Remembering Ronnie




This is the story of my Father in Law's death. I have decided to make the effort to write it down because I believe there are many facets to this story which will be useful to other people who face similar situations.


I must make clear from the outset that although this story will contain criticisms of the way the NHS works, this is not my primary aim. Whatever we think of the system, no individual is going to radically change it, and in any case, what I perceive as a weakness may be seen by someone else as a strength. Rather, I hope to highlight some practical steps we can all take to encourage patients towards recovery.


I would also like to say that the health workers who cared for Ronnie, at all levels of seniority, were always committed and helpful, and we would like to thank them for the many kindnesses shown to Ron and to us. Our warmest thanks also go to Sybil, Philip and Joy, without whom we could not have coped with having Ronnie at home, and to all the many other people who helped and encouraged us.


{First digression

Everyone from the Health Service who spoke to Ronnie called him Ronald. To my best knowledge everyone else always called him Ron or Ronnie, NEVER Ronald. Is it too difficult to discover what name people like to be called by? Or is there some dark, mysterious reason for using the formal version? }


What follows is the story of two years' events & incidents. Since neither Mirella or I took notes or kept a detailed diary, there will be occasions where memory has lapsed & events are reported wrongly or out of sequence. All I can claim is that this account is as accurate as we can make it.



The Background


Ron was born in 1913 in Farnborough, Hants. He had a fairly hard childhood: a large family in poor circumstances and a difficult and overbearing father. From a relatively early age he was effectively adopted by the Munday family, who were local newsagents. He eventually married Betty, the youngest of the Munday children, and spent all of the latter part of his working life at the Newsagents, together with Betty, her brother Bill and her sister Babs. Before that, the two of them had run various businesses in the Farnborough area, and with the exception of a brief interlude when Ron commuted to work in Surbiton, he and Betty were together 24 hours a day for all of their married life.

His only protracted period away from Farnborough was during the Second World War, when he saw service in the army as an officer's driver, going from North Africa, all the way through Italy, to Austria. He counted himself lucky not to have fired a gun in anger during all that time, although we do not know what he witnessed during the journey: he never talked about his wartime experiences.

He and Betty had three children: Tony, Mirella (my wife), and Philip.

When they finally retired from the newsagency (when Ron was in his 70's), Ron & Betty moved to Yorkshire – next door to us. However,Betty could not settle in Menston, and they returned to the Farnborough area for about six years.

Betty had begun to show increasing signs of ill health, and we were looking to move house, so after much discussion, we decided to buy a house in Otley that could be altered to accommodate them both on a permanent basis, with wheelchair access, etc.

Whilst this was in progress, Betty was diagnosed with a brain tumour. She was admitted to Ward 26 of LGI, and the tumour was removed. For six weeks, Ronnie sat at her bedside every day, but she never showed positive signs of recovery, and finally died of a massive infection.

So Ronnie started life with us in Otley without his beloved Betty for the first time in nearly 50 years. He established his own routine: over to the Supermarket for the papers, do the crossword, walk down the river to feed the ducks, helping with the housework, watching TV – particularly Coronation Street. He stopped driving after about 5 years, and gave up housework after about ten, but otherwise very little changed. We were just thinking – in 2005 – that at 92 he wasn't going to manage the walk to the Supermarket for much longer (particularly because of the difficulty of crossing the road).

Then everything changed.


In August 2005, Mirella was diagnosed with breast cancer. Two small lumps has showed up in the routine mammogram examination, and an appointment had to be made for their removal, as soon as possible. As we had a holiday booked, this was set for the week after our return, in mid September. After three days in Hospital, Mirella came home, and it was at this time that we first began to notice changes in Ronnie's behaviour. He didn't want to leave the house, often seemed withdrawn and distracted, and was exhibiting a facial tic which we had noticed before, but only infrequently. None of these symptoms rang any alarm bells – we assumed it was the effect of 92 years of wear & tear. In any case, we were all distracted from Ronnie's problems when Mirella's post – op tests proved negative and we learned that she would have to undergo a full mastectomy. This was duly carried out in mid October, and on her return from hospital, we realised that Ronnie had a serious problem. Apparently, he would go into a complete trance – he sat in his chair, with open eyes, without moving, unresponsive to any stimulus. Then, for no obvious reason, he would click back to normality. Over the years, he had become increasingly deaf, but now was showing hypersensitivity to sound. If we entered the room quietly and spoke to him in a normal tone, he would literally jump. The sound of the television disturbed him. He also complained of feeling threatened, but couldn't explain what he meant by this. He just knew that something bad was going to happen to Mirella & me,and that he had to warn us of this before it was too late.

We called the Doctor. After some head scratching she decided that the most probable cause was a small stroke, and arranged for Ron to see a consultant at LGI. Following an interview with a Registrar, the decision was made to admit him to Leeds General Infirmary for tests, since they had no firm clue as to the possible cause of his symptoms.

So he packed his small suitcase, walked to the car, and we took him to Ward 26 at LGI . He did not recall his last visit to this ward, & we did not remind him of it. He was placed near to the nurses' desk, as they wanted to keep him under 24 hour observation. Unfortunately,this meant that he was in the noisiest bay of the ward, with buzzers & telephones sounding 24/7. Every time the buzzer rang, he jumped – regardless of whether he was in a trance or not.

It was clear after a couple of days that his condition was worsening. He didn't want to walk to the toilet, started to miss meals, and showed no interest in reading the newspaper or watching TV. Fairly quickly, his movement was restricted to getting out of bed & sitting in a chair. Anything further required assistance. He was also causing problems because he was very reluctant to use the buzzer to summon a nurse – he didn't want to be a nuisance.

We were beginning to get more clues as to what was happening to him in the trance state. He was in Farnborough, and two sinister men were threatening him and us, using foul language and suggestions of physical violence. As far as Ron was concerned, this was reality, and the hospital ward was a dream.

We knew we needed to try anything we could think of to make him engage with our version of reality. Relatives & friends were contacted & asked to send cards at frequent intervals. We encouraged him to read them with us. We bought a big book of easy crosswords & bullied him into attempting to complete one every day. We tried to visit at mealtimes so we could encourage him to eat and monitor his food intake. Quite apart from the quality of the food, there was the major problem of guessing what he would like to eat the next day & ensuring that the request form was filled in.


{Second digression

What would the quality of hospital food be like if the doctors and ward staff had to eat it?

Is there any sense in sourcing the food for all Leeds Hospitals from Wales?

Why offer a wide choice when most of the dishes are profoundly unappetising?

Apparently, I was the only person ever to complain about the food in Otley hospital}


Meanwhile, the doctors were continuing their researches, and becoming more & more concerned as each successive test proved negative. They left no stone unturned – they even tested him for HIV/AIDS – but apart from some minor age-related problems they could not find any physical reason for his symptoms.

After a very tense discussion with the Registrar, who was mortified at their total lack of success, we had an idea. Perhaps there was a non-medical reason?

She did not disagree, & went away to speak to the consultant. When she returned, she told us that a psychiatrist would come to the ward at 1.30 the next day. Could we be there? Could a duck swim? After three weeks of watching Ronnie decline daily, we were willing to try anything.

When the psychiatrist came, he looked at Ronnie, held his hand and appeared to fondle it, asked a few questions, then said 'I think I may know what this is. I need to consult a colleague, & will be back in about an hour'.

An hour later, he returned & produced a hypodermic needle.

' I'm going to give him an injection. If my diagnosis is correct, he should wake up quickly & appear normal again.'

Sure enough, that is exactly what happened.


Ronnie had Catatonic Schizophrenia. The patient has two distinct states – the dream, or trance condition, and what we would call normal. For the sufferer, the trance state is what he would describe as normality (it's usually he, although some women have the condition). The usual experience in the trance state is some sort of hallucination, often threatening but sometimes benign. Hence Ronnie's sense of threat to him & us. A physical sign of the disease is rigidity or waxy flexibility – the patient's limbs can be moved into any feasible position & will then stay where they are put. Hence the handholding.: the psychiatrist's quick check for these symptoms. Other symptoms include unexpected physical movements – in Ronnie's case a facial tic – and hypersensitive or nil response to physical stimulus, sounds and visible events, all of which we had seen at times.

This is a condition normally seen in young men in their teens and 20's, or young women at a slightly greater age. Nowadays, the condition is rare at any age. Our psychiatrist had only seen one or two cases in his career, & thought Ronnie was probably the oldest person ever to be diagnosed.

In the old days, there was no cure for Catatonic Schizophrenia. The patient was strapped to a bed in High Royds or somewhere similar, and that was that. Now,we have ECT and anti – psychotic drugs, and the patient is able to live a normal life.

ECT used to be called Electric Shock Treatment, and had a very bad reputation, but now it's done under anaesthetic, and there's no problem with the procedure itself, but first, Ron had to be sectioned under the Mental Health Act so that treatment could go ahead.

He has been immobile for over a week, was catheterised and was losing weight – not that he had very much to lose – so we agreed that the treatment could go ahead as soon as possible, despite the known after effect of loss of memory – not that he had very much to lose.

In the event, the treatment was not at all traumatic to Ronnie. The only snag was that the three sessions took place at Seacroft Hospital, a five mile ambulance drive away. Probably because of the rigidity that is part of the condition, he found the ambulance excruciatingly uncomfortable, feeling the impact of every bump and pothole. The ECT had no side effect at all, though we had some difficulty understanding him when he tried to talk. The reason was non – medical: Ron in LGI, teeth in Seacroft, so they despatched a taxi to collect them.


{ Third digression:

ECT is a controversial technique. The idea is to apply an electric shock which will induce a seizure. It's a bit like using TNT to eradicate mice: it works, but the collateral damage may be unacceptable. What surprised me is that nobody seems to have a clue as to why it works. In this respect it has much in common with Acupuncture, Homoeopathy and other 'alternative' treatments. Alternative medicine has caused all sorts of argument and division in professional and media circles in this country, but ECT seems to be quietly accepted. Could this be because it is a psychiatric treatment, not a medical one?}



So we started a new chapter in the Ronnie saga. He was now on a minimum dose of an anti – psychotic drug, and was slowly returning to mental normality. Physically, he had a number of problems. He was likely to be catheterised for life, the psychiatrist did not expect him to walk again, the weeks of immobility had left him very weak, and he had lost a lot of weight. The chance came up of a transfer to a specialist psychiatric ward, but this could not be done because Ronnie was catheterised.

Physiotherapy soon got him moving again: enough to get out of bed and into a chair, but weight gain was a far harder problem. He was given various nutritional supplements, but the trouble was that they were even less appealing than the normal food. Ronnie just wasn't interested in eating, and who could blame him?

Mirella decided that it was time to play hardball. She told him that he had a simple choice: make an effort or die. He decided he wasn't quite ready to die.

We redoubled our earlier efforts to get him engaged: the crosswords came out again, the cards from family & friends kept coming, and I nipped out for an egg custard from Ainsley's if my mother hadn't made him a fresh one. We brought him as much food as we thought he could handle – snacks, sweets, savouries; anything we thought he might fancy. Slowly, a little weight came back, and we began to hope that he might be moved to Otley before Christmas. In the event, he was, but only just. We were all delighted to see the back of Ward 26. The staff had been great, but the place itself is not pleasant; nor could it be, given the number of patients it handles and the dire state many of them are in.



And so to Wharfedale. At least, we would save on travelling time, and Ronnie would be in a brand new hospital. Unfortunately, there would be a downside. For the first couple of nights, all was fine. He was in a single room and had a morale boosting visit on Christmas Eve from two young friends who played carols on their violins, much to the delight of Ronnie & of the Ward staff. Then, after Christmas, he was moved to the general Ward, to a six bed bay which at that time had four people in it. We soon realised that we had major problems.

Firstly, it quickly became apparent that Ronnie was losing things. We expected clothes to disappear; that is inevitable, but other personal items, even his spectacles & his dentures, also went. The cause was the man in the opposite bed. He appeared to be physically fit, was hyperactive and clearly had major mental problems, one of which was kleptomania. He should have been somewhere else, as he, the staff & the patients knew. Presumably somewhere else did not exist or was not available. In the mean time, a colossal amount of time & effort was wasted in tracking down missing property and trying to keep a watch on the man. After a couple of weeks or so, he was moved on, by which time everyone's patience had been exhausted.


Secondly, Ronnie had a mental setback when someone from the staff came without our knowledge or permission and asked him a lot of questions about finances, causing a great deal of totally avoidable worry and confusion.


Thirdly, we realised that we had to take strong action to prevent Ronnie becoming apathetic. He still wasn't interested in reading the newspaper, though this had been a major part of his daily ritual before his illness. There was a large television in the ward, but none of the patients could switch it on. After a couple of days and with some staff help, we managed to find something which interested Ronnie: snooker, his favourite. He didn't know who the players were, but clearly still understood the game. Now we knew that for at least a part of the day, he could do something other than stare at the wall.


I think I have mentioned before that Ronnie was very polite & unassertive, and was reluctant to ring the bell & ask for assistance from the staff. Frequently, he couldn't find the bell anyway. What we hadn't realised is that many other people are in the same situation, and can spend most of their hospital day in a state of near trance. This may not matter if they are there for a short stay, but it cannot be good in the longer term. This is an area where we as carers have to take responsibility. Staff just do not have the time, or the personal knowledge of each individual which is needed before any action can be taken.


But what action? In our case, the answer came accidentally. We were sitting in the day room waiting for the nurses to finish a catheter change, & I decided to see what was on the shelves. Amongst the usual books, magazines & videos was a box of dominoes. So we arranged ourselves round Ronnie's bed table & started a game. It was hard at first – he seemed to have forgotten how to count - but we kept at it, and the next day when we suggested a game, he was very happy to play. We had hit on a great idea. Not only was the game stimulating his thought processes, it was also encouraging him to use his hands and rediscover hand – eye coordination. Also, it was a truly communal activity (we encouraged his other visitors to join in), and most of all, it removed the need to find new things to talk about; essential after two months of one sided conversations.


We were summoned to an interview with the Doctor in charge of Ronnie's case, who told us that he would always be immobile and that we should abandon any thoughts of having him live back at home. We politely disagreed with this opinion and insisted that if it was at all possible, we wanted him back home.

Again, Mirella decided to play tough, and told Ron that he must walk if he wanted to escape from the hospital. Very soon, the physio and occupational therapy teams began to get him moving again, and by the start of February he could stand up and attempt to walk. The hospital wanted their bed back, and we continued to insist that we wanted Ronnie to come home. This he was able to do after some essential equipment had been delivered, the chief of which was a proper electronic hospital type bed.


Responsibility for Ronnie now passed to his GP team, who would be the first resource in case of medical emergency. In addition, the district nurse team would call once a week, mainly to check the catheter and maintain supplies. Then there was the basic care team on a twice daily schedule, for dressing, undressing, washing and toilet. Not to mention the mental health nurse, occupational therapists, social care and other supervisors. On one occasion, we counted seven visitors in one morning.


Amidst all of this, our main responsibilities were to empty the night bag every morning and to make sure he got his medication. We had no experience or knowledge of catheters, and it quickly became clear that everyone we encountered had a different right way of doing things. Still, we only had one disaster with the bag, and a litre of urine all over the floor isn't as bad as it sounds. After all, we used to have dogs. The problem was that the business end of the catheter was also causing difficulty, and during the first six months there were constant problems with catheters blocking and with infections. On two occasions, this led to an emergency drive to A and E at St James's. We took him ourselves rather than wait for an Ambulance, as it was clear that he was in considerable pain and that various body processes were rapidly shutting down.

As a result of these experiences, a new strategy was put in place. Ronnie was put onto a permanent antibiotic to try to head off infections, and we were asked to call the district nurses as soon as we suspected a problem, so they could do an immediate catheter change.


We became like medieval doctors at the morning bag inspection:

How much urine is there?

Is it a good colour?

Does it smell bad?

Is there a lot of sediment?

Does Ronnie seem more vague & confused than normal?


A negative answer to any of these would lead to a call – out, catheter change & possibly extra antibiotics. The strategy worked, and we had no further major emergencies.


Apart from the catheter problems, Ronnie was progressing well. Now that we had control of his eating and drinking, he was putting back the lost weight.


From the start of his return home, he was sitting in his chair during the day. We knew that this was not enough, and decided to establish a routine. We encouraged him to walk through to the dining room for breakfast and lunch. This was pretty hard work at first, mainly because he couldn't handle a Zimmer very well: he wanted to push it like a shopping trolley. Constant practice improved his strength and stamina, but he still tended to plough a deep furrow with the rear legs. Eventually he worked up to an extra six laps a day through kitchen, hall and dining room – a daily distance of about 120 yards. This was enough to enable him to walk with two sticks from the house to the car, which he found less tiring than getting into and out of a wheelchair, so after about two months he had achieved a degree of mobility which surprised all of us, although all movement had to be under close supervision.


We also needed to establish a routine for ourselves. It is vital for any carer in our situation to have proper backup, and to be able to take breaks.

We were signed up to the Leeds alarm system, which worked superbly. Fortunately, Ronnie was much happier using the alarm buzzer than he had been with hospital bells. We swiftly realised that the main benefit of the buzzer was during the night – we didn't need to worry about not hearing Ronnie if there was trouble, and didn't need to think of putting in a baby alarm or intercom.

One consequence of the alarm system is that we had to nominate a couple of sets of friends as backup in case we didn't answer the telephone, and they also acted as keyholders. We also installed a key box so the carers could have access if we were out. We were worried about this on security grounds, so I put the box on the inside of our bin store door. Apparently, this is very unusual: most people have them in full view next to the house door. Not a good idea.

The upshot of all this was that we were able to leave Ronnie alone in the house for a limited period: absolute maximum, four hours.

In addition, we arranged for someone to come in for the day every Thursday, and we went out for the day whatever the weather, like it or not. We were also lucky to be able to arrange cover by family members for holidays, four or five weeks per year.


{Fourth digression – which team are you on?

The Interim Care team is supposed to provide home help for two or three weeks after the patient comes home. In Ronnie's case this translated into two years. About six weeks before his death, a 'permanent' outsourced team was brought in. I think this demonstrates the basic problem of the NHS: too many trains on too many tracks, no signal boxes in the right places.

I cannot estimate the volume of case notes Ronnie generated. Presumably they were all useful to someone, somewhere. We have spent billions on NHS computer systems, but notes are still made on paper in longhand and are apparently the sole preserve of the department which makes them. If anyone is interested,we still have the care team's notes.

So far as I am aware , every NHS patient has a unique identity, and usually a unique NHS number. Some day, this could be the key used to access all of a patient's notes on computer – but not in the foreseeable future.

In the mean time, for your delectation and delight, I offer my best guess at who holds notes on Ronnie:

GP practice

LGI Ward 26, Gerentology Dept., Path Lab, Psychiatric Dept, Physiotherapy, Occupational therapy, Dietician

St James's A&E, recovery wards, urology nurse

Seacroft, ECT Dept., Urology Dept.

Wharfedale Hospital :Ward, Doctor, Physio, OT, dietician, social care

Otley Clinic, District nurses

Leeds psychiatric services, community psychiatric nurse

Leeds community care scheme (equipment)

Home care co- ordinator

Financial assessment

Intermediate care team

Twilight nurses

Home care team

Anchor nursing

2nd private nurse team


32 items in all


Plus one department which doesn't have good enough notes.

A month after Ronnie's death, a letter was sent to him by the Leeds Partnerships NHS Trust, purportedly from its Chief Executive. I quote:

'A questionnaire about health care at Leeds Partnerships NHS Foundation Trust was recently posted to you.

At the time of sending this note, we have not yet received your response.'}



For nearly two years, we were able to offer Ronnie a quality of life far better then he would have had in a residential home. Throughout that time, he remained cheerful and motivated: his only worry was that he was causing everyone too much trouble. One major highlight was a surprise visit from his niece, Carole, who he had not seen since her parents emigrated, more than 40 years ago.

Then, in the Autumn of 2007, it became clear that Ronnie was entering a final physical decline. He reached the point of being totally bedridden, and one final infection brought his life to an end in late December.

We knew the end was near when we called the GP because of an obvious change in Ronnie's breathing – continuous shallow gasps. The doctor immediately knew what this signified: one or two days left, at the most. Or they could try further treatment. We agreed with him that there was no point in doing anything more, and Mirella was able to say to Ronnie that he didn't need to struggle on. He seemed to accept this, and jut after midnight, he died in his bed, peacefully and without pain, with his family by him.

SUMMING UP



So that's it. End of story. Two and a bit years of roller coaster emotions, hard work, unexpected insights, and constant surprises.


Was it worth it? Without a doubt.

What did we learn? All sorts of things, some good, some bad.


Because we are all likely to be put in a situation where we are carers or patients, I would like to focus on non – specific areas where we can all make a difference. In no particular order, these are:





Plan the visit in advance

Establish a routine and stick to it

Try to leave the patient with something for the many hours when they are alone.


For us, this would mean some or all of the following:

Sort out food: find out what he ate when you were not there. (Ronnie didn't usually remember, so we read the notes). Fill in the order for tomorrow. Start to feed him some goodies from the bag.

If there are new cards from relatives & friends, encourage him to read them.

Do another crossword from the book, or start a game of dominoes, or read him a story from the paper - anything to encourage interaction.


of home care. If so, think and plan very carefully before saying 'yes'. Remember that you are sacrificing your own independence and that this could cause problems for other family members as well as yourself. On the positive side, having the patient at home means you don't have to visit, and that they can share in the normal daily routines of home life which are just not available in a hospital or a care home. As with Ronnie, there will probably be some distance to cover before a full recovery is achieved, and I am sure that in many cases this will be better done at home than in residential care.




This is a very touchy subject, even among believers, and I shall confine myself to three personal comments.

Firstly, the support of two Church communities was tremendously beneficial.

Just to know that we all were in so many people's thoughts and prayers was a great comfort and a source of strength.


Secondly, a personal prayer: 'Lord, make me gracious'. That's all: whether patient or carer, if I can listen well, be quietly constructive, not lose my temper, and believe that all will end well, all will be well. But it's a big ask.


Thirdly, this is all summed up in some of the greatest words ever written in English:

O Lord, support us all the day long of this our troublous life, until the shades lengthen and the evening comes, and the busy world is hushed, the fever of life is over , and our work done. Then, Lord, in thy mercy, grant us safe lodging, a holy rest and peace at the last, through Jesus Christ our Lord. Amen.

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