12.4.08
I feel so ashamed about my efforts to produce a month-by-month ‘diary’ – I’m blushing mentally to think of all my best intents. So to those of you who have been reading these lines, thank you for waiting – I hope I can bring matters up to date and see the saga through to the end.

I suppose that the reason for my lack of updates has simply been that N’s decline has been so gradual and so uninspiring (if that’s the right word) that there hasn’t been anything significant to write about.

So now I’ll have to try and go back over the past three or four months and try to pick up the threads….

Nov/Dec 2007
Time just dragged on with N getting very slowly weaker and more lethargic. She has now been put on Oramorph to add to her various medications. Needless to say it makes her sleepy….. In his own ‘selfish’ way, her husband cut down her daily ration because “she spends all her time asleep and I’ve got no-one to talk to”. We chastised him thoroughly and she returned to three doses a day. Her back is giving her quite a lot of pain, it seems. Without x-rays, etc, no-one is certain whether of not this is just from lying in bed or an effect of the cancer – hence the Oramorph which eases the symptoms.

N’s activity is now quite limited. Although she can still get out to the toilet, it’s obviously a considerable effort and not only that, because she’s so slow to get there, it’s usually too late by the time she does. So the commode is more commonly used now.

Christmas was a total non-event at their home. N wasn’t hungry and her husband ‘couldn’t be bothered to cook for himself’. We couldn’t do a lot to help as we had a house full over Christmas and we could hardly bring her over for the day or take her husband away for any lengthy period. Still, to many people’s surprise, she was still alive and kicking (well, feebly) at the turn of the New Year.

Jan/Feb 2008

From no particular date, N has started to become markedly weaker. She can be sat up in bed so that she can eat, but she has so little energy and interest in food that she only manages to pick up a few small mouthfuls before she sags back on the pillow. “Not hungry” she says. “Water.” And that’s about all she does for nutrition – and conversation. Just occasionally she seems to have managed to get a bit more down but I have my doubts. “She didn’t do badly today” her husband will say, “she had some soup and a slice of (brown) bread”. When I use the kitchen to make some tea there is always her soup bowl waiting to be washed – and it usually is still half full….and there’s probably part of a slice of bread left too. No – her food intake is really quite minimal now.

During this time, one of her carers over-optimistically managed to get her out of bed and into the kitchen to have her hair washed. But it was too much for N whose legs gave way beneath her. N’s husband had nipped off to the shops (while someone-else was there to keep an eye on N) and by the time he returned there was an ambulance at his door and the paramedics were busy loading N into the ambulance. The carers won’t try to lift someone from the floor, so an emergency call was all that was left.

In hospital they found that N was very chesty and actually did have a chest infection – so that was a five day stay guaranteed while they sorted that out. While in hospital N was encouraged to eat and she began to pick up somewhat. They managed to get her to and from the toilet and also into the shower. They pronounced her ‘much improved’ and ‘quite mobile’ but I’ve a feeling they were writing about someone else! They did some x-rays (but told us nothing) and decided, after a ten day stay, that she could go home again.

Looking through her medical notes once she was home I discovered a note saying “Ca Left Lung. Suspected metastasis (spreading – my note) to liver and spine.” Why didn’t anyone tell us? I mean, it was pretty obvious that the cancer was becoming more ‘severe’ but no one thought to mention their findings to us.

Back home things went back very much to how they had been. In her brief time in hospital N had slowly come to quite enjoy her meals but now her husband’s cooking didn’t appeal to her at all. Her carers were now increased to three visits a day and the District Nurses; Occupational Therapists (from MPH); Social Services; Cancer Nurses; the Nurse Practitioner and the Doctor were all now calling much more often. In a way one felt sorry for N and her husband as they were bombarded with callers from 8 am to 8 pm for one purpose or another. All very commendable but extremely tiring!

The doctor increased her Oramorph because her back pain was becoming a nuisance now. Because she was in bed pretty well all the time now and because she was incontinent, she was close to getting bed-sores and it was decided that she needed an air mattress. What she also really needed were some decent pillows – she was propped up on a selection of cushions that N’s husband had dug out from around the house. They were stained; old and dirty – when it was suggested that she needed some ‘harder’ pillows, he found two old grey and white stripy things that should have been thrown out some 30 years ago. They were revolting – and lumpy as hell. “They’ll be alright if I put some pillowcases on them”, he said. However, while the NHS (or whoever) will supply all else, they won’t help out with decent pillows and N’s husband isn’t going to waste money.

We noticed that she would only eat if it was ready to pop straight in her mouth. Given a sweet that needed unwrapping she would leave it. Given a piece of chocolate, she’d eat it. Her meals were now needed to be cut up before she’d make any effort to eat and occasionally N’s husband would feed her, but generally she was left to help herself from her place or bowl.

Towards the end of February, as N was being moved by two carers from her bed to her commode, her legs gave way again and she collapsed in a heap – and once again the ambulance arrived. They helped her back into bed and it was now pretty apparent that even getting out of bed was becoming a bit too much.

March 2008
On March 1st she asked for the doctor to be called as she was very short of breath. He called round soon afterwards and arranged for her to head into hospital again – her breathing was very bubbly and her condition left a lot to be desired. At MPH they found that one of her lungs has collapsed and that there was a lot of fluid, which they were going to try to drain off. She was given more antibiotics because her infection had returned and some blood because she was somewhat anaemic.

This time she was in hospital for a total of 26 days as they did all they could to stabilise her condition. The antibiotics helped; as did the blood and her appetite seemed to pick up. They stuck a patch on her bum – a slow-release medication to help dry up her lungs. They found however, that they couldn’t drain any fluid – that was actually the cancer spreading – and inevitably that was producing an area of dead cells which were becoming infected. So her infection would return again and again…..if she lasted that long.

While she was in hospital this time, it was decided that she needed a “Hospital Bed” at home and once again, N’s home was besieged by people bringing a ‘flat-packed’ bed; a new air mattress; a hospital style table; a new chair and a ‘slide’ to help move N up the bed. A load of new incontinence pads also arrived and as N’s husband had been collecting her regular weekly medication from the local chemists, there was a pile of boxes of assorted pills there too. During this time it was noticed that the wrong air mattress was on the bed – so a different one was ordered. When that arrived there was a real kafuffle – the wrong one had been ordered; then a double mattress turned up; then another one the same as the first one – and finally the proper mattress.

It was also recommended that some kind of home meals service should be set up. I thought that the old “meals-on-wheels” arrangement would happen – but no – that’s all over and ended, they were told. Instead, N and her husband were contacted by a company who provide frozen meals……together with their catalogue. The meals are around £2 per portion and you have to order at least two weeks worth in advance.

Now that’s all very well, but for an elderly, somewhat old-fashioned couple it was utterly incomprehensible. They didn’t really know what many of the meals were – and they weren’t really keen on a lot of the others…..and so their eventual choice left a lot to be desired. But £46 later they had half a freezer full of instant meals ready for N’s return home.

This is almost an aside to the main story but it has relevance. An elderly couple like those two, find that money just disappears. They often tend to live from day to day financially. They buy enough food for today; enough cigarettes for today; enough electricity (key meter) for a few days - maybe a WHOLE week; enough milk for today’s cuppas, etc. BIG bills are limited. The TV licence is the worst offender (until next November when N’s husband reaches 75) – that’s around £135. The next largest outgoing is a new gas bottle for their Calor gas fire (no central-heating, don’t forget) at £20, then perhaps a £10 top-up on his pay-as-you-go phone.

So to have to buy over £40 of food came as an almighty shock. It’s also something of an imposition…..I thought that the elderly were looked after by the State? Ok – N gets additional benefits (and so does her husband) but those benefits aren’t there just to ‘splash out’ on, what to them, are luxury meals. N’s husband doesn’t intend to buy any more……..

On March 26th, N was returned home. Now her carers had been increased to two calling three times a day. In the front room (where it all happens) there’s so little room to manoeuvre in their livingroom that two extra people fill it up, leaving very little working space.

I don’t think I’ve mentioned her living space…….
N’s husband is an inveterate collector. If in doubt – keep it. Because of his habits, all three bedrooms are filled with junk (God knows what it all is) – piled to the ceiling. The bathroom has become a storeroom because after N had been incontinent (both ends) several times on the piece of carpet on the floor it was too mucky to use. N stopped going upstairs anyway and so the carpet was covered up and bathroom became a store. For example there are now two armchairs in the bath……..

Downstairs, the kitchen worktops are completely covered with junk – dozens and dozens of bottles of shampoo and deodorants (N’s favourite items – second only after soap); piles of chipped, cracked and assorted plates (and pots and pans) that they’ll never use and heaps of mugs in similar conditions. The table is covered too – mainly with old medication boxes and more deodorants, etc. There is just about room to dish out a meal if you’re lucky. By the sink is the tea-making corner. Currently there are three chopping boards and a tray on top of each other to catch the slops and spills. As one gets dirty so a clean one ends up on top, etc, etc. When N was up and about and making her own meals and cuppas, her spillage was considerable and after perhaps a month or two I would be moved to tidy the place up. I would often have to pour boiling water on the half inch thick layer of consolidated sugar to be able to remove it with a blunt instrument. Personal cleanliness may have been important but domestic cleanliness didn’t (and still doesn’t) exist.

The lounge or front room contains, as you look in the door – a settee (which has been N’s husband’s bed for some twenty years) which reaches to the alcove beside the fireplace. That area is packed solidly with old paperwork – letters from the DSS going back 20/30 years; assorted junk mail; old papers; you name it. 99.9% complete rubbish. He had a clear-out the other day. My wife and I stared and said in disbelieving unison “What?????” “Yes,” he said, “there’s more room to put my glasses here now.” We gave up.

The fireplace is screened off because a) he refused to let the council put central heating in and b) he’s too lazy to build a fire (and too tight to get his chimney swept) – hence a Calor gas fire that runs pretty well all day. To the right of the fireplace the recess to the corner contains a sideboard (I’d hate to investigate its contents – filthy yellow glasses, mainly, I think) and piles of old yellowing videos. Then there’s a corner unit (which is so piled in junk that you can’t see it). Across the window is a long sideboard which supports the TV, video player, DVD player and Digibox (all the “modern conveniences” the house possesses, I think); a clock or two and a vase of manky flowers. Oh – and piles of junk.

The return wall holds a sideboard, a set of cupboards on top and then a display-fronted tall sideboard. And that brings us back to the door. Each and every square inch is filled with useless knick-knacks and stuff that should have been thrown out aeons ago! Or should never have been collected in the first place.

In the remaining space there is now N’s hospital bed; two small rickety tables for his cuppa, phone and ashtrays; the gas fire; a commode; and a hospital-provided chair. That leaves about enough room to turn round – but nothing spare. We despair of the problems we’ll face when he passes on……! Much as we’d love to strip the place clean, it would only be over his dead body, as they say….and as has been commented, you can’t make someone change their lifestyle.

Back to 26th March and onwards…..
N, having been returned home, now spends almost all her time asleep. The carers are worried about her pending pressure sores because N is always wetting herself but tells no-one. She should perhaps be checked hourly but her husband is reluctant to do so because he doesn’t like waking her up and because he’s rather squeamish (justifiably perhaps!) about putting his hand in poo.

Visitors are now coming thick and fast – carers and medical specialists continually, it seems. Some are useful…..the Doctor and the Nurse Practitioner from Victoria Gate Surgery are great; the carers do all they can within their limits and the Occupational Therapists try to provide all the ‘aids’ that N needs. Cancer Nurses call regularly but their care is more of a ‘social’ nature – there isn’t a lot they can do for N yet.

Her Social Workers, on the other hand, can be a pain. Their demands (for N’s environmental surroundings and conditions, for example) are often stupid and irrational. They persist in saying that N needs more fresh air and that N’s husband shouldn’t smoke in the same room. All very laudable….but she obviously doesn’t have many more months to live so why bother upsetting their home and why should he change his habits of a lifetime? They seem to simply mechanically analyse the problem and come up with THE solution – however impractical. Won’t go into all that…….

7th April
In the evening N was sick – not once, but several times over the course of the evening and night. The whole bed was soaked at one point but she was ok once she was cleaned up and once she had ‘got rid’ of most of the excess in her stomach. During the 8th she only took water but wasn’t actually sick – she had nothing left to vomit. However, she wasn’t feeling very comfy and began to complain of pains in her stomach and on Wednesday 9th April the Doctor was called. He quickly arranged for N to be taken back to hospital where she ended up on Ward 2 in the Old Building.

X-rays the following morning were unable to provide enough details and a CT scan was organised. In hospital they did the sensible thing – they gave her a catheter and a urine collection bag – and with nothing getting through her system, she was now dry for the first time in months. She was also fitted with a saline drip together with liquid paracetamol and a morphine pump.

On Friday 11th April, the hospital phoned and spoke to my wife. I happened to be just returning home from shopping when my wife was ending the call – and there were tears streaming down her face. I obviously thought that her mother had died quickly. Not quite. They had phoned to suggest that we should get in to see N soon as she might not last the weekend. So, dropping everything, my wife dashed off to see N’s husband and also phoned N’s son. I shut up the house and drove to pick them up and within an hour or less we were all at her bedside……. to find her quietly dozing away. Everyone sort of looked at each other saying “well – what on earth was all the rush and panic all about?”

The Ward Sister explained things. The CT scan showed that the problem with N’s bowel was a blockage and that the blockage was caused by the cancer that had now spread “very rapidly”. N is therefore now into her last few days of life. Possibly she may outlast the weekend but it just cannot be long to the end now and N’s life could end at any moment. Therefore the call, which seemed premature but which was a good safeguard. Also, in the event of her survival beyond the weekend, the hospital will have her moved to a Nursing Care Home – although that will depend on finding a vacant bed somewhere.

N is now pretty weak but is ‘comfortable’ in that she has no pain. She has a nasally-inserted bile tube as well now. She is sufficiently alert and aware to talk to us, even if there are often long blank spells when she just seems not to be there.

It’s very awkward to know the best thing to do. I guess we’re doing the right thing by leaving her in the nurse’s capable hands. Sitting beside the bed of a listless, sleepy patient isn’t exactly an exciting thing to do and her husband isn’t into doing all-day vigils, etc. So, having informed all her relatives (not all that many – my wife and her two children; her brother and girlfriend and my wife’s daughter and boyfriend) we can only arrange to visit daily until we hear otherwise. The hospital have promised to phone if anything changes – although their call could easily be to say that she’s passed away. If she does die without us being there she won’t notice our absence in her heavily drugged condition.

Once again I’ll divert for a while onto ancillary matters. What a lot there is to get done once someone dies. Fortunately (or unfortunately) it happens continually and so there are many well-planned guides to such events. Initially I am the one who is going to have to do all the arranging and paperwork, etc because N’s husband, as I said ages ago, is only semi-literate and is the original dummy with phones. Once I considered everything that needed to be planned I began to mentally panic but a meander through the internet brought me back to normality.

Virtually everything happens to a set, pre-planned but flexible order. The Doctor does his bit – the death has to be registered – the funeral parlour chosen…..and each ‘expert’ in turn will provide the necessary information and paperwork to lead to the next phase.

In this particular instance the only good (and bad) thing is that there is no estate of any kind – not even an Insurance Policy! Therefore there’ll be no problems over her will, for example……but on the other hand I will have to do all the paperwork to apply for a Funeral Grant payment.

So today, Sunday 12th April is another waiting day – another visiting day, later on. At least the end is now in sight and N’s suffering and discomfort will soon be over.