I’ve been trying to improve my photography. That’s one of those things that I’d just like to absorb by subcutaneous injection, since I always seem to forget about focal length and depth of field. I’m still inept at landscapes and being in the right place at the right time but I hope to improve these skills. In the meantime, I’ve found that I can take quite good portraits with my telephoto lens but I’m still not quite sure how.
I’m also trying to get good photos of my mum while I can, but I must admit that I do have some qualms about putting these on my blog: how can she consent to anything? If nothing else, these are gently meant.
Ever since my return from India last week, I’ve been meaning to write a quick post about my mum, just to keep you updated. All sorts of excuses for not doing so include catching up on the ironing and spending time knitting the gloves that MsDD requested. This evening I was SO close to finishing the first one and then I realised that I’d misunderstood the rather confusing pattern. Urgent and persistent dognosing also put paid to a fabric that already had several mistakes in it so I decided to cut my losses, frog it and start again.
This time I’ve actually written out the pattern in full and I think I’ve now learned how NOT to get my stitch marker caught up in the garment. I hope.
Anyway, how is my mum?
Well, she still seems contented although physically she does seem frailer that she’s been. She still gets up and toddles off up the corridor when she wants to but she’s also quite a bit sleepier than she was.
Although she still recognises me immediately most of the time, I don’t think she can remember my name and she often thinks that I’m on my way home from school. On previous visits I’ve taken a notebook in and written down sentences for her to read. As she no longer wears her hearing aid, she can’t hear me even when I shout so this is a much more suitable means of conversation.
Goodness, when I look back at how angry we were with each other when I first took her out to India and all the frustrated, embittered things I wrote about her never listening to me it makes me want to shrivel up in a corner with shame.
I soon realised, though, what a poor little thing she’s become, and so quickly. Dementia seems to deteriorate in steps, staying on a plateau for weeks or months before suddenly taking a big step down, and I think my mum has taken another step in the past couple of months. Her conversation and her concentration are now so limited that it’s no longer meaningful to take a notebook. A lot of my mum’s conversation is unintelligible burbling now, punctuated with the odd lucid phrase or question but where she used to have better, more lucid days, now she will have lucid moments.
Instead I just go in and sit by her and hold her hand or show her the unit’s flashcards, which she can still read. It must be bewildering for such a previously unemotional, untactile person to have someone suddenly holding her hand or rubbing her back, so she often pulls away, but perhaps she will become used to this from me over time. I hope so because I think it might soon be the only way I can make any meaningful connection with her.
Having seen the videos on the internet about what happens when you give dementia patients a doll, I took a Baby Annabel to India with me this time, as something the whole unit might like. Most of the ladies there are at the stage where they sit around with a vacant gaze, though the staff do their best to engage them, they’re really no longer capable of much interaction, such has been the degeneration of their brain.
My mum seemed to like the baby, but she lost interest within a matter of a minute. Perhaps she will like it when she gets used to it. Who knows?
People ask me how my mum is and seem surprised when I shrug and say she seems well enough physically but mentally she seems to be slipping away. Perhaps there is a difficulty for people who have never encountered dementia before in accepting that it is a progressive, terminal condition. It’s almost as if some people expect her to have made an improvement and continue getting better and they’re shocked when I remind them that she isn’t going to be getting any better. My mum must have had dementia for at least the last 10 years so she’s probably doing quite well in comparison with some, I suppose. I don’t really know.
When I left her last Thursday afternoon, she was asleep and I didn’t want to disturb her, but that made the guilt at leaving her more acute this time: who knows how she’ll be when I next see her in April? At least I know that she’s comfortable and well looked-after and safe.
Written on Tuesday 15th September. Posted today:
My mum and Shain watching telly.
I saw my mum a few times today for half an hour or so each time, which as about as long as she can concentrate. It’s very apparent, though, that her powers of concentration fade as the day wears on. It was good just to “hang out” with her and watch TV for a while this afternoon, some Marathi film with a stupid plot and stereotypical characters, including absurdly beautiful main protagonists and a lot of not very realistic stage fighting.
It was clear that my mum has become quite close to her main carers, and they showed me photos of her on her birthday and clowning around. How gratifying it is to know that she is comfortable and relaxed here and that they obviously care for her. I’m wondering whether they’re on their best behaviour while I’m here and just waiting around for me to turn up. Perhaps I’m cramping their style.
The monsoon rains are fading now with intermittent thunderstorms and heavy showers replacing the continuous rain. Between the showers, the birds and butterflies come out to dance and it seems that the flowers bloom more strenuously. Walking to the dining hall this evening my olfactory system was mobbed by the scent of jasmine.
Here, then are a few photos of today:
And a little video. I think we can agree that Spielberg has nothing to fear from me:
Not a huge amount happens when I’m here in India. I stay in the building next door to the Nightingale Block, where the people with high dependency needs are housed in their own comfortable rooms. We’ve made sure that my mum’s room has air conditioning – it does get very hot here at this time of year – and she has a Tata Sky subscription, which enables her to watch soaps on hundreds of channels.
When I went to see her this afternoon, she was watching a Hindi serial, surrounded by about 5 nurses and carers who had been trying to persuade her to go and join the others in the day room for a bit but, faced with her iceberg implacability, they’d one by one surrendered and sat watching television with her.
It would have made a great photo but my camera wasn’t primed to catch the moment and I’m a little wary of taking pictures of the nurses spending relaxed time with ther patients. It’s an essential part of their job, in my view, and most of their other residents were still not awake from their afternoon nap, but an employer might not agree. It looks unprofessional, perhaps, even though I firmly believe that it isn’t.
The sky has clouded over and the sky is rumbling and grumbling. It looks like rain even though none is due until the end of June. [Edit: It IS actually raining! Unbeliveable: I came twice in the rainy season last year, fully prepared against the deluge with a waterprooof raincoat and nary a drop fell either time.] My driver was talking about the change in climate: Mumbai and its satellite towns, now cities, have grown up so quickly with such a density of concrete that sits suffocating like millions of storage heaters. People here are talking about how much hotter it has become in recent years. I’m not sure what the repercussions will be but the visible and invisible pollution is apparent.
When I’m here, I wake at about 7 and shower using the minuscule amount of warm water that my geyser has spent the last 18 hours heating. I have breakfast in the dining room, usually a masala omelette (hold the chillis) and toast. People in India can’t quite get their heads around us putting cold milk in tea and coffee. “But that would make the tea/coffee cold!” Generally, they just boil up coffee or tea with milk and water and sugar until it’s piping hot. As it cools it forms a beautiful custardy skin, the thought of which still makes me retch.
As usual today I asked for coffee with cold milk and was presented with a cup of hot water and a bowl of strong coffee (was it Nescafe diluted in water?) and a bowl of milk, each with Chinese spoons to spoon according to taste into the hot water. I was a little taken aback, I must admit, but at least I didn’t have to part the skin on the coffee, River Jordan-like, to drink the remaining beverage underneath. Tea? Best not go there yet.
After breakfast I go and sit with my mum for a while, but she’s often drowsy, and then there’s usually some admin to do at the office. Today’s involved wrestling for ages with a poor internet connection to try and top up a mobile phone SIM which I think might have expired, as is its duty after 3 months with a foreigner. The wretched Vodaphone website refused to take payment on any of my credit cards. It could be that my SIM is no longer valid; or that my cards aren’t valid without endless passwords or that the wifi connection here is too weak or that the Vodaphone server was down. Any of those things. I actually called Mastercard to check that there’s no block in my card triggered by me being overseas but even that was not the case. So I still don’t have any phone coverage and nor, do I think, can I use my iPhone as my personal wifi hotspot. It’s a blow.
I try and see my mum a few times a day for half an hour or forty minutes or so, which is as much as she can manage really. It feels terrible coming all the way only every couple of months to see her so little but I don’t want to disrupt her daily routine and if she can’t tolerate longer visits, I can’t really see how things can be any different.
I spend the rest of the time reading or writing or trying to do a reasonably unobtrusive singing practice. Today I’m going to try and learn a couple of songs by Duparc and Richard Strauss. Then there will be another visit to my mum and supper time.
Tomorrow, I’m fasting, which causes some amusement. I pre-order an apple or and orange, from the catering staff who then search for them in Neral market. There are days when apples aren’t in season and unavailable. Can you imagine that?
I keep driving past stalls piled high with sweet limes and jelly coconuts, which must be in season now. On my way back to Mumbai tomorrow afternoon, I’ll try and ask the driver to stop and buy one. You can get sweet lime juice in the major hotels, but not the jelly coconuts. I remember being intrigued when my dad introduced them to me on one of our trips out here: you select your coconut then they take a huge machete and chop off the top. When you’ve drunk the coconut water through a straw, the machete comes out again to halve the nut. The unsolidified flesh is parted forcibly from the nut and you can then eat its jellying mass. It’s delicious.
I’m off back to Mumbai again tomorrow. I’m staying for the first time in an hotel near the airport so I don’t have to struggle through too much Mumbai traffic for my Thursday morning flight. I expect the wifi will be a little more reliable at the Hyatt.
Here am I am again, breaking my fast day with the excellent food of the Emirates lounge at Gatwick. There’s veggie lasagne under that pile of green beans and butternut squash and braised fennel in cream and parmesan sauce. Somehow, I’m sure I’ll be over the 500KCal limit tonight, but I shan’t be eating much during the week and, as MSDD so sagely observes, “It doesn’t really matter, does it?”
I find it odd that I only ever seem to indulge my craving for braised fennel when I’m at the airport. We often receive it in our Abel and Cole box and it sits in the fridge bursting with taste and good intentions but it’s always forgotten. Fennel is a quiet and pretty vegetable: it’s so beautiful that I think it’s probably because it’s a shame to take a knife to it.
I’ve left the OH and offspring to sort out the downstairs of our house and put most things into storage ready for the demolition of the old kitchen in a couple of weeks. I don’t envy them. We have lots of stuff and it’s going to be hard work.
As for me: I’m going straight to see my mum on my arrival in Mumbai tomorrow instead of staying in a hotel so it’s going to be quite a long day. I’m quite accustomed to it all now, though and, who knows, maybe I’ll find something to put on Periscope. But there’s no putting it off any longer: I’m wondering whether this will be the time where my mum finally fails to recognises me. I’m bracing myself to take it in my stride. We’ll see.
Anyway, there are a lot of people obviously using the wifi in here and it’s quite slow so I’d better try and upload this before I have to get on the plane.