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

Thursday, November 06, 2008

15th October 2008 - Funeral

The last few days have passed in a blur. Getting things done, registering the death, organising the funeral, flowers, 'the do'. Dad was a Christian so we wanted a minister to do a 'turn'. The tame one from the home came to see me. I find religious people very tricky to talk to - which is strange as I used to have a brother-in-law who is a priest ( long story, different life! ) - but I keep just wanting to say to them "But really, honestly, you don't really believe all that crap do you?". He was lovely though. Didn't even complaint when I gave him his tea - and he should have because I later noticed that the milk I'd used was off and there were floaters and God know what in it. Maybe He told him there was nothing to worry about in it because he was drinking it regardless. But the minister was lovely. He did suggest quite a bit of religon in the service but I thought I should let him take the lead, he's been to a few more than me.

I'd discussed with my siblings whether they wanted to speak or not, and neither of them did. I decided I'd like someone to speak that knew Dad because the minister - lovely as he was - didn't remember Dad. So I'd spent ages trying to get something to say, something that was true, something that wasn't slushy because he'd have hated that, something that didn't airbrush him but something that was heartfelt.

When it came to the day, I was really pleased to see my friends there. My ex-husband and my ex-sister-in-law where there. My family and my friends. Someone from the home came too, my siblings and their family, and my Dad's brother and his wife and their two sons and one of their wives.

" Firstly I'd like to thank you all for coming. With Dad having moved from Glasgow to Stewarton, then to Edinburgh, it was difficult to know who would be able to be here, so thank you all for coming.

Secondly, I'd like to extend my heartfelt thanks - and those of my sister and brother - to the staff at Portland Care home. Dad lived at Portland for the last 4 years of his life, and over those 4 years my admiration for the work that the staff do there has grown and grown. I have often been humbled by their compassion, their humanity, their dedication to the job and to those in their care. They have taught me a lot and I will always be grateful.

One of my recent fondest memories of Dad, was at last year's Christmas party at Pentland Hills. Mark, Ellie and I had been enjoying watching the country dancing when Dad was given his evening medication. He took this, but followed after the nurse who had given it, and as I went after him to get him to sit down again, the music started again and Dad started to dance with me. I'd never danced with him before. But we did then. He was a good dancer - his feet remembered even when so much else had been forgotten. I didn't want it to stop, it was lovely, dancing with Dad. Portland, and more particularly Tunhouse unit staff gave me and Dad that opportunity.

Lastly, my sister Moira found a quote that we both think is very appropriate for Dad, a description of the Victorian detective Chief Superintendent Williamson, by a colleague.

'A Scot, from the crown of his head to the sole of his foot, loyal, hardworking, persevering, phlegmatic, obstinate, unenthusiastic, courageous, always having his own opinion, never afraid to express it, slow to grasp a new idea, doubtful of its efficacy, seeing its disadvantages rather than its advantages, but withal so clear-headed, and so honest, and kind-hearted to a fault, he was a most upright and valuable public servant.'

Dad was human, just as we all are. He had flaws, he wasn't perfect, but above all, more than anything he tried his best. He knew his flaws and he tried to overcome them. I don't think you can ask more of a person than that. He worked hard, he loved his family and he did the best for his family. He did very little harm. He bore his illness very bravely, complaining very little and although it brought us all some very dark times, it taught me that I loved my father. He will be missed

He is missed. I'm lost without him at the minute. I'm not sleeping. I know it'll change, get better, get easier. I don't want to forget him though, I don't want to forget all that I learnt about life, about death, about him and about me in the last four years. I think I've become a better person. I hope so. I hope I helped Dad. I know I could have and should have done more. I wish I'd done more. I'm glad I did what I did.

9th October 2008 - Dad died

We'd both been worried that he'd die and we wouldn't notice. That one of his slow low breathing spells would just continue a bit longer and he'd not breath back in.

I can't write about it, it seems wrong, but it wasn't something anyone could fail to notice was happening. It was horrific. It was awful. The staff were in tears, we were in tears. We were literally hysterical afterwards in the flat, laughing in the most inappropriate way, but both knowing it was the letdown, the emotions that got us through the last few days spilled and we laughed, drank and cried.

I'm glad I was there. No-one should have to die alone. I'm glad I was able to help him pass.

Goodnight Dad. I love you.

Friday, October 24, 2008

7th and 8th October - St Matthew's Passion

We've been sitting with him, either me or Moira, or both of us, for days now. We'd both tried different classical pieces to listen to. And we both kept coming back to a CD of highlights from Bach's St Matthew's Passion. It's lovely. It's calming. It swarms over you, it massages you, it's just so beautiful. Different parts of it evoke differing emotions, but it's not maudline, it's not bathetic. I think it's perfect for his funeral, and so does Moira, but we both feel guilty for saying that before he's 'gone', talking over him. It's surreal. It's the blackest of humour we're having between us, Moira and I. As soon as we laugh, we feel guilty. As soon as either one of us has to eat or pee or sleep we feel guilty, or disrespectful, or unworthy. One of us will go out for breakfast and bring it back. I'll go and see the kids for a short time. One of us will bring back some lunch. We'll sit. One of us will go for something for tea - or dinner - and clink back shamefully with individual bottles of wine and cans of gin and tonic. The staff keep asking if we want tea, coffee, soup, sandwiches, anything at all. They are so good. They come and move him every 3 hours. He's on an air mattress to avoid any sores, but he's so frail and thin that I can't imagine he'd have enough weight to make a sore. But the staff are so lovely, so kind, so respectful.

Moira had a bad spell when I was away seeing the kids. It was weird, because I was supposed to come back at 7 in the evening, after I'd fed the family, but I started back at 5, and got stuck in traffic. She called me, very upset, but I was already on my way, I knew that she'd need me to come back quicker.

There's a guest room at the home and Moira's been staying there, when she's not with Dad. It's like a very impersonal hotel room. Like somewhere Alan Partridge might have stayed in - in Norwich. It doesn't matter though. It's there, we use it when we need to get a few minutes sleep. The staff have made an effort to make it 'homey'. Towels, a hairdryer, tea and coffee, shampoos, shower gels. The people that work at the home are great.

I honestly - although I have complained about individuals in the past - think that a good care worker is one of the most undervalued people in the world. Whether that is one who works in a care home or one who cares and works in their own home for their loved one.

I'm all disjointed. All over the place. Lack of sleep.

He's so pathetic now. I remember years ago when I first visited the home, thinking that some of the residents looked like holocaust victims. Dad looks like that now. His face is sunken, his skin has so little flesh below it. I can hold his hand now. I can stroke his hair. I can kiss his cheek and touch his face. I didn't do that when he was more aware. He and I weren't able to be 'touchy feely'. Our barriers didn't allow it. We don't have barriers now. There's none left. I've changed his incontinence pad in his old age, like he may have changed my nappy in my childhood. Full circle.

Sorry - all over the place. Very tired. Not sleepy but tired.

6th October 2008 - Vigil start

He's 'Nil by Mouth' now. his swallowing reflex has left him. His time is numbered in days now, not weeks. My sister is coming to stay for the vigil. It must be so difficult for her. She has to leave her son in London with his nanny, leaving him with the knowledge that she'll be back when his Puppup is dead.

I'm glad she's coming though. The longer I stay in his room with him on my own, the more I doubt the decisions I've been making - even with the support of the doctor and my siblings. I know the 'Do Not Ressuciate' decision is right. I know the decision not to tube feed is best. But when I sit with him on my own, I start to talk to him, talk and remember, and sometimes look forward, and then I begin to doubt. It's tiredness too. When you are so tired and so sad, you're mind wanders from your known loadstone, your known right.

Friday, October 03, 2008

3rd October 2008 - Beg pardon

Dad was a bit brighter yesterday. I managed to feed him a yoghurt, cup of orange juice, one of tea and another of diluting juice. We even managed to have a verbal exchange. He burped, after one of his drinks, and I said "Pardon" and he said "Beg pardon". When I left he was sitting supported in bed and looking awake.

That was yesterday.

Today when I went in this morning I met Pretti who told me how he'd eaten well the previous evening, even had some cheesecake and mince at tea time. Cheesecake and mince, hmmmm, nice. And she was going to get him through to the day room later that afternoon. So I was expecting him look as bright, if not more so, than when I'd seen him last.

He wasn't looking bright. Not bright at all. He'd scratched his face during the night and his face was covered in red lines and weels. I kicked myself mentally, because I'd noticed the length of his nails before and had meant to cut them - even got as far as bringing in clippers, but forgot to use them. He was glistening with petroleumm jelly that had been applied to his face to stop him being itchy. His mouth was gaping, his eyes have open with the familiar typewriter back and forth of his eyeballs beneath the lids. The smell in the room was the same. He wasn't for waking.

I clipped his nails, but he wasn't best pleased, pulling his hand away and grimacing. I don't think I could have been hurting him, I was being very gentle.

A woman knocked on the door and came in. I'd never seen her before, so she introduced herself as the home manager. She told me that he'd eaten well the previous day and that if I needed anything I should just buzz - and did I want a cup of tea. I didn't. I wondered if she'd been told I was in. Doesn't matter I suppose, she was nice enough. Stood at the bottom of his bed, straightened the covers, told me "At least he's not in any pain".

Whoever had woken him had put a CD on for him - the one I'd put in the machine three days previously. Opera arias and famous pieces of music. At one point Handel's Messiah was ringing in my ears... "For the lord God omnipotent reigneth. Hallelujah hallelujah hallelujah hallelujah hallelujah. The kingdom of this world; is become the kingdom of our Lord, and of His Christ and of His Christ. And He shall reign for ever and ever And he shall reign forever and ever And he shall reign forever and ever And he shall reign forever and ever"... oh yeah? Really? Really? And is that omnipotent God looking down on this shrivelled, skeletal, rotting man, a man who did very little harm, and thinking "You know, I think I'll let him stay like that a bit longer". Fuck off. Fuck right off. As Jim Royle would have it "Omnipotent my arse".

I really hope, though, that the last exchange I have with him is not "Pardon!", "Beg pardon". Now, that would be ironic. What a metaphor for our relationship, how appropriate that a stitled, pointlessly polite formality would be the last things we understand of each other.

See you tomorrow Dad. Maybe. Hopefully. Or do I mean hopefully not. Do I want him to go on like this? It seems unlikely that he's going to get substantially better, better enough to be able to have any quality of life. So maybe, maybe I mean hopefully not. Maybe I'm at the point of the man I met all those months ago who was hoping for his mother's death, hopefully waiting like an expectant father. I think it's time to tell my brother and sister.

Monday, September 29, 2008

28th September 2008 - Wafer paper Dad

He's so frail. He's so thin. So tiny and so very papery wafery flimsy. One of the staff - Amy - was asking about what 'the family' wanted at 'the time'. I've filled in all this paperwork, I know I have. I'm sure I remember asking Moira and Colin what they wanted, and what they thought Dad would want.

Why is she asking again now? Is that a sign that they think 'something' is going to happen?

Saturday, September 06, 2008

August 2008

There's nothing to say. I've run out of energy. I can't muster a cheery hello when I go in to see him any more. Sometimes I even forget to talk to him, just sit beside him and talk to the staff. How must that feel for him - completely ignored even by his visitor. If he knows I'm his visitor. He does recognise me as being someone he should know, but who he thinks I am is anyone's guess.

My admiration for the staff just gets more and more. I know I complain about some of them and their apparent lack of respect for the residents, but I know it's a job I could never do, I know that for every resident there is a type of caring ( and carer ) that is just right, and that they are ( mostly ) deeply decent people. There are very few other jobs where the staff would attend events, give up their spare time, volunteer for extra duties and all for minimum wage.

22nd July 2008 - I'm building an ark

I know it's a national obsession - complaining about the weather - but holy mother am I sick of the rain. I can't remember a day when it didn't rain. The kids are on holiday from school and I ran out of indoor things to do in the first week and patience with childrens TV the second week.

I'd planned - too - to take Dad out in a chair when the summer was here. Just round the gardens, or down the road for a tea, or something, anything, to get him out of the home, get some fresh air. But I can't in the rain.

Ellie's rebelling against going in to see Dad. Mark has, for a long time now, been uncomfortable with it, but Ellie's been ok really up until now. She's always been scared of a couple of the residents but, mostly, if I brought he a sweetie and some colouring pens and books, she was fine. She's more aware now, she's getting some understanding of the lives of the residents, how bleak it is and how sad. She knows that when we are not there her grandad just wanders about and sleeps where he stops, only to wake to wander again until someone takes him to get fed, or changed. She knows he doesn't make sense.

So, I'm not seeing much of Dad over this god awful summer. I'm only managing to see him two or three times a week. He doesn't seem to mind. I can't remember the last time he called me by my name, or the last time we had an exchange that lasted past the initial serve and return. He never serves, and his return is often nonsensical. If I do bat it back, he can't follow, just ignores it. I hope he's not aware. I'm sure he's not aware, not all of the time - but I know he does still get flashes of clarity - I can see it in his face, moments when he knows what's happening, where he is and why. He's scared, he's lonely, he's bored and miserable. And it's fucking raining.

Thursday, July 10, 2008

7th July 2008 - The Lion, the Witch and the Whatnow?

I'd taken the kids to see Prince Caspian, a film adaptation of part of the C.S. Lewis Narnia series of books. Dad had been aware of these books - my sister had been a voracious reader growing up and I'm pretty sure he'd have remembered them. He didn't seem to be able to grasp the idea of cinema. I called it the films, the pictures, the Odeon, everything I could to try and convey where we'd been. But he wasn't having it, he couldn't get the idea.

"Prince Crisp Ian?" he repeated and looked hopefully for approval, searching my face to see if he'd managed to grasp it, to get it, to successfully navigate through to a conversational exchange. I nodded at him, unwilling to actually speak the lie that he'd understood. His face brightened a bit and he volunteered "Crisp toast. Ian Carmichael." and wheezily chuckled himself to a nap.

In Prince Crisp Ian there were scenes of the evacuation of children in the Second World War. Dad had been evacuated, with his brother and sister, to Dollar - a little town in Fife. I tried to imagine how that must have been. Your father away at war, you were taken from your mother, put on a train and shipped off to a place you'd never been, to live with people you'd never met, for an unspecified length of time. Can you imagine the outrage if that was attempted today? Is it any wonder the man has emotional intimacy issues? Is it any wonder this man, who had been an unhealthy invalid child for much of his youth, unable because of his chronic asthma to run about outside with other children and ostracised by classmates for his skin condition, would grow up to be incapable of showing warmth, or communicating his feelings? Poor Dad. A product of his upbringing like everyone else. I stroked his face when he slept and he smiled.

21st June 2008 - Primary 7 blues

It's Mark's final year at primary school. Dad wasn't for being told about this turning point in his oldest grandson's life. The looked through me when I was talking about it, and fell asleep when I was trying to include him in my outrage at my latest bugbear. So, I'm gonna rant here as no bugger else ants to hear me, or rather everyone else I know has already listened to me and thinks I'm mountain making.

The school that he goes to - in common with many others - makes a really big deal about being a P7 and the transition to secondary school. The kids are given more responsibility during the year, they are given more freedom and at the end of the year they have visits to the secondary school they will attend. It's very well thought through, and considered, to help the transition be as smooth as possible. At his school they also stage a musical show and have a 'qually'.

I've had many arguments about the qually. Not with Mark. He's always been very clear, he wanted to wear a tux, he wanted to take Rebecca and he didn't want to dance. Unfortunately Rebecca didn't want to go with him. She didn't tell him right away though, she said maybe. Maybe, maybe, maybe. Right up until Stuart Black asked her, when she said yes to Stuart and no to Mark. I wanted to kill her. I saw Stuart and Rebecca at the shopping mall a few days after she told Mark she wasn't going to go with him. I had to be reminded she was a 12 year old girl and my withering scorn might be neither appropriate nor entirely appreciated.

So, anyway, the arguments have been with friends and aquaintances about the fuss about the dance. In some cases parents hire limousines to deliver their pre-teen child to the event, host after parties, hire photographers, allow hair extensions, fake tan applications and acrylic nails. I heard of two girls whose parents allowed them to take the day off school to go and have their fake tan and nails applied.
What kind of message is being sent to these children? How important is school? How important is appearance? As a society we bang on about children wanting too much, not being children for long enough but on the other hand we give little girls Barbie dolls, Bratz and have bikinis for babies.

I don't want my pre-teen son, and in a few years my daughter, to be facing the disappointment of rejection. Equally I don't want them to be the person who is causing that feeling in someone else. I don't want them to be concerned about who is wearing what or going with whom. I don't want them to care about what they look like. I know I'm swimming against the tide, I know I'm not consistent and give into pressure on all sorts of other things, but it really pisses me off. And it pisses me off even more when I realise that I sound like a Grumpy Old Woman. But I am. Grumpy. Old. And a woman. Harrrrumph!

Monday, June 16, 2008

15th June 2008 - Father's Day and MoonWalk

I did the Edinburgh Half Moon walk so I was very tired. The worst thing about the walk is the time. It would be a dawdle - literally - to do it in the day, but at midnight it totally knackers your body clock for a couple of days. Fathers Day was on the sunday of the walk and I could have not visited but I felt bad, so in I dragged my weary carcass on it's blistered feet.

Dad was sleeping when I went in and he found it difficult to stay awake for long. He didn't seem to be able to grasp the idea of Father's Day, he didn't know what to do with his cards or his present.

One of the more recent residents was being very difficult today. Francine took the brunt of it. He wanted a cigarette, but there was no staff available to take him for one. They seems to be short staffed again because it was only Francine doing the teas and coffees, with no-one else around. She'd reached the horseshoe of chairs that sleeping Dad and I were in and was blocking the open end with the trolley as she dished out the hot drinks. She was - reasonably politely - telling Bobby that he'd have to "wait the noo fur yer fag, pal, I'm short staffed here and this lot are wantin' their cuppa. Onyweys, it's no like yer going onywhere is it. You sit still and I'll git you a wee coffee fur tae huv wi' yer fag". I think that might have been what set him off - I don't think he saw the broad wink she gave me as she said this, or heard the gasping chortled whisper "Like he's go a buckin' choice in his buckin' chair" to me - I think it was the fact that he didn't have the bucking choice as he was stuck in his bucking wheelchair and stuck in the home. He needs a lot of care, but his mind is still pretty much there. He's in hell. His speech is not good, he finds it difficult to communicate, but he wants out of the home. He wants out of the home and at that particular moment, if he couldn't get out of the home, he wanted to have a fag. He rolled himself over to the trolley and started to try and tip it over. Francine struggled with him and he turned his attentions to pulling at her. She started to shout at him to let go. One of the other mobile residents got up to help - as I had - I couldn't get past her as she'd managed to manouevre the trolley to completely block the exit from the horseshoe of chairs. Bobby was screaming and screaming at Francine. Not words just "Aaaarrgghh" - comicbook screams. The old lady that was try to help Francine was pulling the trolley in such a way that it was about to tip all over her, so I managed to get her to sit, hemmed her in with a table on wheels, a tea and a pink wafer - that most sought after and effective of sops - and sped off to look for help. I shouted up and down the corridors as I ran looking for anyone to help. Eventually Candy came out of one of the toilets with Cecily, who is also very demanding, and asked me what the hell was the matter. I told her than Francine really needed help in the dayroom and she went to help. She released Bobby's grasp from Francine's arm and rolled him into the visitors room. The door opens inwards there and he can't get out. Hiatus over, Francine returned to teas. "Wit can ye dae, the pair bugger disnae want tae be here - and can ye blame him? Widnae want tae be here maesel. But it's no tha' though, I cannae huv tha'. I didnae git paid if am aff, and the sick pay disnae go far. I cannae afford tae huv the likes of him puttin' me aff ma wurk." I said that I'd never seen him like that before and she throws "That's cos your no here Jeannie, that's cos you dinnae come in every day likes ye used to. Not that I'm critising, likes, but it's been noticed , like, that yer no in as much. Yer Da's noticed tae, but that's no fur me tae say".

As I'm leaving I pass the visitors room, where Bobby is still screaming and ramming his chair against the door, frustratedly trying to get out or get attention, or get his fag. At the door Candy catches me, "Didnae you mind Francine - she was gist shaken - ye dae fine by yer Da. He disnae really notice yer no in as much. She's just lashing oot at someone and you got it this time. She feels fur the poor auld bugger. We cannae git him shiftit. The paperwurk we huv tae fill in tae git his social worker tae see he's in the wrang place is unbefuckinglievable. Her hearts in the right place though. It's just her wey uv dealing wi it aw." She tousles my hair from her 6ft 1inch vantage as I leave "You dae yer Da fine". She's 19. I'm 44 and feel even smaller than my 5ft 3inches - how did she get so smart so young?