Lovely warm day on Saturday and Adrienne and I did Tai chi with Chi – on the banks of the canal.
How wonderful Skype is; my eldest son and his family live in Hong Kong and I only see them once a year. We used to keep in touch by phone once a week, but you know what anathema that is for kids – then there was the cost to consider as well – and as a consequence the calls were short and sweet.
Three years ago my youngest grandson was born and he was one year old before he met me. I was a complete stranger to him and he was only just getting to know me when they had to leave. In the meantime we got Skype and that has changed my life. I spend just less than an hour with them every Sunday and it is as if we are in the same room. They just get about their normal business, coming and going, chatting and playing games with me and in the background I hear the little one’s voice, ‘Grandma, Grandma!’ – and then the top of his head appears on the screen, bobbing up and down like a demented Muppet until someone picks him up.
Last Sunday was simply the best. My eldest grandson noticed I was online and called me early. I had arranged lunch to accommodate the hour change in BST, so that the call wouldn’t clash with our lunch and their evening meal. As it was, I received the call when our lunch was in the oven and would soon be ready. Thousands of miles away my daughter-in-law was about to produce their meal and it seemed that we would have to hang up and speak later, but she said they had a cooked lunch, so the evening meal was just a snack and so they could all sit around the computer with it. I hurriedly went and gave my mother her meal and brought mine to the computer, complete with glass of wine. They had wine too and there we sat, face to face, eating our meals just as if we were looking over the dinner table. It was magic and the call lasted for about an hour and a half. I really felt I had dined with them, so thank-you Skype!
Nice surprise last night – received a message that my painting, ‘Lunch at the Natural history Museum (Darwin Ponders Evolution)’, is now on the magazine cover. It was September last year when I was asked, so I had completely forgotten about it.
When, on the doctor’s instruction, I asked at reception if the District Nurses might contact me regarding incontinence pads for my mum, they said it would be at least two weeks before they would get in touch (I did wonder how this might be helpful when it was now that Mum was suffering from diarrhoea). So imagine my surprise when two days later I was just about to go to my Thrivine Trustees meeting when there was a knock on the door and when I opened it a woman barged right in.
‘I’ve come to see your mother’, she said, curtly. To which I replied, trying to muster a smile, ‘and you must be the district nurse?’ With no further introduction she said, ‘I came yesterday, but you were out.’ Then, turning to my mother accusingly, ‘Were you out?’ Mother looked blankly at her as I said, ‘Yes, we had to attend an appointment at the hospital – Stroke Clinic! I wasn’t expecting you, at the doctors’ reception they said it would be two weeks before I would receive contact from you – and I’m just on my way out for an important meeting. Had you phoned me I could have arranged a mutually convenient time.’
Totally undeterred she produced a piece of A4 paper – a ‘Bowel Habit Diary’ and instructed me that I must keep this diary for two weeks, noting the time of bowel movements, whether or not lots of toilet paper was used, if the underwear was marked and the consistency of the stool using the Bristol Stool Form Scale ‘What is the Bristol Stool Form Scale?’ I asked innocently. She seemed astounded at my ignorance and said she would get me a copy from the car.
I explained that I felt (hoped) mum’s incontinence was entirely due to the gastroenteritis and not a normal event. Again she looked at me accusingly – ‘so you don’t want to complete the form?’ I gathered by the tone of her voice that it wouldn’t be prudent for me to decline, so I meekly took the form from her. (You may be picturing this nurse as a big old battle-axe, but not so – she was youngish and even smaller than me, which would make her less than 5ft).
To try and ease the tension I explained the situation over recent days and the fact that I though Mum also had a urine infection, but I had been told I must wait five days for the result. ‘What?’ She scoffed. ‘We would done a dip-stick test right away!’ ‘That’s what I was expecting,’ I concurred. ‘Ridiculous!’ and with that she left, muttering. I ran bare-footed out to the car to remind her that she was to give me the stool chart. With no time to look at it I made a mad dash to my meeting.
Looking later at the Bristol Stool Form Scale, I fell about laughing. ‘Who would be a graphic designer?’ I thought. There are seven types of stool depicted in the illustrations, ranging from ‘Separate hard lumps’ through to ‘Watery, no solid pieces ENTIRELY LIQUID.’ Speaking as a once graphic designer/illustrator, I have had some uninspiring things to draw, but none so shitty as this. Then I noted that it was reproduced by kind permission of Dr KW Heaton of Bristol University and I became full of admiration for him/her. From these illustrations I was able to easily identify Mum’s stools for the following two weeks. The form given me by the nurse was far less easy to use – not allowing enough space for the many times Mum passed a stool on some days and under the heading ‘Did you mark your pad/underwear,’ I found myself writing ‘No – floor, yes,’ or ‘wall yes’, but that’s another story… .
I’ve seen enough of the trials and tribulations of life (and death) to know that in the grand scheme of things, my few days beginning on 4th March were nothing of significance, but as a shit few days go – literally (and this is from someone who has had colo-rectal cancer, so knows everything there is to know about shit), I have hardly known worse.
Mother was awake all night, pacing up and down – up and down, in and out of bed, backwards and forwards seemingly never ending. After continually getting out of bed and finally losing count, I put my head under the duvet, trying to block out the noise of the creaking floorboards as the pacing continued. BIG MISTAKE!
When finally I surfaced after maybe an hour or so of sleep, I heard Mum downstairs, still pacing. I crawled out of bed and as soon as I opened my door I realized my error as I was greeted with the smell of excrement. Then I saw the trail – all across the landing, into the bathroom, over the mirror, the radiator the floor, the toilet seat, hardly a surface untouched. I backtracked to her bedroom and just outside her door was the pile where it had first begun. She had done it on the landing and walked in it, gone to the toilet, then walked back to her room and climbed in and out of bed – it was everywhere. Then I followed the trail downstairs, all over the stair carpet, across the floor, into the kitchen and back into the living room, where I even found it on mum’s tray at the side of her chair.
My first thought was that she was ill, but when I investigated the origins on the landing I realised it was just the normal consistency indicating her very healthy appetite – big appetite = large dump! Followed by size seven feet tramping through it, then hands trying to wipe it off.
Firstly I had to get her back upstairs to the bath, but I couldn’t ask her to sit down so I could wipe her feet (white sofas), neither could I get her to balance on one leg without her grabbing hold of something with her shitty hands. As the floor was already soiled I took the lesser of the evils.
Back in the bathroom the big clean up began by me helping her into the bath, stripping off her nightie and hosing her down with the shower, then getting her dried and with great difficulty got her back into her bedroom, trying to avoid the dollops on the floor. As she was getting dressed I set to – on my new carpets (in preparation for marketing the house) with water, disinfectant and a scrubbing brush. I had viewers coming round at 6pm that evening!
Mum was due to go to day-care between 9am and 10am, so decided that she wasn’t ill (with the ‘normal’ dump) and I would be better fixed if she was out of the way, so that I could scrub the rest of the house and dry the carpets with a hairdryer.
She ate breakfast as usual and off she went as I got back to the task in hand. I popped out to buy more cleaning stuff and when I returned there was a message on the answer machine. Mum had vomited, so could I go and get her!
She was looking rather jaded and they kindly gave me a washing up bowl in which to collect any vomit on the way home!
Having lived in Africa and gained knowledge of all kinds of gastroenteritis, I was aware of the necessity for rehydration. Fortunately I had some rehydration salts in the cupboard, so started these immediately. Within the hour they were back, together with copious quantities of pea green bile! Fortunately this was collected in the bowl and I was able to continue with my scrubbing.
Job finished I was just heaving a sigh of relief when the diarrhoea started, leaving a trail back upstairs to the bathroom covering the area I had just cleaned. And so the day progressed with me finally having to bite the bullet and go out to buy anti diarrhoea pills and incontinence knickers, dreading what I would find upon my return.
By 3.30 I had no option but to phone the estate agent and cancel my viewers – and back to the scrubbing again. It was no wonder that by now my knees and back where killing me, the latter not least caused by having to heave mum in and out of the bath. She is taller than me and considerably heavier.
As I got her off to bed that night I suggested she carry the bowl with her with me following her up the stairs to steady her. She refused the bowl, saying she was now okay, but as she reached the next to the last step she threw up all over the newly washed carpet! So it continued till late into the night. Just as I was making my way to bed I noticed my clean washing, which had been airing over the stair rails on the landing – every item daubed with shit, so it was back downstairs to the washing machine!
Friday morning things had subsided and a friend phoned and invited me out to lunch. I had to decline, explaining the circumstances. Nevertheless he decided to come round here, armed with sandwiches from M&S. As instructed by the pharmacist I just gave mum a light lunch of chicken soup.
That evening another friend phoned, saying after work he would be doing a job nearby and would call in with a kebab. Again I explained the circumstances, but he insisted on calling albeit without the kebab. We just had a cuppa and he enjoyed my vast array of nuts, but I was increasingly starting to panic when I realised I wasn’t interested in the nuts. Sure enough, I went down with the virus later that evening. I just hoped my guests would be okay.
As I started with the diarrhoea and vomiting, so mum started all over again, the difference being that I was able to contain mine. However, there is nothing quite so repulsive as clearing up other people’s mess when you are feeling totally ghastly! The incontinence pants had been a good buy – until Mum, without my knowledge, took them off in the middle of the night and as a consequence I had another trail if shite to deal with. By the Sunday we were starting to improve, but I was totally shattered.
Monday – no shit, but I had decided not to send Mum to day care and let her sleep in. When she finally emerged she was talking gobbledygook – a sure sign she had a urine infection. It could be a mini stroke, but I had lots of experience of TIAs with my dad and these symptoms were different. I determined to phone the doctor’s surgery next morning, so long as the gastroenteritis had still subsided.
Tuesday 8.15, mum was still in bed so I phoned to make an appointment for 2.30pm. Mum eventually got up and horror of horrors it started all over again. How could I take her to the surgery with diarrhoea and vomiting – risking infecting everyone – clearly it was a very virulent virus – and what about the mess? I had to call for advice. I explained the situation, saying Mum had an appointment for 2.30 – with regard to the gobbledygook, but in the meantime the gastroenteritis had resumed and I felt I shouldn’t bring her. The receptionist said I was a bit late in asking for a home visit. I countered that my mum was 92 and I couldn’t let her go on like this so I would take her to the hospital. With that she said she would put me on the list and the doc would be starting his home visits in about an hour. I thanked her and hung up.
Minutes later the phone rang – same receptionist. ‘You already have an appointment at 2.30, you can either keep that or wait for a home visit tomorrow!”
‘I know I have an appointment at 2.30, but with Mum starting with the screaming shits again I didn’t think it wise to bring her to the surgery’. She assured me it was fine, so off we went at the appointed time – complete with bowl!
The doctor was very efficient, covering all angles and I told her that in my opinion it wasn’t a TIA but nevertheless she arranged for Mum to see a consultant. She also agreed it might be a urine infection and instructed me to collect a sample bottle from reception – also to speak to them about asking the district nurses to call, with regard to incontinence pads. As for the gastroenteritis – just let it run its course.
I did as I was instructed, collected the bottle, took Mum home and with great difficulty and a crushed hand, I managed to get a sample, which gave me no doubt mum had an infection as the urine was bright orange. I immediately returned it to the surgery, where the receptionist told me to phone in about five days for the result. Five days! What good would that do? This kind of infection really knocks Mum back and it takes ages (or maybe not at all) for her to recover from it mentally.
The Stroke Clinic phoned with an appointment the following day – how efficient was that! Not that anything was done except blood pressure & blood test (for which I still haven’t had the results).
I actually phoned the surgery on the Friday afternoon regarding the urine results, but no luck. Phoned again on Monday, Tuesday and finally on Wednesday I was told the results of the urine sample were back, but not yet been looked at and I was to call again the following day. I phoned just after lunch and received a recorded message telling me the surgery was closed for training. It was Friday before I got the results – 10 days after taking the sample – and guess what – mum did have a urine infection!
Late Friday afternoon a few weeks ago, a friend phoned and asked if I was doing anything later that day, as he and his partner were thinking of coming round to visit. Aghhhhhhhh! I needed to irrigate that night and didn’t have time to do it before their arrival and as they would probably leave late it wouldn’t allow me time afterwards, so I just had to say why it wouldn’t be convenient. I usually invent some reason; ‘just about to go out; in the middle of some casting; Mother not well’ – whatever, but after 20 years I’m running out of excuses, so decided to come clean.
How do you explain to someone that you will be in the bathroom for well over an hour (and maybe a lot longer) ostensibly giving yourself an enema? It may be successful at the first attempt, but invariably not. The theory is that you will infuse your remaining bowel (via the stoma) with 750 – 1000mls approx of warm water. Easier said than done! Sometimes it goes smoothly but usually not. The remaining colon sometimes snakes around (seemingly tying itself in knots) and won’t allow the water to enter and if you suffer from wind this will cause an air lock. You need to allow yourself plenty of uninterrupted time. Again, easier said than done! I like to allow myself at least an hour and a half.
After you have successfully infused the water, you wait with trepidation for the eruption. Alas this doesn’t always happen and you wait and wait – and wait. Hopefully you will get there in the end, but sometimes you feel uncomfortable, still bloated and in fear of seeing anyone, just in case there is another eruption of which you have no control.
During this time the phone might ring – or you hear a persistent knocking at the door. The caller assumes you are in because the car is outside and so begins to knock louder. Mother might open the door and allow them in, but you are stuck in the loo and daren’t come out. I usually double lock the front door so she can’t open it, but the person knocking can see her through the glass and invariably thinks there is a problem and might just go for help. This is all SO stressful and not conducive to a successful irrigation!
Recently I took the phone into the loo with me (mistake). It rang and I saw the caller was Adrienne. Fearing a crisis I answered to find it was her son. He had forgotten to buy washing-up liquid and didn’t feel like wandering down the road to the Co-op to get some – could I lend them a bit. Groan – ‘give me a few minutes’, I replied and he said he would be round in five. I hastily tied myself up, got the washing-up liquid and waited anxiously by the front door, with my hand poking out and hoping Mount Vesuvius wouldn’t erupt. 10 minutes later I was still there, getting more and more anxious. Eventually I had to call him and ask if he would come NOW!
Back to the headed caption – ‘especially if Mother had dementia.’ Before commencing my irrigation I always make sure mother goes to the toilet first, in the hope that she won’t interrupt me. Well that old chestnut comes to mind – ‘live in hope, die in despair’. And surely I will, because Mother just can’t leave me in peace – she has to need the loo – even if she doesn’t (if you see what I mean), but I just can’t risk it, for indeed she may need the loo and if she can’t get in, she just might go and do it somewhere else – and indeed she has done – on the landing – in her bedroom and even on a towel in the kitchen and then hidden it in a cupboard! It’s a shit life in the literal sense of the word.
So there my friends is the down side of irrigation, but nevertheless it beats the other methods I’ve tried and for me it has been a lifesaver. Not only that, my supplies come with wonderful red or orange pegs which I use to decorate my clothes – see example on my Trafalgar Square ‘Plinth’ photos, especially the one where I appear to be hanging.
To summarise – it is very difficult in doing anything spontaneously if you irrigate. Because I don’t eat copious quantities of food, I only feel the need to irrigate every other day, so try to arrange my appointments around it. In other words, it is difficult when invitations fall on consecutive days. I hate staying in other people’s homes and it is awkward when I have visitors. Life would be simpler if I were a recluse, but by nature I am gregarious, though Paul wasn’t a party animal, so I suppose I got used to a quieter life. Since he died I think I would prefer to keep my head below the parapet, but my friends won’t let me!
(Apologies for the long delay in getting around to writing this blog – it’s been a very traumatic time. In fact another shit time, which I will document ASAP).