SAD

I've been putting off writing this blog, storing up all the tears inside. Going to put off writing it a bit longer, my contacts are too bleary.

THE FAMILY OF CATS

The question is: 'How to make Mum's stay here as long & as heavenly as possible?'

What is the best possible way that we could be?

As single primary carer I can say that the role is isolated, repetitive and demanding (as well as bonding, completely unpredictable and rewarding). So - the notion that it might be possible to start a little 'family'-type unit located here, each giving  the others as much support and unconditional love as they are capable of - it is a ray of light to me.

I had a dream I found someone suitable, someone whose nature has always delighted me, and whose current situation is, like mine, not indefinitely sustainable. Then I woke up and I could not cope any longer.
Josh x

TEARS, BUT NO COBWEBS

FRIDAY NOVEMBER 6TH

14:40 pm

The well of tears is still lurking somewhere in my near unconscious, and I don't have a single should to cry on.

Since my last report - when Mum was acccusing me of stealing and wouldn't let me into her room - I have only seen a happy, coping Mum. This has reassured me and helped me maintain a generally collected exterior for her benefit, and I have genuinely enjoyed the time we have spent together, getting her to help with putting my work into folders and watching TV.

But I am going to have to get up the same time as her every day (even if I go back to bed) - she can no longer get ready for the shops on her own, and when I don't Local-sister has to pick up the pieces. The incidence of this complete inability to cope in the mornings coincides with the beginning of the Mirtzapine anti-depressant, but any assumptions about whether this is exacerbating

Last night I did stay up 'til one, I'd just moved my shelves over from my sister's, and I was enjoying it feeling a bit more like home, though I am far too depressed to work.

The night before though I went to bed at 7pm and got up at 9am, then went back to bed once Mum was out at the shops. The night before that I went to bed at 7pm and got up at 11am. When I am depressed I 'hibernate', all I can think about is wanting to go back to bed.

The doctor prescribed me anti-depressants today but I have decided not to take them. I know plenty of drugs that work without getting hooked on some dodgy pharmaceutical company's next big thing . Doesn't even sound life they have interesting side effects like Mum's. Fuck them, I don't want them.

Goodnight (the time is 6.49pm)

RECRIMINATIONS AND HOW NOT TO RESPOND TO THEM

MONDAY 2ND NOVEMBER


[I'm having to put the date at the top, didn't realise draft posts would display the date of publication rather than the date I wrote them!]

Today was awful.

I'm used to Mum blaming me for things, even taking her money, but until today I'd managed to let it blow over and move on to something else. She doesn't remember doing it, and no-one else but us is here- so its perfectly rational for her to assume that I did it.

But today I let it spiral out of control.

I was drowsy, having just emerged from bed, Mum was getting ready to go shopping. All she really needed to was to get some more money from the little stash beside her bed (note to any burglars reading this: we have now abandoned this system).

But today wouldn't let me into her room at all, and was accusing me of stealing from her.

On the other hand she couldn't get the money alone. As soon as she went into the bedroom she would forget either where she was supposed to be looking, what she was looking for , or both. I don't know, she closed the door.

I tried to get her to have a cup of tea, hoping that she would calm down and forget all about it, but she was absolutely committed to shopping, and to not letting me into her room to look for the money.

In desperation I tried to lend her a twenty. To which she said:

"Thats mine, I recognise it".

"They all look the same, Mum. Nobody has taken them from you.Yout money is in the draw by the bed" [just a quick reminder for burglars - not genuine Robin Hood characters, if there are any left - but those who like stealing from poor defenceless old ladies: we no longer keep any money in the draw beside the bed, only used hankies!]

She still wouldn't let me into her bedroom (not usually a problem at all), or change her mind about going shopping, yet she was incapable of going into her room alone and finding the money. Her mind was too turbulent from the wave of irrational recriminations to perform this simple task, yet nothing would distract her from the desire to go shopping. I could not help myself, I burst into tears.

Eventually she agreed to bring the draw from the bedroom into my room, her money was there at the back, wrapped In used tissues and sealed with elastic bands.

Mum vistted Local-sister on the way there or back, and when she returned with the shopping she was very apologetic and loving, and the rest of the day was lovely, she helped me organise my writing and I felt a lot better, though there was still well of tears inside that I had to hide.

YOU ARE WET MOTHER, COME IN FROM THE RAIN

THURSDAY OCT 29TH


8:50pm

I could hear Mum tootling about in the kitchen first thing today. Normally I'd have gone and checked her list etc, but it was raining so hard outside I thought she wouldn't go out. Yet five minutes later I hear the door go & through a gap in my curtains I glimpse a child-like figure in a pillar-box red hood, never looking back.

It is hours before she returns, drenched to the bone. I meet her at the door,

"You are wet, Mother, come in from the rain". I help her off with her saturated clothes, holding back a laugh, as I have accidentally just quoted from 'motherfather', a poem I wrote when I was sixteen and recorded for an album last year.

I was away playing music in London on Thursday night - I got a rapturous welcome home from Mum, who thought I had been away for days (I had only spent one night away).

Local-sister told me on the phone, earlier today, that Mum had started (or nearly started) a fire in my absence. It was while her friend was visiting, before I got back on Friday. The same sort of thing cropped up last time I was away.

When she can't remember how to do something she has learned that turning to me is a better bet than searching about for it in her head. I can't be here all the time, can I? We are getting closer to the point when she won't be able to be left alone at all.

Apparently it is not uncommon for Alzheimer's sufferers to start 'dogging' their primary carers - following them closely around everywhere, even the toilet, like a lost puppy. This was one sentence I was glad to hear the end of - I had just been told that it was not uncommon for dementia sufferers to wander out into the street at ungodly hours, in their night-clothes, or even undressed, and that this was often a trigger for having them taken into care. This hasn't happened since I've been here, but doesn't seem at all outside the bounds of imminent possibility, now that she forgets how to let herself in with such alarming frequency. Anyway, it seemed a sufficiently stressful and punishing prospect to discover her missing and locate her, before consoling, distracting and cajoling her back home. With the delivery of the sentences qualifying definition I realised that I was to be spared the added indignity of extricating my own mother from illicit sexual encounters in car-parks, though the speaker was not quick enough to entirely spare me a moment inhabiting this bizarre alternate, impossible future. Of course, this could never happen - I would let her finish what she had started! I am not a spoilsport,  nor a prude. Indeed, I wish this was a possible parallel universe into which I could sidestep - the world of sensory pleasures is largely immediate, Mum still revels in the beauty of nature, perhaps all the more so for the lack of a past and future to distract her - it is, after all, my contention that words & reason obfuscate the closest possible connection with noumenal reality. Additionally, despite her failing sense of taste and smell, she is displaying signs of a progressive enjoyment of food and eating - it has been a while since I heard her say that eating is a waste of time and that she doesn't see the point in it, an assertion she made frequently throughout her adult life. It was almost her mantra, a discrete public statement and affirmation of her commitment to service, hard work and sacrifice, over and above sensual pleasure and individual gratification, ends which she viewed with distaste and disdain.

It is good that she is able to enjoy her food more, but I very much doubt we will see any sexual behaviour considered inappropriate, or at all, as Mum has never really been into sex, finding it a bit repulsive, even in nature programmes.

A DOSE OF THE ARTS

At the end of the day we just sat there and said:

"Well, that was a wonderful, wonderful day"

"Yes, wasn't it?"

We didn't need anything, but Mum wanted to go shopping nonetheless, and while we had all the staples I wasn't excited about lunch,  so I made a special event of getting pizza. Todays list was: PIZZA. Mum came back with two pizzas and we had American-style for lunch and Italian for dinner, and we both agreed they were great, we had half each, her appetite has gone through the roof.

Mum very much likes the man from Crossroads, who organise home-visits. He comes for four hours every week, much longer than Mum often wants to spend with one person.

When he arrived today me and Mum were having a Jam, she was playing the black-notes on the piano, and I had tuned the guitar life this:

D# - A# - D# - D#  - A# - D#

This is useful, because anything you play will be in tune, provided the keyboard player only plays the back keys, the guitar player can play just open strings, but to get something more melodic they can fret any of the strings on the 3rd and 5th frets. This is a minor pentatonic scale in D#, so it useful to know that D# is the root note. This was an idea I had when I was working in education with adults with learning difficulties, I'm sure loads of people use this and similar techniques. If I've lost you you can just skip the next few paragraphs as its a bit of technical manual for making playing tonal music as easy and accessible as possible.

In the following, anything the musicians do will be in tune - provided the keyboard player only uses the white keys and the guitar player plays only open strings (for a drone) and frets only the 2nd, 3rd or 5th frets on any string  (to introduce more melody).

D - A - D - D - A - D

I tend to think of that one as being in Am, but the proponderence of 4th notes, Ds, on the guitar means it is gives it a very different sound to a tuning of

A - D  - A - A - D - A,

a less typical tuning, but makes for a more ordinary Am key.

If you want play in a major key tune the guitar

C - G - C - C -G - C,
 the keyboard player uses only the white notes, and the guitar player can play open strings or fret any of the strings on the 3rd or 5th frets, the sixth too.  

Before I move on I'll just mention that the best way to introduce this to an inexperienced or an individual with mental or motor impairments to start with the guitar player experimenting without fretting any of the strings - they can strum them, picks them, drum on them, drop a bouncing ball on them, everything will be in tune. The majority of the expression in guitar playing comes from how the strings are struck.

He said he played some guitar, but would prefer to do some drawing. I recently bought a lightbox (a box with four bulbs underneath, which enables you to trace an image using ordinary paper). I'm sure I will use it myself, but I really bought it for Mum, as she wasn't enjoying unguided art as much as she used to - there is so much to think about - whereas she is very proud of her duck montages in the kitchen, she often shows them to visitors. She got me to admire them many times myself early on, they are an ingenious blend of watercolour and bits of duck wallpaper.

These are the images they traced using the lightbox, Mum is going to add colour to hers (the teddy bears).

I meant to have a rest while they were out shopping. I was hung over, and barely slept two nights ago, partly because I mucked up the central heating and didn't realise 'til too late, & partly because the neighbours have got their washing machine on the other side of the wall from me. They wash their clothes at night, apparently because the electricity is cheaper then. I offered to pay them the money and they looked at me as if I was mad. Is sleep not valuable? The kind lady upstairs asked us not to use our washing machine at night, I thought it a perfectly reasonable request, even if she is A BIT DEAF.

As I am about to slightly digress at this point, I would like to make it clear that Alzheimer's is, in essence, a progressive learning difficulty, namely 'unlearning EVERTHING made easy'. I spent hundreds of hours working with people with people with a broad range of abilites, including one or two who with dementia in one form or another. I took the brunt of the responsibility for their training in the inner-city open access IT Training centre I used to work in, at a further education college in South London, because I'm patient and analytical - I don't get frustrated when someone can't get it, I'm interested to get inside their mind and see if there is a way they can get it. And if there isn't one I am interested in how to make their experience in the centre as enjoyable, life-enhancing and confidence building as possible.

At the time my ex-partner, Sarah, was tutoring Performance Arts at Lewisham College, and co-tutoring a music class at Morley College, also for adults with leaning difficulties. I became involved in helping her develop the course content, and came in at the end of her courses to organise an end-of-term DVD, so that all the student's could take away a nicely produced record of what they had developed in class.

Art IS great therapy, everyone should do it. There were arguments blowing around about how worthwhile mine and Sarah's endeavours really were. The IT drop-in centre was largely funded and rated on turnover and results, so the students I championed were an economic burden on the centre, though they did demonstrate inclusivity to the inspectors. We really didn't have appropriate courseware for the most severely affected students.

Whether Sarah's more severely disabled students could absorb much information wasn't the point, the courses were vocationally oriented, and the students not only enjoyed her courses but they developed their confidence, self-esteem and social skills. Sarah's favourite success story from these times was teaching a deaf girl to sing, mine was a girl who had said she had always thought she was stupid and would never be able to learn any maths before she met me.

I had been planning on using some of these skills with Mum, but she seems more open to suggestions at the moment, she seems to be significantly more social, and less satisfied with doing the same things all the time, she is expressing a far greater desire for variety, this could well be related to the anti-depressant. And, as I spend most of my own time in creative pursuits, it is amazing luck that the weekly visitor from Crossroads enjoys art and is far better at drawing than I am.

After he left Mum began finding useless things about the house and throwing them away, which was a gratifying sight, as they were the very same useless things she had picked out of bins days before, utterly enchanted with them.

Unfortunately it is clearly hard to separate the positive effect of these artistic pursuits from the Mirtazapine anti-depressant.

I didn't get time to do an entry yesterday. She had a nice time at the shops with a friend who visits, but was soon restless and hankering for something different to do. She came up with the idea of visiting some local friends herself. Its very rare for her to come up with ideas outside of her usual routine, so this was also gratifying - unfortunately the friends weren't in, but she went for along walk anyway. Again it is hard to tell whether the extreme restlessness and unusual strong desire for novel experiences were due to her being unable to garden or the Mirtazapine, I suspect it was a combination of the two.

Mum was over the moon when a bird-house hot water bottle arrived in the post for her today (she has four or five bird-houses/feeders, bats etc, and is a big fan of hot water bottles). Shes not using it now though, she said it was more for daytime use as it was a little small - so I might go and fill it up and christen it myself.

Goodnight, wasn't it a wonderful day?

Why? What happened?

I forget

what baffled me


ADD END UM

"Christina the Astonishing", Wikipedia (not always 100% reliable, but truly democratising the organisation of the sum total of our assembled knowledge)

Born a peasant, Christina was orphaned at 15. When she was 21 (22 according to some sources), she is said to have suffered a massive seizure. According to the story, her condition was so severe that witnesses assumed she had died. A funeral was held, but during the service, she "arose full of vigor, stupefying with amazement the whole city of St. Trond, which had witnessed this wonder." Then, "The astonishment increased when they learned from her own mouth what had happened to her after her death."

She related that she had witnessed heaven, hell, and purgatory. It is written that she said "As soon as my soul was separated from my body and was received by angels who conducted it to a very gloomy place, entirely filled with souls" where the torments there that they endured "appeared so excessive" that it was "impossible to give an idea of their rigor."

She continued,"I saw among them many of my acquaintances" and touched deeply by their sad condition asked if this was Hell, but was told that it was Purgatory. Her angel guides brought her to Hell where again she recognized those she had formerly known. Next she was transported to Heaven, "even to the Throne of Divine Majesty" where she was "regarded with a favorable eye" and she experienced extreme joy and these words were spoken to her, " Assuredly, My dear daughter, you will one day be with Me. Now, however, I allow you to choose, either to remain with Me henceforth from this time, or to return again to earth to accomplish a mission of charity and suffering. In order to deliver from the flames of Purgatory those souls which have inspired you with so much compassion, you shall suffer for them upon earth: you shall endure great torments, without however dying from their effects. And not only will you relieve the departed, but the example which you will give to the living, and your continual suffering, will lead sinners to be converted and to expiate their crimes. After having ended this new life, you shall return here laden with merits."

What a noble, inspiring tale of a Bodhisattva! By appending this tale I have defintely diverged too far from my non-existent brief. I know this, but nobody reads this do they?

Haha

THIRTY EGGS

8am
Mum was particularly disoriented this morning, for the second day in a row. She didn't have a clue about what she needed to go shopping. Could just be a low crest on the bumpy road to nowhere, but paired with the additional engagement she is displaying later in the day - it seems likely that the Mirtazapine anti-depressants might be responsible for these higher highs and lower lows.

"No, we don't need eggs, we have 1.. 2.. 3..  thirty eggs. We don't need tea. Bread, get some bread, the bread bin's nearly empty"

Once she's gone I realise that Mum has just moved the bread somewhere else. I wonder what she'll come back with?

10.20am
My Mother came back from the supermarket with... Local-sister. There must have had an orange sticker on her forehead. She's washing Mum's hair in the shower.

The missing money reappeared this morning. I guess The Gremlin had a pang of conscience.

4.10pm
Mum is eating more today. For lunch she had a whole can of vegetable soup and two slices of toast.