Limbo starts in 2006 continues until 2016
Last night I watched Mark Lawson interviewing David Chase, masterful creator of possibly my favourite TV programme ever, the stupendous, ‘The Sopranos’. Part of the beauty and cleverness of the writing for me is contained in the psychological study of each character presented to the viewer as a carefully wrought, beautifully painted portrait, warts and all. Chase talked about his childhood, his years in therapy, his parents and how his wife, Denise, had for years been urging him to create a character with the characteristics of his mother. He couldn’t find a way to develop this idea until he thought of The Sopranos and Tony S in particular – this hard, macho guy whose problems revolved around his grotesque mother. This portrait of Livia Soprano is apparently that of David Chase’s mother. People say after watching the show. ‘That’s just like my mother/auntie/granny.’ I thought that my mother was difficult, but not as bad as Livia. Until I visited her again today.
For the last six months, I have been visiting my mother twice a week. This is after a period of visiting once every three to four weeks over the last two and a half years due to my father’s failing health. Before that I probably visited three maybe four times a year, including Christmas. Like Chase, I am an only child.
Before, back in the mists of time when I lived with them, I never had what I could call a proper relationship with my mother. Speech was confined to orders and commands and her personality – controlling, angry, irritable, anxious and probably, though never diagnosed, depressed, made me as a young child (about nine) stop speaking virtually, as speech was something she took as a sign to seize and munch up for her grist mill. Speech is also a bid for power so it had to be quashed. Nothing pleased. Everything rankled, so I took myself metaphorically out of the situation. This is to say that we are not the best combination in the world, but now we are thrown together through various extreme circumstances. Eventually, I left my Midlands city for London where I still live.
Today, I was visiting having visited some thirty-six hours earlier (more on this later – re travelling when train tickets are cheap – certain days and times) to escort my mother on a hospital appointment. My mother has ‘probable Alzheimer’s’. In February 2006 my father died. Now she is dealing with grief, the loneliness of living alone for the first time ever, anxiety, all of the ingredients of her pre-existing personality together with the memory problems. This is quite a mix. It’s never really possible to know which of these factors is providing the responses one gets in any given situation.
So, today I travelled 100 miles by train, caught a bus to travel six miles to my mother’s house then to wait for transport to take us both to a hospital 14 miles away in the countryside. First, I bought roasted salmon, watercress and mayonnaise sandwiches for our lunch, plus goat’s cheese and sweet onion tartlets and an avocado for us both to eat for our ‘tea’ plus some Belgian chocolates for a kind neighbour who the day before had gone round to my mother’s to check she was okay after I’d been phoning on and off for about two hours with no success. She’d apparently been upstairs pottering, having a bath etc or so she said. It doesn’t do to press for information as she can become anxious when she realises that she has actually forgotten what she has/had been doing.
10.30 I arrived. I didn’t phone earlier, though I had reminded my Mother the night before that I would be coming and we’d go together to the hospital appointment. There is also a huge, felt-tip pen written sign I had made:
You are going to etc
There’s also a giant calendar where I fill in her appointments in red and blue felt tip. Partly I didn’t phone because she may not have remembered (even for half an hour) and partly I wanted her to wear an outfit I’d bought her to wear at the suggestion of the Staff Nurse who is administering ultra violet treatment to my mother’s back for a skin condition which is taking forever to budge. Staff Nurse X likes her patients to get into and out of their garments very quickly as she always suggests there is a queue of people waiting for uv treatment, though there never seems to be anyone in the waiting room. Anyway, in the spirit of cooperation, I bought a two-piece from Primark. The trousers you just pull on and the top is simply zipped. It is fawn and fairly featureless. Wearing this also means socks rather than tights (which my mother always insists on wearing underneath trousers and which are always difficult to get back into again after the treatment) can be worn so I’ve bought a pack of several pairs. I was foiled. My mother had remembered the appointment – not the details of the time of collection, but she was already dressed and waiting at the open front door. We talked about how the transport wouldn’t be coming for probably another two and a half hours, she started to argue saying that she’d written it down: that we would be collected from 8.45 onwards. This time in fact relates to another outing which takes place every week. This is written down on another calendar which she insists on using even although the spaces left for each day are so tight you can hardly write anything in the alloted area so it gets really messed up. It would be better/less confusing to use the giant calendar, but somehow this one just keeps on being used as well, adding to the general confusion. I suppose it has something to do with the glossy, colour photographs of country cottages and wayside inns in the surrounding countryside.
I braced myself and introduced the outfit suggesting that Staff Nurse X had suggested that something like this would be better and might mean she was more able to spend time helping my mother with her treatment rather than getting her dressed again. At first she wouldn’t play ball, but after a little cajoling, she tried on the jacket and loved it. The trousers were too long and she said she’d have to take them up because otherwise she’d trip. I said can’t you wear the new top, the beige trousers you were wearing when I arrived and socks instead of tights, as a sort of compromise solution.’ NO! I’ve never heard about having to wear different things. The things I’m wearing aren’t any more difficult to put on/take off than these’ – pointing to the new items.
There’s a lot of time to kill. The surgery, who have arranged transport say be ready two hours before the appointment (1.30). So far, this is the fourth session, transport has twice turned up late and once, early enough to reach the appointment on time. But never before about ten to one. We’re not talking. There are few jobs to be done as I was here thirty six hours earlier and the one thing I could do – go to the surgery to cash a prescription – I daren’t do as it would cut things really fine and sod’s law says that today would be the day when transport arrives at the earlier end of the two hour wait. So, my mother, irritated by the fact that she has got the pickup time wrong – and insists that it’s nothing to do with her – together with the problem with the outfit ( both of which indicate that she both hates to be ‘wrong’ and dislikes intensely, being as she sees it, told to do something ie wear an outfit that would facilitate her getting more attention and the SNurse being able to briskly move on to her next client) is bad-temperedly walking up and down the stairs, backwards and forwards in the living room, locking and unlocking two lots of back doors, going back upstairs to look out of the window to see if the transport, which won’t be coming for another two hours, is on its way. The ‘cottage’ calendar is referred to again and the time written there by her, 8.45. Finally, I say the time is wrong (this latter, is far too inflammatory a word and once again taps into the business of her not wanting to be told anything or perceiving everything as being done against her)and she snaps at me tells me I’m speaking to her in a bad way and that nobody asked me to come. I say I’m not playing that game. The poor me, leave me, as long as I have breath in my body etc.I know she doesn’t hear these words but she does what she always does, fills in the blanks and imagines my response says:’Are you always this bad-tempered when you are at home, or is it just me?’ (Don’t answer this one.) My body is starting to produce all sorts of chemicals. My heart is pounding and I’m having to say nothing. To respond is to end up screaming at her and I don’t know where this will end. |Tells me she doesn’t think she’s doing too badly for her age, she dos all her shopping (untree, I do this) her washing (true, she’s oibsessive about keeping bedlinen especially, clean) cooks herself a proper dinner (untrue, since I do the shopping I know that no cooking at all is being doneor has been for some time) does all the cleaning (mostly true with support from me and my partner). She says she eats well and has cereal with sugar and milk for breakfast (untrue). The business of eating needs tackling, I’m worried that she isn’t eating as well as she could. At the moment, after trying all sorts of prepared items, the most favoured currently are ready-made sandwiches, bananas – a great favourite, sometimes eaten twice a day with sugar and sometimes honey, milk, chocolates and sweets, biscuits, cakes, fruit yogurts and little desserts such as one which is called lemoncello. This is supplemented by two hot midday meals a week provided by the day hospital and day centre. On the two days a week I visit, we have a hot meal out on one occasion, sandwiches on the other and at the end of each day a sald of fish followed by fruit salad. To fill in the time I decide I’d better ring Age Concern and ask them about something I’ve heard about whereby they will provide for a fee, an escort to take people to hospital. However, after several wrong numbers, I’m finally told that what I want which is for someone to accompany my mother at the appointment itself so that someone can provide feedback to me, as M won’t remember all the details, is a request too far and is deemed to be asking for someone to take on too much responsibility. Something else I did and like everything else I have do do in a hurry otherwise M is suddenly there asking me what I’m doing almost whatever it is, was to photograph (not for the first time) the contents of my father’s wardrobe. I want a record of this just the way he left it. The stilled, lifeless garments.
I’ve bought chocolates- small gold box of Belgian ones for the kind next door neighbour who checked on M last night, when, after two hours of ringing there was still no reply. This neighbour is usually described when we are sitting outside with the door open in the conservatory, thus: ‘I’m not being funny, but I don’t know how X gets on an airplane, the size she is.’ (A complete non sequitur, apropos of nothing.) Or, ‘Look at the size of X she doesn’t do anything all day, you know.’ It’s totally untrue that X doesn’t do anything. But in my mother’s book unless you are sweeping, polishing, hoovering, washing or scrubbing all day long, you are a slob. To read in the day, as X does, is to be vile and unworthy. Anyway, I go round to the neighbour, have a little chat and on return, my mother, keen for more grist, says: ‘What did X say?’ I said she’d told me about the visitors she’d had the day before. ‘Did she thank you?’ ‘Well yes she thanked me.’ ‘Well I only asked!’ said in an angry, irritated voice. ‘In fact’, I said, ‘she has nothing to thank me for. I went to thank her for coming round to check on you last night.’ Silence, together with face pulling. Disapproval. Too much information.
To visit the neighbour, I have had to use my set of keys to open one back door, another back door and unbolt the garden gate, relock and reopen all of the above since my mother has locked all of the aforesaid and the only way of keeping her calm and even is, I find to keep things the same. So all of this I do behind her back. This behaviour is second nature to me. Even in much earlier times, going around my mother was the only way to keep the peace and the only way in which I could create my own life. So, a lifetime of subversion has come in handy for the situation we now both find ourselves in.
Time to have some lunch I suggest. We start with half each of the salmon sandwiches. I eat my second part and offer her one. No she’s had enough. I say she needs to eat more. She’s defiant. I seems to me this is an attempt at controlling the situation again. She may still be hungry – proof of which came immediately we got back from the hospital, she ate two chocolate biscuits having asked me if I wanted a sandwich – she would have had another one, presumably forgetting we’d had something two hours earlier, but proof surely of hunger.
Around 1 o’clock our driver arrives. He asks where we are going and because my mother can’t remember, she says in her most appealing voice, ‘where is it we are going?’ This remark is made softly because she needs the information, whereas minutes before, I had been ignored for several hours. He wears green paramedic trousers and a white shirt with elbow-length sleeves. He’s driving an ambulance car and he’s taking just the two of us fourteen miles one way and fourteen miles back. (Before getting into the car, M checks to see if favourite neighbours are looking and waving as apparently they usually do when she goes out to the day hospital or day centre. They aren’t visible, but M sings their praises and says they are just like parents to her.) Our driver is the first one we had three weeks earlier. Immediately there is a new focus my mother is able to get out of herself. She engages with the driver, says what wonderful weather it is and asks if he’s been on holiday. He says he’s just back from France and that’s the exchange over. We have a good drive through a pleasant-looking county He drops us off at the hospital saying he’ll wait. This is the best transport we’ve had yet. The ingredients vary from having to wait almost two hours for the driver to return to last week’s ten minute, to this week’s almost no wait at all.
For the first time, we are early for the ultra-violet appointment. We go into the uv room, my mother undresses completely – keeps her pants on only, in preparation for the new machine.
I chat to the Dennis Potter-like uv nurse whose work is confined to skin conditions affecting hands and feet. Her clients come in and put each hand into a plastic washing up bowl. Mum is in and out in no time this week. No fuss over the clothing. Staff Nurse usually has something to say about wearing easier garments. In fact, this time she comments on how quickly mum gets dressed again. Staff Nurse says mum is still scratching (part of the condition and the reason the condition is so hard to shift) and causing spots to bleed and infecting nearby skin. Says she’ll reconsider treatment at the six week stage. After this, Mum may have to have a District Nurse to come and treat the spots with iodine patches or at least I think this is what she says. All done, we wait in the reception area for a very short time before our driver emerges.
Back in the car, me sitting behind my mother, I see her face reflected in the wing mirror. All of the harsh observations I have made (and will continue to make) are swept away as I see her face go through a series of gentle transformations from sad and lost to hopeful as the sun warms her skin.
Back at the house. All the curtains are drawn and every door to every room, closed shut it feels and smells like a lonely place. Everything is opened up again and my mother is sitting in the conservatory where basically she stays for the rest of the day. Not doing too much except rubbing her arms and scratching her spots and snipping at me. I am almost entirely silent. Her mood is so powerfully awful and bad-tempered that I can’t seem to say anything that she won’t become upset about. At one point she makes what she thinks is a joke, something to do with dropping to bits. A remark she makes often. It isn’t to do with the repetition that I can’t laugh, it’s to do with the fact that I can’t trust what her response is going to be. As there is no response, she immediately says: ‘do you ever laugh at anything?’ in a challenging, angry way. I pass the time as best I can by going to the surgery, the pharmacy, the supermarket. On return, I make a salad with the avocado and goat’s cheese tartlets, and a fruit salad with overripe bananas and grapes topping my mother’s with a toffee trifle which must be eaten up soon. I know she doesn’t look at sell-by dates and this is a worry in the case of certain items. This is all set out when a good neighbour pops in. Once again, my mother immediately starts acting. The neighbour sits on the sofa, my mother stands before her and puts on a show, using her whole body to talk about this and that. She looks like the star of the show. She’s not talking about much at all,but she’s putting on a huge performance, gesticulating with great energy. The neighbour is chatting, she and I are engaging, but anything that is said is almost immediately hijacked and turned to my mother’s advantage, so that we always end up talking about her.
The neighbour leaves and we eat in silence. Somehow my mother mentions not being in too had a star of health for her age and also mentions that my father didn’t really have any ill health. Although I know I’m risking a confrontation, I have to remind her that my father had severe respiratory problems for at least six years, the last two of which he was on home oxygen for fourteen hours a day. She seemed to have no recollection of this. Something else is said, can’t remember what. I sense that she’s spoiling for a fight again, so move inside into the kitchen. ‘That’s right, walk away, walk away.’ After the last repeat a local expression of familiarity is used. To soften the statement? As a facetious comment? I wash up and decide I must leave earlier than I really need to but I can’t stand the tension.
We walk to the bus stop. A bus arrives quickly, we kiss. I sit downstairs and looking out, see her walking away without a glance in my direction. I have two hours in a Midlands city to wander about with little or nothing to do before I can catch my train. This was when I decided to document my visits.
Another visit five days later
Time is tighter on this occasion and there will be plenty of variety and different things to do. This is by far, from my point of view, the better format. I also feel it’s good for M to have variety, activity and stimulation and that although she may not remember the detail or even the action, it takes her out of herself whilst something else is happening. I know that M now likes to have plenty of time in which to do things and the worst thing of all is to rush her. Too much rushing creates agitation which creates bad temper. On the other hand, I sometimes have to speed things up because of the distance I’m travelling and the time available. So I’m apologetic when I ring M from the bus to say I’ll be with her in half an hour.
No point in mentioning things too far in advance, they will be forgotten, though I do sometimes mention in advance and as close to an activity as well (sometimes things can be remembered and I don’t know what makes the difference) and that I’ve made a hair appointment for her so she’ll need to be ready as soon as possible. The care worker had picked up the phone having just finished applying cream to M’s back for her skin condition. M says I am good and that she loves me, her voice falters at the thought of what she is saying. Says that she will be ready when I arrive. I reciprocate likewise. Before boarding the bus, I fly into Primark to return tracksuit-like hospital outfit described earlier plus socks deemed to be unsuitable in colour for a woman of her years. They were a bit too pastel. Bought Belgian chocolate biscuits for kindest of neighbours for her continuing help and support but especially for the effort she put in two days earlier.** Don’t like to give M too many appointments to think about as she gets confused. Also, if given the chance, she wants to change things or not do things, especially something like going to the hairdressers as it involves a walk and she worries that it might rain and then she worries that she might get wet, become ill and be taken to hospital. All very sensible and be prepared and girl guide-like, but it is a life lived in fear of the unexpected and is inflexible to the point of unliveable. So I juggle these concerns and pray it doesn’t rain, but if it does, then we’ll get a taxi back etcetera.
Arriving at M’s she looks a little confused and dithery. Has forgotten about hair appointment from 25 minutes earlier, but says she doesn’t really feel up to going. Says she will cancel appointment. Leave things for a bit then mention that she should be getting ready. ‘Where are we going?’ asks M? We bus (she loves the movement of the bus and being amongst people, her face changes shape and she is quietly smiling) and walk to the hairdressers where I leave M saying I’ll return in an hour.
Go off to get key cut and do shopping which I take back to the house filling up the fridge and cupboards with goodies. We never talk about the shopping about what she wants to buy or eat. I just check on what she’s got and what I think she will need until I next visit. I try to vary the items to give her treats and surprises. Some things work better than others. Pork pies and slices of ham just languish and rot, certain sandwiches likewise. Lettuce, cucumber and tomato now look as if they hold no interest at all. It may be that unless M can see an item right before her eyes, she simply doesn’t know the item is there. I think M thinks that she is still doing the shopping. I feel like a shopping fairy who magically appears twice a week. That’s another thing I don’t know – because time seems to have no meaning for her – if M knows how often I visit her. She seems to be surprised if I say the round trip is 200 miles and has described my visits as popping over as if I live much closer. I don’t know how much I am supposed to enlighten her on these and other matters. If I do, it highlights the fact that she has forgotten or doesn’t know something and this in turn worries her and worrying her makes her agitated and fearful.
Go to visit marvellous neighbour who has three grand or great grandchildren visiting. She telles me all about what happened on Wednesday. I try to find out if this sort of thing is happening regularly and how much is MN having to do. Seems this was a one-off, in this form anyway, although it can, as I know from reading the home care notes, be difficult for carers to make M hear them when she’s upstairs.
Walk back to hairdressers, M looks a lot better, hair all clean and curly, gives her a bounce. She also gets lots of attention in the salon and everyone there is chatty and accommodating. Conversation fairly repetitive as we walk back towards the village. Observations seem to be concentrated on various symbols. Cars are a great favourite. Shiny, brand new sports cars, expensive saloon cars are like magnets for her attention. Seems to go into a swoon. ‘Look at that beautiful car. I wouldn’t mind a go in that.’ Chimneys always attract a great deal of attention. Chimney stacks with eight pots come in for particular scrutiny and chat about how many fireplaces each house must contain. Flowers are a great favourite. The colours, not the names. Empty houses are a great favourite. Houses with rubbish outside receive particular attention. Bungalows that to me look like mausoleums are said to be beautifully kept. I suppose they are, but life looks hellishly boring within to me. At one point she says something about the colour of some flowers and my response is inadequate. She challenges me and I realise later that my response was exactly as if I had been inhabited by my father’s spirit. She says: ‘Did you hear me?’ in a hectoring tone. I say: ‘Yes (underlined). I heard you. Yes, they are lovely.’
I introduce a new topic. The subject of buying a card for one of her sisters who lives in America. M is keen to get a card. I start to describe how, if she buys a card today, we can post it as soon as she’s signed it. She says it will have to be weighed. I say I have already guestimated that by having an envelope containing much more than a a Birthday card weighed at the Post Office and that I have the stamps and air mail sticker. This is too much information and seems to confuse her so she starts a part of the conversation all over again from the point at which the card will have to be weighed. I explain again that this has been accounted for and it makes her angry. Can’t remember exactly which words she used but she suggests that I am speaking to her in an improper manner. This happens quite a bit on days when she seems to be feeling persecuted. She will say I am talking down to her. Whereas I feel I am being firm and explaining in a business-like way what is happening. It is true to say that if we have to keep on talking about the same thing/situation, my tone will become somewhat short I suppose. Finally, after being what I would call goaded, I start to say something along the lines of, ‘don’t start…’ I know she doesn’t hear what I say, but she jumps on me, so I quickly change the subject.
Off to the card shop where an otherwise pleasant experience immediately becomes irksome. The price of each card is looked at and exclaimed in horror.
I ask if she has found anything and am met with another mantra about not being 21 anymore and she can’t be rushed. A cheap choice is made. M moves to the counter to pay and I watch from a distance as I want her to make this transaction. I see the assistant saying I think that more money is needed. I move towards M and ask if she needs more money. She may not have realised it was me, but this makes it worse if she was responding to a stranger. She turned and almost growled, face all contorted and angry, saying, ‘What? What?’ I say: ‘I thought she might need more money. Her lack of focus, frustration and irritation lead her to sway as she moves away from the counter and as she attempts to put the card in a bag which is too small and too full to take anything else. I put my hand out to touch her shoulder so she doesn’t fall. I suppose it’s easy to say, but if she had stopped and thought about the process she may not have become unbalanced. She starts to get tearful as she realises what has just happened. I ask her if she’d like a magazine. She wouldn’t. By the time we are out on the street, the tears are forgotten and we are on our way to lunch.Whether she has truly forgotten what has happened, or whether she is putting on a brave face, I can’t be completely sure of. I hope she doesn’t remember.
Into the Continental Cafe. Face all bad-tempered. ‘I don’t want much,’ says M.Act of defiance at not getting what she really wants (which is any number of things and always has been , but no-one including her ? knows what they might be) or a genuine lack of interest in food, or possibly not hungry. Says she’ll just have a sandwich. Since sandwiches are making up the bulk of her eating these days. I persuade her in the direction of the baked potatoes (the only other choice apart from muffins and other sweeteries). ‘I’ll just have the one with baked beans,’ she says. Once again, is this to do with not really being able to make a choice. When there are too many choices – possibly ten different fillings for the spuds – M becomes what exactly. I decide on the baked potato with tuna mayonnaise and salad. Go to the counter and order two tuna spuds and an orange juice for M. Food arrives and there is no indication at all that the food placed before her is in any way different to that which she thought she had ordered less than ten minutes previously. Although M had said she felt sick earlier on, there is no sign of this now as she tucks in. |She scoops out the fleshy part of the potato and mashes it outside of its shell. She mashes and pounds the tuna into mush as well. Apart from the shell everything is eaten. M proclaims herself satisfied and says she enjoyed her food. In the cafe M is able to indulge her voyeristic passions endlessly. We sit opposite one another at a table for two. She faces inwards, I face out towards the road. M constantly bobs her head from side to side . to see what is going on behind me. She makes virtually no attempt to engage with me or me with her. My defence is her bad-temperedness, hers I don’t know about. But if she’s getting ‘fed’ by seeing other people and is feeling part of life, that’s okay with me. The main thing is to keep her on an even keel. The cafe has been recently re-equipped with metropolitan symbols. Low leather sofas are everywhere. The larger menu which used to have hardly stalwarts like bacon and egg, fish and chips, etcetera, has been trimmed down to encompass every kind of coffee drink – latte, capuccino, expresso, etc. Some regulars are put off by the high stools and schoolgirl waitresses wearing newly designed t-shirts bearing the logo of the cafe. But the main thing is, continuity has been altered, they’ve gone modern in a deeply conservative zone. (Whatever that means.) One man asks if the tea will be served as it used to be. What he really wants to know is, does it come in a pot so that two people can share. M is seemingly ignorant of the changes, een though they are substantial and we have been coming to this place every Saturday (and some weekdays) for months. I draw her attention to the changes by way of trying to engage her in the here and now., the less abstract place in which she normally seems to reside, the faraway and long ago and the possibly somewhere altogether specific to her alone. I also introduce the topic as a neutral, strife-free zone. The stools – black, big and wooden – are perceived by M as designed for children.
Lunch over and incident-free, we walk back to M’s house.
By now M may have forgotten that she’s had her hair done. She didn’t do it today, but on previous post hairdressing visits she immediately goes upstairs and combs out all the curls, pulls back the hair severely and secures with hair grips.
First job back in situ is to work out how to use the key safe. For months, practically since the home care started six months ago, social services have been keen for M to have a key safe. I wasn’t keen as I wasn’t sure she needed one and also it seems to give the SS a great deal of power. However, things came to a head in the week, when, on an early morning call (7am) arranged so that the carer can check M’s okay, prompt medication and apply cream to skin condition as well as remind her that she is going out (this happens twice a week at the moment) the carer was unable to make M hear the door bell or the phone. Eventually at about 7.40 the SS phoned me to ask if a neighbour had a key and how we might solve the situation as they were concerned. Good neighbour was enlisted** and as she and I were talking on the phone, M’s bedroom curtains were drawn and the windows opened. She had simply overslept. Anyway, I consented to the idea of a key safe after this fiasco but think I’m going to regret it since I haven’t yet found out about how insurance is affected etc. So, with newly cut key and mobile in hand, the out of hours care team guide me through how to work the key safe. So now everyone in the neighbourhood knows that there is a key safe on the exterior of the house. M might as well have a neon sign on the door saying, vulnerable older person within. Have to check a number of questions with the SS on this system. Good neighbour (male) pops over to have his instruction in how to use, gave good neighbour (female) the code earlier. M says: ‘Why don’t I know about how to use the key safe’ (she doesn’t call it that, or anything really). This is a bit of a gut reaction. I don’t really think she wants to know, it’s just that it’s her house, etc. She has a point. Perhaps I’ll try and instruct her how to use it on another occasion. Today, time is tight. I suggest to her that she doesn’t really need to know how to use it, since ordinarily she will be inside and she has her own key.
Good neighbour (female) pops over, chats about grandchildren and having been to McDonalds where they had vegetarian options since even the 6 month old baby is vegetarian. M pipes up and says she would have liked grandchildren (a subject, like others, never discussed with me) but that since I was never married, I hadn’t had any. This is completely made up and bypasses the fact that half the world’s population probably aren’t married and many of them have children. She did remember to tell GN (f) that I was vegetarian. As usual at the sight of GN (f) M goes into a performance act in which she is all exuberant animation. GN (f) uses keyword BIKE. With this M enacts movement on the tandem she and my father used to ride around on during their courting days. She sways from side to side and then collapses the bike on to the ground to indicate what happened on the day when she insisted on getting the driving seat. Apparently, things got out of control and they had to throw themselves on to a grassy bank. Very symbolic. M’s roaring with laughter at this story and herself. This is an oft-repeated tale. This dies away. GN (f) mentions going away for a few days. M says again what great neighbours they are and if ever she was in a hole she’d know who to call on. Gets weepy when she says what good neighbours they are. Possibly realising these are the closest to family she has?
The Birthday card debacle continues again as I try to get M to sign and address it so that I can take it away and post it so it has sufficient time to reach San Francisco. M goes into the earlier diatribe about weighing it etc and taking it to the post office and I have to remind her about the bank holiday, the fact that it’s a weekend and in the back of my mind is the almost certain knowledge that she won’t go to the village to have it weighed. ‘Alright, alright. I’ve been retired so long, I don’t know what day it is or whether there’s a bank holiday or not.’ So I drop the subject once I see she has written her message and addressed the envelope. She puts it on the sideboard. Later, I remove it and post it that afternoon in the town.
Bits of information surface throughout the day about how she and Dad had thought of moving into the Retirement Flats in the village. I don’t know if they had or not. I do know that W and I have taken her to look at a flat on two occasions and she loved it, especially since there is a main road and lots of activity and a great social scene there. She also mentioned that she and Dad had dropped into Aldi (we passed this on the way back from our lunch) a fact I know can’t be true since he died before the Aldi was built.
Before leaving, checked care notes to see what’s been happening and also to check times carers worked as I am responsible for receiving the Attendance Allowance payment and for paying Social Services for the care, and filled up dose boxes with Aricept and Sertraline. Former to maintain ? stability re probable Alzheimer’s, latter to help with mood. Wound up paternal Grandfather’s Grandfather clock which he won during his running career with the army and Castleford Harriers. (He was presented to King George V and Queen Mary after finishing sixth out of a field of 700 in the army cross-country championship.) Checked to see M had plenty of money. £20 and @10 notes are hidden throughout a variety of different purses kept in different bags in different drawers. It’s a constantly changing scene, but I can usually find the money. Don’t like her to have less than a £100 float.
‘Do you ever laugh at anything?’seems to be another new mantra. This is said as an invasive comment in a derogatory manner when I’m not responding exactly as she wants me to, when she wants me to. Apparently, a man wearing shorts has caused mirth in her, but prompted nothing in me. I read this as yet another complaint about something she doesn’t understand. Rather like the headline in her daily paper (the Express) which is designed to reinforce their readers worst fears. The headline was around the idea of the country being ‘invaded’ by citizens from elsewhere in the EU. This made her incredibly angry, furious at what, I’m not quite sure. She seems to think these others will be stealing jobs and state benefits when it is so much more complicated than that. But grumbling gives her pleasure. So… ignores my comments and starts the cycle of complaint again and again.
Got back to find just one piece of mail a small brown envelope with a Midlands postcode. Next prescription for M’s Sertraline. This is the third in a trial run of 3 months worth. So far, I have only seen one significant (perhaps they don’t really work in significant changes) difference. On one day, about two weeks ago, M’s mood was as I don’t believe I have ever seen it before – consistently the same over several hours and pleasant. This mood has never been repeated.
Another five days have gone by.
In between time, I ring M once a day at the far end of things when she’s winding down, as I know she has been seen by the carer in the morning and on two days she hopefully has been out all day. For her this usually means between 4.30 and 5.00 pm when she has her tea, washes up, bathes and gets ready for bed and for the following morning. This last bit is especially important if she is going to the day hospital or day centre. I remind her of this, she has big cards, I’ve written to also remind her and then the carer does the final push. It doesn’t always work, but there have been concentrated periods of weeks when all has gone well.
Our phone chats are fairly basic affairs in which M describes what she is doing at the moment of the call and tells me anything else that she might remember such as a visit from a friend or how she did the washing earlier etcetera. Normally she says she is just getting her tea ready and I sometimes try to engage her in what she is making knowing it will either be a sandwich, some bread and cheese, yogurt and cake, maybe bananas. Usually M describes this as her bit of tea as if it’s a fairly slight affair, but she doesn’t sound downhearted on this aspect of things. We talk about the weather and she usually asks me what I have been doing during the day and sometimes we explore this a bit further. Mainly I’m ringing so that she feels connected to someone as well as checking to see that everything is alright, that her day went okay, was manageable, emotionally and practically, to see if she has any problems. I’m also aware that I am listening for any signs of change in behaviour or speech or anything really.In the days since I last visited, M has sounded very pleasant on the phone on each day.
I always check the home care notes for any signs of change in behaviour, also to make sure a carer comes each day and to record how much time they have spent on each day as I get the bill to pay for this on behalf of M. On the very next day after the key safe has been installed, I see that the carer who left me a note on the previous day in the file asking me to get a key cut, who said that the safe would only be used when ‘ necessary’ has recorded that she opened the key safe first, before knocking at the door. My mother was apparently up, dressed and ready for the day so there was absolutely no need for this. The next day and the next report the same thing. Carer goes to key safe first only to find M is up and about and ready for action. So much for ‘necessary’. Must find out how any people can use this facility, when they should be using it and so on. I appreciate it works for the SS as they don’t have to hang about and can speed on to their next call. But I don’t believe it is necessary in M’s case to have somebody letting themselves into her home willy nilly.
Although I had told M the night before that I would see her today, she hadn’t been expecting me. This was a visit when there wasn’t an awful lot to do so I was able to slow my pace down. Instead of sitting in my father’s chair. I sat closer to her, letting her chat however and about whatever she wanted to. M was scratching her spots and actually admitted something I had thought was the case, that she does it as a form of activity. M started to talk about her childhood. This she does fairly regularly. On this occasion, it seemed to be prompted by a postcard which I had bought for her (as a visual aid) on a visit my partner and I made a couple of months ago, with M, to the place she was born and lived in until she was about nine. The postcard is described as having been bought by M. The card depicts a church and it was this church she says that she went to, although she went to school a couple of miles away in another direction. These facts she repeats often and says she doesn’t understand why that was – school one direction, church another. She talks about her father as a cold man who never showed any love or affection for his four children. M says he should never have married. He was a well educated man and she also says she doesn’t know why he and her mother ever got together. There has been a suggestion in the past that a night or two of passion might have changed both their lives.
He was a chauffeur for Lord Lonsdale and identified with the upper echelons. Demanding, always wanting his white collars to be whiter than white, stiffer than stiff. He drove yellow Rolls Royces and M and her elder sister were once driven by him to see his parents who lived up in Cumbria. He apparently was a fantastic gardener and grew all of the fruit and vegetables for the family. They had sacks of potatoes and swedes stored for the winter. He dug trenches for celery. In those days, gardens were the size of small fields. Everything he did was exacting. I remember him as a distant presence and his home as an icy space. M says that he did provide well for the family and that they always had what she calls a good table which she also believes stood them all in good stead, health wise (until now). Manners were also something her and her brother and sisters had instilled in them and something M is grateful for as it enables you to mix in all sorts of company. Says her mother was nothing but a slave to him. With four children living in the country, she had to walk two miles to the nearest village and two miles back, as did the children to reach school and the church. She had to bit water for washing in a copper in the backyard. She was a good cook, otherwise M’s father would have thrown her out of the house’, M says, laughing. But her life was nothing but a drudge, something she didn’t realise at the time,but looks back at now with sorrow, I think. Whenever I’m preparing something for us to eat in M’s kitchen, or when I present her with some food, she will often say:’As my mother would have said. We were always good in the trough.’ This makes her laugh as she recalls her own mother. Something I almost forgot, is another memory of M’s which she has mentioned before, about the idea of going to church. Apparently, when she was young (not sure how old) she took to going to church several times a day on a Sunday. Her father apparently disapproved and didn’t say anything to her about it, but told her mother to tell her he felt she was going too frequently. What I’d like to know is, why M felt the need to go so often. I asked her why she thought this might be and I think she said something along the lines of because her father was so hard to please, she thought this might be something he at least wouldn’t disapprove of. Words to that effect anyway.
We talk about GN (f) she wants to know if I asked her to come over last week. I describe how this all came about, because of a carer not being able to get in, me being called, GN (f) and I talking and so on. But no, I say GN (f) volunteered to come over and see M. M is pleased with this, she often talks about not wanting to be a burden. I wish it wasn’t so difficult for M to express her needs because she might have a better time.
I try to be gentler and decide to try and include M in two activities today, instead of doing these alone. Some shopping needs to be done and I ask M if there’s anything she’d like so we can make a list. Looks in the fridge where there are lots of tins (this is a lifelong thing) of fish, fruit, meat, which I know won’t be used. There isn’t much of what you’d call instant sustenance ie sandwiches which I’ve been buying lately and which M seems to respond to. Says she doesn’t really need anything. She does and even if she could manage for another day, she doesn’t or isn’t able to think ahead and doesn’t realise she’ll probably run out of something on a day when she’s been out and is too tired to go and buy it when she gets back. So my job as I see it is to do the thinking and meal (if you could call it that) planning to give M sufficient provisions until I next return. Today for instance, I bought loo paper – although she’s got a few rolls, it’s boring to run out of. Lindt chocolate, 70 per cent cocoa solids, an attempt at seratonin uptake. Fruit pastilles, give you something to chew when you can’t think of something else to do. Mars bar six pack for pure, cheap pleasure. Tuna fish in sunflower oil which we will have for our tea tonight. Instant coffee and tea bags. M has plenty of these in, but I think it helps her to feel comfortable and secure if the cupboards have plenty of staples. Three sandwiches with assorted fillings with sell-by dates two days hence. M is quite safety conscious, so a sniff test will tell her if the sandwiches outstay their welcome. Individual chocolate brownies and Lemoncello desserts as chasers to the sandwiches. Avocado, which we have for our tea, also watercress ditto. Litre of semi-skimmed milk – M still has half a 2 litre container and three packs of long-life in the cupboard. Big bunch of bananas which M always has for breakfast with honey and some white seedless grapes some of which I’ll introduce into our tea. This list is fairly representative of what M is eating at the moment and I’m aware it’s not very well balanced and that we have to do something about the absence of proper nutrition and proper, hot meals. The main thing is to ensure that she is tempted by the items (which I try to change but not too much as some things just haven’t worked and have had to be thrown away) and that she eats enough and enjoys what she’s consuming. Today’s other joint project was to be the filling in of the calendars. This I thought might make a difference to M remembering her appointments. However, because M will only do things when she wants to and doesn’t welcome reminders (when she remembers that she’s being reminded) which she perceives as criticism. I filled in just the large calendar.
Before setting off for the shops M asks me if I had seen the photographs of my cousin with his niece at her wedding. I have, but I look at them again and say: ‘Isn’t this X’s daughter?’ ‘No I don’t think so. It’s his niece.’ We’ve had this conversation many time. M and my father were invited to the wedding in Scotland, but my father didn’t feel well enough to go. M now remembers this as her having been invited and not being able to go because she didn’t feel well enough. She has forgotten that this event took place when Dad was alive they were both invited and my cousin’s daughter sent them both a set of photographs. M also said she sent them some money instead of a present, whereas I know that it was my father who did this. It’s the anniversary of Princess Di’s death and the Daily Express is once again full of stories about the subterfuge surrounding her demise. Every time I visit M they seem to have a similar story, but the anniversary has them going for broke. M says what a lot of wicked people there are in the world and seems to approve of the conspiracy theory idea. Have also to collect M’s reuptake pills. The hospital send the prescription to me in London which I then cash in at M’s local chemist or one in the city. Today there’s a 20 minute wait as the pharmacist is out to lunch. Not sure how much good the pills are doing, perhaps they work very subtly and shave the edge off very complicated, exhausting feelings.
M must have asked about six or more times what my partner was doing today. This is something she says every time I see her. Talked about dad and what a wonderful marriage they had. What a wonderful husband and father he was. ‘We went travelling a bit, after you left home.’ At this thought her face falls and becomes deeply pensive. In this moment, I see how she suffers and has suffered loss throughout her life and wonder how this feeling comes about. I know too that I feel loss acutely to the point of —- Tells me she gives dad’s photograph a kiss every morning and says: ‘Good morning sweetheart.’ Mentions that people draw attention to his baldness and tells me again that he used to say that no moss grows on a busy street. She says this was certainly true of him as he had a great thirst for knowledge and that he taught her a lot. ‘I miss him. He was such good company.’ At many points when I’m with her on this day, is scratching and picking her spots and looking out of the window. Chats about the WI and how she hasn’t been for a long time at first because she was looking after dad and now because she doesn’t know whether she can be bothered to go or not and doesn’t feel well enough. Earlier on I’d asked her how she felt and she said she felt fine, just lonely. Now, it’s a different story. I suppose she might mean that physically she feels not too bad, but emotionally, she may not be strong enough.
‘Don’t forget you are going out tomorrow,’ I say.
‘Am I? Where am I going?’
‘X day centre.’
‘Oh yes, I’ll get ready tonight. Have a bath, get all my things out – shoes, handbag etc.’
Later: ‘You know you are going out tomorrow.’
‘Am I? Where am I going? What time do I have to be ready?’
‘8.45-10.00 pick up’ I say.
‘No problem. I get up about 8.’
M never projects about how long it takes her to get ready. Unless she gets up at about 7 she won’t be ready in time and may miss her outing.
Later: ‘Well, you’ve got tomorrow to look forward to.’
‘Have I? Where am I going?’
Am I not stimulating enough company for M? I’m the one M spends the most concentrated time with and as already mentioned, we haven’t had a particularly chatty relationship. It’s almost as though we don’t know one another or know any of the details of the other’s life. I have felt on particularly difficult occasions, as if, in M’s front room, we are sitting in a station waiting room. We don’t know one another and are akward together. Neither of us seems to have what it takes to get through to the other. When M talks with her favourite friend of all time B, B is incredibly stimulating, covers a lot of shared ground, laughs and jokes a lot. But they might see one another for an hour, now and then (can’t be sure how often) and all the work is being done by B, as she’s that sort of person. Ms repeating with others does start and continues until the other person leaves, but to what degree, I’m not sure. I don’t see M in conjunction with the people at the day hospital or day centre for instance. Though during an assessment at the former, I was told that M was high functioning and very sociable. But then they also told me that M wasn’t depressed even although I had told the community psychiatric nurse that M had said in various ways on different occasions, that she wanted to kill herself, or be dead. When I asked how depression was being determined, they said, well she’s always sociable when she’s here. But I said, you don’t see her all the time and neither do I. She puts on a show. But I have been with her and seen her face changing and it looks to me as if she’s falling into somewhere else, some other place. They then prescribed anti-depressants. I hope M does have a good time with others. Perhaps if we are more gentle with one another. But, when her mood is angry, I find her very difficult to deal with. All of my ways of responding – set years and years ago – obviously come in to play and although I resist because I can see things are much more complicated now – I can’t always help myself and the only way through is for me to press MUTE.
Another chat has M telling me that she can go to a local shop if she needs any bits and bobs. From her armchair she uses large arm gestures to indicate the direction of the shop. They resemble nowhere at all that has shops. In this story, she is suggesting she needs very little which to some degree is true, but she has no real concept (partly because I’m doing the shopping) of her consumption of anything and no ability to speculate about what happens if things were to run out. This is why I’m so keen to keep everything stocked up, because otherwise she will worry and become anxious. I wish she could do the shopping, but I daren’t leave anything to chance. We’ve had spells of doing the shopping together, but this doesn’t work because (a) M doesn’t really know what to buy and becomes anxious over this (b) Often doesn’t want to walk to the shops (c) Has problems with money (d) Can become tired and confused.
At about 4.45 we share watercress, avocado and tuna salad with brown bread. M has Paul Newman dressing on her watercress and then proceeds to pour industrial strength malt vinegar and salt and pepper over the whole. She searches the food for enemies, little stalks from the watercress, bits of avocado not green enough, tuna too unpink and transports these bits to the side of the plate. The rest she pats and presses into a mash and slices through the watercress as if it is a suspect to be struck out. For afters, I give M grapes with vanilla ice cream and she finishes with two cups of tea. ‘Lovely’, she says. ‘We were all good in the manger.’ This is a variant on the ‘all good in the trough’ two expressions M always remembers her mother saying.
Looks like rain, as we walk to the bus stop. We’ve avoided any clashes today. Remind M about going out tomorrow and we have to go through the whole thing again. Bus comes quickly. I sit downstairs, we make eye contact and we both wave.
Been out all day so ring M a bit later than usual. No reply at 5.15. Leave it for a bit, keep ringing off and on until about 8.30. Think I can’t ring the neighbour again, she’s just back from a short holiday today. If there had been anything wrong the carer would have phoned me in the morning. Hopefully M went out to the day centre and would have been delivered safely home. Also GN (f) is familiar with irregular signs – curtains drawn at right/wrong time of day, lights on/off etc which she looks for frequently. Decide to leave ringing til the morning. Next day wake late. Ring M around 1 o’clock. No reply. Carer must have been and gone, so imagine thins are okay. Still, best check, enlist help of GN (f) who pops across to M’s and waits to hear phone ringing. I talk to M and explain about ringing and ringing, she says perhaps I might have the wrong number even although I just got through on the second ring to GN (f). ‘X is a very good person,’ says M, her voice breaking and tearful. Says she doesn’t know why she didn’t hear the phone. Will have to leave things for now. Is M blacking out or dreaming? Is it her hearing? Is it because she is upstairs and can’t hear the phone ringing downstairs? Will have an extension put in the bedroom and maybe get M to go for a hearing test. Rang later in the day at usual 4.30 tea-time. No problem, picked up quite quickly. M sounded fine.
When I’m away from M I think of her alone in the living room. Where once Dad would be in his chair chatting away nine to the dozen. Anecdotes about his North Country relations flying. He’d talk about his father, a miner and runner. He’d talk about something on TV. something he’d read about in the papers, a political issue. Always thinking, always remembering, he could talk about anything and keep himself and others amused indefinitely. Now there is silence, emptiness, a yawning gap.
Realise I’m examine M’s behaviour in a way that possibly no one ever would be. How would I like to be so keenly observed? What are the real reasons” A mixture of past and present. Fear of something happening that could be prevented or stopped. Trying to hold on to the past. M is now my link with Dad and our shared past. As I am to her. Having lost one parent I seem to be hellbent on preserving the other one now symbolic in her visible isolation and loneliness and her face wan with loss and grief, of all that’s gone. The house too, although never lived in by me is where they lived when they were still Mum and Dad, my parents.
Four days after last recorded visit
I’m taking M to the hospital to have uv treatment for Prurigo. MMs bar announcement on train says unable to provide a refreshment service as the ‘engine’ has broken down in coach F. Air conditioning also affected. Please move if you want to says a voice. Am taping these announcements on a regular basis for an on-going project I work on from time-to-time called, What Did You Eat Today? This takes various forms. Filmed portraits. Observational and other texts. Photographs. With my film-making partner, we have worked with the Mass Observation Archive and had films shown in galleries including Tate Britain. I suppose this diary I’m writing around M is another form of intimate first hand observation of a well-known (to me) subject. One of the reasons I like the MMs bar announcements, apart from the catalogue of freshmen’s described, sighting the piece firmly in the 21st century, is the way that, although it is supposed to be a regular straight to mic piece, there are all sorts of interesting variables in the way that each person delivers the information. Some sound incredibly confident as if auditioning for a part in some unspecified drama. Others are less ambitious. The stresses, the pauses, the accents make for fascinating listening and make you wonder about the identity of the person behind the voice. Anyway, today the announcement was completely unexpected and sounded as if the entire train had broken down, rather than an aspect within the MMs bar. Unfortunately, I think the mic wasn’t quite working on the tape recorder, so I may have missed this gem.
Coming out of the station, I see a man with a couple of bags, possibly he is going or coming back from holiday. He was trying to use the pay phone. Something about his dress and age reminded me of my father. I turned back to see if he needed help, but worried that he might find me patronising, so I went on my way.
Phoned M from the bus to say I’m on my way. She sounds good, but a little hesitant, perhaps worried that I was going to cancel (if she’d remembered). Say we’re going to the hospital. ‘Yes,’ she says, ‘at 11.30’.
Just realised that M’s worrying nature might also have been why I gave up trying to do things as a child and young girl. She can’t keep any anxiety to herself, so it floods the space around her and the people in it. She won’t stop talking about something worrying her until it is resolved. Usually by the other removing the worrying factor often to their detriment. Dad was the buffer. Now it’s just she and me. Attempting to turn M’s life around (whilst trying to keep my own life shipshape) has been like trying to turn a liner round and back to shore. Spending so much face to face time with M, I am not able – never have been – to always bite my tongue, nor do I always want to. It seems that Dad had a way. But this has meant that presumably his and I’m sure my, behaviour were perverted, distorted, subverted. It may have been better for M if she’d been taken to task more. But it’s all too late for this now.
When I reach M’s house, I find the back gate and doors all locked up. Walk round to the front, door partially open M walking around, waiting. (Even although when I spoke to her on the phone half an hour earlier she had remembered 11.30. Or did she, was she reading from the big sign I have made which sits by the telephone? Thinks transport will be along soon. It’s 1am, surgery ask you to be ready for at least two hours before appointment (1.30) but as I think I said before, they never arrive before about 12.45. Says she’s a bit mixed up. Says she’s been ready for collection since about 8.30. Says she doesn’t know whether today is Wednesday or Monday or which day and becomes upset at what is happening to her. She says she can’t believe that she used to be a supervisor in M & S when she can’t remember what day it is. I talk to her about this and say it’s partly to do with the fact that she doesn’t have too many reasons to remember what day it is. Also attempt to reassure her that she’s more familiar with the times of going out on other days, because she’s been doing those for longer so she has a routine. The hospital visit isn’t like that and, as she says, is ‘the odd one out.’ The way I have dealt with this situation is partly true, but it’s not the whole picture. I have a feeling that this is how Dad always dealt with M her whole life. He was constantly softening the blow of reality to make life more bearable and less anxiety-inducing. But now, I wonder what the ‘professional’ guidelines on this sort of softly, softly viewpoint are? Should I be much firmer and try to make M remember details more? I don’t feel there is much mileage in this as, so quickly, even with Dad, she starts to feel threatened, as if by describing something that should have happened and hasn’t, is a way of getting at her. She feels/has always felt, constantly under attack. What is this? Where does this sort of feeling come from? I feel now it’s too late to be insistent – though sometimes, very occasionally, when pushed to the limit, I have to say it’s not like that – I feel it would be cruel to point out too much as it will worry her and make her fretful although if she forgets then maybe I should try… But then she doesn’t forget everything or at least she remembers aspects of things which stick for some reason. Working it all out is exhausting.
M looks well turned out although unfortunately, she’s wearing large white and gold clip-on earrings which are totally ultra violet unfriendly. Apparently, jewellery bounces off the ultra violet inside the machine. (But what this does I’m not sure. In almost any given situation one is given information piecemeal and only on request not as an automatic thing.) Decide to leave mentioning jewellery til we reach the hospital but in the meantime, somehow, M takes them off anyway. M has a ladder in her tights which I mention knowing she has (I bought them) three new pairs of tights upstairs. She’s not interested in changing them, says her skirt will cover up the ladder and anyway doesn’t know where new tights are. Say I’ll help her look, but no. The reason I mentioned the ladder was that once, on a uv visit she became quite upset when getting dressed, to find ladders in her tights which was when I bought the new ones.
Subjects for discussion today whilst we wait for transport are Princess Di again. Seems every day the Daily Express run yet another fantasy story on her demise. ‘That girl will never be left alone, as long as she lives,’ says my Mother. Another topic for revisitation include the fact that my father passed the Officer exams when he was in the Army, but didn’t tell her mother and father. They lived in a mining community, had two other, hunger sons and Dad new they would scrimp and scrape to get the money together for the uniform and the cash needed to pay his way into the officer class. This proved what a character he was M said. It may also have had something to do with feeling he might not fit in, liking to go his own way, not telling his parents was an intelligent response, if his parents didn’t have money. Many reasons. M doesn’t like to explore other avenues of possible explanation. Never did.
Driver we’ve had before arrives. He’s friendly enough. Asks us both to sit in the back as he has to collect someone else. A lady having a cataract operation is picked up and we cross country to the strains of Heatwave and the rest of the Motown back catalogue. M is fine in a moving vehicle, looking out at the scenery – she always has been – literally takes her out of herself, away from herself. Not a worry on the horizon. How sweet it is… Treatment fairly uneventful. Staff Nurse suggests condition is no better and no worse. I take a look. Looks a lot better – drier to me – in places, and in others quite fierce. Have to wait for pickup in reception. M seems to be incapable of engaging in something herself. Have given her a glossy colour magazine of homes and gardens which she simply flicks through, backwards and forwards, backwards and forwards, sometimes putting the magazine down and then possibly forgetting that she has looked before, goes through the process again. The quintessence of the voyeur she watches me and my expression. She looks at what I am reading. All the time she is flicking, she is looking around the reception area at other people her head is constantly revolving. Has she always had a problem being ‘her’?
It was always like living with a time bomb. I’m not sure that Probable Alzheimer’s has compounded this. There’s always a sense of waiting for detonation. How long have we got? Instead of ‘does anything make you laugh’ when M’s not getting the response she requires, we now have: ‘does everything I say annoy you? Because the way you look at me…’ (Don’t get me started on this. The way she looks at me and everybody else is with a mixture of distaste verging on hatred.) ‘Because you know what you can do.’ Meaning, as long as I have breathe in my body. I don’t need anybody to help me. But what about what I need. Well, of course that’s always been a problem. I have never been able to express need in her direction, which is why she thinks I’m independent and never needed mothering. It’s the same with other people. M doesn’t seem to recognise other people’s requirements at all and this hasn’t been affected by Probable Alzheimer’s. All that happened was M started to look for her keys, as we walked to the bus stop. She got shaky and worked up not being able to find them. I suggested she put them in her pocket and then maybe just carry them so she wouldn’t have to go through this whole worrying, distressing routine when she arrived back home. She decided she’d put them back in her bag and said she would find them okay. I said, under my breath something about just like last time. She didn’t hear this, but picked up on my expression and said what she said.
This was at the end of a day which for me had been fairly hectic travelling the usual 200 miles plus, demanding, boring, repetitive, uninteresting and depressing. M turns things on their head, so she can start having a go, over and over. It’s one of the few things I suppose that has ever made her feel powerful, in control and alive. I felt sick. Said I din’t need this, meaning for all of the aforementioned reasons. She said she didn’t need it either. A bus was coming and to avert another ten minutes of us waiting together in possible silence, I told her to stay on her side of the road, pecked her on the cheek and ran away from her to the bus. Until this point, I thought we’d got off fairly lightly today.
Today I’ve travelled the usual amount.
I’ve bought and organised the lunch.
I’ve bought M some flowers which look very nice, But I forget after a while start to smell. Some tiger lily-type blooms called Alstroemeria.
I’ve checked that all’s well with the house. I’ve wound up Grandad’s clock. I’ve checked the care notes, made a note of the times worked as I have to pay the bills and filled up the dose boxes from which the carers prompt M’s medication.
I’ve made notes for the carers and attached them to the file re extras re M’s personal care.
I’ve made a phone call to a home hairdresser as M has said often that she’s not too keen walking to her existing place and positively won’t go if it’s overcast or raining.
I’ve tested her phone line positioning M in different parts of the house with the doors closed, as last week it was impossible to get in touch with her over several hours and I had to get a neighbour to pop over and check her phone.
I’ve got M to help me check her front door by locking it and seeing whether or not someone can use a key from the outside, if the key remains in the lock on the inside as carers have been trying without success to gain access using key safe key in this way.
I’ve filled in the calendar with her appointments.
I’ve adjusted the big sign I leave with directions for M for her hospital appointment and made sure other big signs are in place.
I’ve bought tape for the photo album and fixed it.
I’ve bought a week’s worth of shopping and dragged it back from the village on inefficient wheels.
I’ve bought and organised the tea. M forgot about this and laid out some foods for us to share by the time I returned from the shops. I had wanted her to eat something other than shop-bought sandwiches. We were going to have a vitamin and omega-rich meal of oak smoked salmon, watercress, lettuce and avocado with brown bread and butter, followed by fruit and maybe ice cream. Instead, M has laid out a spread of chicken sandwiches (forgetting, she never really did remember that I don’t eat meat) lots of different chocolate biscuits and two lemoncellos.
I’ve emptied bottles and jars. Filled up cake and biscuit tins.
I’ve thrown away food items that have lost their chairs.
I’ve travelled a further 14 miles one way and 14 miles back across country to escort M to hospital where I’ve asked questions and ascertained the future of treatment.
I’ve chatted with GN (f) who popped over to find out about M’s hospital visit.
I will be making phone calls to the surgery to arrange transport for next week. To cancel day care on the day M goes to hospital and to cancel day centre visits re the same. I will also alter an appointment for M to see the Consultant about her skin condition so that I can stay overnight and accompany her as the appointment can only be early in the morning and we have always to allow two hours for the transport.
I’ve made an essential list (not for the first time) of phone numbers and pinned it to the outside of M’s address book so she doesn’t need to comb through the contents.
When I get back home, I feel totally drained, don’t sleep, toss and turn and feel guilty about M and the run-in. Now I’m worried about how she’s feeling and whether she got back to the house okay and worked out where the keys were etc. I’m sure she will be okay as GN (f) and GN (m) have key safe combination if all goes belly-up. Away from M I feel like a lot of debris or bomb-like fall-out material in the form of emotions, have disrupted my equilibrium. This matter starts to slowly come down over about half a day until I’ve sorted M’s affairs again and have settled within myself.
I remembered how she’s always been. Once, when my first boyfriend died in an accident described as misadventure, she was unable to attend the funeral because she thought she would get upset. She seems to say she loves people, but what I feel is her spreading out her need for love which is totally different. I’m not sure in what way or ways this love has been expressed beyond clean clothes, clean bedding and provision of food. (M apparently likes food, but hates cooking or doing anything that makes a mess basically.) But everyone gets this don’t they? Prisoners get this. I did have some nice holidays as a child, but that was entirely down to my father who was a mad holidayer.
I know M doesn’t realise that all of my, and to a lesser extent, my partner’s actions for the last 7 months have revolve around M and at first Dad. I don’t want, neither does he, praise or backslapping. The most I hope for is, foolishly, the thing I always hoped for, that M would be pleasant, less challenging – for no good reason – paranoid, aggressive, rude, impatient, angry. I long ago stopped wishing that she would look at me with something approaching interest, recognition, kindness, trust, love, respect. She looks at me with hostility and always has, as if I am her enemy. I don’t believe this is paranoia on my part. You’d somehow expect more for an only child, something two of my partners did and have often drawn attention to. The coldness. Most of us manage a wide variety of emotions with varying degrees of success. M hasn’t ever thought about managing herself better. I suppose she isn’t introspective. Perhaps she doesn’t see why she should monitor herself – her schickt always works. But it doesn’t really, because what she wants, really wants, is disguised. Her true feelings have never surfaced. There’s been no discussion about why she’s so discontented . She’d almost not know what I meant if I asked her why. But it’s there in the little bits of information she does give out. How cold her father was which she mentions constantly . In the middle of the night of the night my father died, it was as if she had been immediately returned to who she had been before she’d even met my father. She instantly became a child crying about what a cold man her father had been and how different my father – M almost thinking of her husband as her father . Now she was washed back to the beginning as if all those years in which Dad gave her a life and protected her from the reality of it all and her own self just vanished. Is it because she feels so empty she can never get enough love? Now she seems to have shot into being much older than when Dad was alive even although it’s only seven months since he died.
Unless you get just the right pitch in your voice, M lashes out and attacks possibly because she feels out of control. But it’s wearing. Never in my entire life have I ever heard her apologise, or say she got something wrong.
Strange things. Ever since the key safe was fitted about ten days ago, M has had no trouble getting up. According to the care notes, each day, M has been dressed, bathed and breakfasted each time. M says she has no knowledge of all the fuss of that day. Somehow a part of her brain seems to have gone into combat. Perhaps not wanting the carers to use the key safe, so reducing her independence as well as being intrusive. M’s fighting back. Maybe. Another thing, in reference to all the trouble in me being able to contact her on the phone. A couple of days ago, when I rang her just after 5pm, she said: ‘I’m glad you phoned now, because i”m just letting my tea settle and then I’m going to go upstairs and have a bath.’ Had M remembered the conversation we’d had about not being able to get in touch by phone (to which she refused as usual to accept that anything could have happened her end. She said maybe the phone was off the hook, perhaps I’d phoned the wrong number etc. Never one to give in to the idea of other possibilities that might have something to do with her falling asleep, having all the doors shut, or just not hearing because she was dreaming) and decided to make a point of waiting for me to ring?
Six days later
Partner fits an extension to M’s phone in her bedroom. I travel with M to ultraviolet session. First have to rescue M from the day centre. They have accidentally collected her on the wrong day. They drop M off back at her house in time for transport to hospital. Fantastic day. Five years on from September 11, 2001. Same kind of weather. Landscape dappled and dazzling. After a confusing start, M settles. I chat to her and we are gentle with one another. M is in good spirits all day. At the hospital as we wait for the transport to take us back, M walks to a rubbish bin to throw away her empty water cup. There she reads from a noticeboard, returns to where I am sitting and tells me about a fashion show that was being held and how she would have liked to have gone if she lived nearer. The show took place a couple of days previously. M laughs when I tell her this. When she was standing looking at the noticeboard, I found myself looking at M’s legs. They looked so slight I wondered about the rest of her body. I wondered what Dad would think if he saw M now. How much has she changed since he died? At a certain point I think (on various occasions) M has gone to another place. A place I couldn’t imagine either of my parents ever visiting. I suppose it is old age. It’s hard to even say the words. In other societies, age can be prized. But this sort of life – narrow and provincial – that M has lived and does live, doesn’t seem to offer much in the way of compensation. The stuffing, the blast, the guts of her being that drove her and kept her going before Dad became ill (the stuffing when I look back had been getting thinner for some time) have collapsed and lies buried somewhere within her being. She died when Dad died, though she tries to keep on going. But then, I can look at her again and there are traces of another self another one who still wants to laugh, enjoy her food, the flowers, birds and sunshine. And then her face and body become infused with life again. Moments of joy. They never wanted much my parents. Never asked for anything. Was it the war? Did surviving that mean, as Raymond Carver said, everything else was gravy?