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

Monday, October 30, 2006

25th October 2006 Visiting No-one

I glanced back in the visitors book over the last couple of days. Yesterday in the early hours Robert was in, stayed for an hour and then left. Rebecca must have gone then because today's entry for him, under the column for the visitor to enter the name of who they are visiting, Robert drew a line. I faltered when I saw it, the line through the name box. I realise that subconsciously I'd been looking for their names. I'm not sure if I wanted to see them or not - did I want her fight to go on when her son so poignantly wanted it to end? Poor Robert. Poor Rebecca. I hope he managed to get in on time the night before. I hope he was there.

24th October 2006 – She’s still here

Rebecca is still hanging on. When I went in Dad was in the ‘Quiet Room’ where they were about to start a ‘discussion on a topic’. Usually entertaining enough – what with “Step we Hailey’s” grasp of current affairs and the residents’ grasp on reality, the discussions can be quite lively. One of the more compus mentus ones usually end it after a while cursing and telling them they are all fucking daft. Which is fair enough.

I look at Dad though and he’s desperately pale. I try to take him through to the Day room to sit at a table, but we only get a few steps, he’s holding onto my arm for grim life and I’m trying to carry the shopping and make sure Ellie doesn’t get molested by Margaret or Cecily. I realise he’s about to fall – when he falls he just crumples, his legs literally go from under him and there’s nothing that will stop him – so I shout for help. Moira comes and holds him up while I run for a wheelchair. When I get back his named nurse Karen is there and a male orderly too. They get him into the chair. He’s even paler now. Karen and I confer and she’s agrees to phone the doctor, but she’ll need to take his blood pressure and temperature first. Ellie and I walk behind as he’s wheeled along to his room. The male orderly is telling me how he’s been in the morning – didn’t eat his usual full cooked breakfast and kept walking or standing up at least, didn’t want to sit down. Now, call me an over-pushy relative if you will but, if someone doesn’t want to sit to eat and every time they are force to sit will try with all their might to stand – does that not suggest to you that it’s – at least – uncomfortable or - more than likely - painful to sit?

When we get to his room they take his temperature – it’s not high, and his blood pressure, which is deemed ok too, although to my extremely untutored eye I think it’s a bit low. They take him out of the wheelchair and transfer him to his armchair. He visibly winces when he sits and immediately tries to get up. He has a thick jumper, which Karen takes off for him and his vest and shirt below are damp with perspiration. Moira looks out a clean shirt for him and they go and get a different male orderly to help Dad into the toilet. It might be constipation they say, “Do you need the toilet?” they shout at him repeatedly. He keeps saying no, until eventually he says yes and they shuffle him in. At least they close the door. Moira appears in a minute for clean briefs and trousers. Karen returns to tell me that the doctor will visit in the afternoon but she’s sure it’s just constipation – they emerge from the toilet and she asks Moira if he moved his bowels then, she says no, so she asks the male orderly if he’d moved them this morning and he says no. He’s dressed and they sit him back in his armchair – he winces as he sits and tries to get up again. They shout at him to stay sitting or does he want to lie on the bed? He agrees to that – I think so they won’t force him to sit any more – and he winces again as they sit him on the bed and spin his legs up. I tell Karen and Moira that I think there’s a pain at the bottom of his back, that the fall he had last week when he sat in an invisible wheelchair might have hurt more than they thought at the time. This theory does not find favour, and they continue asking Dad if he wants a laxative, if he’s in pain, can he tell them where it hurts. “Is it your tummy? Is the pain in your tummy?” Dad says reasonably clearly “It’s my back” “What’s that Jimmy? In your tummy? In your tummy is it?” I say “I think he said it was his back” and the male orderly tells me that the problem is he can’t tell them where the pain is – what’s the point asking him then I wonder. Why keep badgering the poor old sod into agreeing he’s got a sore tummy? “You’re fine Jimmy, don’t worry, you’re fine”. They keep telling him he’s fine.

They leave and Ellie and I turn the lights down and I tuck Dad in. He passes out or drops off or something with his eyelids only half shut and I see his eyes rolling from side to side – as if he’s reading something, as if he’s following the progress of a typewriter barrel as it moves as the words appear. His breath rattles and he looks like he did the week before, tiny, wafer paper skinned, flesh rippling away from his skull and the bones of the skull almost visible though the thin covering of his grey skin. I don’t want to wake him, I don’t want Ellie to see him like this and there’s only so long a 2 and a half year old will whisper and sit nicely for but I don’t want to leave. I excuse it by telling myself that I don’t want to see anyone if I’m ill but I know that’s a sop to my conscience because I know he’d rather I stayed. But I don’t, I leave. I kiss him on the cheek and stroke his face and promise to come back. His eyes filled at my touch – it’s uncharacteristic of me to be gentle and tender. I always want to, I want to hold his hand when he struggles to find a word, I want to give him a cuddle, but I can’t, I just can’t.

I pass Rebecca’s room on the way out and notice her memory box. There’s a photo of her smiling out and another older picture of her ballroom dancing with her husband. I hear Robert inside thanking someone for bringing him a glass of water. I wonder how long he’s been there. I’m sure he’s able to hold his Mum’s hand, to give her warmth, give her love.

I see Karen in the office by the door. She says she’ll call me in the afternoon once the doctor’s been. She does phone, the doctor says he is constipated and prescribes something to get him moving. I ask if they checked out his back after the fall. No, the doctor was sure he was constipated. I’m sure he is – months of eating chicken and leak pie and mash will do that to the most study of digestive systems and Dad was prone to getting ‘bunged up’ as he called it – and told me of with a relentless regularity so lamentably lacking is his bowels. It seems to be an old person thing – talking about your bowels to anyone who will listen. It’s not that they talk about them that bothers me – it’s the fact that they expect me to be interested.

So anyway, he’s been given stuff to shift ‘the problem’ and his back is still not looked at. I looked up the pain killers they’ve been giving him when he complains of back pain – one of it’s major side effects is constipation.

Saturday, October 28, 2006

28th October 2006 - Goodness had nothing to do with it

I went to visit this morning at 10 – I usually go later on a Saturday but I’d just dropped Mark off at his Dad’s and figured as I was in a bad mood anyway and I had to go past the home to get to mine that I might as well ‘get it over with’. So much for being ‘good’ to go and see him - I’m often told that I’m ‘good’ to go to the home as often as I do. I’m always far from comfortable about this, because I know – in a Mae West style – goodness has nothing to do with it. In my defence it’s not all badness either – it’s not as if there’s money in it – all his money will go to the home – it’s not as if I think I’m storing up brownie points for the life hereafter as I’ve never been more convinced that dust is what we’re headed for than now. It’s because if he can bear to be in there, then I have to be able to bear to go and see him.
I’ve spent my life being afraid of being found out. At school and Uni I was always afraid people would find out I was stupid – that I didn’t belong there. At work – no matter how successful I was – I was always afraid someone would notice that I was useless at my job. In an Emperor’s new clothes way – all it’d take was for one person to point out how crap I was and it’d be obvious to everyone. And now, now I’m afraid someone will notice I’m not a ‘nice’ person. I’ll be found out as the flawed, selfish individual I am. Nope, I’m not ‘good’ to go as often as I do.

Anyway, he was asleep when I arrived, as were most of the other residents. Gwen was beside him. She came to live there slightly after Dad and her decline is on very similar path to my his. She’s drooping in her chair, mouth agape and her skin is stretched taut over her skull like Dad’s. Bertha was sleeping in the chair next to Gwen and she’d fallen asleep mid breakfast. Her paper bib was still round her neck and the remains of a slice of toast were in her hand. As her mouth drooped open I could see the mouthful she’d been chewing still resting on her tongue behind her bottom teeth. Beside her was Annie, sleeping, then Patricia the stripper, sleeping, then Margaret, sleeping, then a sleeping Dottie. On the other side of Dad was an empty chair, then Nina. Nina was awake and eating cereal. “PorrraporraporraneeeweeeneeeweeeBABABABABA” she was saying as she rocked back and forth feeding alternatively herself then some invisible breakfast guest. Spoon about, one for me one for you fashion.
I took the empty chair and woke Dad. I asked how he was, but didn’t get much sense. I asked if he had his breakfast and he said that he thought he had – was there some doubt about it? I talked for a little but every time I ran out of steam he’d fall asleep again.
Susan had put on a CD – “Pack up your troubles in your old kit-bag,And smile, smile, smile,While you’ve a lucifer to light your fag,Smile, boys, that’s the style.What’s the use of worrying?It never was worth while, soPack up your troubles in your old kit-bag,And smile, smile, smile.”

These lyrics have struck me before as ridiculously tragic for the thousands upon thousands of young men killed in the First World War but when a couple of residents spark up singing along I start to fill up. Again. Why is it music in that place always does it to me? Bruce wanders over doing his polar bear back and forth act - his lips soundlessly forming the words of the song. Over by the door to the day room I see Dolly, she’s dressed to go out but Karen’s explaining to her that she can’t let her go out on her own – she’ll need to wait ‘til her husband comes in this afternoon or until there is a member of staff free to take her. There’s never a member of staff free to take anyone – unless one of the staff needs something from Tesco’s when sometimes they’ll stick a resident in a chair and wheel them off down the road. Dolly’s very together – the most together resident they have just now. She’ll like Dad was 2 years ago and more when he came in. Trapped, being fobbed off with reasons why leaving is not allowed. No-one ever actually says “You’re never going to leave here again” but the residents like Dolly, and like Dad was, must know. As Lily is apt to shout “You’ll leave in a fuckin’ box ya daft bastart that ye are!” Dolly is looking upset, frustrated and upset. She sits down – “Have a wee seat. You’ll get a nice cuppa in a bit” - but she keeps her jacket on and buttoned, her bag clutched under her arm and her hat on, her face buttoned down and resolute too – she’s going to be ready when the call comes to go out, no matter what.

Dad wakes for a moment to say “Is Moira here? Everything will be ok then” but I have to tell him it’s me, not Moira, and he looks at me, focussing. I ask where his glasses are “I dropped them over the side of the Queen Elizabeth, I’ve told you before” he replies archly, “Your sister would remember, Moira would remember, you know”. He drifts off to sleep again. I stay for another 45 minutes or so, but eventually I can’t think of a point, so I leave. I hope he’ll remember I came to see him when he wakes. I hope he won’t spend the rest of the day thinking no-one has visited him. Poor old sod.

15th October – Dad in bed

Dad’s named carer took me aside when I arrived today. I’d just been looking round the room for him and was about to start searching the corridors for him as he often goes for a wander, variously tapping on doors, staring for up to an hour at a wall, trying to open doors that aren’t there and totally failing to be able to figure out how to work the doors that are there. She told me he’d had a fall this morning. My mind’s racing ahead of her words, and I’m desperately trying to shut my mind up so I can concentrate on what she’s saying and understand her accent. He went to sit down on an invisible chair and – not surprisingly really – fell on the floor. He got a fright - and a sore arse I’d imagine – but didn’t break anything. But after his lunch he’d got very clammy and grey looking and when she asked him if he’d like to go and lie on his bed he said yes, and that’s where he was. She was very nice, she was genuinely concerned, and I was touched. She spoke like she really knew him and I was pleased, pleased that someone knew him well enough to know that if he says no to a cup of tea then there really is something wrong.


As I walk down the corridors I look in the memory boxes that they have at each of the doors – they help the more able residents know which one is theirs. Staff and relatives have filled these A4 glass boxes with ornaments, photo’s and cards, pictures of the residents children, grandchildren, wedding photos, dogs, baby pictures and one thing which I suspect might be ashes. As I pass Amy’s I see her grinning happily with her husband by her side, both smoking, she looks only about a couple of years younger than she does now. How quickly to go from that happy holidaying couple to in here, him dead and her clueless and getting nastier by the day. About the length of time my Ellie’s been alive.

Dad’s memory box has a picture of Ellie as a baby, a wedding picture of me, Sean, Mark and Ellie, and a picture of Mum and Dad taken about 15 years ago. It’s a nice one of both of them, they are both smiling, both look happy, they are sitting on a bench, quite close to each other and Dad has his arms spread behind on the back of the bench. It’s a casual, cosy picture. They were obviously happy that day. They loved each other. I put my wedding picture in the box. I’d found it in his wastepaper bin – along with my graduation photo. Moira and Colin’s graduation photo’s still smile down from the walls, I took mine home, I had really bad 80’s hair in it anyway. It’s one for the loft if ever there was one.

I knock on the door, gently, thinking if he’s asleep I can just go to Tesco’s and get the shopping in, but I hear him say come in, so I do. The room is darkened and he’s lying on the bed, covered in a blue honeycomb blanket. I pull a footstool up, sit beside him and ask him how he is. “That’s a blinking silly question isn’t it? I fell from a horse this morning you know? You’ve taken you own sweet time getting here haven’t you? I told them I wasn’t much of a horseman but oh no, they knew better. Making me ride and 95 – no wonder I got thrown when we went over the fences”. Dad’s never been on a horse in his life – to my knowledge anyway. Another non-sequitur. His little outburst tired him and he drifts off to unconsciousness. Tortoise neck, flesh rippling away from his bones poking through the skin.

I watch him sleep, mouth open, rattling breath and wonder how difficult it’d be to hold a pillow over his face and hold it down, to end this for him, for me. Would he struggle? Or would he open his eyes and look at me and be thankful? Would he finally look at me and be pleased with my actions? I wonder if the old him would have wanted me to. The him he is now, still fights to cling to life. So maybe any life, no matter what, is better than none. Or is that the autonomic response in him? Is his body programmed to self preserve and he needs conscious thought to hot wire his hard coding to allow him to seek oblivion? His brain is no longer capable of knowing what's real and what's not, or remembering the signals he gets for hunger, for thirst, for needing the loo. Would he need conscious thought to take arms against his sea of troubles? Then it really would be murder wouldn't it, because the person that wouldn't have wanted to live like this, doesn't live like this, he doesn't exists anymore.

I need a drink.

Tuesday, October 24, 2006

21st September 2004 - How old is she?

I visit Dad today with Ellie and Mark. We are joined at our table with two other residents. One is called Cecily, she used to be a doctor, apparently. She's a birdy old woman, like the spinster chicken in a Foghorn Leghorn cartoon. The other is Lily - she's a foul mouthed old woman who's age varies between 34 and 94, depending how she's feeling.

They are both most taken with Ellie. She's clucked over and marvelled at. "How old is she?" asks Cecily. "8 months" I reply. "She's 8 months" she tells Lily "that's marvellous, my two couldn't hold their heads up like that for years, 'til they were 2 or 3. She's marvellous". Lily screeches "What's her name?" "Ellie" "Eh? What's that? Jelly?" "Ellie" "Nelly? That's nice. I was called Nelly in my last life". I talk to Dad for a bit, 2 or 3 minutes, when we are interrupted by Cecily asking "How old is she?" Mark looks at me. "8 months" I reply. "She's 8 months" she tells Lily "at 8 months my two couldn't sit up like that - she's a marvel" "She's already tellt ye that you stupid auld cunt" Lily shouts at Cecily. "Never mind her hen what's the bairn's name?" "Mark" "No, not him, the bairn" "Ellie" "Nelly? I used to know a Nelly". Mark's face is more and more puzzled.

We are brought tea and cake. The tea is beyond disgusting, but Dad drinks it at speed and with apparent relish. I ask him about his lunch, what he had and how it was and he tells me, quite happy with the food. He's still bothered about the key to his room and not being able to make it work. I've tried several times over the last few days and it always works for me, but I suggest we try it again on the way out.

"How old is she?" Cecily asks. "8 months" I say as we rise to the sound of "8 months? My boys couldn't sit up until they were well into their teens, she's a marvel that one". As we walk off to try Dad's key in his room lock again I hear Lily shouting after us "Whit's the bairn's name you ignorant bitch? Dinnae you walk away fae me! I'm only askin' wit the bairn's name is!".

Dad's key works fine. He rubs his head, baffled. He supposes it's just like when your toothache goes once you get to the dentist. But, he says, he noticed that I used that side of the door that was outermost, did I think it would work if he used the hidden one. Now I'm baffled, I ask if he means from the inside and show him how to lock from the inside. He gets cross with me. "No, no the hidden lock, the hidden one!" "Your no blinking use in these things, if your sister was here she'd get it sorted". I'm sure she would Dad, I'm sure she would. But she's not and you're stuck with me. And I'm stuck with you.

On the way out we bump into Cecily. "How old is she?"

Monday, October 23, 2006

Friday 13th October 2006 – Not so much Friday 13th more Nightmare on Old Street

When Ellie and I arrived, Dad was sitting in the sunny bit of the day room but as there was nowhere for us to sit with him I suggested we move to a table, then Ellie would be able to draw and we could all sit together. Dad agreed but obviously didn’t know what he’d agreed to because he didn’t move. After repeating and explaining and cajoling several times, I gave in, took Ellie over to a table and tucked her chair in, then went back to try and persuade my Dad over to join us. He just couldn’t grasp what I was saying, so I eventually just manhandled him onto his feet and pointed him in the right direction, then he shuffled obligingly after me.

I tried asking him how he was feeling. He was trying to tell me about a pain he was having and about why he’d been so down the previous evening. It was like a physical pain for both of us to try and get the words out of him, he’d start to try and think of a word, get frustrated, say the wrong word, get angry with himself, then flicker off to unconsciousness briefly, then fight and pull himself back to the living world with a word, any word, grasped in his jaws like a prized catch from the sea depth of his mind. It’s so difficult when he’s like this not to try and suggest words, but often when you do it’s your words and nothing like what he’s trying to say. It’s so frustrating, you want to scream, you want to shout, and I get grumpy.

Cecily came over to the table and pulled up a chair. She often seems to think Dad is her husband, and that Ellie is her daughter or at least someone she’s attached to, someone she knows. Today was such a time. She was telling Ellie that she’d get her a doll for Christmas, asking her to come to her house, took a drink from Ellie’s bottle, asked her for some of her chocolate and kept touching her hair. Then started to rummage around in her clothing, and eventually pulled out some folded and scrunched up tissues. She started to unfold and smooth them, and hand then across the table to Ellie. I noticed just in time that they were wads of used toilet roll. I pushed them across the table at her and asked her not to give Ellie anything, that I was trying to teach her not to take things from people she doesn’t know. I should have thought it through though, because as she was of a mind that Ellie was her daughter being told she was a stranger didn’t go down too well. She became very vocal, telling me I was a bastard and I should fuck off, no-one wanted my type here anyway and forcing the shitty paper back across the table towards Ellie, who was bewildered, Dad was oblivious and trying to pick something from his sleeve that wasn’t there and not noticing the drool that snaked from the corner of his mouth dripping off his chin. In the background Bertha was screaming for her Mammy again, the TV was blaring Philip and Fern and then a carer put on Daniel O’Donnell. My mind was an Edvard Munch. I ask Cecily to go and talk to someone else. I’m not rude but I’m far from pleasant. I’m not ‘nice’.

Dad was hitching his trousers round his fly area so I asked him if he wanted the toilet, and he confirmed that he needed the little toilet, but the big toilet too. “Look at him, feeling his wullie, and you want me to go away, ya snobby bitch” Cecily spat as she wander away. When I take him to the toilet, he asks if this one will accommodate both or does he have to find another for the heavies. I kiss his cheek, tell him it’ll be fine and I’ll see him tomorrow. I leave with his drool on my face and feeling so small, so unpleasant, so disappointed with myself for not being kind.

22nd October 2006 – Lionel Blair Hopefully today

I’d noticed this man for a couple of weeks. He’s very smart, very neat, early 50’s I’d reckon – but I’m really bad at judging age. His face is vaguely reminiscent of Lionel Blair. He’s very tanned and smiley but his smile doesn’t reach his eyes. His face is creased in the set pattern of wrinkles for a smile but he doesn’t look happy, doesn’t look like a happy person. He looks like he works in a profession where he has to be pleasant to people that he doesn’t really like, teeth bared, grin fixed and all the time murderous thoughts racing through his brain. A hairdresser, a recetptionist or an air steward. He comes to visit his mother. He comes in most days.

I spoke to Lionel today. I’d seen his name when I signed into the visitors book at 1.45 that he’d been in since 8.45. At first I thought he’d just not signed out and when I saw him I was surprised. Something must have registered on my face because when I smiled he came over and started chatting. I made a comment about the weather – usually a safe gambit – about the sunshine and coldness. He said he’d not seen much of the day. He’d been in since early that morning. “So he has been in since 8.45” I thought. He was hoping it’d be today. He was hoping there’d be news today. He was speaking like an expectant father. Like he was waiting for his wife’s labour to end. But he wasn’t, he wasn’t expecting a birth, he was expecting a death. His Mum was in her room today, and he was really hoping it’d be today. He wanted to be here when it happened. He’d been in all yesterday, finally got home at 1 in the morning – only because the sister had said she thought it’d be ok she’d last ‘til the morning. But he was hoping she’d not last much longer. “It’s so difficult isn’t it?”

I was stunned. “Yes, it is difficult”. And I realised that I could talk to this man that he’d understand, not bustle in a friendly manner, not pretend everything was ok, not patronise. But he had other things on his mind just now. He wanted to be there when his Mum died. But he took time to ask if this was my Dad, and I said it was. “He’s happy anyway, smiling away there”. Then he shoutingly asked Dad “Did you get your lunch? Nice lunch?” and Dad replied “No, thanks. I had something before I left the house”. Lionel’s eyes met mine and we exchanged a thousands thoughts “Yes, it’s difficult” we both say. He made to go, and I want to say something, something wise and sustaining and of solace. But I didn’t know what. I didn’t want to blurt out “I hope she dies soon”. So he went back to his vigil. And I was left wondering if I want to be there when Dad goes, do I want him to die with no-one there during the night all alone or do I want to be there. I was surprised when I realised I do want to be there, I don’t want him to die alone, I want to be there and hold his hand and help him.

21st October 2006 – So these are my legs then?

When I go in today, Dad was trying to pick up an invisible something from the floor. When he realised I was there to visit him, he wetly kissed me on the cheek and I said we should go and sit down. I’d noticed two seats just at the edge of the day room were free and I had my eye on them. You get a bit of privacy there, there’s no real way anyone can join you for long as there’s no other seats and they are in a corridor, so people tend just to keep passing by. I didn’t want to go to the visitors room, yesterday it had been stinking, someone’s lunch I suppose, the floor had been covered in ground-in food. And it feels like a storeroom, with it’s odd un-matching broken furniture. It used to be a staff room, and the staff are obviously less than pleased at having to walk a bit further to eat their lunch. I’d mentioned at my care review that there was a lack of privacy, so I think it’s considered to be my visitor’s room. There are cups and saucers but no coffee or tea “Health and Safety you know, won’t allow it” – which is fine but then why leave the cups? By way of decoration there’s a broken ancient radio, which I find horrific, this thing that used to be able to sing, to talk, to entertain now sits broken, silent, useless and with everyone who comes into the room having a vain attempt to make it work again then giving up and ignoring it. And for reading there’s numerous copies of a booklet on dementia, all of which are covered in cups rings and food stains – so it would appear the staff aren’t taking those extra few steps to eat elsewhere. So, anyway, we head for those chairs in the corridor and Dad decides he needs to go to the loo, so I point him in the right direction, then re-point him, then take him directly to the door of the loo, open it and gently push him into it. I return to the chairs to claim them and wait. I don’t know how long it should take, and I’m mindful of the fact that he’s been locked in before so I’m very aware of the time stretching out. As 5 minutes turns into 10 minutes, I reckon something must be up. I notice Amy going over to the loo, which is just out of my eyeshot ( is eyeshot a word ? Earshot, eyeshot ? ) , round a little corner. I hear a shout of “Pull your trousers up” so I know he’s still in there. I leave it another 5 minutes, partly hoping he manages to deal with whatever is happening himself, and partly to allow him to avoid the indignity of me helping him. After 15 minutes I go to the door and knock. “Are you ok?” “No” “Do you want me to get help?” “Well, can’t you just help?” I hesitate. I don’t want to wipe his arse. I open the door. He’s standing at the sink and he can’t do up his trousers. The smell is overwhelming. I look over his shoulder – when did I start being able to look over his shoulder, when did he get so small? – and see the toilet seat, covered in shit. I get his trousers fastened, zipped up, belt fastened. I clean the mess off the toilet and wash up. We go and sit down. The first person to pass is a member of staff. Don’t know her name, haven’t seen her often. “You should have just chapped the door. We’re no really meant to use that room. It's just it's such a treck to the other room. If I’d known you needed it, I’d have come right out”. She's conspiratorial. I tell her I only like to use the room when I have the children in with me, that I’m not bothered the rest of the time. She smiles and is superficially pleasant but I don’t like her as she wanders off. Next comes along another staff member – this one I do know. She’s Susan. She looks remarkably like the last one, badly streaked hair, unhealthily, greasily overweight. She has two daughters, one about 6 months younger than mine, the other about a year older. She says something similar to tweedledum and I give the same response, that it’s just when I have the children here that I like to use the visitor’s room. She looks at me dumbly. I explain that they find it difficult and I relay a story to try and make her understand. One parents night I went to my son’s school and looked through his work while waiting for the teacher to see us and while trying not to despise my ex-husband, who is smelling strongly of mints, with top-notes of fags and booze. I read one printed worksheet called “Fears” What frightens you? Where is a frightening place? When where you last frightened? Who is a frightening person? What is a frightening event? Mark had written What frightens you? The thought of getting dementia and heights Where is a frightening place? The old peoples home where I have to visit my Papa once a week. When where you last frightened? Friday. Who is a frightening person? Anyone with dementia. What is a frightening event? Being kissed by an old woman with dementia. Susan says “Awwwh. Is he awfy sensitive?” as if there’s something wrong with him. I say that Ellie too finds it increasingly difficult, she knows that the people in here don’t make sense and it puzzles her. Susan says proudly “My two love it in here. They are always getting cake and sweeties. They’ve been brought up in here, the older one, she cries before we come in, but she’s fine as soon as she’s in and she’d had a bit of cake, she loves her food that one.” “Och well, as long as they’re happy” I say “ that’s the main thing eh? Anything for a quiet life, eh Susan, that’s what I say” I sell out. I tell her what she wants to hear, talk like I understand and agree with her. I don’t but it stops her staring at me and she says “Aye, yer no wrang there! Eh, I say, you’re no wrang there” and cackles off as if she’s just displayed the funniest, most brilliant piece of wordplay, something worthy of Stephen Fry. “Eh, I say, you’re no wrang there” she echoes down the corridor. What is it with these people – why even bother saying those words – what’s the point? I turn back to my Dad, who’s fallen asleep. No wonder, if that’s all you can do as a protest, then do it. Blank it out – me included. Quite right. Another carer comes up and asks us if we want tea or coffee. We’re brought tea for Dad, and black coffee for me. And cake. Sweet, sickly, calorific, yellow iced, yellow cake. Everything in there is laced with calories. I can hear the buzzer going – someone is outside and wants in. I realise it’s been going on for a while – while Susan was cackling – so I go into the office to see about opening it. No-one’s there but there’s a switch on the wall. I press it, realising it might be an alarm or panic button, but not really caring. The relative comes in just as tweedledee comes wandering past – accepting the thanks for letting them in. I hear a shouting coming from the corridor. It’s Amy, she’s shouting at Stella to use a zimmer, she’s stupid, she could fall and hurt herself – better she did, better she just killed herself and got her moaning face out of this place. Doesn’t she realise that’s why her family have dumped her here, to die. They don’t want her. Just wait ‘til her husband comes to take her home, she’ll be glad to see the back of the place and their moaning faces. Trouble is Amy’s husband has been dead for about a year. Stella’s crying. Stella cries a lot. I rush through to the day room, get a zimmer and take it to her, she looks gratefully at me “It’s no true is it hen, they’ve no left me here to die huv they?” I assure her they’ve not, that she’s here to get better. Dad’s dropped off again. The carer has taken away the cups and left a small plate of fruit for Dad. A few grapes and some strawberries. 5 a day, another tick in box. I wake him to eat the fruit “Dad, some fruit for you”. “My name’s not Douglas is it? Yes, it is, I’m Douglas Bader aren’t I?” “No Dad, your name’s Jimmy” “So are these my legs then?” “Yes, Dad, they're your legs”.

Wednesday, October 18, 2006

10th October – Kissed by a female impersonator.

Today was a first for me. The first time I’ve been snogged by a old woman. Margaret – who for a long time my Dad was convinced was a female impersonator – snogged me. Margaret is a very tall old lady, in fact she’d be a tall young lady and taking into consideration the stooping, she’s an exceptionally tall old lady. She talks garbage, constantly. In broken half sentences and made up words – a Stanley Unwin style of diction that I’ve long since given up trying to make sense of. But she’s generally happy and if you smile at her she’ll tell you she loves you. Occasionally she’s over friendly and plants you a kiss on the cheek. Today, she went a step further. As we were leaving, she appeared behind me and when I turned she loomed above me, took my face in her two gnarly hands and gave me a full on snog – and I mean full on. There were tongues – or rather there was tongue – clearly mine stayed firmly in my mouth, but she tried to slip hers in there too. And all the time holding onto my head with a relentless grip. When she let go and I could see and breath again, I saw her top set of dentures hanging down in her mouth, smeared with scone and jam.

3rd June 2006 - Mum's 75th Birthday

Today would have been Mum’s birthday. Don’t think there’s much point in telling Dad, reminding him.

I talked with one of the other relatives today. Susie she’s called, she’s a bustly busy wee lady who comes in daily to care for her husband Donald. When Donald first came he was mobile, and could speak, could engage you in a conversation of sorts. I remember once he fell onto the floor of the Quiet Room when Dad, Mark, Ellie and I were in there. I tried to help him up but he was too heavy and I had to get a staff member. Every time – at the beginning – that Susie left, he’d weep, break his heart and wail, desperately, un-consolably, because he thought she’d left him, actually left him and wouldn’t come back. It was only a matter of weeks until he stopped crying, then stopped talking and now moving. He’s so shrunken, so small. He’s not an old man, Susie’s not an old woman. She comes in every day, feeds him, talks to him, helps with his care. And she’s always chirpy.

18th June 2006 – Daisy, daisy

I noticed today that I hadn’t seen Daisy for a few days. Then I noticed I hadn’t seen Molly. Molly – with her enormous leg – was always either in the chair by the door, or shuffling it down to sit outside her room. And Irene, where’s she been, haven’t seen her for a day or two either.

I ask Susie – who’s there so often that nothing much gets past her. They all died, Daisy in her sleep, just of old age, Irene just dropped down dead – undiagnosed ovarian cancer apparently – and Molly struggled against death but it got her too, heart failure.

I wonder if I am the only relative that feels a little jealous and I suspect I am. I look at Susie’s face as she lovingly cares for Donald, feeding him a thick creamy calorific yoghurt and wiping his chin and I know she’s not jealous. I look at Jim, reading his paper one-handed because, sitting beside his sleeping wife, he won’t let go of her hand. I know he’s not jealous.

I look across at Dad. And I’m still a little jealous and a lot appalled, appalled that I really want this man’s life to end. I know it’s not just for me, I don’t want him to get worse, to have the flashes of lucidity and clarity when he knows what’s happening and gets scared. I don’t want him to lose his dignity, to end up being helped in and out of a chair and fed calories. I know it’s not just for me, but a bit of it is. The bit that wants to stop coming here, the bit that never wants to smell that smell again, the bit that I’ll ignore and come back tomorrow and the next day and when I need to I’ll feed him thick yoghurt.

23rd May By Jingo

My Dad is the only person I’ve ever met that actually says things like “By Jingo” and “Jings” and blazes, blinking and all those other non-swear swearie words. I’ve never even heard him say bloody. Even now, trapped in his ever tightening cell, his window on the world closing and closing, he never lets slip a bugger instead of a blast it all. “Well blow me”, that’s another favourite. What does that mean then – apart from the obvious?

I’d not be like that – I’d be a swearing mess. I’d be a tourrettes Tommy of a dementia person. If you stripped away my social niceties, took off my cloak of respectability, I’d be a horrible old woman. I’d shout and scream and frighten. I’d not go gently. I’m going to burn and rave at close of day. I will rage, rage against the dying of my light.

Thursday, October 12, 2006

12 th December 2006 - Still trying to please Mum

It occured to me today - I think for the first time - that I visit Dad as much as I do not for him, not even as a penance, not even to force myself to be a better person but in fact to please my Mum. My long dead Mum. My long dead Mum who once had the opportunity of saving me and didn't take it. Why have I always sought the approval of a woman who wouldn't protect her daughter?

When I needed her to believe me, to protect me, to mother me, she was more concerned with appearances, with not making a fuss, with not getting the outside involved in our lives, than she was of stopping her father hurting me. In the long run I found out that she'd been abused as a child, by someone outside her family, who hung himself when she told her Mum. Her Mum didn't tell her she was lying. Her Mum didn't tell her that her stories would mean her brother and sister would be put in care. Her Mum went to the police. And he hung himself. Maybe she'd been tormented by guilt for his death all her life and thought things better left, not upset, "don't rock the boat". Her Dad wasn't really her Dad - does that make it better?

Two weeks ago my Dad told me that he wasn't my Dad, that my Mum's Dad was. I don't know if he knew what he was saying, don't know if he knew who he was talking to. I'd suspected he wasn't my Dad for a couple of years but it hadn't occured to me that my 'Granda' was. He once said "yer Mum used to be my wee girl, but your my wee girl now". What this meant has changed in my mind over the years but it never occured to me that he was really my Dad.

Anyway, it doesn't matter who is my Dad. This Dad, this old man, needs someone and - ironically enough - it's me that's in a position to be there.

15th September - Singing in the pissing rain.

We went into the Smoking Room to sit today, just Dad and I, kids were with my friend. The high backed arm chairs in that room are covered in a kind of thick plastic. I found out why today.

The lady of the new couple was sitting beside her husband, both in these chairs by the fireplace. There's no fire, just a fireplace adorned with dusty artificial flowers. He was dozing, as was she. She woke up and stood, with the aid of her cane and told him she was going to the loo. As she turned I noticed the upturned 'u' of wet, her trousers were soaking. When I looked at her chair and it had a puddle of pee on it too. She went anyway and when she came back her husband looked up, smiled and patted the chair to encourage her to sit back down. His hand made the puddle of pish splash like Gene Kellys outstretched foot as he danced through the puddles in Singin' in the Rain. What a glorious feeling I'm happy again.

She sits down and I wonder if I should tell him, how do you phrase that "Excuse me, but I think your wife, the woman you loved for all these years, who bore you your children, who you lay with and loved all those times, is sitting in a puddle of piss".

As always I do nothing. I'm laughing at clouds, so dark up above, the sun's in my heart, and I'm ready for love.

20th April 2006 - Have you heard the news?

"Have you heard the news?" my Dad met me with today. "No, what news" I say rather warily, a vague resigned dread creeping over me. In the past week we've had the reintroduction of old money in selected Ayrshire villages "I ask you how's that going to work, it's just daft", the face of Jesus turning up in the grain of the door to his room "I'm not a catholic, wonder why he's appearing to me?" and him trying to use the handrail that runs all round the corridors in the home as a cash dispenser "I can't get any damn cash out of this thing - can you help? No, of course you can't, you've never been much practical use - neither use nor ornament as your Mum used to say". It's not that he has these flights of fancy that bothers me, it's not even the bafflement they cause in me when I try desperately to make some sense from them, to piece together recent events or current surroundings to come up with some thread, some track that I can follow to make sense of the fragments. It's the fact that they nearly always end up with him telling me I'm no help. It's like waiting for the catchphrase in a sitcom. When is he going to tell me I'm useless.

"Well Moira's dead" he says. Moira is my sister. "It's not as bad for you, you've still got Colin, but there's only ever been Moira for me". Colin is my brother. It's then I realise he currently thinks I'm my Mum and that's he just confirmed what I always knew - Mum favoured Colin, and Dad Moira. Interesting little insight there.

I convince him Moira's not dead, he's calm again. I want to hold his hand, but I can't. How horrible must it have been for him to think his first born was dead, he must have been grieving, must have been feeling. I look at him as he flickers in and out of sleep, dimming and briefl brightening. What does he feel, does the dementia change his feelings as well as his thoughts? I suppose it must - what is a feeling if not a thought? I hope the dementia numbs his feelings, takes away his pain, his loneliness.

Tuesday, October 10, 2006

Christmas Party 2005

In some fit of “It’s Christmas and it’s family” I decide we should all go to the Christmas party at the home. My son’s unfettered facial expression was a caricature of my husband’s disguised reluctance. But I had my redcoat head on, we’d go and we’d have a good time – it was family after all. I got Ellie dressed in her angel costume, I put on my good shoes, Mark and Sean got smartly dressed and we went. Not a lot of conversation in the car on the way there, as you might expect, apart from my little sunshine ray, my little Ellie, chirpily burbling away in her car seat.

There was a magician. He wasn’t very good. In fact, he was dire, but you couldn’t help feeling a little sorry for him. His sleight of hand wasn’t even good enough to fool the demented and Lily kept giving the game away on each and every trick with increasing vehemence and profanity. His last trick was a card trick and summoned a “It’s the Jack of Hearts ye daft cunt, I saw you put it at the back. Away hame, yer shite, we’re auld no fuckin’ stupid”. Concisely put really. I’ve always admired the way Scots people – myself included – can say shite. Not shit which sounds the same in every accent but a well timed, well sing-songily pronounced ‘shite’ expresses so much more than ‘shit’.

There’s food, and it some of it’s ok, if you block the memory of Bruce pissing all over the Halloween food from your mind. I’ve overfed my family – unbeknownst to them – to avoid them wanting to eat much. But I try bits and pieces and fight the urge to drink the cheap sherry. Mark entertains himself with the crackers, forcing everyone he’s not terrified of to pull a cracker with him, despite the poor return by way of plunder. He’s not as scared today, it’s the evening so the residents are more subdued – the afternoons are the most lively, the most vocal are at their most vocal, the drooling drool more, and the shufflers still have enough energy to shuffle around. We leave, a couple of staff notice us going early – “You’ll miss Santa! Just take the bairns presents – it’s part of the ticket price anyway. Did you get a drink? Enough sandwiches? See you tomorrow then doll, night night!” . When will people learn, my children are not bairns, they are weans. But looking round the room at the decaying people, with their party hats askew, party blowers drooping from their lips and their manic grinning relatives eyeing each other with “how long do we need to stay” eyes, it’s not a party, it’s not a family event, it’s not a celebration, it’s grotesque. Obscene. “Do you want to stay for the carols?”. I don’t think so ? Let’s celebrate the birth of our Lord? Born to us is a saviour? No thanks. We're auld no fucking stupid.

Sunday, October 08, 2006

14th May 2006 – Not much of a life

Sunday today, so I managed in on my own, leaving the children with my husband. Dad was pleased to see me, but very down. Almost the first thing he said to me was “All through my life, if there was a choice of two options, I picked the wrong one”. "Not much of a life, nothing to show for it, what was the point?"

Whilst acutely aware that I had not enjoyed my upbringing, and having discussed it with my siblings, knowing that they didn’t either, I’d always thought – in my incredibly self-centred, blinkered, shallow way – that bringing up myself and my brother and sister must have been a constant source of joy to my parents and given them all the fulfilment you could ever look for. Apparently not. Apparently far from it. Now, I’m not sure who he thought I was when he was talking to me today, I can only imagine he thought I was my Mum, I hope he thought he was talking to Mum.

16th February 2006 - The Hammer of the Scots

“Do you think you could do anything to sort out Edward Longshanks, The Hammer of the Scots” my Dad’s first words to me today. “He’s only playing at being good to us up here you know, he’s a cold bastard at heart”. Here again, for the umpteenth time, I’m unsure what the correct response should be. I plump for “I’m not sure he’d listen to me Dad” only to be met with a derisory “We’ll obviously not, don’t be ridiculous, but you could get your sister to talk to him”. Ah yes, yes I could.

“Yer in a old folks home” Lily is shouting “you daft old cunt. Yer Mammys been died 60 years, yer Da even longer an even when they were alive they never liked ye so there’s no point shoutin’ on them”. She’s talking to Bertha. Bertha does, very regularly, shout for her Mammy and Daddy and as she is to the untutored eye at least 100 herself, it seems unlikely she’s get a response from anyone other than Lily.

5th November 2005 - Remember remember.....what's in that bucket?

Today Ellie, Mark and I visited. The smell on opening the inner door caught your breath. We went to the Quiet room and I gave Ellie some chocolate buttons and Mark some chocolate bar. After 10 minutes or so I glanced over at the fireplace. There appeared to be chocolate all over the hearth and I was about to admonish Mark, when a horrible thought crossed my mind. I went over to the hearth and looked in the wastepaper basket that was just to one side. I knew as I neared it. I’d known from my chair really. It was full of shit. One immense motion. Gagging, I went to find someone to clean it up.

There are times I hate being me, being so bound in politeness or fear or inadequacy or whatever that I can’t react normally. This was one of those times. I’m sure it would be the normal reaction to haul a staff member into the room and point and shout and be righteously outraged. I found someone, said there was a bit of a spill on the hearth, I wasn’t sure what it was, and would she mind having a look and cleaning it up.

When she came, she gagged too. She said “I know whose that is too, don’t you worry”. I marvelled at this skill, although I couldn’t really think of a practical application for it. Game show? “Who’s shite is it anyway?” The residents that were in the room were oblivious to it all. I recalled being told that my Dad had been unable to find his loo in his room one time and had defecated in a plastic bag. He then carried that around with him until he could find somewhere to get rid of it. So maybe he was the waste paper basket offender. I found myself thinking of an ex-neighbour of mine who didn’t like my cats. She would constantly fling lumps of cat poo across the fence into my garden. I wasn’t sure my cats didn’t go in her garden and she was convinced that they did, so when she turned up on the door step with a nappy sack full of the stuff and a “Yours I believe”, all I could muster was “Thanks I’d been looking for those” and to take the bag off her as I shut the door. I moved quite soon after, but I made sure I knew that the new people had cats. Not good for my karma but there you go.

We left the quiet room and went to his room. Mark always prefers Dad’s room because there’s no loopers, screamers or dribblers. I don’t like his room because we’re surrounded by photos of ‘the family’ and it reminds me of how little his life has resulted in. I find it incredibly sad being in his room with my Mum, Gran, Uncle and Aunt smiling down from the walls. What was the point of their lives, why did Mum struggle, scrimp, stultify and stay married to this man? How would she feel if she knew he was walking around with a bag of his own shite? Then I feel guilty and promise myself, my Mum and my Gran, that I’ll do better, I’ll be kinder, I’ll be nicer to Dad. I’ll not be revolted.

9th November 2005 - I'm a geriatric - get me out of here!

Today Dad let me in on a wee secret. As he said “Since you are almost family”. Apparently, the home turns into a reality TV quiz show every night. He’s doing rather well too. There’s a selection every night and one of the residents is put in a room and disappears into smoke. He thinks he’s well in with the show’s host though – who is the late Leslie Crowther – and he’s amassed rather a stash of prizes and quite a bit of cash. Obviously, the prizes are invisible by day – he tells me – because the others would get jealous. He thinks that it’s on Channel 4 from 10 so I should tune in.

Strangely enough I do check what’s on at 10 on C4, I didn’t expect it to be some sort of OAP BB crossed with the Price is Right but I had a hope that there would be something I could make sense of, could piece together with other scraps to try and build a picture of what he might be seeing. Of course there wasn’t, isn’t, won’t be and I can’t. He’s just demented.

7th July 2005 - London Bombings on Dad's birthday

Today was my Dad’s 76th birthday. It also was the day Muslim extremists hit London. My sister and nephew live in London, and as the story unfolds I sit transfixed, watching the horrific images and getting growingly frustrated with the lack of information on the constant news programs. What’s the point of 24 hour news when it’s just the same 10 minutes repeated over and over. I phone, and they’re ok. She’d gone into work really early that day and was at her desk by the time the bombs went off.

I went to the home early to let Dad know they were ok, give him his presents and to wish him happy birthday. Last year I’d thought he wouldn’t have another birthday, this year I hope he doesn’t have another. And immediately feel awful for thinking it.

He was aware of the bombings but hadn’t remembered that she lived in London. My reassurances make him worry more, so I phone my sister so she can speak to him. She does and he forgets why they are talking. After the phonecall he notices the TV and the footage of the bombings in London and wonders if my sister is ok. I tell him she is. “When did the IRA go into cahoots with the Paki’s anyway?” No answer to that one really.

Birthdays in the home go as follows. They bake a massive – but easily chewed – cake. Soft butter cream icing on Victoria sponge with red jam in the middle. Icing pink or blue depending. They remind whoever it is that it’s their birthday, then everyone that can, sings the song, the cake gets cut and served with tea. Those that can eat, eat it, some are fed it and others get it liquidized. The remainder of the day everyone is a bit edgy. Many think it was their birthday and will repeatedly, and often with variance, tell you their age. They will also bemoan the fact that it’s their n’th birthday and not one card, not as much as a bunch of flowers. Lena varies from 32 to 104 and berates her family members for their lack of diligence in the card sending and present buying departments. “Useless bunch of bastards. After all I’ve done for them. All I want is a card but oh no. Just wait ‘til I’m dead, they’ll be sorry then”.

Dad was 94 today. He was much relieved when I told him he was 76. “Oh, that’s not so bad then!”. No, not so bad after all. So I suppose there must be some comfort to be had in knowing one is 76, with limited use of one’s arms, living in a care home surrounded by madness with an increasingly tenuous grip on one’s own sanity. Glass half full – at least I’m not 94.

15th March 2005 - Beware the Ides of March

“I’m dying aren’t I?” were my Dad’s first words to me today. I was still trying to wrestle Ellie out of her coat, hat and gloves when he asked me. I’m not sure what the correct answer would have been. I’m fairly sure my response was cowardly of me, unsatisfactory for him and very obviously dodging the issue. “Well, I suppose we’re all dying. You might outlive us all for all any of us know. But what makes you say that? ” Dad then started talking about earlier that day when he’d overheard someone talking about dementia – although, irony thickly plastered here, he couldn’t remember the word for it - and that there was no treatment for it. By the end of his story he’d spent so long trying to remember the words, who’d said them and the order they’d been said that he’d forgotten why he’d started it but it was obvious that he had heard someone saying that it was degenerative, incurable and eventually fatal. But his ever loving daughter sidestepped the issue entirely, giving him no comforting words, no hope, no positives to cling too, just dodge dodge dodge and wait ‘til he forgets what he’s talking about.

I left in tears. But tears that were probably for myself. I don’t know what would have been gained by answering truthfully but I know I felt I’d let him down by not being different. Sorry Dad, so sorry Dad but yes you are dying. Slowly, ebbingly, awfully.

11th July 2004 - Leaving Belsen

I’ve spent lifetimes at the home over the last two days, trying very hard to get my Dad’s room to look like somewhere he’d like to stay. It’s far from easy. I spend so long, probably giving time as a penance, but to little effect. There is no way of disguising the fact it’s one small room with a sink in it and a wee loo in a room off. There’s no amount of pictures, photo’s and placing of a ‘few wee bits and pieces from his home’ going to make this room look like a ‘home’ and not a room in one. No disguising the hospital bed, the panic alarms, the smell. God when will I get used to this smell. I hang graduation photo’s of us – his three kids – although if I were him I’d not want to be reminded of the education I’d strived to give the three children who’d now he needs them are leaving him in a room, in a locked floor that smells of the piss of strangers. Strangers mind, not even his own piss.

I try the bed in one corner, then the other – the remaining two being not available due to the sink or the loo enclosure. I decide to put it at 90 degrees to the long wall, about a third down to make a vague stab at a living area and a sleeping area. His named nurse comes in to meet me, and fairly forcefully suggests that the bed needs to be against the long wall to give one less way he could fall out of it. Makes sense I suppose, but means his bookcase can’t stay. I suspect a bookcase might be redundant in a few months anyway.

When my brother arrives with my Dad, he ( brother ) is in a foul mood. I’ve never seen him in a worse one. I suppose transporting one huge case, one large one and one small plus an invalided father through a London airport can’t have been an easy task. Especially as – it turns out – Dad decided when my brother turned up, that he would just stay with my sister. My sister was slowly going mad having him in her house, and had gone away for the weekend that Dad was to move out, to try and make it easier as she’d have caved in and not let him go. He was persuaded to go but had obviously been bloodyminded enough to make the journey as difficult as he could.

So my brother leaves, as soon as he can, which is understandable I suppose, he’d had his fill. The carer who is helping to get Dad settled in a friendly, cheery wee soul but the drawback – from Dad’s viewpoint – is that she’s Indian. The drawback from my viewpoint is that she talks to me, all the time and not to him. She asks me “What does he like to eat?”, “What did he used to like doing?” and “Is he continent?”. Dad meekly sits and listens, doesn’t pipe up. Even after I start repeating her questions to him to get him to answer for himself, she still waits until I relay the answer and then fires the next to me.

She leaves – to let us get settled in. It’s getting near 3 so I suggest we do to the day room for a cup of tea. On the way out of his room we pass Sleeping Molly asleep on the floor where she’s fallen. She often does this, just keels over and sleeps, quite often hurting herself in the process. We step over her. This could have been the first sign to Dad that the home was not going to be like a sitcom – no Waiting for God here, no perfectly able and mentally with it types with crackling sexual chemistry.

In the dayroom they are wheeling in the ‘non walkers’. There’s one woman who I swear is thinner than a skeleton, I can’t understand how she can be so thin and still alive. Her pose is fixed and twisted, both arms bent, like one of those bodies caught in lava, but she’s alive. Like a concentration camp body, thrown in a mass grave pit. Can’t move, can’t speak, but moans and breaths and hangs on.

Dad’s colour is leaving him. He’s shrinking. His eyes are filling up. We find a table and he’s served tea. He finishes his tea and says “You’d better get on then. No point both of us being in this madhouse” and I leave him. Leave him in Belsen, in Bedlam, in living hell. And I weep. Weep for Dad, weep for what I've seen, weep for not being more of a person, weep for my inadequacy. And then I'm angry with myself for my self-indulgence, I want to go back in and tell him to come with me, he'll come and live with me and I'll not take no for an answer. And then I know I'm not going to, that I'm not enough, that I'd hate him, that I'd resent every minute I spent with him rather than my children, my longed for, precious children. So I cry.

Tuesday, October 03, 2006

8th July 2006 - Knock knock.

My daughter – who’s now 2 and a half – has discovered the joys of the knock knock joke. Word of warning here – if there are people around you suffering from any form or degree of dementia, do not try and engage them in any sort of banter that requires appropriate responses at any time. This was Ellie's mistake. With the determination and lack of flagging spirit that is so joyously present in a toddler, she was bloodymindedly trying to tell a Knock knock joke today. If ever GroundHog Day existed – it is in a care home. The exchanges went like this…..

Ellie – “Papa, Knock knock”

Papa – no response

Ellie “Papa, Knock knock. You say who’s there”

Papa “Is there someone at the door”

Ellie “Papa, Knock knock. You say who’s there. Joke, I make a joke”

Papa “Why don’t they ring the bell. No hang on, there’s a buzzer here isn’t there?”

Ellie “Mummy, tell Papa knock knock”

Me “Dad, Ellie’s telling you a joke, a Knock knock joke.”

Papa “It’s no joke, there are people trapped out there. That’s always the trouble with you, you never take anything seriously unless it concerns you. Selfish”

Me “Who’s there?”

Ellie “Justin”

Me “Justin who?”

Ellie “Justin time for tea!” “Joked ya!”

Papa “Justin who?” “I don’t know anyone called Justin. Or do I. Hang on, I do. That’s me isn’t it? I’m Justin. Am I trapped outside too?”

7th October 2006 - Rab's Hands

The top of Rab’s hands look like a frozen late autumn puddle, brown red, transparent, cold and clammy. It’s those hands I watch him try to strangle Stella with, before I shout for help. Rab’s a weird one, even for there he’s odd. His backbone would appear to be an S shape, a permanent question mark. And whatever drugs he is on have the effect – side effect presumably – of making his lower eyelids peel open. When he looks at you it’s like a bald bloodhound with half moon glasses, dribbling. He shuffles like a character from Scooby-Doo, with his hands outstretched, head at a tilt, drooling and moaning. Then, once, he came into the office when I was talking to the sister about Dad’s care and reasonably coherently asked to go out for a walk, and when told it was raining to wait until the rain went off, negociated his way out of the room perfectly and waited for the rain to subside. When it did he came back, and someone took him out for a walk. I’d – up until then – have thought he was helpless and hopeless, mad and wandering in the dark but he’s not, he can look forward to things, he can communicate and he can appreciate reason. And he can strangle those that annoy him.

End September 2006

Stupid people. What is it with stupid people. Why are there so many of them who think they are smart, who think they are the clever ones, that have life figured out, life sorted and the rest of us are fit for their ridicule and eye rolling derision? And why, why when you've made a remark that is hinting at a joke, but not stating the bleeding obvious, do they do just that and present it to you with a flourish as if they've just invented the light bulb?

Stupid people. A lot of stupid people work in the caring professions. Now, I know that's not a nice thing to say, but there you go, I'm not a nice person - as it turns out. But, if they weren't stupid they wouldn't be doing the job, they'd have a better paid job. If you leave school with no qualifications you can go and work in McD's or you can help old folk on and off the lav. Personally I'd be brushing up on my "Do you want fries with that" as I left the school gates rather than do the job, but that's me and - as it turns out - I'm not a nice person.

Don't get me wrong, there are some wonderful individuals who work in the caring professions, who really do care, who are doing the job because they like working with old people, because it gives them a sense of pride, of worth, of putting something back to look after old people in their last days and to ensure they maintain as much dignity as possible. But, there are many, many more who do the job because it pays a bit better than McD's and you get public sympathy "I don't know how you do it! You must be so strong to be able not to take it home, not to get depressed!". They are not strong, they're just unimaginative, unempathetic. Stupid. And they treat me as if I'm stupid, worse they treat my father as if he's stupid. But then that's me and - as it turns out - I'm not a nice person.

He's not stupid, he's not deaf. He doesn't need his hair ruffled and to be told he's a good boy. He's not stupid, he'd not deaf and he's not a dog. No, I'm not a nice person because today I want to punch the staff, every time one of them shoutingly asks him if he wants a cup of tea.

"Do you want a nice cup of tea? I say, Do you want a nice cup of tea?" - no response - "I'll get you a nice cup of tea, and a nice wee bit walnut loaf".

Dad - very clearly - "I don't like nuts".

"What's that? You do, you like cake, a wee bit cake and a nice cup of tea, just what the doctor ordered. Wish I could spend my days having a wee sit down and getting brought tea and cake, eh? I say It's no a bad life, waited on hand and foot - eh, eh? I wishh I could spend my days having a wee rest and a cuppa!".

No you don't. You don't wish for this life. No-one could ever wish for this life. And he doesn't like nuts.

"I don't like nuts - do I?" my Dad asks me. "No Dad, you're right, you don't". He looks pleased, pleased to have remembered a bit of himself. But he eats the cake.

As I drive away, I know it's not the staff member's fault, it's how they deal with what they see day in and day out. And I know they're not stupid. I feel humbled and ashamed that I'm so judgemental. No - as it turns out - I'm not a nice person.

22nd November 2005 – Tuesday.

He was in the quiet room, which is now the smoking room because of Amy. Amy who has set on fire the last two homes she’s lived in. Amy who smokes. Quite a few of the residents are smokers, but they forget that they are. They only ever smoke when a visitor lights up for them. But not Amy. She smokes, but forgets that’s she’s has one so every five minutes will ask for another cigarette. Apparently she’s not actually a heavy smoker – 5 or 6 a day if she’d only remember she’d had them. She’s covered in nicotine patches too. Never remembers to take them off.

Anyway, we were in there. He was with ‘the new woman’ who’s now Mrs Fulton. Amy was ‘the new woman’ but she’s Amy that smokes now. Mrs Fulton is called Irene. She’s very polite, obviously been well educated and a bit posh. She’s also completely barking. Daft as a brush. She and Dad were chatting when we arrived. I say they were chatting, they were sitting beside each other and taking turns speaking.

Countdown was on, post-Whitely. It’s the first time I’d seen it since he died. Countdown in the home is a surreal experience. As the letters are displayed, licking Bruce, licking away, exclaims that he knew each letter before it was chosen then gives his various suggestions for words, usually bearing very little relation to the letters concerned. He then announces he’s good at Countdown and wanders off, licking his face as he goes. Just once if a while he'll yell out a word that's dead right - better than dictionary corner even. And once, just once, licking Bruce stayed for the conundrum and got it right. Licking Bruce, not only licks all the time, but never ever stays in one place for more than two or three minutes. He wanders continually. Like a polar bear, pacing and pacing, back and forth. For a spell my Dad thought Bruce was my brother Colin in disguise. He thought he was on some sort of surveillance operation - very hush hush you know. Bruce doesn't even bear a passing resemblance to Colin so I can't link that one for him. I often try to link his thoughts with reality - I used to be convinced that there would be a path there - breadcrumbs through the forest - a path that if I tried hard enough I would be able to follow.

Mark was annoying me by lying on the floor and playing with his sister. I hate when I get annoyed with him for doing something so natural but I can’t help it. I don’t want him lying on the grubby floor, I imagine one of them tripping over them when I’m not looking, or remember the shit in the bucket incident and dread my children see something like that. It’s only a month ago I saw licking Bruce piss on the Hallowe’en table. Mrs Fulton makes to go so Mark and Ellie get up out of the way and I'm relieved.

"I'm not sure she's all there" Dad confides in me after she's out of earshot. "I know this is a big place but surely she can read the signs?" he continues. "What signs Dad?" I ask. "The platform numbers! She'll not get to Edinburgh from here, she needs to go to Queen Street for that. Well, it's not my fault if she's lost, I'm waiting for the circle train, but it's late as usual'. As Lily zimmers past he inclines "She another one I'm not sure is the full shilling - poor old soul. She's after a bus - in a train station mark you" and he rolls his eyes skyward. I see Mark's eyes silently pleading with me to go as Margaret veers towards him and Ellie screeching "Och, yer lovely, yer lovely! Come here 'til I see ye's! An me withoot ma purse! Och, yer lovely!".

So we leave Dad, leave him waiting for his circle train.

27th October 2005

I remembered today –as I do from time to time – that I never really liked my Dad very much. It’s easy to forget the person he was, both the good and the bad, being swept away in feeling sorry for him. Ellie was being a child, she was happy and was laughing and giggling. Most of the other residents are oblivious to her being there, those that are aware are all incredibly pleased to see her and captivated by her. Even those that are virtually catatonic occasionally have a flicker of life when they see her. But my Dad shushes her. My Dad tells her to ‘simmer down’ like he did to me and my siblings 30 years and more previously. My Dad is embarrassed of the little noise my little daughter is making, in the midst of the tourettes of verbal emissions around us, my Dad says ‘Shush shush shush, there’s people trying to sleep, simmer down and don’t cause a fuss’. And I want to hit him. I want to scream and shout and tell Ellie to scream and shout. Anyone in there isn’t trying to sleep they are desperately trying to wake up from the living nightmare that their lives have become. But not my Dad.

Today was a bad day because I didn’t like him. Tomorrow will be better and I will be better and able to feel for him again. I will be nicer tomorrow. Tomorrow I will remember to be kind. I’m sorry Dad.

Hallowe'en 2005

Is it wrong to take a child dressed as the Grim Reaper into an old folks home? I was about to find out. My son Mark – who’s 8 going on 9 going on 40 something is dressed as the GR, Ellie is dressed as a cat. We drive up to the home. I look at Mark who hates going into the home and he’s doing his steeling himself routine. I’ve seen him do it a few times before. He stops, you can see him thinking, talking to himself in his head, then he braces himself, grows about an inch taller and lunges forward to meet whatever it is he’s having to face. I first saw him do this – or maybe not first but the time I first acknowledged that was what was going on – when he was getting taken away by an air stewardess to go on his first airplane journey on his own. He was going to Southampton to see his Dad. He steeled himself and went. He looked back and waved. I went to Costa coffee and cried into my Earl Grey. I had to wait until he plane was off the ground before I could leave, proud, scared, angry and lonely, but my boy just stood a little taller and breinged on.

When I see him steeling himself I decide not to go in. I don’t want to keep putting him through it. Maybe it is good for him to see how life can be, maybe it will make him more rounded to know how difficult life can be for older people, maybe but I don’t care just then. I don’t want him to have to see the sights in that place or smell the smells or feel the fear or have that desolate despairing cloud touch him. And I see him lighten as I say we’ll give it a miss because Ellie’s looking tired. He looks in my eyes and he knows I’m lying and I see him soften and fill with tenderness because I’ve understood.

It was as well really. I go back later after dropping Mark at his Dad’s. We don’t stay long Ellie and I. The place is all set up for the party that evening but out of the corner of my eye I see Bruce pissing on the table, all set up with sausage rolls, pizza, cakes, big pitchers of diluting juice and the usual party stuff. Spraying liberally over the spread, really quite an impressive hosing dousing action he’s got going. An orderly zips him up and wipes the piss off the table a bit. I mention it on the way out to an unsurprised looking sister who doesn't seem in an huge hurry to do anything about it. But over my shoulder the staff are talking to each other and putting the food from their own plates back on the tables. Bruce's smiling. Bruce's coaxing the old ladies to have some food and wee drink. Bruce's not as daft as I thought. But Bruce's not very nice, but then how nice would anyone of us be trapped in there if we had any of our marbles remaining. I'd piss on the food too.

In the beginning there was.... Dad

I lived in Edinburgh, my sister in London, my brother in Glasgow and my widowed father in Ayrshire. I saw my father once a week when he came to visit me on a Sunday. He’d been doing this – uninvited for the most part – every Sunday since my mother died eight years before. He did this regardless of what was going on in my life – marriage, divorce, affluence, pennilessness – didn’t matter. He’d pitch up on a Sunday stay for 6 hours, in which time he’d expect a cup of tea every 45 minutes with a Kipling type cake, Sunday lunch, use of the facilities and that was about it. In return he’d bring a pack of 24 Tesco fairy cakes. There was roughly 15 minutes of conversation spread over those 6 hours. But as he said – it was company for me. I’d iron.

It’s not that I hated him. I just never felt like I’d ever known him. Growing up he’d always been there, but never really involved. Mum was involved, for good or bad she was involved. He once told me – long after she was dead and when discussing why he thought it was good that my husband was out working on a Sunday ( he wasn’t he was in the pub but I’d never have dreamed of telling Dad that my husband was a drunken bully who spent all my money ) – that he’d been happy to work shifts because it meant he could avoid all that family life stuff that he’d never really liked.

I didn’t notice anything was wrong until he had a turn. He ended up in hospital because he was confused more than anything and it turned out he had an irregular heartbeat. Talking to the doctors the confusion was put down to poor diet, dehydration and just ‘getting old’. Poor diet – well that struck a cord – pie in a tin, processed peas and packet mashed potatoes. Before that my mother’s cooking was to be consumed to be believed. Chicken curry made from chicken scraps, a tin of processed vegetable cubes and cornflour. No spices, no herbs, not even curry powder. Remarkable. And despite the gallons of tea, dehydration was obviously an option.

When I visited him in hospital, though, it was apparent that his confusion was extreme. As he described to me a procession that had gone through the ward led by shepherd boys and followed by a huge golden pyramid, I tried to make sense of it. His description of this unlikely event was so detailed and so unshakeable that I even asked the staff about it. When told that nothing had happened even vaguely like what he described, I then tried to rationalise it and thought that maybe someone walking with a drip stand could be mistaken for a shepherd, that moving a bed could be part of the procession he’ mentioned. When he told me that the walls were talking to him I took that to mean that he could hear conversations from other rooms, unused to hearing other voices as he lived alone. When he couldn’t find his razor when it was so clearly in front of him – well we’ve all been looking at something but didn’t see it haven’t we?

I don’t know if I didn’t want to think that he was ill or if I really didn’t notice or what. Maybe I didn’t want to have to deal with it, with the inconvenience it might cause, but I really don’t think it occurred to me what dementia was or that he might have it.

He got more wandered as the next few months went on until he went to stay with my sister in London for Christmas and New Year of 2003/4. I was pregnant – due in late January and rather relieved not to have to see him or worry about where was spending Christmas. I didn’t even phone them on Christmas Day as I remember because I fell asleep and when I woke it was a bit too late to phone. On Boxing Day my sister called to say he’d had a fall. It all really blew up from then.

I suppose I really let them both down at that time. I was so wrapped up in being pregnant and then in the baby that I didn’t really have time for them. In my defence, this baby – who turned out to be my daughter Ellie, Dad’s first granddaughter – was a baby I was told I would never have, that I would need egg donation to be able to have another child. So I think being a bit focussed on her is understandable, if not completely forgiveable. My sister is a single parent of a – then – 3 year old boy. She is a very successful career woman who totally adores her son. She has help in the form of ‘help’ and very loyal friends but she has no surrounding family network. She does not have an easy life. It was on she that the very heavy burden of the first few months of my father’s decline fell. No pun intended as fall he did. And frequently. He broke his left arm and elbow first. It was a bad break above the elbow and she’d not hear of him going home and brought in a carer to help. He tottered about. He fell again, broke the other arm in a similar place. He needed a muscle and skin graft. He acquired a hospital MRSA-type virus. He was operated on again and again. All the time he was become more and more demanding. He was confused. He escaped from hospital and found his way back to my sisters in his slippers. He couldn’t be left in a ward without upsetting the other patients. My sister was having to chose between seeing her son and her father and feeling guilty either way. Her son was acting out in attention seeking ways – and as I have always said if a child is attention seeking, then give them attention.

Whenever possible I’d drag my partner, son and daughter down to London to let my sister have a break, but it wasn’t often possible and it wasn’t enough. Then came the diagnosis after a CAT scan. He had multi-infarct dementia. My sister needed help. My brother wasn’t able to help out much, I was slightly more so but still not enough. She was willing to have him permanently to stay with him, convert her house to make it easier, but I wasn’t happy that she should take our increasingly demanding father on as a house resident rather than a house guest.

In Edinburgh I went to see a number of old peoples homes. I’ll never forget the first one I went to see. As you approach you notice the pretty grounds and the well kept borders. You notice the security and are mindful of it, knowing that there are vulnerable people inside, you’re glad of it. Then you open the door, or rather it’s opened for you, and the smell hits you. Council homes, BUPA homes, private homes, they all have the same smell. It’s not like a hospital, it’s worse. It’s air freshener, over disinfectant, over overcooked food, over piss and shit, over decay and death. It’s awful and you don’t get used to it. Every time you walk through the doors, even if it’s several times in the same day, the transition between real air and that smell hits you.

Anyway, I went to see a few. There wasn’t much to choose between them to be honest. If you have money, then it’s taken from you for the council homes until you haven’t got any money left. If you are in a private home then they take your money until you haven’t got any and if you outlive your money the government then pays for you. Whatever, these days, if you have money and need care you will spend every penny you have spent your life earning until the point that either you die or the money runs out. And then the welfare state – that you’ve also been paying for all your life, will take care of you.

My fathers house sold. For more money than he could ever have imagined having. And there would have been no point in him imagining it anyway because it was about to be given to pay for his care. The decision then was where to pitch the level of care. On a good day, he just needed meals on wheels, on a bad day he needed someone there 24/7. Do you pitch it at the good day and accept that he might fall and lie there for a day or so? Do you go for the 24/7 and piss him off? Do you tell him that he has dementia? Will he understand what that means? Do you have the right to be making decisions for him? It really is a minefield.

The choice then became where rather than how. None of the three of us had all of the space, the will, the money and the time. So it made sense for him to be in Edinburgh, nearest me, who had the biggest combination of those elements. At first I thought I could visit a couple of times a week, but it soon became every day. Not because he demanded it exactly, although he’s not above emotional blackmail when he wants to use it, but more because I feel so horribly guilty if I don’t go. So I chose a home, and started the ball rolling to get him installed.

The pre-amble

Introduction

To be honest this is not really a diary. Not a blow by blow account of what has happened, as it only occurred to me to start recording it on the 11th of October 2005. I’ve filled in the time prior to that with a rough accuracy on dates and remembering the feelings as well as I can – although the feelings that I’ve had during this horrendous journey are easily remembered – if only they were as easily forgotten. I’ve changed some names, some family stuff. Many events and a lot of the background is fanciful, but the reality of living with a parent with dementia is there - I hope.


Multi Infarct Dementia

A brief trip to the internet - which anyone being told a relative has dementia can hardly avoid taking – will quickly yield very depressing but also very unsatisfactory descriptions of what to expect. There are no timescales, there is no adequate description of what can be considered ‘normal’ and what not, there is so little information or help on what your relative will be going through, or what to expect for yourself.

For example – as a definition …..
Multi-infarct dementia develops slowly. The first sign can be impaired memory. Eventually this impairment becomes so serious that something is obviously wrong. Dementia starts to show and everyday tasks become more difficult - and sometimes impossible.At first, the patient may suspect that something is wrong and this can be an extremely unpleasant experience. But as the disease continues to evolve, this awareness will usually disappear. The problem is then the concern of the patient's family and doctor.
The dementia itself is untreatable and the patient may eventually need constant care.


What does that actually mean to the individuals, the families, the children, the grandchildren, brothers, sisters and friends that are affected by the diagnosis of dementia that is handed down often almost glibly and often to the relative to deal with rather than the individual themselves. Do you tell the person that they have it? Do you tell their grandchildren? Do you need to tell them to be able to sort out their finances? Do you have the right to decide where they should live without consulting them?