27th January 2008 - Gwyneth is gone

Gwyneth is dead. I know that I didn't really predict her death - I know that it's merely a coincidence that I thought "Gwyneth will be next" and she was. I know that statistically I would eventually be right. But it's a weird feeling.

I would really like to go to her funeral - when did I get to be the person who would genuinely say they'd like to go to a funeral - but it's my last day at work and I won't be able to.

I'll send James a sympathy card. Sympathy cards are weird things. What does the bereaved person do with them I wonder - do they display them like birthday cards, do they read them even?

20th January 2008 - Ellie's 4th birthday

Went to see Dad in the morning. It was Ellie's birthday and a few rellies were coming to the house to see her, eat party food and drop off pressies. She'd opened all her presents from us in the morning and was duly unimpressed with each and every one of them, in the way that only young children can be - hugely enthused with "the best thing ever" one second, then the next completely oblivious to it.

When I went it I noticed that it was quiet, and had that feeling you get when there's something missing, something you can't quite put your finger on. Dad was ok, he seemed in reasonable spirits and not in any discomfort. I sat beside him but we weren't really conversing, he couldn't communicate, couldn't find the right words and knew he wasn't making sense, so he stopped. I couldn't shake the feeling that something was amiss. Looking round I noticed Annie's chair was empty. One of the housekeepers came hoovering past me and stopped to chat. Annie was dead. She'd gone the night before. But she told me Donald had died too - and then I noticed his chair wasn't empty but it was being sat in by someone else - it was that that had been niggling at me, that had been the itch I couldn't scratch. Donald wasn't there, his chair was being sat in by Tam. Donald was dead. My thoughts raced to Susie. Busy, bustling Susie. Friendly, cheery, devoted Susie. I remember when he first started living in the home. He was mobile then and could talk. He fell on the floor beside me once and I tried to help him into his chair. I struggled and struggled but couldn't lift him. He got so upset when Susie left - he thought she'd left him and wouldn't be coming back. Every day, every time she left, he'd weep like his heart was breaking, wailing for her. And she clearly adored him. Even once he couldn't walk, and couldn't talk, she'd be there every day - fedding him, chatting to him, massaging his hands and bustling.

Gwyneth will be next I thought - and caught myself doing it - why did I think that, what a thing to think! I looked over and she's still there, still twisted in her chair.

Amy toddled past, in a foul mood, cup of tea drooping in one hand. "I dinnae ken wit yer buckin' staring at, ye glakiit big lump" she said to me "Can you no away and dae sumthin useful like make me a cup of tea or fuck off" and she shook the tea cup at me. "Sure Amy, no problem" I said as I, rising, kissed my sleeping Dad. I took the cup and made her a tea. She was no where to be seen when I came back, so I went looking. She was in the quiet room when I brought her the tea "Oh, thanks luv. That's awfy kind of ye. Yer a good lass, I'll no hear a wurd against ye". As I walked away she shouted after me "Are there no buckin' biscuits in this shitehole now or are you just to buckin' stupit tae find them?". Ho hum.

17th January 2008 - Is it Noro or novo ?

Well? Which is it? If you google either you'll get information about puke and diaorrhea.

I think it must be Norovirus because there are more hits for Noro than novo.

Apologies, then, for my past two posts - but you'll have got the jist - or is that the gyst.

The home phoned yesterday to let me know Dad had 'sat on an invisible chair' again and had been found on the floor. No-one saw him fall. Did he make a noise?

One of these days he's going to break something falling, a hip or a leg. Poor old soul - I hope someone notices and he doesn't try and walk on a broken bone. Why can't they have CCTV in the shared areas of homes? Even just from a security point of view - wouldn't it be better to know that any bullying by staff or by residents would be recorded. It would be safer for staff and a comfort for relatives.

I feel a suggestion to the management coming on..... now to think of the reasons they'll come up with why it's impossible and have some counter arguments up my metaphorical sleeve.

14th January 2008 - Novovirus 2

I went to see him yesterday. Ellie had been very sick on the Friday night - the day I'd been in to see him. We'd had plans for the Saturday and Sunday but they'd all unraveled as she needed to be kept away from other people and to be coddled a bit.

When I went it I was met by big signs alerting visitors to infection control measured being in place, and my hands were duly squirted with antibacterial wash. The day room was virtually empty. Each of the residents that had been ill and who could be kept quarantined, was. Some of them it's impossible to quarantine because they wander and short of locking them in their rooms, which is distressing for them, or restraining them, which is illegal, or sedating them, which is ineffective in the case of projectile vomiting and diarrhea, there's nothing that can be done. Ina - who was one of the worst affected - was wandering but she was over the worst of it.

Dad was very grumpy. He'd been unaffected by the virus because he'd been in bed after his turn when the chaos was happening. He didn't know who I was - even after I called him Dad there was no recognition in his face. He was irritated by me sitting beside him looking at him and got up to go. I asked him where he was going "to the Cemetery" he replied. He wandered off towards a member of staff, with me trailing along behind trying to get him to come and sit down. She persuaded him I was a visitor for him, his daughter, and although he didn't seem convinced he came and sat beside me. When I spoke he looked beside me, making eye contact with an invisible someone and nodding at there conversationm unresponsive to mine. I brought a newspaper, made him a cup of tea and started to tell him about the football of the previous day. He lifted one of the lighter supplements and tried to drink it. He wouldn't be told that it was a newspaper, that his tea was beside him on the table. His face was blackening with newsprint. I took the paper away and lifted the mug into his hand - but as he didn't seem to have any notion that it contained liquid that he was about to spill in his lap I tried to take it away again. He wouldn't give it up but he wouldn't hold it straight. Impasse. I went to get one of those table that you can push under a chair - they are often used to pen someone into their chair if they are likely to get up but shouldn't. I pushed it in and his arm down to rest the cup.

He fell asleep tired of me and my strange tea ceremony. I left. Later that night I started to feel a little unwell. Much later I was crouched, holding my hair out of the way in one hand and cuddling the porcelain with the other. Much later I was lying on the bathroom floor, too tired and drained to move, my ribs aching from the force of wretching, my throat sore and the prospect of diaorrhea to come looming large in my mind. I snuggled under the bath mat and thought of those poor souls in the home who must have felt like this, but without the knowledge of what was happening, without the comfort of knowing it wouldn't last for ever. And my wee girl, she must have felt her stomach cramping like this. Wee scone. I lay and hoped that Mark didn't get it - or Sean. So I got up and started disinfecting every surface I might have touched - in between doubling up and retching that is.


God I hate being ill. What's the point of being off sick from your work if you actually are sick? It sucks. You can't even cheer yourself up with a jam doughnut or a theraputic bacon roll. I could never have been bulimic. I really hate being sick. It's raining, Ellie's off too so I'm stuck in CBeebies hell without the lifeline of tea and biscuits. Woe. In the Night Garden is on. It's one of my least favourite. I eventually warmed to the Teletubies, but Igglypiggle, Maccapacca and the gang really really get on my tits. Woe woe woe.

11th January 2008 - Novovirus

I'd just been reading on the BBC website that the average life expectancy after diagnosis of a dementia sufferer is 'only four and a half years'. I was feeling vaguely guilty for reading the article - both because I was at work and because of the mixed reaction I had. Dad's diagnosis was almost 4 years ago. I wondered about the use of the word 'only' in the article - why 'only' four and a half year? Yesterday there had been an article about some wonderdrug that could reverse the effects of Alzheimers. But Dad doesn't have Alzheimers, I reminded myself. His dementia is different.

Just as I had finished reading and wandering down and back up my various tangents of thought that it sprung forth in my head, my mobile rang. My phone never rings. So infrequently does it ring that I'm never sure it's mine because I'm not familiar with the ringtone. I'm one of those dozy women you see in the supermarket, holding her handbag to her ear and going "Is that mine is it?" then scrabbling amongst the tissue fluff and crusty unidentifiables to see the "1 missed call". But today it was sitting beside me on my desk, illumiating the name of the home and playing it's unfamiliar tune. When I answered it, it was Karen. Karen's lovely. She really cares about Dad and knows him well. She seems genuinely fond of him and even if that is an act, at least she puts that act on. She told me that Dad had fainted. The doctor had seen him and was happy that's all it was, but Dad was in his bed and I should be told. It was just after 4, so I could leave work without comment. The home is on the way to the day nursery were Ellie miserably spends her Monday's and Friday's before telling me "I wish you didn't work Mum, and could be with me. I hate my new nursery, I've no friends and it makes me sad" - no pressure there then. Anyway, I told Karen I'd be in in 20 minutes and left work.

When I got to the home, and opened the door into the foyer shared by Dad's unit and the unit below his ( it's a two storey building ) the smell was almost palpable. It hit you in the face, in the eyes, in the back of the throat. "Jesus, someone's not well in the downstairs unit" I thought and opened the combination door into the inner foyer that leads only to Dad's unit. The smell didn't disappear, but I assumed it had just wafted in with me. As I climbed the stairs, though, the smell was strengthening. My eyes were watering and I was starting to gag. Through two more doors and I was inside. Retching. Staff were flurrying about, either ashen faced or red and blustery, all either donning or removing disposable plastic aprons and rubber gloves. "It's Ina this time Mags, in toilet 4 - all up the walls an aw. And Preti's needs help wi Tam, he's barfed over Agnes and she's no happy" said Francine as she scuttled past "Hi there Jeanie, it's a nice place in here today eh? 20 out of the 40 of them huv that novotel virus - puke and shite everywhere and I think I'm coming oot in sympathy oany minute".

I have a friend who's child has always produced - regardless of food input - the worst smelling wind and excrement I have ever encountered. The child's seemingly angelic face masks a body that manufactures noxious poison. Once, when tasked with baby sitting, I needed to change a nappy. At first whiff I thought I'd put it off - her mother would be back in 20 minutes after all. But it worsened, and there was no way I could suggest I hadn't noticed when she came back. Indeed when the mother herself did come back, with the offending article disposed of outside, the windows opened and the air artificially freshened, she was still incredulous as the strench. So, change the nappy I did - I gagged, I retched, I held my breath and at the time I thought I'd smelled the worst smell I'd ever smell.

I was wrong. Each resident that I passed seemed to bring a fresh onslaught of smell. The incontinence pad is not particularly effective in hiding the smell of pee, but at least it copes with the pee itself, it absorbs it and stops it from escaping. The incontinence pad is not designed to cope with diaorrhea. Especially not diaorrhea that is projected. I only saw one resident have an episode but it would appear that the bouts of diaorrhea are accompanied by a stomach spasm, and a huge burst of gas then projects it out of the body. No inconitence pad is a match for that. It requires an immediate shower and change of everything from the waist down.

It really was like a battle ground. The residents didn't understand what was happening to them, some were embarassed at sitting in their own excrement, some were trying to examine it, some were trying to get to the loo and some, like poor Agnes, where sitting unable to move as the person next to them threw up. It must be very frightening, very bewildering.

Dad's room was a welcoming haven to me that I doubt he's ever felt it was to him. He was lying in bed, securely tucked in. The room was dark and his TV was on. He was sleeping, grey in the face, small and frail looking. I pulled up a footstool to his bedside and sat down. It didn't really register to me that I'd put the chair on the pressure mat, and although I noticed the light on the alarm on the wall, I didn't connect it with my actions. Dad woke. I spoke to him but when he spoke he wasn't coherent - he made no words, just noises. He slept. I was thinking of leaving when he woke again. He realised someone was in the room, that it was a visitor, for him. He roused himself a bit and managed to say a few words. I quietened the TV and tried to understand him before giving up and asking him how he was feeling. He tried to tell me, but looking at him was more information than any words he managed to give me. Karen came in to cancel the alarm my chair had set off and told me more direct information. She said he was looking a lot brighter, and I wondered how bad he must have looked before. She left. Dad's eyelids drooped, almost closed and his eyes rolled from side to side underneath them. I had a huge sensation of deja vu - we've been in that room after he's fainted before and his eyes have typewritered back and forth under his lids.

"What time is it?" he asked. I was surprised he managed to ask. "It's almost five Dad" I replied. He expressed surprise. "If you ask them, they might make you a cup of tea" he said. "Not for me Dad, they're very busy out there and anyway I can't really stay, I need to pick up the kids and get home and make the tea" I started to tumble out excuses, any reason to avoid going back to those smells and sights. "I meant for me" he interrupted. It was the most coherent back and forth interaction of conversation we'd had in weeks. He had said something, I replied, he understood, he understood and followed on, I replied and he understood, corrected and made his meaning clear. I was really pleased. "Sorry, Dad. I'll make you a cuppa, don't worry. You stay here" I said redundantly "and I'll be back in two ticks".

A deep breath, and I lunged through to the kitchen, made tea and tried not to breath.

Dad drank his tea with alarming speed considering the temperature of the liquid, but he seemed to enjoy it. His lucidity had left him, though, he was back in his fug. "Cheese, cheeser, cheesly. Carmon isn't it? Or actually, point of fact, it's chchchonber."

I left soon after, with a kiss to his cheek and a promise to visit tomorrow. When I pick up Ellie she's pleased to see me and cuddles me loads. We go to pick up Mark. We go to M&S to order a birthday cake for Ellie's 4th birthday which is coming up. And we go home.

A few hours later, I hear Ellie shouting from her bed. When I go in I smell a familiar smell and see she's surrounding by piles of puke. Hopefully she'll not get diaorrhea too. As I calm her and clean her and tell her not to worry, my mind races ahead to mentally cancel the following couple of days events, replanning the weekend to ensure we don't carry infection to anyone. At least she'll be through it by her birthday. She'll be better by then. Should I stay away from Dad tomorrow I wonder? He's already surrounded by some kind of vomiting bug, if it's the same one surely it won't harm if I go in? But if it's not the same bug will I make things worse? Or am I just looking for an excuse not to go back in?

9th January 2008 - What me, with my reputation?

I don't often go in to visit in the evening but I did today. I knew I had a busy weekend coming up - there was a family do in Sean's lot that we'd have to go to, ballet for Ellie, shopping for a variety of birthday gifts, and all the usual preschool, prework preparations - washing, ironing, housework crap. So, anyway, I thought it was unlikely that I'd make it in both Saturday and Sunday so I thought I'd better see him when I could.

It was odd seeing some of the residents in their bed things. It can't have been Dad's bath day because he was still fully clad and wearing, not only his clothes but clues to the day's menu on his shirt and trousers. He's taken to wiping his nose on his hand and then his clothes, so his shirt was encrusted with all manner of stains.
Lily was bathed and glisteningly clean. All wrapped up in a pink fluffy spotty housecoat. Amy too, in equally fluffy lilac. All new, christmas pressie pyjamas and dressing gowns.

Dad was surprised to see me. I thought his surprise was down to the lateness of my visit but no - "What are you doing here in this house of ill repute? There are half dressed women here - have you turned to that now?"

We sat down, and I tried to ask him about his day, his dinner, his feelings, tried to tell him of my day - but the noise was defeating us. The sundowners had arrived - and that's not a tray of cocktails but a term to describe the behavioural pattern that the demented show of becoming increasingly vocal as the sun goes down. The new lady was shouting "Wee Colin, away oot to play. Yer mammy's no weel. Git tae Mrs Munro's, she'll gie ye yer tea. Wee Colin. Wee Colin. Wee Colin. Mrs Munro, Mrs Munro, Mrs Munro. She's a guid wummin. Clean house. Mrs Munro. Mrs Munro. She's got the sausages".

Dad piped up at this point "Sausages. Yes, they were nice".

"Wee Colin. Yer mammy's no weel".

Bertha joined in "Mammy's deid. She deid. Da! Mammy's deid" over and over.

Lily screeches "Aaggghhh. You shut the fuck up you - she's naw deid. You wait 'til I git there, I'll show you whos deid" and sets off to thump Bertha. She's using her zimmer and it'll take her ages to get that far - she'll probably forget why she's going before she gets there, so the staff just let her.

All round the day room, people are shouting, dressed in their new nightwear, showered, bathed, powdered and soaped or in their dayclothes, crispy with the fallout of the day.

Karen is sitting, trying to finish her paperwork, completing all the handover documentation for the incoming shift. She's totally focussed. Doesn't flinch no matter how loud they get, doesn't register even the loudest shreik or yelp. Doesn't even look up. Occasionally she'll warn "Out of the kitchen Mabel!" or "Not on the floor Tam!" or "Keep the curtains shut Cammy" without even looking up.

4th January 2008 - Snow! Yes it is.

It snowed a lot today. I managed to get in to see him because Sean was still off work with the kids, while I was working. I kept getting regular texts during the day about the snow and how they were playing in it. I was jealous. I love snow. Ellie was making snow angels, Mark making snowmen and pelting Sean with snow balls and Sean was defending himself in between giving sledge rides. They went to the park and bumped into a friend of mine and her son and had a lovely time.

"Did you see the snow Dad?"

"What snow?"

"The snow outside, it's been snowing. Sean and the kids having been playing in the park all afternoon - they've had a lovely time. Look outside Dad. It looks lovely - especially when you're all cosy inside - have a look"

"What snow?"

"The snow, outside, on the trees, over the cars and hills"

"What snow?"

I point out the window "Look, it's still snowing. It's just a flurry now but it was heavy earlier on, heavy enough to lie".

"What snow?"

"See, Dad, look out the window. See the snow, look how pretty it is."

"What snow?"

A penny drops with a clang - "It's frozen rain."

"Aaah. Sounds cold".

1st January 2008 - Happy New Year

Linda caught me as I went in today. She wanted to know if I'd noticed how confused my Dad was lately. D'uh! Really?! She said they'd noticed a change in his personality. I had seen, lately, that he seemed to be hallucinating a lot, that often he'd try and pick up a cup that wasn't there and ignore the one that was - even manage to drink invisible tea from the imaginery cup and leave the real one. Linda said this is happening at meal times too, that he'll just stare at the food apparently unaware that it's there or unaware that he's supposed to eat it. I'd always assumed that hunger would drive him to eat, but I've read since that the brain signals that should be telling him he's hungry can get misinterpreted too.

"He's awfy stubborn, not like hesel at all. I wiz trying tae feed him his brekkie the morn and he wisnae huvin ony of it. Right bloodyminded if you dinnae mind me tellin ye" said Linda. I didn't mind. But, in truth, Dad's always been stubborn. When he was himself he was incredibly stubborn. It's only really since he was ill that he's been more maleable, more pliable, more willing to do stuff.

I sat beside him and tried to wake him. He kept almost waking but then falling back to sleep. I stayed for another 20 miutes and was just about to give up trying to rouse him, when the noise of the tea trolley woke him. I wished him a happy new year. He said "Happy? What's happy about it? Happy if it's my last. New year's resolution - not to see another". And then he said "Filled rolls. Disgusting. Will you work with hemp?"