Festive sorrow

I decided to spend Christmas on my own this year. Not as easy as you might think. Well-meaning friends double checked that I really meant it and I realised that I needed to invent a narrative for all those people asking, ‘what are you doing for Christmas?’ Casual acquaintances were told I was with friends, friends were told the truth, that as I couldn’t be with Mum (no trains or b and b), I’d rather be on my own.

The thing is this time of year is hard for anyone who’s not full of Christmas spirit. And it’s hard to manufacture when it takes you straight back to a sad or difficult time in life. I texted the friend whose husband died on Boxing Day; not an easy text to write, just that I was thinking of her. She got straight back to me. Another pal told me that Christmas would never be the same since her mother died just afterwards. A friend is looking after his very frail and elderly parents, aware that they might not have another Christmas together.

And for those of us living with life-limiting illness, things aren’t simple either. I’m glad to still be here, of course. But not in the mood for tinsel and turkey and general jollity. Got the tree out but couldn’t face putting it up so distributed decorations and tinsel round the room.

Been a bit rubbish with the Christmas cards this year too. Spent most of the last two days in bed, not depressed but emotionally exhausted. Remembering how very ill I was at this time a couple of years ago, running the scenarios through my mind yet again. And ill again last Christmas with bad bronchitis. So I didn’t even get to church, it would seem hypocritical at the moment as God and I are not the best of friends.

Lay in bed and listened to some excellent radio, read, slept and eventually got up mid-afternoon. Took some calls and texts from friends and relatives. Watched some decent telly, ate some pretty wonderful smoked salmon sandwiches and that was Christmas done.

I went out today to get a paper and the world seems to be full of people coughing and sneezing. The few cafes and restaurants open were rammed. I stopped in to have a coffee and the young woman serving me was coughing like a consumptive out of Dickens. Came home and disinfected my stick and myself and hoped for the best.

Today I’ve been cooking up a storm for some pals coming to lunch tomorrow – gammon, cranberries and trifle. The house is filled with Christmas smells and I’ve been writing a few cards and wrapping presents for said friends.

So tomorrow will be a sociable day, just don’t expect singing and dancing. And be aware of all those people who are emotionally drained by this time of year.

Oh and if you have a cough, please don’t feel the need to share.

I’m a British citizen

The quarterly tests last week. Time is weird, the months stretch out between visits to the hospital but also kaleidoscope into no time at all. Feeling sorry for myself today, but a visit to the hospital always makes me aware of how much sicker many people are, including very young children. A man next to me gives his date of birth and I’m shocked to realise he’s two years younger than me.

Have a good chat to the technician who does all the needlework, turns out he speaks French – as well as several other languages- and we discuss the importance of transmission of culture to future generations and what it means to have a different language from the community you live in.

Then lunch with a very old friend. We’re treating ourselves to a Middle Eastern feast at honey and co, we catch up and spend much time trying to work out all the delicious ingredients. A tahini sauce has a mysterious swipe of something delicious, the waitress says ‘ ah that’s date molasses’. I sense a new addiction looming.

On the bus home, I’m sitting in one of the disabled seats, feeling much better. At the stop before mine, an elderly gent gets on, very well-dressed, with a stick. He asks me for my seat and I think he probably hasn’t seen my stick so I show it to him and indicate the seat next to me which is free.

At this he goes into a complete rage and begins shouting.’ I want your seat, you’re in my seat, it’s reserved for me.’ Others on the bus tell me to take no notice, that he’s always like this, but I’m startled by such over reaction. The bus has now started moving, so I can’t get up and the seat next to me is free. I try to explain this but the rage continues.

‘That seat is reserved for British citizens. I’m a British citizen.’ ?????

I raise my eyebrows at him, sympathy fast disappearing.

‘And I’m older than you. Give me that seat.’

I stay calm, as I’ve seen carers do to explosions in the dementia home.

‘That’s true, but the seat next to me is free, I’m not getting up, but I am getting off next stop.’

He paws the ground with his stick until my stop and I half expect him to wallop me with it. That would not have ended well.

But I think about him on the way home and wonder who looks after him, if anyone. I’m a local but have never seen him before. And where does such rage come from?

A good old sing song

M used to be a piano teacher and is very well-spoken with a wicked sense of humour. She confesses that she may well swing for another resident who keeps annoying her with witless conversation. M doesn’t eat much and walks up and down the corridors humming to herself. She doesn’t have many visitors as she has no family left, the occasional friend comes to see her.

This particular afternoon we end up in two armchairs with Mum in her wheelchair next to us. M says how she loves to sing but can’t remember the first lines of anything. So I start her off with ‘Daisy, Daisy, give me your answer do’. It turns out that once she has the first line, she knows all the verses. So we continue, first with any song I can think of, from Molly Malone to Tipperary. Then we try some carols, but after a bit she says waspishly,’ how about some non-religious songs?’

So she starts telling me some songs she vaguely remembers and I look them up on the trusty iPad and she’s delighted at the technology. We soon gather a small circle of residents and carers listening in to the repertoire.

A good couple of hours later, she says, ‘time for a cuppa’ and heads off. But next day she remembers the singing and says we must do it again some time, ‘with your magical toy.’

Magical indeed

Christmas party

Christmas parties in a dementia home are something else. About thirty people gathered in a festively decorated room, a mixture of residents, family and friends. A Christmas CD of pop songs plays on a loop, which means those of us with any memory left are gritting our teeth after an hour or so.

We sit in a semi-circle, as though auditioning for a new Beckett play. No script, just people mumbling the lines which only they understand. Crackers are pulled and hats and bad jokes extracted. Mum balances her hat on her head, we’ve always had larger heads than the cracker hats. Reminds me of my time in the High Dependency Unit a couple of years ago, when they tried to get me to wear a hat and eat a full Christmas lunch. It was an attempt at normality but I’ve never liked the paper hat and was certainly not going to wear one while in the antechamber of eternity.

A tall man dressed as an elf enters with a saxophone and begins to play, rather well. K, behind, puts his fingers in his ears. That’s the other thing about dementia, very little of the social graces remain with some people.  He plays very well, but I wonder what the residents make of it.

Then a marvellous spread of Christmas food: poached salmon, cheese and celery, little cakes. The residents fall on this with delight, even though they had a full Christmas dinner at lunch time. The loss of memory seems to include eating too, Mum often puts her knife and fork down and asks when she’s going to eat her lunch.

It’s a lovely afternoon, filled with half memories of carols and Christmases past, families and friends often leave the room to shed a tear in mourning of the life that no longer exists with their loved ones.

The unpredictable is always present.  Mum eats her way through several mince pies, which she would never have touched before. Another resident complains that the mulled wine is mysteriously disappearing from her glass. Families can be odd too. A daughter hearing us speak French asks whether we always speak French when we’ve had too much to drink. I wonder at first if she’s a resident, in which case all bets are off in terms of behaviour, but she’s definitely a middle-aged daughter. I look puzzled. She elaborates, ‘is it the mulled wine making you speak French?’ Mum giggles, I reply with a straight face that we always speak French, drunk or sober.

‘How odd’ the daughter replies.’ Um, we are French’.  Cue puzzled shrug from the daughter.

 

Jars of memories

Snow in London and the papers are full of photos of happy children sledging, beautiful panoramas of the countryside and all the other usual cliches of winter. But none of the hundreds of thousands of people who look out of the window or listen to the weather forecast with sinking hearts.

If you’re frail or elderly or  seriously ill, you dread the snow, it feels like a fast track to A and E. I did go out to do a shop yesterday and there was no snow left on the ground but my steps were so tentative nonetheless and I was even more aware of every wet leaf and crack in the pavement.

Back home safely and decided to have some tea and toast. Hunted around my shelves and found a jar of apricot jam that Mum and I made a couple of years ago when she was still at home and I was looking after her. She’d labelled the jam and I remember a happy afternoon with her making it. This is the last pot. I opened it and it smelt of summer, spread on toast it was delicious with an additional kick of kir. I often add a slosh of spirits to jam, but this was a very generous glug. A poignant reminder of all the cooking we did together in that kitchen and how that too has ended. And further back, all the preserving done with Dad, who loved having buckets of pickled onions, bottles of ginger ale, marmalade, chutney and preserves all round the house.

So if you have any family, friends or neighbours who are frail, remember to think of them in this cold weather. And maybe take them the odd jar of jam to warm the cockles.

Sleep Olympics

Let’s just say that if sleep were an Olympic event, I’d be gold medal material. After I came back from a lovely few days with Mum, a pal invited me to dinner. We haven’t seen each other for months, he’s looking after his very elderly and frail mother and still working full time. If I didn’t go, it would be months again before we got the chance.

But it’s the other side of London, so tube is the only option, with two changes. I haven’t taken the tube more than a couple of times this whole year, seems to me to be virus and germ heaven.

We had a lovely evening together and caught up as old friends do when they haven’t seen each other, like taking up a piece of knitting. You know the pattern and the stitches and it all flows wonderfully.

The next day I felt a bit feverish, so spent most of the day in bed apart from a quick sortie to a coffee shop. On Monday woke with the only too familiar sense of exhaustion. The sort of tiredness that has you arguing with yourself to make it to the bathroom.

And that has pretty much been the week, sleeping all night and waking briefly in the morning to go to the loo and have plenty of water, before collapsing back into bed. One day I woke at….7pm, not having eaten all day.

Each day sees a bit of improvement, the last couple of days I’ve been up around 5, taken a shower and cooked myself a proper meal. I’m digging deep into my freezer for all those delicious left overs. Turns out they make a reasonable, though eclectic mix. Tonight was meatballs, spinach, haricot beans in tomato sauce with mashed potato.

The thing with a serious illness is that your immune system is banjaxed. So what would have taken me a day or two of moaning and feeling sorry for myself when I was well, now spreads itself across the week. With the additional extra of feeling that this is how it is going to be for ever.

But my immune system is slowly fighting back and the non- stop sleeping means I look well. Though I won’t be responsible for my actions against the first person who says that.

Words and meaning

It’s the way you say it.

Into town for a coffee, bitterly cold. I need to acknowledge that winter is really here and kit myself with the full rig of hat, gloves and thermals. The sun is deceptive and I walk so slowly these days with my stick that I can practically here the icicles forming.

Walking past an Indian restaurant, they’re advertising a new chicken dish – ‘drenched in onions and throbbing with spices’. I think about how easy it is to get English completely wrong.

Into the coffee shop and an elderly man opens the door. We both have sticks, but his natural courtesy trumps my reluctance to go through the door first. He gives me a big smile and encourages me through in a very broad local accent.

The cafe is full of toddlers with hacking coughs. I get that Mums want to go out for a bit of relief but my immune system is twitching like crazy. One of those coughs would lay me low for weeks. The young woman who serves me says, “there you are sweetie”.  I seem to have joined the ranks of the seriously patronised.

Decide not to take offence, but that’s a slippery slope.

Another visit to planet dementia

Have been ill, of which more later. Also having tech problems with blog, now resolved so these posts are from last week.

Back on planet dementia.

Down to see Mum again for a few days. Lovely cab to the station with a smart, chatty driver, not the usual right wing ideologue. We talked fitness, dementia, royal engagement, London history. Cheered up the day no end. He helped me out of the cab and took my arm and said ‘Love to Mum.’ Realise how much difference a single person can make to the world and resolve to be the same to others.

The train down passes my Mum’s old home station and stops in front of the supermarket where I did our weekly shop. Unlikely I shall ever go there again. Still makes me cry, from an unfathomable well of grief that will never run dry.

Mum pleased to see me and we have lunch. Would like to take her outside but freezing cold. We sit and look at the paper and do the crossword. At supper time Mum laps up her soup. the lady next to her talks incoherently. Mum reverts to the French countryside vocabulary of her peasant childhood and asks me if the lady is mad. I tell her she just has memory problems. She nods sagely and says, ‘ ah yes that will come to us all’. Don’t know whether to laugh or cry.

J deconstructs her sandwiches – takes the crusts off, takes the filling out, eats the filling, then the bread.

G asks me if I’ve always been an elf. I say I’m not sure I sure. He shakes his head. Maybe it’s the red jumper. Or could be the pointy ears.

Relative values

Visiting relatives and friends with dementia is not for the fainthearted. Some cope by not visiting at all or come and pretend all is well, trying to drag their loved ones back into the normal world. So husband or wife says something odd and they contradict. W was asking his wife for some money for when he leaves and she says that he can’t leave and if he gets better, he can jolly well come home. She’s in denial about his mental and physical state. She tells him to get up and when he struggles, whacks him with her umbrella.

C’s husband comes every day, but leaves before meals when she refuses to eat. She whacked me with a cushion today twice, but not at all her fault.

D holds my hand and kisses it repeatedly. When her brother arrives, she clings to him and they spend the afternoon clutching each other. He sits there quietly weeping.

L comes and visits her mum sporadically,  trying to chivvy her back into her old self. It doesn’t work of course, just causes them both more distress.

Mum smiles broadly at me all day and tells me she feels the world is safe when I’m here. When I ask her how come, she shrugs her shoulders in the way only a French woman can and says, ‘it’s magic.’

 

Custard apple

You never forget your first custard apple. It’s such a contradiction in terms, a fruit that looks like a cross between a squished apple and a green mango. Open it up and it has black seeds, but the yellowish green flesh tastes exactly like stewed apple and custard. The first mouthful is a surprise and you keep tasting, not quite believing.

I saw some at the greengrocer this morning on my way to visit Mum and thought of our holiday in Madeira when we gorged on them,  after visiting the Christmas market in Funchal which was such a riot of colour that it hurt our eyes.

A pear on the road in front of me made me look up, beside the supermarket car park was a valiant pear tree. None of them reachable unfortunately.

Fruit hits the memory like snatches of song. Melons, peaches and nectarines from my French  childhood summers that were so perfectly ripe that we used to eat them in silent appreciation, quite something for our very chatty family.

Mum still loves fruit, I imagine it takes her back too. New arrival B sits next to us at supper. He seems clearheaded and makes normal conversation. Then he tries to eat his pizza with a spoon and my heart lurches.  I point him towards his knife and fork and he says, ” it’s all a learning curve.”

Ain’t that the truth B.