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.
