How can a train station make you cry? Well, I was in tears on the train to and from visiting Mum as we went through our old station. So many memories – setting off for university, nervous and excited about the whole new life opening up; Mum coming to collect me at the station on my weekend visits; Mum no longer able to collect me and the relationship I built up with the taxi company; coming down for weeks at a time to look after her; calling a friend (now dead) from the station while waiting for a train home.
All these memories flash before me; I know this countryside so well, have watched it from the window hundreds of times. The other passengers notice me crying but this is England and no one says anything, thankfully.
On the return leg, the woman next to me has a terrible cough. I try and turn my head every time and she does cover her mouth, but I’m tempted to move or ask her to move. My immune system is pretty frail these days. But then I think how that would play out, the carriage is full, so I’d have to find someone else who wouldn’t mind sitting next to a cougher. So I stay in place and try not to breathe when she coughs. So far so good.
Driving through London feels like the emotional geography of home. The taxi driver has a mother-in-law with dementia and we exchange stories and experiences, laughing and on the verge of tears both.
I’m down for a few days with Mum, visiting her nursing home. She turned 90 today, we are keeping the celebrations low key as she tires very easily and my brother is coming with his family tomorrow.
It’s a specialist dementia home and care is exemplary. I notice that the other people around her all seem to have their own version of the present, just not one that chimes with the rest of us. So one man comes past and asks if I’ve done my Christmas shopping yet. Another lady wants to know where the bus stop is. I’ve learned to join them in their world and just answer as I would if it were a real question. Feelings are a hundred percent, so anxiety, relief, contentment are all ratcheted up.
It’s the Queen’s birthday too of course and Mum is a little miffed that she is a year younger. She forgets it’s her birthday despite the flowers and cards and rediscovers them all over again every ten minutes or so. When a member of staff asks her how many years young she is, Mum snorts as she would always have done at the twee phrasing. ‘I’m not sure.’ I prompt her and she denies being ninety, suggesting eighty something.
There’s a prayer service which I go along to without Mum and by the time I find it, they’re about to start. One of the three people leading it fixes me with the kind of smile I see all the time, usually attached to my stick; it’s a mixture of pity, encouragement and head patting. I sit down and realise it’s not the stick, (most people here have frames or sticks) she thinks I have dementia as well.
Unfortunately it’s taken my marbles with it. Yesterday’s dark clouds have cleared as they always, eventually do, but hard to remember when you’re enveloped in darkness.
Woke up today convinced I was meeting my Monday cultural pal to go to cinema, so booked the tickets. Just time to go to the library first and get some more reading for Easter.
A knock at the door and it’s the cleaner from next door’s flat. The wonderful ninety-six year old died last month and the cleaner is still looking after the flat, but doesn’t like to go into the bedroom where the woman died, on her own. So I go and keep her company and the room is full of light and sunshine, just as my neighbour was. We have a coffee and reminisce about what a great character she was, how she loved flowers. There are still flowers round the flat and the cleaner cuts one marvellous one for me (see below).
Off to the library and meet another local cleaner who has very bad knee trouble. I do too and we have rather bonded over the state of our joints. He’s waiting for an op and in a lot of pain and we discuss the merry-go-round of exercise, pain and rest.
On the way to the library a friend calls to ask me where I am, as I’m supposed to be meeting her to go to a lunchtime concert. It’s Tuesday! And it had completely slipped my mind. Cinema is tomorrow.
I recalibrate what passes for my mind these days….
Wake up to another Monday, the hardest day of the week when your life has changed so significantly. Limbs are leaden, mindset is ‘what’s the point’, the days of the week stretch endlessly ahead and not in a good way.
Normally a cultural outing with a pal helps, but a couple of meetings this afternoon instead.
So blackmail myself out of bed with promise of a decent breakfast, then go through the motions of a normal day – shower and get dressed, take meds, tidy up a bit for meetings. Then out to get paper and do some shopping, get some air and be in the world.
Bump into someone I know on way to supermarket and we go and have a coffee, which helps. She sweetly asks how I am and rather than give her both barrels of misery, I say Mondays are hard, but they get better as the day goes on. Then shopping for dessert I’m making for dinner invitation tomorrow.
Make it to lunch time and under the new regime, force myself to eat a sandwich. No appetite these days but important to keep the nutrition coming. I’ve got a grilled mackerel waiting for me this evening with watercress salad.
Twenty minutes with the crossword and a semblance of normal transmission is restored. It’s life Jim, but not as we knew it.
Off to a spiritual social gathering tonight – Mass followed by a reflection and then wine and food with good company. Get a cab there as I’m bringing the wine and the dozens of scarlet tulips splashed along Park Lane make even eight lanes of traffic seem springlike and bearable.
I sit quietly in the chapel and become aware of the woman on the end of the row, who I don’t know, stage-whispering her prayers. Try to concentrate on my own prayers and not let her get to me, but she’s disturbing everyone.
She gets up to come past me, but then sits down next to me. ‘Would you like to come to a charismatic healing service in Birmingham in May?’ I stare at her in astonishment and then say thank you but that I’m not here in May, which is a pretty lame response, but all I could come up with. It’s delivered in the frosty tone that would freeze any British person at fifty yards. Not our whisperer though. She goes on to tell me about the website, where I can list my name for healing. Repeats the name of the website and then asks me if I know how to spell it. Another, frostier, thank you and she retreats back to her whispering.
Where to start? The patronising, ‘I know what’s best for you, even though I’ve never met you and don’t know what’s wrong, though I have spotted your stick.’ The interruption of my prayers and the refusal to take no for an answer. Meant kindly no doubt, but REALLY.
I’m as likely to go to a charismatic healing service in Birmingham as I am to fry my own eyeballs.
Other than that the evening was delightful.
Just spent a fruitful half hour wrestling with changing my sheets and duvet. I normally wait until a friend comes to dinner so we can share the challenge, but felt like changing them myself today. Odd how the tasks that used to take a few minutes now represent a small hill to climb.
I pick a duvet cover that has come from Mum’s; it has a cheerful seventies design and a zip rather than poppers. It’s lasted amazingly well, as have the red and white checked serviettes from my French grandmother, who bought them from a catalogue in the sixties. They’ve been in daily use ever since and show no signs of giving up the ghost.
Also went out to do a mega shop as I seemed to have no fruit or veg or anything much worth eating. On the way there, the wheels fell off my trolley. I know how you feel mate. Simple task to latch them back on again, but not quite so easy on a traffic island in the middle of the road, holding my stick for balance.
Since I’ve lost my appetite, I try and trick myself by buying anything that takes my fancy – so today included smoked salmon, ham and beef slices, Greek yoghurt, spinach, liver, potatoes, carrots, watercress and some seedy bread. I need to remind my self to eat and cook properly as my old appetite clock no longer works. One of the many sadnesses of the current life.
I have a pile of books to get through from the library and donated by passing friends and lots of radio to catch up with, so a delightful evening ahead. Including liver, carrot and potato mash and spinach.
Had a quiet day indoors today after a hectic (for me) ten days. Mostly slept and listened to the radio with a bit of reading thrown in. Felt liberating not to go outside and wrestle with the world, though I did stick my head out of the window for a bit of air at one point.
Feeling much better and realise that my Lenten resolve of extreme kindness to myself is as hard as anything I’ve ever given up. Even the memorable year when I gave up both tea and coffee and my friends were begging for mercy at the withdrawal symptoms.
Being extremely kind to myself means having the odd day of doing nothing and eating as well as possible.
I realise the very dark moments in the day may be connected with not eating; these days my appetite no longer works like clockwork, I have to remind myself to eat, particularly at lunchtime. Eating is rarely the great pleasure it used to be, I often can’t summon the energy or enthusiasm to cook interesting meals from scratch, though I can eat them when put in front of me.
So on Sunday I had breakfast and then didn’t eat until late in the evening, for various reasons. On the way home on the bus I was filled with darkness, the feeling that this is all just too hard. I got home and made a cheese omelette and felt much better. So I’m keeping an eye on the clock and trying to eat regularly through the day.
It turns out extreme kindness to self requires practice.