Personal blog about dealing with a father with dementia in a care home.

Saturday, November 25, 2006

25th November 2006 - Who's the Daddy?

It was Saturday today so I could leave Ellie and Mark with Sean and go in on my own. I found Dad in a chair - I heard him coughing long before I saw him if his chest is clear then I'm Ruud van Nistelroy. He woke when I touched his knee and said that I made 4, all 4 had been to see him today. I asked who else had been in and he said Colin and Alistair had been in. No idea who Alistair might be, but I was 99.9% sure my brother hadn't been in to visit so I was pretty convinced he had had a hallucination and, as I settle him at a table for tea and cake, I tell him that it's just me visiting, no-one else. He's annoyed at this and says that all it needs is for Jeanette ( me ) to come in and he'd have seen all his children in the one day. I realise he thinks I'm my sister Moira but don't correct him. Then he said "Of course Jeanette's not mine, not really. Her father was your grandfather, you never knew that did you?" He laughs and says "It's not as bad as it sounds, he wasn't your Mum's real Dad, and it was a one time thing".

I know he talks bollocks a lot of the time - I need to keep calm. But I can't, I really can't.

And it is as bad as it sounds, Dad, it is as bad as it sounds. Granda molested me from the age of 6 'til 12 and a half. It was awful when he was my Granda, but if he was my Dad, then that's hideous, it's beyond comprehension. No wonder she didn't believe me. No wonder I was told not to tell tales or the family would be split up - "Did you want Colin and Moira to end up in care, because that's what'll happen if you run making up stories, telling tales". Keep it in the family, don't talk about these things outside the family. 'Family' my fucking God.

I can't believe it. It can't be true.

My head is bursting. My head must be about to burst. I look around, see Bertha screaming for her Mammy, see Bill having thick creamy yoghurt scrapped off his chin and thrust back into his gagging mouth, see Cecily rumaging through her collection of soiled loo roll, see them all, hear the music, smell the air freshener and shit and piss.

I had to get out, quickly, running away, "I'll see you tomorrow Dad" and I'm off. "Oh well, I suppose you've stayed as long as you want" he throws at my back as I go but I don't care.

I sit in the car for ages. Is that why she wouldn't take me to a GP when I was bleeding - some charlatan homeopathic surgeon who couldn't tell the difference bewteen a buggered 9 year old and constipation.

Is that what he meant by "Don't tell your Mum. She'll not like it. She used to be my little girl but your my little girl now". Remembering the words I remember his bedroom, thick with smoke, nicotine, swarvega smells. I open the car door and through up.

6th November 2006 - A tale of two slippers

I went in at 6:20 this evening. I thought there was a residents relatives meeting at 6:30 but I had the date totally wrong, it’s 20th November. So I stay for a visit. Dad’s dressed in his pyjamas and robe with his outdoor shoes on. No socks, just what he’d describe as a stout walking shoe. In brown. He’s surprised but pleased to see me, although as it turns out he thinks I’m my sister. He starts telling me how Jeannette (me) couldn’t come in to see him today so he was ‘extra pleased to turn round and be me’. Unfortunately, my sister phones me while I’m visiting and asks to speak to him. Obviously this is very confusing for Dad. He’s far from comfortable using any phone, and a mobile phone is particularly difficult, I have to hold the phone to his ear because he wants to speak into it as if it were a star trek communicator. She tries to talk to him for a couple of minutes then gets him to give the phone back, which he does asking whoever he thinks I am to give the phone to Jeannette. Moira tells me she’ll be up on Saturday.
Dad’s trying to get his shoes off so I ask him if he wouldn’t be better with his slippers on, he doesn’t understand but I tell him to stay put while I go and get his slippers. I eventually find a staff member with a key and race off to get them. Under his bed there is one slipper, one ‘stout brogue, black’ and his Italian slip on shoes. He doesn’t like his Italian slip on’s. He once told me he blamed them for everything. I wasn’t clear what this meant so – quite reasonably I thought – I asked what he meant. “For goodness sake, it’s obvious isn’t it? There called slip-ons aren’t they? Why else do you think I fell?” Ah, it is obvious, he’s right, I am stupid. But only one slipper. So I take the offending slip-ons thinking them better than the stout brown shoes he’s wearing. Across from him Ruby is taking her jumper off, then her vest. She’s taking the trousers off too. The new lady tries to help her but gets snarled away. A carer notices and comes to dress her again. He puts them on and I promise to buy new slippers and bring them in tomorrow. “What day will that be then?” he asks me. “Tuesday, this is Monday”. “So, Moira’s coming on Saturday, so I’ll just have to wait ‘til then for a visit”. “No Dad, I’ll be in tomorrow and the next day. Every day, I come in to see you every day unless Moira or Colin are coming” I reply. “Yes but I need to wait ‘til Saturday for a proper visit” he smiles. I’m imagining the glint in his eye I know I am, but I can still see it, a vicious glint as my resigned face settles and slumps as I confirm “Yes, you’ll get a proper visit on Saturday”. I look at his pyjamas and think they are a bit shabby too, so I’ll get him some new ones tomorrow too. At the same time I’m thinking “Fuck you, that’s it. I’m not coming back, you can lie in your own pish, you can die in your own pish for all I care. You’re not even my Dad, why do I put up with this ritual humiliation? No more old man, I’m fucking off and I’m not coming back. I can walk out of that door and never come back, never have to smell this smell again, never have to see another old woman’s shrivelled tits when she strips in the dayroom or her grey mouldy twat as she goes to the loo without closing the door, never see another old man fumbling for his wizened old cock, never have to listen to grababagrababagrababa or Bertha screaming for her Mammy. I can choose to never come back”. So I stand and kiss his cheek and tell him I’ll be in tomorrow morning at 10:30 or so, abashed at how nasty I am in my head - this terrible dichotomy between what I think and what I say.

5th November 2006 – They’ll be playing golf then.

I went on my own today. It was a Sunday and we had a lot planned for the afternoon so I went about 11 for just over an hour. I couldn’t find him when I first went in. I looked all round the day room, then the smoking room and trawled the corridors. I couldn’t see him so I went back to the day room. He was there, I just hadn’t noticed him. His picture is by my door in the house, and there’s another on my mantel piece so I think my subconscious still thinks of him like that, certainly I didn’t recognise the slight, sleeping wee soul that it finally dawned on me was him. He was nicely dressed, his trousers fitted, he had a green shirt on and a co-ordinating tie. I hadn’t seen him in a tie for ages, he looked well. His glasses were still missing – but as he says they are not likely to come back after being dropped over the side of the Queen Elizabeth into the Clyde. He’s asleep so I wake him. He doesn’t seem to recognise me so I call him Dad and there appears to be a flicker.
I ask him how he’s feeling and he starts to try and tell me. He says he was sick after breakfast, but what he threw up wasn’t sick. I ask him what he means, and he tries to find a word, tries fishing in the murk, the mush that his brain is becoming. He can’t find the word he’s looking for, he explains that it wasn’t sick, it was that thing between, before or after. He almost gets there, almost gets the words, but a carer is vacuuming under our feet and he’s thrown off again.

Bertha’s singing for all her worth – Doris Day’s Secret Love. She – Bertha – has got such a powerful voice. When you see her you can’t imagine she’s making the noise. I’ve never seen her standing but I think she’s about 4 and a half foot. Two days before I heard her from the car park as she screamed for her Daddy because the man was hurting her, screaming to get the man to stop. I find the days when she’s screaming like that so difficult – I want to comfort her, to tell the frightened wee girl that the man hurt, that everything will be fine. I can’t – she’s turn on anyone who tries to comfort her – and anyway, I can’t tell her everything will be alright, it’s not alright. But today she’s singing her heart out.
He keeps falling asleep, despite the vacuuming, despite the singing and the TV and the cacophony of mutterings, mumblings and screamings. When next he wakes I remind him it’s Guy Fawkes night and not to be alarmed at the noise in the night. He looks puzzled “Fireworks Dad. It’s Bonfire night – you’ll see them out the window tonight when it gets dark”. “Bonfire night? They’ll be playing golf then!” he answers and I haven’t the energy to try and pick the bones out of what he’s saying to try and make sense of it. “Might be, Dad. See you tomorrow”. On the way out I see Tweedledum she tells me she dressed him and I say he’s looking nice. She mouths in the Les Dawson style, accompanied by a gesture moving her hand away from her bottom, that he soiled himself after breakfast and that she – ‘Muggins here’ - had to clean him up. “Isn’t that right Moira?” she shouts across the day room “Jimmy soiled himself this morning after breakfast and it was muggins here that had to clean up the mess – as usual!”. Then to me in her whisper “Not even one of mine your Dad but I can’t help it, can’t see one of them in their own mess”. Why shout across the room that he shat himself then whisper to me ? My fixed grin stays put as I thank her for her consideration. That’s what he meant about being sick, he knew he wasn’t sick but couldn’t remember the words. I turn my head to see if he’s heard this exchange and his eyes are drooping him off to sleep, but his eyes are sparklingly wet. He heard alright.

Friday, November 24, 2006

24th November 2006 - Annabel and Isabel

Annabel and Isabel are sisters. They sit, like toby jug book ends, either side of a table. Some days they don't know they are sisters. Some days they do know they are sisters. Some days - the worst, most awful days - only one of them knows that they are sisters. They don't often speak but they will sit and hold hands on days that they know each other, sit and ignore each other when they don't and sit an silently cry on the days when only one of them knows she's a sister and can't understand why the other is ignoring her.

Isabel is slightly more talkative but less mobile. Annabel can't breath well and has an oxygen mask round her neck ready for when she needs it. Isabel can't walk and the hoist is needed to get her in and out of her chair. Annabel can't feed herself, needing a carer to do this for her - or on a good day Isabel can help - if both of them know who the other is. Isabel can feed herself but is not continent. Both have no-one else. No-one comes to see them. They are both spinsters, the only two children of dead parents, who were both only children. Annabel and Isabel, all alone, together alone.

Thursday, November 16, 2006

16th November 2006 - Cecilys head revisited.

Colin went to visit Dad this morning. He sent me a text to let me know Dad had seen the Dr today as they thought he had a chest infection, but the doctor said his chest was clear. He also had his 'flu jab. I decided to visit anyway in the afternoon with Ellie. Ellie was wearing her new hat - a trendy wee knitted baker boy style hat with crocheted flowers.

Everyone was in shouting form today. Bertha was shouting and shouting and swearing like you couldn't imagine, for such a sweet looking tiny little woman she's refreshingly coarse and foul-mouthed. Terry was cursing back at her in his usual yafukinbassayecunye way.

We sat at a table and Cecily joined us. Zimmered her way over to us - quite deliberately - and joined us, but then she just sat and grinned, in that way they have where you don't know if she's actually smiling or if it's some kind of rigor in her facial muscles. She picked up Ellie's hat and put it on. Ellie wanted to know why the smiling lady had her hat on. I told her not to worry that she was just trying it out and she wouldn't keep it. I was glad it was this Cecily, not the other Cecily who brushed her own hair - and anyone else who gets near - with the toilet brush. The shitty, foul smelling, bleach cover toilet brush. But it's this Cecily, this Cecily - the one who used to be a doctor. Her face is almost challenging - say something she seems to be saying - go on I dare you, tell me to take it off, and I'll thump you.

Throughout our visit Cecily sits, grinning, be-hatted. Occasionally Ellie will ask - with ascending politeness - if she can please have her hat back. "Excuse me lady, but that's my hat. Can I please have it back?". No response. Dad doesn't seem to notice or register she's even there. She's hard to ignore though. It's difficult to ignore someone sitting a few inches away from you grinning like a gaping wound, wearing your daughter's new hat and with defiance sparking in her eyes goading you to say something, to give her an excuse, any excuse to hit out.

At the table beside us Bruce and Stella are calling each other names. He's much more able than Stella so he's 'winning'. All she can muster is a few "Is that right? Well you're a bastard!" in response to being told she has a smelly auld cunt, that she'd be dead soon and then he'd piss on her grave.

When we rise to leave I ask Cecily several times if I can have Ellie's hat back. Eventually I pluck it from her head, apologetically saying we need to go and we do need to go because I can't listen to Bruce any more, listen to him destroying the now weeping Stella. When I do rise to go, Bruce wanders off in the other direction and Stella shouts after him "Where are you going? don't leave me here on my own" and hauls herself to her feet to chase after him - if you can chase with a zimmer.

Wednesday, November 15, 2006

15th November 2006 - Fuck off Jiminy

I'm trying not to go today. I've got a busy day today and if I were to go to visit him I'd not get some of the other things done that I really need to get done. I'm going out with friends tonight and need to shower, wash my hair and do that kind of stuff. It's not as if I go out often. Last time was a few months ago. My son has no clean school uniform clothes left and his judo class this evening, my potty-training daughter is down to her last pair of dry knickers and her gym class this afternoon and my poor husband went off to work in mismatched socks and novelty underwear bought as a joke. I hope the poor man doesn't have an accident - for all sorts of reasons - but not today, not in a tiger print thong.

I keep getting a picture from yesterday's visit floating through my mind when I'm telling my conscience I'm not going today. When me and Ellie first arrived yesterday Dad wasn't in the day room, or the smoking room so we went wandering to find him. He was in one of the corridors just standing rubbing his hands over his face, as if in exasperation, sadness and despair. When he heard Ellie's scampering little footsteps, he turned to see us coming and he lit up like a lightbulb - brightened and pleased to see someone he knew. He won't get that feeling today.

It's not just me that isn't going to see him today. No-one is. Are they all sitting feeling tortured?
But they can't go. I could if I juggled a bit, missed out on the shower maybe.

No, I'll go tomorrow. I'll have more time. I'll take the 'wipers' he wanted. I think that means tissues. I'll go tomorrow. Promise Jiminy. Promise Jimmy. But I still feel crap.

Sunday, November 12, 2006

1st November 2006 – Is it possible to whistle when you are sad?

The sounds I most connect with my father, when I look back to my childhood and growing up, are his asthmatic coughing and his whistling. With my Mum it’s her smokers cough and a constant muttering under her breath she’d do when annoyed, rubbing her hands as she stumped up the stairs. But Dad whistled. He didn't play an instrument and he didn’t sing – at least I never heard him sing but I’d imagine he’d be quite good. His brother sings, always has in various clubs and amateur productions.


I remember watching this god-awful program, when we were growing up, called “Face the music”. It was like “Never mind the Buzzcocks” about classic music. They had a piano that didn’t make a noise and you had to guess the piece of music by the thump thud of the dampers of the notes. Guests were people like Frank Muir and Joyce Grenfell. Posh. Dad and his Mum would insist that we watch this – trapped in ‘the telly room’ with my Gran, my Grandad and my Mum all smoking, and my asthmatic Dad coughing. He’d always get the questions right and knew all the composers names, the opus numbers, the names of the movements and all there was to know, happily conducting away, eyes closed, head back in rapture. He whistled classic music when he was happy, when he was busying himself, when he did the dishes. I haven’t heard him whistle in years now. So I wonder if it’s not possible to whistle when you are sad – not impossible as in if you were forced you couldn’t do it – but it doesn’t occur to you to do it because you’re depressed. Or does he not hear the music in his head that he used to? When I set up his room I made sure he had all the music I could lay my hands on, all his CD’s and tapes. He never plays them , hasn’t since he moved in. He used to try and watch a video or the TV in his room for a bit – he always managed to confuse the buttons, the remote, get muddled but at least he tried. Not with his music though, that left him before. So if there’s no music in his head any more, and his words are jumbled, and his optical signals can’t be trusted either, just what is he thinking, what goes through his head? Where does his head go for distraction then, to his memories? Poor Dad.

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Tuesday, November 07, 2006

10th August 2006 - If a tree falls

Bertha was screaming today - nothing new there then - but it wasn't her normal "Mammy, daddy, help me". Not even the very alarming "Daddy, the man's hurting me, make the man stop hurting me, Daddy make then man stop" - one that I find particularly distressing as my own father so completely failed in stopping the man hurting me.

But today it's "Hold my hand" over and over again. So loudly. Even generally good natured staff are giving her a wide berth ( no pun intended ).

I've never heard Nan say anything intelligible. Not one word, ever. Her brother who visits quite often hasn't heard her say anything that made sense in years he reckons. She's sitting beside Bertha, and I hear her say very clearly "I'll hold your hand, give me your hand love, I'll hold your hand". Bertha doesn't vary her shouting, nor offer her hand to Nan, and Nan slumps back in her chair. I look round to see if anyone else has heard, but no-one has. If a tree falls in a forest, and no-one's there to hear it, does it make a noise? I've always thought that was a bloody silly question - of course it does. But now, I'm not so sure. Did she really speak? I go over and hold her hand for a minute. Dad's not pleased. "Who's that? We don't know her do we?". That was our upbringing all over - keep it in the family, don't talk to outsiders. In all the time we lived together I don't remember anyone ever visiting that wasn't related. No-one ever had friends over, not Mum, not Dad, not my Mum's Dad or my Dad's Mum. Once every couple of years my Mum's brother would visit with his family. My father's siblings never crossed the doorstep. And we never visited anyone. Ever. "Keep it in the family". And we did, or at least I did. Moira and Colin seem to have a good circle of friends now, but I still struggle to be open enough to let people in.

"No Dad we don't know her, but maybe we could". He doesn't understand what I mean and stares blankly at me as if I haven't spoken.

Sunday, November 05, 2006

31st October 2006 – Happy Halloween

Last Halloween I didn’t think I’d be going to another Halloween Party at the home. Well, we went, Ellie, Mark and I. Ellie was a cat, Mark was a ghostie spectre kind of thing, or at least he would have been if Ellie had been able to cope with him wearing his mask. She couldn’t, crying and screaming when he tried, so poor Mark went dressed as a 9 year old boy in a white dress. Scary enough I suppose. I was dressed as a witch – bit of typecasting there, wicked old woman that I am.

When we arrived all the residents were sat round the walls of the day room. The room was decorated with orange and black balloons. Most of the staff had costumes on or at least a witches hat. The food table was laden with sandwiches, cold little pizzas, cocktail sausages, mini quiches and the like. When I found Dad he was sitting, rather dishevelled with a plate of party food and a sherry glass full of diluting orange in front of him. He said hello to me and Ellie – he didn’t recognise Mark - and started telling me how he’d been asked to fix the boiler for the place that morning, but when he opened up the cupboard all there was in it was a black man lifting an old buddie onto the toilet. It made me remember asking him – two days after I’d got married – how he’d enjoyed my wedding. He’d said that it had been ok but he didn’t think much of the entertainment. As he’d not been present at the ‘party’ bit of the wedding, only the ceremony and meal and therefore not around for any entertainment, I asked him what he meant. He huffed and puffed and blustered and said with his high pitched indignant voice “I can only describe it as men and women going to the toilet together.” I wasn’t sure whether I was more surprised that he thought I’d think that that was suitable entertainment to have at my wedding or the fact that he couldn’t work out that he’d gone into the ladies by mistake. I suspect he may have had a boiler room/toilet mix up this morning.

I encourage him to eat his food, ignoring the memory of Bruce pissing all over the food last year, I ask Mark to go and get some things for him and Ellie to eat. In typical boy fashion he comes back with 3 cocktail sausages, and a mound of chocolate dipped marshmallows. I look at Dad, he’s wearing a pair of trousers that don’t belong to him, that he needs to hold up they are so big. He’s got braces on but one of the fastenings is broken so he’s holding it onto his trousers, flies open. This seems to be stopping him eating because he thinks his trousers will fall down if he lets go, even though he’s seated. I get a carer to give me a key and I run off to his room to look for a belt. I can’t find one, but looking through all his stuff without him there really freaks me out. His outside clothes are all stuffed into a high cupboard – his jackets and coats. His lower drawer is full of incontinence pads for him and plastic gloves and aprons for the carers to help change him. There’s a drawer full of ties, he always wore a tie when he was himself, a tie, long sleeved shirt with a pen in the pocket, that was Dad. He once went on a TV quiz show, 15-1 it was called. He came second, but my abiding memory of that show was of him, white shirted, wearing a tartan tie and a pen in his pocket. He’d applied to go on the show before Mum died and they were planning to go down to the filming together, make a wee break of it. But then she died. He must have had to phone up and explain and cancel. He then reapplied a few months later. It must have felt so lonely going on his own, no-one in the audience to congratulate him or talk about the show on the journey home. I took the afternoon off work to go home and watch him on the TV. It would never have occurred to him to ask me to go with him. I wonder if I’d have gone if he’d have asked. I’m pretty sure I would have. But if that's not a metaphor for my dysfunctional life I don't know what is - Dad on the TV feeling alone and lost and me at home alone watching the TV cheering him on.

Anyway, I return to the party room, give the key back and tell Dad I couldn’t find a belt, that I’ll buy him another one the next day. I wonder why whoever helped him dress didn’t put him in trousers that fitted him. There had been at least 3 pairs in his wardrobe. I suppose once he’d got them on it was too much effort to get him to change them, so they’d let him shuffle around all day. I ask him if he wants to change his trousers for a pair that don’t need braces, but he can’t understand what I mean. He looks at me aghast, with total horror and disbelief so I’m not sure what he thought I was suggesting – after all I’m the type that thinks men and women going to the toilet together is suitable entertainment for a wedding you know.

All the children at the party are bored. There is nothing for them to do. There’s no entertainment, no dooking for apples, no pin the nose on the witch, no nothing. They are expected just to sit and eat. Here they are, dressed for Halloween, having been told they were going to a party, being forced to sit in a room with a bunch of old folk being fed party snacks. I tell Mark and Ellie they can play chases if they like in the corridors – every resident is in the day room so I reckon that’ll be safe enough.

We stay for an hour. As I leave I see Dad downing a scooner of sherry, upturning the glass and placing it on the table in front of him, like a shot drinker lining them up, he goes for Dollies, as she’s sat beside him, she’s incapable of moving and not surprisingly the plate of party food and her sherry is untouched – and will be until a carers makes it round the room to her to help her eat. I want to tell him he doesn’t like sherry, but then I think a wee alcoholic glow might be just the thing to take the edge off and let him go on a shuffling search for more glasses to drain and upturn. Go on yourself Jimmy. Happy Halloween.