last month after she got so confused and agitated that she wasn’t safe to leave on her own. My brother and sister had spent a week providing 24/7 care that only the lockdown, and lack of work commitments, enabled them to do. That said, my brother was still trying to work from home each day and my sister, though self-employed, had plenty to do to keep her business afloat.  After a week they were knackered, mum wasn’t any better and a call to the GP surgery led to some paramedics visiting her and her being carted off to the local district general’s medical assessment unit for…assessing. An attempt to avoid this a few days before had led to a suggestion of outpatient blood tests, in a week’s time, miles away. The suggestion of a further course of antibiotics for a UTI was rebuffed by me given she hadn’t responded to the first course and there was no proof that she had a UTI.

Of course, no-one can go with her. She’s clearly confused but then became a shade more lucid going into the ambulance. Are we making a mistake? My sister makes sure she has both hearing aids in so that at least she can hear the staff at the hospital.

Hours later we hear she’s being discharged to a residential home that is some 10 miles from the from where she lives. I’m pleased, it will give my sister and brother a rest though its over an hour’s round trip to visit her there. It relieves me of a guilt of not being able to support them. I live, a round trip of 6 hours away.

Over the next month mum seemingly settles into life in the home. My brother is our nominated single permitted visitor and he videos the brief interactions he has with mum in the foyer of the home. It’s March and the foyer isn’t terribly warm, and mum spends much of the time complaining that the door is open and she’s clearly not dressed for being outside. Even with encouragement to stay and talk and a blanket being wrapped around her, she’s not settled enough to spend more than a few minutes talking to him. The videos are painful to watch. She’s gaunt, hasn’t got her false teeth in, her facial hair is reaching Neanderthal lengths and she’s struggling to hear. None of the carers know what has happened to her hearing aids. She didn’t have them when she was admitted to the home.

We buy her more hearing aids. They’re £200 because she’s only allowed one pair free on the NHS each year. That’s understandable but she’s no more capable than a toddler would be at looking after them these days.

When she has the hearing aids in it’s clear she can hear better and she’s a bit more engaged in conversation. She’s reluctant to talk on the phone. Her depression and, or her dementia make her feel she’s not allowed to do so, despite carers audibly cajoling her to keep talking, and the phone being on speaker so she can hear. She seems to have forgotten who her oldest son is. Well, I haven’t managed to see her for a whole year.

I have had lots of good phone conversations with her throughout the pandemic. Sadly after the new year, when her optimism for a family Christmas was smashed both by the government’s late changes to the rules, and Covid-19 spreading throughout my sister’s family, her calls became shorter and full of anxiety about (what seemed to me) trivia. In hindsight I should have given this more attention and thought about some mental health drugs earlier. Her GP’s empirical antibiotics for that, oh so easy to presume diagnosis – a urinary tract infection, and antidepressants didn’t make her any better, hence that first admission. How often do I prescribe empirical antibiotics in such a situation?

After a month, and a Continuing Health Care assessment in which it is acknowledged her mobility is high risk, she sustains two falls in one day. The second one leaves her with a head wound and an ambulance is called. She’s taken to another hospital, has her head patched up (I’m told later it was fairly superficial), she has blood tests and a CT scan. The latter shows nothing new. The bloods show normal inflammatory markers, reasonable renal function and a mildly elevated white count. She might have an infection. Her urinary continence fluctuates and I’m sure the staff at the hospital have little time to help her collect a sample for sending for culture. Empirical antibiotics are tried again.

Over the next day or so I try to find out where she is and speak to clinical staff who can give me an update. They can speak in abbreviated medical jargon, if they want. I understand it. My sister was told she was still on the assessment unit but after a long wait to get through to the hospital switchboard, to put me through to there, it seems she’s not there now. I’m advised to go back to switchboard and ask for admissions. I join the queue for the switchboard. It helpfully tells me I’m caller number 18 but it drops to 1 over ten minutes or so.

Admissions tell me she’s on Ward B35. They put me through, and give me the direct dial number. I get through and the sister gives me an update. It’s taken over an hour. I thank her for her time and for looking after my mum. I share the direct number with my siblings.

A couple of days later I manage to speak to the consultant responsible for my mother’s care. He tells me her inflammatory markers have increased and they’re changing her antibiotics, though they’re not sure where her infection is. The Covid test is negative, her chest is clear, as is her Chest X-ray. It could be a urine infection… Understandably he is reluctant to permit visits by her children though I’ve had two vaccinations, my sister has had one and we can all do lateral flow tests prior to coming in. Of course, he knows what the politicians won’t admit, that lateral flow tests are little better than flicking a coin. He accepts that a visit from one of us might help buoy her up a bit and help distinguish between dementia and pseudo-dementia (depression). My sister is given the job. She’s more local than I and she hasn’t seen mum for a month. Mum has also been refusing to take her calls and we don’t know how intentional that really is but she’s understandably hurt by it.

Hours later I get a tearful call from her that mum is unresponsive, and if I want to see her I should go now. After a day’s hard gardening I’m filthy, physically knackered and hungry. We phone friends. They’ll take the dog. I shower and we sort a pack up. Fortunately, the car is full of fuel. 90 minutes later the garage and garden are secure, the dog is on its way to friends and we’re on our way south. My partner books a hotel as we can’t stay with family, we’re still in Covid-19 lockdown.  We arrange to meet my brother in the hospital car park.

On the drive down I’m feeling stoical. Mum is nearly 81, has a long history of hypertension, been on dementia drugs for 9 months, has macular degeneration, atrial fibrillation and diabetes. Her failing eyesight means she can’t read easily or even watch the television. I think she struggles with recognising faces at times. At times in the last ten years because of her sweet tooth her diabetes been abysmally controlled and that will have caused damage everywhere. Now with her dramatic weight loss it’s in remission. It shows she’s catabolic, wasting away.

Having been concentrating on the sat nav directions for the last half hour of the two and a half hours of driving I’m surprised to find we’re in a hospital campus and almost there. Anyway, suddenly I’m feeling a lot more emotional. That heavy fizz that fills your chest when you’re trying not to just blub your heart out is welling up inside – or is it just angina!?I draw up next to my sister’s car and unwittingly onto a smashed bottle in the hospital car park.  My brother and I go in.

The ward bay has six occupied beds has and the lighting is subdued. It’s 9.30pm and though other patients are clearly awake we’re conscious that its quiet. We see she’s peaceful in her bed, and seemingly asleep but as the curtains are pulled around her bed she opens her eyes. With all the privacy of a full train carriage waiting the announcement after a sudden halt, we try to tell her we love her and we hope she’s comfortable. We try to say thanks for being a great mum and we think she’s done a good job. It’s hard not breaking down. She smiles at my brother and he’s strong. She doesn’t seem to recognise me! Bloody hell! I’m the oldest, her first born – the bloody doctor or prodigal son, as my sister calls me. Dementia, or depression has reduced that status to nothing! I’m delighted she recognises my brother though. He’s done so much to look after her in the last year, shopping and cooking for her and just being there in her flat a lot of the time. Her answers are monosyllabic and not seemingly coherent to what we’re saying. We squeeze her hand but she doesn’t squeeze back. Her breathing is shallow and I feel her pulse. It’s irregular as expected but strong and not too fast or slow. She’s not responding now, and as we’ve been there for over 15 minutes I feel we should go. I feel self-conscious telling her we love her and saying goodbye. I know it could be the last time I see her.

We have a brief catch up with my sister afterwards outside the ward and she’s pleased mum was conscious and responding, a bit. I’m shattered. I’m proud of my siblings though. They’ve been doing a lot and they’re strong. It’s the first time I’ve seen them or mum in over a year. I last visited her the weekend before the UK went into lockdown. I could see it coming and I feared there wouldn’t be another chance for a while. Mum’s plans for her 80^th birthday party came to nothing. She’d been planning it for a year and had sent out quaint printed invitations. Her hopes to go abroad again were dashed. Instead, she had a virtual assessment for dementia and on Christmas morning heard she couldn’t go to my sister’s that day after all and spend the day with the granddaughters.  I think that was the trigger for her deterioration.

Leaving the hospital my partner and I drive a mile or so to the Holiday Inn. We’re asked for letters from our employers or proof that we’re key workers so they know we’re allowed to stay. My partner explains why we’ve booked. The receptionist acknowledges why we don’t have such paperwork and he’s not a jobsworth.

The next morning, we drive home. I don’t want to abuse the hospital’s generosity in letting me visit at all and I know the nieces, mum’s grand-daughters, will be keen to see her if possible.

Over the next few days I get reports she’s a little better. At least that’s not she’s little worse. . Apparently she’s eating a bit and may have sat out of bed for a while, or was it just sat up in bed? It isn’t clear. Yesterday by mistake all three of us phoned the ward. Clearly that’s not helpful for them or us. I elect to phone each day or so. Apparently I get more out of the clinicians than my siblings do. If only the hospital could just message one of us a short ‘update’ it would save us phoning at all. Something that tells me she kept the bay awake with her snoring or attempts to climb out of the cot sides, ate a full English, or a quarter of a slice of toast, she’s had a hot shower, or a bed bath, has swallowed or refused her meds, has stood, or walked, or just sat in the chair, has smiled, has had a shave and of course, that vital piece of medical information – has opened her bowels, would all be fine via text. Perhaps a little on next steps too…further tests or treatment, physio, OT, stopping antibiotics, planning for discharge. Anything really. It could stop a lot of phone calls and a lot of hassle for all.

I guess capable patients have their mobiles to hand but mum can’t tell the difference between a TV remote control and a mobile phone designed especially for old fogies. She abandoned her touch screen iPhone just after Christmas as its rapid responses to inadvertent touching drove her mad (perhaps literally).  Whilst she once enjoyed playing Scrabble on her iPad with me, increasingly incessant pop ups, which she couldn’t readily get rid of, killed her tolerance of that. It seemed the developers wanted more than just her money from paying for the app in the first place, they needed to extract ever more from her still. So, they lost her, as did I, from Scrabble, for ever. Electronic Arts and Scopely shame on you.

Without a ward message today I have been trying for over an hour and wrote the majority of this blog as I did so. It took over 40 attempts. The phone was either engaged, or just rang out, or didn’t connect.

Eventually someone answers and I say “Can you tell me how my mum is please?” When they ask who is my mum, I’m put through to one of the junior doctors. Little is changing. Physically mum is stable. Her bloods are normal. Her antibiotics will probably be stopped tomorrow. It’s not clear if but it seems mentally she’s given up. Those are my words. The doctor is not so crass. But because she’s not attempted suicide a psychiatric assessment can’t be arranged as an inpatient. She might be in grave danger of self-neglect if there weren’t nursing staff to feed and water, wash and dress her but that’s not sufficient for an in-patient psychiatric assessment I’m told. Her GP will have to arrange that after discharge.

Because she’s been in hospital for over 72 hours the bed she had in the care home over the has been lost and we have to collect her things from there. The GP who looks after people in that home and who has been trying to get to know her and her history, probably won’t be her next GP. The whole GP process will have to start again, depending on where she goes. If she goes into a nursing home she’s entitled to Funded Nursing Care (about £180 per week). If she goes into a residential home she’s was deemed to not be entitled to any state support for her care. Going home is barely an option as even with four visits a day from carers she would be on her own for hours each day and all night. Night carers too would make the costs prohibitive.

I’m able to speak to her and she recognises my voice! Hallelujah! I tell her that a long list of friends send their love. I tell her lockdown is coming to an end and we can take her out. I tell her I miss our long phone calls whilst I’m ironing. She dismisses much of what I say with a stern and monotone “Pull the other one”. She say that more than once, and it’s in context so that’s good.  She says can’t remember seeing the grand-daughters. She isn’t sure she has two hearing aids in, or any and that may be why she seems reluctant to talk – she just can’t hear me well enough. I ask her where she’d like to go and that I’ll come and take her anywhere. There too, there seems to be an appropriate response that she’s not well enough to go anywhere at present. After a few more minutes of no replies a nurse tells me she’s fallen asleep. I know I’m boring but c’mon…Mum!!

In truth without more calories going in I doubt she will be physically resistant enough to survive many more weeks. We will all have to get used to that and see if we can help her turn the corner or be comfortable at least as she shuffles off this mortal coil. Until we hear more I’ll keep pressing “Redial” and hoping I can ask someone “How’s my mum?”

Written 9/4/21