31st July 2007 - Well, it sure ain't teen spirit

We visited this morning. Dad was just outside his room. Standing, shirt tails flapping. As we approached him the smell of shite became stronger and stronger. "What is that smell?!" Mark asked me as we walked slowly towards Dad. "It smells like, it smells like, like..." he left the sentence hanging but we both knew what he was thinking. Ellie was hopping and skipping between us. "What smell Mama? That poo-ey one? Oh look there's Grandad. Do you smell the poo Grandad? Smelleeee isn't it? Pooooeee!" Because we were so near Dad's room we went in, rather than turn and go back to the dayroom. In the confines of his four walls, the smell was gaggingly strong. Where he walked he left prints, smudges of dirt. "Oh, there's mud all over the floor kids you sit up on the bed." and I cleaned the floor. I tried to get hom to give me his shoes to clean them, but he was tugging his incontinence pad out the bottom of the leg of his trousers. He couldn't get it pulled through, so I helped. A big dod of shite tumbled out on to the floor. It just sat there, smiling up at me. I picked it up with the pad I'd freed out of his trouser leg and removed it and the pad to the loo. I was wondering if there were more dods in his trousers because the smell didn't go right away, but eventually it did, so I reckoned I must have got it all. I put on some Beethoven for him because Miora had said he'd perked up last time she'd played him some music, but it didn't work this time. I think he was too embarassed, too mortified to brighten up. His daughter had just removed his nappy. I was aware that he didn't have a pad on, so I found a fresh one and put it in the toilet. "There's clean things in the bathroom for you Dad, when you are ready" I told him. He'd nodded but didn't meet my eyes. I hadn't realised he was doubly incontinent. I knew he'd lost his bladder control, but not his bowels too.

We left him in his room. As we were leaving I pass one of the staff and tell him were he is. I'm not sure the residents are allowed to be in their rooms on their own. And I want to be sure he gets his lunch. My poor Dad. I suppose they'll turf him out of his room to wander about on his own again. I hope he puts his pad on.

30th July 2007 - Bedlam

It was the first time I'd seen him since we went on holiday. He looked just the same. I say looked because I couldn't hear anything he said. Hoovering, extractor fan extracting, TV and CD blaring, three sets of relatives visiting deaf residents, two of the screamers screaming and the 2nd in command entertainments lady playing bingo very loudly. She would shout the numbers, making up the 'clickety click' or 'two fat ladies' term completely at random. "Number 10, Lion's den" she shouted, then looked at each of the cards of the three ladies she'd wheeled around a table to play. If they had the number she'd tell them, mark it and go on. Two of her players she needed to wake to tell of their luck. I fought my desire to shout over "Your IQ" when she yelled "49, wit's that then?" although I did quite like her "Number 12, ma bus hame".

But Dad looked the same. And he did seem pleased to see us. When we left Mark said "I know I'm going to regret asking this but what does Grandad do when we go away?". "What do you mean?" I asked, hoping he didn't mean what I thought he did, hoping he wasn't realising how bleak and awful Dad's life was. "Well, when are not there, what does he do, how does he spend his day? He doesn't just walk around all day, sitting down every now and then for a cup of tea or something does he? Does he?" His face was frightened, he knew he was right, that that was exactly what happened. I tried to tell him that there was entertainment provided, that he watched the TV and there were day trips, but he knew I wasn't being truthful. "I knew I'd regret asking. Mum, can we go and see him every day? I don't mind spending more time there, especially during the holidays". I hugged him close. I tell him that his Grandad wouldn't want him spending all his school holidays cooped up in an old folks home, looking after him. Which is bollocks. His Grandad would want precisely that. Mark hates going into the home. He finds it terrifying, always has. My son is fabulous.

21st July 2007 - Happy Holidays

We are going on holiday tomorrow. Only for a week, but I feel like crap. Dad was trying to understand how long I would be away. He said "So, today is Wednesday" and I interrupted with "No, it's Saturday today Dad. Sunday tomorrow". "Right, I knew that, so you are going away from red through to blue are you or are you back by yellow ? I know I hardly see you but it would be nice to know when the next time will be. There's very little to look forward to in prism, even your visits make a righter day". I told him we were away for a week, that I would see him as soon as I came back and that my brother Colin would try and come and see him while I was away. "You have a lovely time, don't worry about me, I'll be fine. Colin will be here, he'll not go away. I don't see much of you anyway, which is fine. You go off and leave me here. So you'll be back when it's blue?" and I was glad he said the 'blue' bit because I was back in angry child mode, I was fighting fit for a teenage angst argument that was never voiced when I was a teenager, I was ready, I was poised...and then I was deflated, he was mad, he was sad, he needed me and I was going away for a week. He needed me and I was ridiculous, I was struggling to get past the past, to deal with the reality of Dad as a vulnerable old man. Silly cow.

20th July 2007 - Dr Who?

I finally managed to talk to Dad's GP yesterday. His GP had wanted him to get an xray a few months ago, so I'd taken him - with the kids in tow - to get one taken. It took in total four and a half hours, with a demented father in a wheelchair bumping across a building site of a hospital and two very very bored weans. It was the first day of the Easter break and it was far from being their ideal way of spending it. Anyway, an appointment came through to follow up on the xray. This apointment was missed - the home never received a confirmation of the appointment time to let me know when to take him. His named carer phoned me to apologise for him missing his appointment - rather odd because I wouldn't have thought they'd have known he'd missed it if they didn't know when it was. She asked me if I thought there was any point in him going to the hospital and if I'd phone them and get a new appointment. I suggested that I'd phone his GP and find out what he was hoping to find out from the xray, what course of treatment the results might indicate - to see if it was worthwhile. I asked his GP's name and she told me she'd seen Dr yesterday and it was Dr Greg. I asked her if Dr Greg was a man or a woman and she confirmed he was male. It took a while to get through to the right GP when I phoned the practise, mainly because Dad's GP is Dr Grieve and she's female. The named carer's English isn't faultless and she'd obviously read the Dr's name wrongly, but I really wish she'd been honest enough to say that she didn't know who his Dr was. It would have given me more faith in her and her interest in Dad. But she didn't.

Dr Grieve obviously didn't know my Dad and thought it very odd that I'd query her. I explained that he also had dementia and she said "Oh, I suppose it would be a bit bothersome for you to take him to an appointment". Bothersome or not, I told her, I'd be happy to take him if there was a point but he'd been seen at hospitals at either end of the country and told, in no uncertain terms by the last incredibly unpleasant consultant that he'd have an infection in his arm for the rest of his life that could be controlled by a constant low dose antibiotic or he could take his arm off. He also said he didn't want to see him back there. The man really was obnoxious. He talked to Dad as if he was deliberately wasting his precious time, as if my Dad was a malingerer, some whinging hypochondriac who really should be greatful he had an arm at all. No recognition of the fact that his arm was in such a state partly because of the NHS treatment he'd received, the infection he acquired. He had made him move his arm to show the range of movement and pronounced that it was as good as he was ever going to get and what did he expect as his age. And what was he ever going to be doing at his age that would need more mobility than the 75% he'd got. At the time I was still a little in awe of medical types, but even then I managed to point out that it wasn't the range of motion that was the problem it was the fact that it would ooze puss and was very painful. That'll be controlled by antibiotics he snarled at me, and left.

Anyway, Dr Grieve took a few reminders to recall Dad, but once she did she softened a little. She told me that one of the 'other' Dr's had changed Dad's antibiotic and taken him off it on one occasion 'just to see how he'd get on' but that she'd note on his file that this shouldn't happen. She said that she didn't think there was any point because the request for the xray had been put in by one of the other Dr's and would only show up what we already knew. So I resolved to be tougher and more vigilant when the home call a GP and ensure that they don't fuck up his drug regime. I should have been more on top of this all along. Sorry Dad.

Earlier on in the week I'd spoken to his dentist. Dad's had a broken tooth for over a year and I kept asking the home to get a dentist to take a look at it. The dentist confirmed that the tooth was broken, and so were a number of others, he should really have the roots removed. He suggested that he'd just leave them and it wasn't really worth it - putting 'them' through the dental work. I asked the dentist if they'd be causing him pain and he'd said no, I asked if they'd be affecting his eating and he'd said no, so I agreed that there was no point in treating them.

No point in doing anything about his arm. No point in fixing his teeth. No point.

16th July 2007 - Keep your shirt on

I hadn't seen Dad since Friday. The weekend had turned out to be really busy and I hadn't managed to make time to see him. The kids are on holiday so I do't get a chance to go in during the week without them and don't think it's right to make Mark and Ellie go at the weekend too. They both - on different levels as they are 10 and 3 - find it so scary to see the residents with dementia. Ellie has been visiting since she can remember, she's never known an un-demented Dad. Mark remembers him before he got ill, when he could play football, do jigsaws and be snarly and grumpy.

Today he was shuffly, small and baffled. He kept wanting to take his shirt off and I kept trying to get him to keep it on. "Keep your shirt on" I was saying as he tried to unbutton it and untucked it from his trouser. "I'm not angry" he tried to say, dregding from his memory the saying but not connecting his actions with the actuality of him keeping his shirt on.

Tweedle was on, but so were my favourites Andrea and Mary. They are such great carers, so good at their job, so kind and patient with residents and relatives. They are simply good people. Unfortunately it was Tweedle who talked to me, but she wasn't too bad. She said she knew why he was taking his shirt off, "So's he can git at tha' bandage. Pick, pick, pick, scratch, scratch, scratch. That's him". I told her that he has very senstive skin, eczema allied with his asthma, and that there was a good chance he was allergic to the adhesive in the plaster. She was sympathetic, she has allergies herself and can't even use Head and Shoulders - and don't start her on the food additives and her two. The wee one can't tolerate anything orange - not even a Wotsit. Really tricky to feed that one.

Nothing will happen, nothing will change. If I write a letter, it'll get lost or a measure will be put in place that won't work, because it won't be implemented because it won't be believed necessary merely a pandering sop to an overfussy relative - but then they can say "We've tried everything".

8th July 2007 - Antibiotics II

Yup, his arm has flared up again. What a surprise! The named carer approached me today to let me know that his arm was inflammed again. Rather redundant information 1) because I knew that'd happen after they gave him antibiotics the other week when 'there's obviously something up with him' and 2) because I could see the puss soaking through his shirt sleeve. Her eyes followed mine to his arm and she rushed in with "I've bandaged it up three or four times today already but he just takes it off". She's maybe telling the truth but I've seen him trying to do a button. It's almost impossible for him and this shirt has three buttons at the cuff that would require to be negociated to allow the sleeve to go high enough over the elbow to permit him access to remove a bandage.

Dad, I don't know what to do for the best for you. I don't want you to be in pain, I don't want you to be sad, I don't want you to be lonely. I don't want people ruffling your hair as if you where a child or shouting at you as if you are deaf. I don't want other residents telling you to fuck off and treating you like you are stupid because you don't understand them. I don't want you being scared. If I was on my own, I'd bring you home. But I'm not. I have other people to care for too. I'm sorry, so very sorry.