Thursday 21st January - Family Life

This has been a tough week for my mother. I haven't posted about it before, as I wanted to take time to see how things would turn out.

When my husband and I visited on Sunday morning, she started having very painful cramps in her legs - continuously writhing round her calves and ankles and thighs and feet in a random fashion. She had had cramps when she had her stroke back in 2012, but back then, a very short time spent massaging the place would dispel them. This time was different; there was nothing to be done. The nurses tried everything; repositioning her in the bed, massage, and even morphine, but nothing seemed to give full relief. These cramps and pains continued, on and off, although steadily easing, for several days.

On Tuesday the physiotherapist came, and massaged my mother's legs which improved some blue blotchy patches which had appeared. These were thought to perhaps be indications of a circulation problem.

She has been very drowsy all week, and unable to swallow the various pills and potions that she is still receiving, including the antibiotic, for a chest infection that started last week.

This morning, my father said that she eventually woke up enough to read a bit of the newspaper, and to slowly drink some hot chocolate, but did not speak. She later fell asleep again.

This evening, the doctor phoned to say that my mother's condition has deteriorated considerably. She is definitely unable to speak, although appears to understand what is said, and, as far as they can tell, is not in pain. They are not sure what has happened yet, but it may be another stroke.

We shall just have to see how things go from here. I am visiting tomorrow, and will post again afterwards.

Friday 7th November - Watching the evening skies

It was two years and a week ago that my mother had a major stroke.

She was in a hospital about twenty miles away, and we used to visit her most evenings after work.
I'd finish teaching at about 7pm and we'd leap in the car and fight our way through endless roadworks and rush hour traffic to spend an hour with her.

My husband would drive, and I would watch the skies a deep blue-black, watch the moon appearing through torn gaps in the clouds, watch the india-ink lines of the bare branches of the tree.

Coming home, enduring the same road works, we might talk, or we might just travel in silence, wrapped in our own thoughts.

There would be time to eat a hasty supper, and then fall into bed, exhausted, by about 10 pm.

I'd sort of forgotten about those days, until today, driving home through the dusk, watching the sky change through paler and darker shades of blue, the clouds from shade from grey to pink to purple to black...

It was a kind of mercy, that those darkest days were at the darkest time of the year, and that improvements in my mother's state were heralded by the approach of Spring.

Apparently today, 7th November, was considered to be the first day of Winter in medieval times, ending on 7th February, so that 21st December was truly Midwinter.

Bank Holiday Monday 26th May - It's Raining

We woke up to rain. I didn't mind - as we managed to sleep until about 7am. Better than yesterday, when a noisy magpie started rattling at 4am and kept going for a whole hour.

This morning, we visited my mother (she's staying in a local care home for a week while my father is having a respite holiday). She is able to go down to the Day Care suite every day, where she goes anyway every Monday and Thursday. We turned up just as her reading glasses broke - how's that for timing - so BB went off to buy a new sparkly pair from the pound shop, which is where the broken sparkly pair came from. Today's errand was to bring cranberry juice and a particular grey cardigan which we managed without error. (Tomorrow's list is ready and waiting to go!)

Anyway, we stayed for an hour or so, having a cup of coffee, chatting, doing this and that, and then came home. They are a cheerful, friendly bunch of people, staff and visitors alike.

We went home for lunch (home-made soup followed by toast and marmalade in case you are interested - skip that last sentence if you weren't, oh, sorry, too late, you've read it now, and then thought "now what?" It's still raining, so gardening isn't going to happen today.

We decided to attack the tidying. He's going through paperwork from the time of dinosaurs, discovering Barclaycard statements from 1987, the children's Christening cards, the bill for when we had the fireplace re-done in 1989, and other useful/useless stuff. (Some of it is useful, and we're glad to have found it again!)

I was going through a heap of stuff on my side of the bedroom. There were a couple of disintegrating plastic boxes of old sewing notions that I know I haven't looked at for years like rusting needles and rotten cotton, and let me tell you that Tupperware doesn't last for ever. I just about managed to chuck nearly all of it.

With all this kerfuffle going on in the bedrooms, the upstairs cat could find no peace any where.

She watched the rain for a while, and then put herself to bed.

Which is not exactly helpful as I have just brought down a load of washing to put in the machine. It will have to wait, as I haven't the heart to disturb her again.

Sunday 13th April - The Electric Wheelchair Adventure

"This style of chair is typically compact, will have a small turning circle and is designed primarily to be used either indoors or in shopping centres/places with smooth ground. They are not very suitable for general outdoor use as they will have low ground clearance." http://www.electricwheelchairs.co.uk/electric-wheelchairs-guide/

This is the kind of electric wheelchair that my mother uses in the flat. I was a bit disconcerted to see that this model is "on offer" for £2899, instead of the usual £2999. In other words, the same price as a nearly-decent second-hand car.


This Sunday, our assistance was requested to enable my father to take my mother on a trip round the local nature reserve in this chair... I suggested that before we load my mother up and embark upon this adventure, we load my father up and "test drive" the whole scenario.

So the men left my mother comfortably in bed for the afternoon, with the Sunday papers to hand, and, step by step, checked out the logistical details. From time to time I was called upon to act as my mother's "stunt double".

Here's what I observed....

1. Driving the electric wheelchair over the threshold into the lobby of the flat was harder than easing the "push-chair" over the ledge; you can't gently control the motion of the chair, but need to take a bit of a run at it, so the occupant has to be prepared for a considerable jolt and jiggle as the front and back wheels cram themselves over the barrier. Hmmm. My mother doesn't have a great deal of strength in her neck muscles, so her head would have been shaken about, and her left arm and leg are currently quite painful. Food for thought.

2. Having got the e-wheelchair out of their flat, it won't climb the higher ledge to get back in again! And it is too heavy for my father to lift it over the ledge when I am sitting in it!  Well, that could have been Very Awkward indeed! We will need to made a ramp to get back into the flat. Actually, in order to save my mother from a painful jolting, we need to make a ramp to get out of the flat as well.

3. We can get the electric wheelchair into the minuscule lift with someone (me) in it. I was under instructions NOT to move any of my left side. That is a lot harder than it sounds as several times I wanted to move my left foot out of the way rather than have it half-trodden on while my father manoeuvred around to get me into the lift, and then wedge himself in as well to operate the lift buttons. (My mother's left foot is very sensitive and easily hurt by being pushed, shoved, or, worst of all, trodden on).

4. We needed to use the pair of heavy-duty metal ramps to get the e-wheelchair out of the building as there is a big step down. All went well for a minute or so, and then I stopped moving. What had happened? The motors for the drive wheels had ridden up on the safety lips of the ramps, so the wheels were spinning in mid-air... The problem was easily solved - I got out of the chair, and we re-aligned the ramps. Sorted.

5. We tested getting the e-wheelchair and me in and out of the car - no serious problems. The anti-tip bars at the back came into play as I was being reversed back down the ramp, but there was enough  momentum to complete the disembarkation without upset (in every meaning of the word!)

6. Finally, the men went on a little excursion round the nearby pond, with my father driving and my husband in attendance as the escort outrider, or maybe outwalker. They appeared about three-quarters of an hour later, triumphant but whacked out, (having carried the empty wheelchair back over the threshold into the flat.)

The whole exercise was very useful, and, on the whole, a success, which is why I have set it down in full for our future reference.
Here are some of my own further thoughts, from playing the part of the stunt double:

If ever you are in the position of looking after someone in a wheelchair, pushing them around a park or whatever, I think it is an excellent plan if you can make an opportunity to physically put yourself in their place for real, and be pushed around by someone first.

I was completely taken aback at how much the jolting over thresholds and ends of ramps, and even the almost invisible lumps and bumps in the pathways affected my balance in the chair. If I had been suffering from painful joints, I would have been SUFFERING by the time I have been loaded up into the car, and I guess being driven around would not have felt any more comfortable. Also, I have reasonable muscle tone and strength to support and control my upper body, but my mother does not.

I was also not prepared for the level of anxiety and insecurity I felt, especially going up and down slopes. Even though I had confidence that my father wouldn't actually tip me over or run the wheelchair over the edge of the ramp, I still felt tense and "on red alert" while these operations were in progress.

Finally, driving the e-wheelchair isn't like a fairground game. I found that I had to concentrate to keep myself straight, pick a smooth path, watch out for obstacles. It reminded me of when I first learned to drive and all I ever took any notice of was the immediate view through the steering wheel. So, an outing "in the country" wouldn't actually involve taking in any of the scenery at all, except when parked up in some pleasant spot. Travelling along the paths would be more like a jolting yomp through hostile territory.

All in all, being the passenger in a wheelchair isn't the passive, relaxing experience that I had anticipated.

This is not to say that The Plan is a Bad Idea in principle. I think it has distinct possibilities. We just need to work out how to maximise all the positive elements, namely

getting out, seeing flowers and birds and people, change of scene, fresh air, something new to talk about, easy, spacious, smooth environment for driving the chair in

while reducing the negative elements
exhausting messing about manoeuvring the e-wheelchair out of the flat, down the lift, down the ramps, into the car, and the tiring mental and physical effort of steering the e-wheelchair over narrow, lumpy-bumpy jolting paths.
    
Now to plan Phase Two. I have my eye on the sensory garden in the local park with disabled parking spaces beside the entrance, broad, flat, smooth paths, flowers, people to watch, convenient café...

Saturday 18th January - Stroke Recovery continues

A couple of days ago I received an email from my father about another remarkable stage in my mother's recovery.

She can now raise herself from seated in the wheelchair to standing, and lower herself back down again, without any assistance. Today she remained in her standing frame (a wooden contraption with a couple of support straps) for half an hour - that's a reasonable length of time for anyone to stand still in one place - you try it sometime!

She can now transfer from bed to wheelchair by shuffling across much more securely, with less assistance and support, given by one trained carer, or my father. The hope is that the hoist will soon be surplus to requirements.

They are now talking about fixing a "grab handle" to the bedroom wall, so that she will be able to hold on to it for support while transferring from one wheelchair to another etc.

The stroke happened 15 months ago. There is little more that can be done medically; my mother has a problem with clearing her chest, as her muscles are weakened by the stroke and she cannot cough effectively. However the physiotherapy is proving to be worth every penny. Not only is her strength and mobility improving, all the exercise and standing (she practises in the standing frame nearly every day) is having a beneficial effect on her digestion and her chest.

We only have to look back at how things were when she came out of hospital 11 months ago to see just how much better things are these days.  

Wednesday December 4th - Be Upstanding

Called round at the parents this morning. After coffee, my mother had another go in the standing frame.

She is so much stronger; able to pull herself up from sitting in the wheelchair to standing by herself, and looking much more relaxed. Her balance is better, and she is less reliant on the support straps.

After the best part of fifteen minutes standing she was able to lower herself back to sitting by herself as well.

She can now move her left leg and foot.

Being able to walk any distance is off the edge of the horizon, but progressing to being able to stand and take a step or two is not an unrealistic hope for the future.

That's a double negative, I know, but this is not the place or a time for wild optimism. More a place for carefully qualified, and measured, realism. That way I can be continually surprised and full of rejoicing when she exceeds expectations.

It's like learning a new piece - especially for adult pupils. They always disappoint themselves and berate themselves for slow progress, instead of being cheered and encouraged by what they have achieved. When I'm learning a new pieces, I take the view that just managing to play a small phrase correctly is worth celebrating and gloating over, and worth doing over and over again, congratulating myself each time I get it right, rewarding myself with a cup of coffee or even a gold star! It may seem silly and infantile, but remember, "success breed success". Being able to do something that you have been working towards is worth crowing over, and doing over and over again to enjoy that feeling of achievement.

Saturday 23rd November - Busy Day

Today's busy-ness started with the timely delivery of some techy stuff for our PC. I've got a vague understanding of the outlying basic broad principles of what was delivered and what it is for but I have no intention of trying to explain it to you.

Anyway, the point is that the parcel arrived in time for him to set it in motion before we went to visit my parents for morning coffee and strategic planning.

We did so much planning that coffee fell right off the agenda, what with the wide-ranging conversations, and a little interlude of taking the advantage of extra people being around for my mother to get some time in the standing frame that they have acquired;

who would have thought that we would ever have reached this point...

This time last year we were rejoicing that we had managed to spoon some rhubarb yoghurt into my mother without her choking on it. Back then, all she could do was lie, helpless, on the bed, and call for two nurses if she wanted to change her position from sitting to lying.

Afterwards, BestBeloved and I went and found some lunch, and bought some small Christmas presents, and bought some bits and pieces for my parents, and took them round to the flat, and came home, and unloaded the car, and BB prodded the computer which is still doing its important thingy with the new thingies, and had A Proper Cup of Tea (as in the earlier post).

Supper will be sandwiches (and probably more cake) and then it will be bedtime. I shall put my knitted earphones on, and fall asleep to the dulcet sound of Cantabile - The London Quartet - singing Lullabyes and Goodbyes; my current favourite track is Hushabye Mountain (from Chitty Chitty Bang Bang).

I wanted to put a link to the Amazon sample track but they have changed their website and I can't find how to get at the samples any more. Sorry.

  

Friday 22nd November - 5 stages of change

Oh HeAVENS tO bETtSY. iT IS SO infuriating when I go to the trouble of writing a post and then don't click on PUBLISH. And what's up with capslock? Oh ok I see. Fixed. false Alarm (Saturday 23rd November)  

An unexpectedly serious post today ...



And one of the bloggers I follow added "and whisky" to this cartoon!

If you have anything to do with Change Management in your working life, then you will be familiar with the following summary of the 5 phases that people faced with CHANGE go through;

1. Shock (Denial)

2. Emotion (Anger)

3. Bargaining (If I do this then I achieve that - a kind of personal horse-trading)

4. Grief at loss (It isn't fair)

5. Acceptance (in two parts; Intellectual AND Emotional)

By Change, I don't mean change that you have chosen - like an exciting job opportunity abroad, or new career direction, or having a baby. I mean Change that is forced upon you, without your consent, maybe even without any kind of warning.

These stages can be written in different ways, but that's what they basically boil down to. By change, I mean anything from a change in working practices (I've been through that), to being made redundant (I've been through that too) or the effects of serious illness (I face up to this every day).

And I can honestly say that the above 5 stages broadly represent what everyone facing Change has to deal with. All our family - the Offsprings, and Best Beloved - have had personal experience of Change, ranging from minor to catastrophic. Best Beloved's work over the past twenty years has been, in one way and another, one of Managing Change, and leading all kinds of people, some Very Senior, and some Very Junior, through these stages.  

I think that people these days have a greater understanding of the issues surrounding "life-changing events" than maybe was possible in the old traditional "stiff upper lip" era. These days, one can express one's feelings without being told to "Pull yourself together" and "Exercise Self-Control". The advantage is that one can progress through these stages with  more awareness of what is happening to yourself.

Most people get caught in one or other of these stages for a period of months, even years. Some people manage to recognise what is going on, and move through more quickly - it's still a struggle. There is no panacea, no magic pill, to get you through the process of accepting the consequences, emotional and intellectual, of The Change.

Arriving at "Acceptance" isn't the same as "giving up", or "giving in". It means arriving at the stage where you are able to work with what you have, rather than constantly fighting to restore the un-restorable.



http://en.wikipedia.org/wiki/Wine



Living and moving and working through Change is exhausting. It isn't a fun or nice or welcome experience. It is debilitating. It isn't easy. But it is a consequence of being alive, of being human, of having feelings.

The past year, living through the aftershocks of my mother's stroke have been like a copy-book exercise in Change Management for every member of the family.

Meanwhile, could you just pour me another glass of wine? (I don't care for whisky).

Saturday 16th November - The full moon through the trees

This evening, as the light faded and day became night, I watched the huge, pale moon, lightly veiled in wisps of clouds, bobbing and weaving between the bare branches of the trees.

We were in the car, driving home. Depending on the lie of the road, the moon sometimes appeared high above the trees, shining through the inky sky, sometimes low, barely above the hedgerow. Sometimes to the left, sometimes dead ahead.

It brought back sharp memories of this time last year. Most evenings, at about 7pm, as soon as I had finished teaching, we would leap into the car and rush the twenty miles to the hospital in order to snatch an hour with my mother. Then we would return to a ridiculously late meal, usually around 9pm, before falling into bed, to sleep before the alarm went at 6 am the next day. This was our routine until she was able to go back home in February this year.

A year ago, my mother wasn't able to eat or drink normally. All fluids and food had to be thickened to a kind of paste and fed to her using a spoon. She was very confused, in a lot of pain, confined to bed, unable to even sit up, and pretty much completely helpless.

What a contrast, between then and now. Today we spent a pleasant morning in the brisk Autumn sunshine pushing my mother around the town, looking at the market stalls and searching for a winter hat (we found a lovely soft cowl which does double duty as hat and scarf). Then we went to a local restaurant for lunch, before going back to the residential home where my mother is staying for a week's respite.


The same moon, the same inky-blue sky, the same bare-branched trees. A new year.

Friday 15th November - Made it to the end of another week.

My eyes are closing themselves, and it is only 8 pm. It's another of those evenings where Best Beloved and I are toughing it out until we can reasonably fall upstairs at about 9pm.
Hey! None of that "wink, wink, nudge, nudge" stuff; we will both be snoring like - can't think what we will be snoring like - snoring like whatever it is we will be snoring like - by ten minutes after lights out.

My mother has been staying at a local residential home this week, Sunday-to-Sunday, so that my father can have "respite" and time to sort out whatever got shoved into the rented garage and the Lock'n'Store when they moved at the beginning of October 2012, a couple of weeks before The Stroke changed all our lives. Boxes and boxes of family history papers are going to someone who wants them, and a Windsor chair suddenly appeared in our hallway one day (I did know it was coming - just hadn't worked out where we would put it).

It's not exactly "respite" for anyone, in one sense; my father may well be freed from the day-to-day confines of looking after my mother at home, but he has visited her several times, and been acutely concerned for her welfare the rest of the time. He's also been hard at work sorting out the stuff in said garage and said Storage Facility. Some of her friends have been to visit, and I've been round to visit  on Sunday evening and Monday and Tuesday mornings and Thursday afternoon and Friday morning and will be going tomorrow on Saturday. Between us we've been keeping track of her laundry, collecting, washing, draping over radiators and in airing cupboards in order to get it returned to her promptly. My brother has been down for two nights to help with going through all the boxes and working out what to do with them.

Of course, for my mother, it's not a respite at all; it's coping with different staff, some lovely, some not, and a different regime (main meal at lunchtime, light snack at tea-time), and institution food (adequate, but not the same as home cooking) and generally not being where she wants to be. The main bright positives have been that this time she's had the electric wheelchair with her, giving her a little mobility, and also been able to go to the day care unit, where she goes twice a week normally, every day, rather than getting through the days upstairs among strangers or in her room.

It takes effort, and determination, on everyone's part to make this "respite care" work - none more brave than my mother. So I have drunk a glass - or two - to all of us tonight. Which is probably why my eyes are closing and it's (I'll just check the clock again) now only quarter past eight. Goodnight all!

Tuesday 24th September - Update on my mother

Another post all about family stuff, so skip this one if you are not interested. I won't mind. You have already appeared on my statistics anyway!

So, the indoor electric wheelchair is proving a great success. My mother rolls silently along the carpets, catching us by surprise. With characteristic determination she has got the hang of the tricksy manoeuvres to make the turns into her bedroom, or the kitchen, from the narrow main corridor in the flat. More to the point, she has got yet more control over her life, being able to move from place to place, to turn herself round from her work table to face guests, or watch the television at will.

More and more domestic tasks become possible; my parents can clean the silver together, and prepare food, and cook.

Socially, they are going from strength to strength. They have organised a couple of bridge afternoons at home, playing bridge again, using a card holder. I guess it will be slow work to begin with, getting the knack of using the card holder and playing the cards, and rediscovering the  skills of playing bridge. But how nice to entertain at home, and have friends round, and good china, and posh biscuits and cakes on plates!

My mother goes to a day care centre twice a week, which provides a change of scene, and also an opportunity for my father to do things by himself, whether it is the mundane round of shopping and housework, or just having time and space to think or do whatever he likes.

The bus into town is proving increasingly possible. After the first tentative forays, they have been in several times to shop in the supermarket, or have lunch in one of the many accessible restaurants and other eating places. I think they have also been to the Saturday morning market; if not, I'm sure that this is an outing that will happen sooner or later. It was a great favourite of hers. There is also the "Swift" taxi service, which has proved a godsend for getting about locally.

Physically, there are also steady improvements. She can put the heel of her left foot flat on the floor, and bend her knee to order. The thing now is to build up the muscles in her legs, through standing in a support frame of one kind or another for increasing lengths of time. She is desperate to get some movement and sensation in her left hand - but this is something that only time will tell if it is a possibility.

There are more and more occasions when they both sleep through the night. In fact, (although I may be wrong) they both a get a good night more often than not. What a change from needing help several times a night, every night!  

It is wonderful to see how much more independent they are together, getting out and about, and picking up the threads of their old social round, and just generally expanding their horizons.

taken on a "wheelchair walk" in the Sunmer

I know it is not all plain sailing, and there many frustrations and disappointments and difficulties to be tackled along the way, but even so, when I look back at when my mother came home last February, just seven months ago, and how things are now, I am totally amazed at the change.

I used to use the hashtag #hopespringseternal... it is far to soon to give up on anything.

Sunday 18th August - Standing up, and sitting down

This is an update about my mother. Just saying, so you can skip this post if you like.

I watched my mother's physiotherapy session last week. I'd post pictures of it, except that I like to respect their privacy.



this is the type of hoist used to raise
someone from sitting to standing.
It is currently in the "standing" position

During the session, I watched as she managed to control her back and legs while the hoist assisted her into a standing position, without the aid of the belt around her back which usually does the lifting work for her. Once she had got her balance, she was able to let go of the handle and stand without any support other than the pads which brace her lower legs and knees. This is a major advance.


After practising standing (who would have thought that the simple act of standing and balancing is such hard work, and needs so much concentration!) she was able to control her body as she lowered herself back to sitting on the edge of the bed.



She's also been given an indoor electric wheelchair. This has taken a while to get the hang of. To begin with, my mother was inclined to misjudge the left-hand-edge of every door or piece of furniture that was in her path. If it had been just left to the normal process of bringing the chair, giving her an hour of instruction and then testing to see if she was safe, they would never have been given the chair. However, circumstances were in favour of managing to be allowed to have the chair for two week's practise (the wheelchair technician was going on holiday, and was persuaded to leave the chair with them for the duration!) and so in the end my mother passed with flying colours.

This means that she now suddenly appears behind us when we are standing around. The wheelchair is almost noiseless on the thick carpet, so the only warning of her arrival is the faint click of the little lever that you use to drive the contraption. 



The final bit of news is that her bed (and all the associated paraphernalia) has been moved out of the dining-room end of the living room back into her own bedroom. When she first came home, she used to spend more time in bed than in the wheelchair, as she was really not strong enough to sit for more than a couple of hours at a time. So it made much more sense to put her bed in the living area, so that she was always included in daily goings on. Now, she still has an afternoon nap from time to time, but not every day. Reclaiming the dining room, and having a proper dining table again is another real milestone.

This is all immensely encouraging; after nine-and a half months progress is still happening, and we know that people continue to improve their rehab for several years after the date of the stroke.

Friday 19th July - Into the Light again

I've just about reached the end of the school year. Term ends next Wednesday, and the Summer holidays begin.

(This is a "stroke" post!)

I'm beginning to realise that much of the school year appears to have been in darkness.

It reminds me of the time when I was in labour for my first child; I remember the time - about 24 hours from start to finish - as all taking place in the dark, even though he was born at 3 in the afternoon. That's because I was given sleeping tablets when we went into hospital in the evening, and pain-relief drugs that made me very drowsy throughout the labour, so to me it felt like a long, drawn-out (and painful!) night. 

This time, the predominant memory for the whole of Autumn, Winter, and much of Spring, is of driving in the dark after work to the various hospitals where my mother was recovering from the stroke which happened on 30th October. I sat in the car, watching the moon appear and disappear through the clouds, watching the bare branches of the trees claw through the sky, watching the inky blue night darken to black, as we fought the clogged traffic up and down the A23, up and down the A23, up and down the A23.

My mother came home in February - a triumph, and a challenge. Life wasn't easier just because she was only half a mile away. As she fought her way through the fog of the effects of the stroke, we too, all struggled to work within the demands placed upon each one of us.

How do you get the shopping done? How do you stay on top of the laundry? How to you keep in control of the mass of paperwork we all have to deal with? What about dentists, and doctors, and hospital appointments? When do you deal with the most basic requirement of household tasks like cleaning the bathroom? What about home maintenance? It took months to sort out light fittings, or even putting up coat hooks, as weeks would go by while we mini-stepped our way towards completing the simplest of jobs within the constraints of available a time and what needed to be done.

And this list of questions isn't just about my parents trying to cope with their lives. The same problems taxed my family, shoe-horning our own shopping, cleaning, gardening (no, scrub that last - it just hasn't happened this year!) work, admin, family time. And my brother's family too; he travelled the six-hour round trip from his home to here time and time again - weekly at first, fortnightly, as often as he could.

Now, in July, in this Summer heatwave, I feel as though it is day again.  

At my parents, things have improved in a big way. They have made several trips into town using the local bus - Freedom! They have used the extremely efficient and reasonably priced wheelchair-friendly taxi on many occasions. They are beginning to invite friends round - for my mother's birthday party, for a coffee morning - rebuilding relationships which were abruptly put on hold while everything, and everyone, was so fragile through the long dark times.

And here - well, I have friends that I haven't seen since last Summer. Holidays and half terms are times when I usually try and meet up with old friends, but that just hasn't happened - not at Christmas, not in the February half term, not at Easter, not in the May half term... no time. Too much to do. In prioritising where I needed to be, what needed top be done, this had to come a long way down the list.

So, in the next few weeks I shall try and rebuild these relationships, contact all these people, catch up on their news...

It's half past nine in the morning, and I shall start now.

Friday June 28th - or it will be when tomorrow arrives

This will be a busy day - I will be in London having another load of modern miraculous medications loaded into my system to see off the bad guys in my body.

I have a great wodge of paperwork to take with me full of questions to ask, and fitness certificates to complete, and letter-headed authorisations to request; flying to foreign parts when one is having oxygen - even only at night - is proving quite a complex affair to arrange.

Meanwhile -

Here's the GOOD NEWS - my mother is slowly regaining control over her left leg - the knee and foot are beginning to bend and straighten under her control. She has had one trial run around the flat in an electric wheelchair - if the second visit proves successful, the powers-that-be will provide an electric wheelchair for her to gain some freedom of movement. It all depends on whether she can control the machine, and to manoeuvre it about safely. At the moment the problem seems to be that she doesn't always manage to judge the left hand side of doorways and other obstacles, as her brain is still not reliably aware of the left side of her body, including visually

My father and mother, and a friend, have successfully made a bus journey into town, coping with getting on and off, and positioning the wheelchair in the bus. They went shopping, visited a café, and returned home all without mishap.

My mother is also sleeping much better at night time, although still prey to the most weird and painful sensations in her arms and legs. We are hoping that this might mean that the connections from her brain to her body are slowly reinstating themselves.

Talking about sleep, time I was. Asleep, that is. I only came down to plug in my mp3 player and Kindle ready for the train journey and the hanging around that the London trip entails.

Goodnight (or Good morning, or Good afternoon, or evening, depending on when you are reading this!)

Sunday 28th May - Secret Wilderness

Who would have thought that this little haven is sandwiched between housing estates, blocks of flats, and a main road?

We paused to watch the ducks (drakes, actually, no ducks in sight) and the moorhens (red bits on the beaks, coots have white bits). We had the place to ourselves.

This little secret spot is just yards from my parent's flat. Not only that, but you can get there on reasonably level ground. It's a little circuit; past the garages, along the path between the two ponds, then along past a row of carefully tended gardens which are mostly planted with interesting shrubs.

After that we can either return to the flat, or go through the back streets to the local corner shop first.

Saturday 25th May - Bognor Regis - twice in a week!

Twice, two Saturdays in a row - we really know how to live down here!

I'd never been to Bognor Regis before - it's the sort of place that one jokes about but that's all. (Sorry, if you live there - but you'll see me change my tune as I carry on typing).

We only went there last week because there was such a long tail back to get in to Arundel, on the way to Chichester. The left-hand lane for Littlehampton was empty, so rather than queue and queue, we went left.

Then, we were on the hunt for wheelchair shops, the idea being to investigate the possibility of finding a wheelchair which would fit into the bijou lift at my parent's flat. Through the wonders of mobile technology I discovered that there was a suitable shop with wheelchairs in Bognor (that didn't surprise me - apart from Chichester we have discovered similar shops in Eastbourne and Worthing!).

There was a bit a slow crawl to get past the big Butlins holiday camp but then we arrived and found ourselves a car park right by the sea. In the main shopping area is the shop we were looking for:

http://www.mobilityandcomfortbognor.co.uk/

I'm giving them a BIG PLUG, as they were so helpful and kind. The owner spent a lot of time with us, showing us the various wheelchairs which could possibly solve our problem.

Once we had pretty much exhausted all the possibilities, we went off for excellent fish-and-chips at the pier, cooked to order. It was a cold day, and there weren't many people about, but the sun came out and it all looked cheerfully British.





We had a good day out on that trip. Alas, the wheelchair problem wasn't solved on this occasion, necessitating a return trip today. Once again we buzzed passed all the cars queueing to get through Arundel, and wended our way between the fields and bungalows to Bognor. It was much the same as before; sunshine, cold wind, shingle beach... 

It was fascinating to see how the shingle had completely organised itself into bands along the shore, sorted by size. My pictures don't really do it justice, but I reckon you can just about see what I mean.

 

  We didn't stay for fish and chips, but went off to... well, that's a story for another day.

If you have any need for any kind of thingummy for improving your life in the way of health or getting around, then Mobility and Comfort in Bognor Regis is the place to go! 

Saturday 25th May - Invalid, Disabled, Paralysed

I've always been aware of the two-edged meaning of the word "invalid". I can remember those funny little three-wheeled cars that people used to drive around in. I have a feeling that they were barely road-worthy, with a horrible tendency to fall over if one drove them with verve or spirit, (qualities which "invalids" were not supposed to possess anyway). I suppose they were a lot better than what had gone before - i.e. nothing.

http://en.wikipedia.org/wiki/Invalid_carriage



It was the alternative meaning of "not-valid" that I found so offensive in this context, and I would have thought that many disabled people would have taken the same view.

 

http://www.wheelpower.org.uk/WPower/index.cfm/what-we-do/our-sports-associations/

 

The 2012 Paralympics did a lot to reframe the way in which "disabled" people were viewed. 

 

The modern tendency is to focus on "ability" rather than "dis-ability", to look at what someone CAN do, rather than what they CAN'T do. We look for ways around mobility or functional problems so that horizons expand, rather than contract.

 

I have NEVER thought of my mother as being "disabled", or an "invalid" as a result of the stroke. In the hospital, they referred to her left side as being "disregarded", rather than "paralysed". This phrase caught me by surprise, but makes perfect sense. Not only that, it gives hope for the future.   

 

My understanding of what happens after a stroke is based on the real-life experiences of my friends. So I assumed, right from the very first day, that each "state" that my mother was in - semi-conscious, or confused, or suffering from cramps, or unable to sit up, or unable to stand, was temporary, and that over time she would move on to the next stage. Progress would be partly from natural healing, and partly from effort of will, partly from sheer bloody-minded determination, and partly from rehabilitation. 

 

She is much more "able" now that she was even a couple of months ago.

 

For example: her handwriting is legible and she writes letters to friends and family every week. She can read a whole novel and manipulate the pages of the book. She can sit up unsupported. She can take my father, step-by-step through cooking delicious meals. Her right hand is extraordinarily dexterous (is that a tautology?). She does her own makeup, styles her hair herself, every day. 

 

The most recent development is that she is able to lift her left knee - it takes a huge effort of will at the moment, but I am sure that it will become easier as she practises. It must be something like learning to play a difficult chord in a new piano piece - to begin with, one has no control over the notes that you are trying to play, but with patient repetition, the movements become more familiar, until eventually one can play the chord without any thought. 

 

Paralysed?

Disabled?

An invalid?

I don't think so. 

 

Let's go for

 

Disregarded left side (which seems to be coming back a bit)

Reduced mobility (which seems to be improving)

Invalid - NEVER!

 

   

 

 

Monday 13th May - Wednesday 15th May - Relentless Optimism?

On Monday I managed to carve out an hour in the morning and caught up with a friend that I used to spend a lot of time with when our children were primary school age.

We were talking about this and that, and she commented on my "relentless optimism".

That set me thinking. Is this a Good Thing? All these Silver Linings? Looking on the Bright Side? Glass always half full? Am I just maddeningly and infuriatingly cheerful All the Time?

To be honest, I don't know how I would get through life at all if I didn't think like this. It is a deliberate act of will, this "staying cheerful" business. And pretty hard work too.

There have been times of tears. I can remember them from when I was about 8 years old, and 10 years old, and the first nights at boarding school, and Sunday evenings when I worked in a job I hated, and the consequences of working too long and too late for too many weeks in a job that terrified me, and when the children were small, and when they were teenagers, and when I was fearful for my own future, and since our family life became over-shadowed by my mother's stroke. Don't get me wrong - I'm not faking it. I'm not "in denial". I'm not plastering over any cracks.

One of the most powerful tools that I use to stay positive is to look at the natural world and marvel. How many shades of green are there in the trees around me! Look at the flowers, properly. The shades, the veins, the colours, the shapes, the variety. How did that all happen?

 

 

How does an acorn hold a whole tree? How do the two cells that form the very first moments of a baby sort themselves into hair and brain and toenails all in the right place? 

I discovered that if I sit and look, really, really, really look, at a leaf, or a pebble, or a tree, for about five or ten minutes, almost committing it to memory, I can restore my soul, refill my glass, regain my strength, and carry on.

May Day - Monday 6th MayBeDay

Respite Care

Oh my word, what a palaver a respite week can be. How many tears of anguish and guilt and more guilt and even more guilt can one deal with.

My mother is spending a week in a local care home.

My father has been booked on a coach tour for five days, in Wales.

We - that is me and my family - are visiting my mother most, if not every day, taking in the grapes and raspberries and newspapers and biscuits that she likes and making sure she is OK.

The opportunities for feeling guilty have been fully exploited and taken to the nth degree by all concerned - it has taken real emotional effort to arrive at this point in time without anyone caving in.

I actually think that there are a lot of positives to be gained from going through with this week.

My mother will not get the home comforts that she enjoys. The meals are all the wrong way round (main meal at lunchtime, snack at supper time) - but hey - she can have showers and carers and nursing at the press of a button, day or night, from well-trained, kind, helpful, caring, professional staff. She is, too a certain degree, in charge.

My father will be in a lather of anxiety about "abandoning" his wife to the care of strangers, without being there to protect her and ensure that everything is done to make her comfortable - but hey - he doesn't have to remember to get her medications at the right time, to arrange mealtimes around the four daily visits from carers. Nor will he be woken anything up to four or five times most nights, as my mother needs another pain killer, or her pillow has got wedged, or she has become confused about the time, or has been woken by a bad dream. His nights will be his own, and all meals will be provided by the hotel. No cooking! No food shopping for a whole week!

We have arranged a series of people to visit during the week. We can take my mother out into the town in her wheelchair without any need for difficult manoeuvres with lifts and ramps and ordering a specially adapted taxi and remembering to be back in time for the next visit by the carers.

I swear - indeed I have sworn already - that we all need to be mature and adult and accepting and positive about the whole experience.

Otherwise I swear - indeed, I have sworn already - that the next time we arrange respite care, I will book a holiday for myself in Spain for the same week. Or Scarborough. Or Skegness. Or wherever.

Meanwhile, I lit TWO candles in Chichester cathedral today, one each, or was that one for the pair of them and one for us? Here they are, side by side, on the top row, in front of the Easter Garden scene in the cathedral. you know - the bit about the Resurrection? The Dead coming back to Life? Hope? Renewed Hope and Strength?

Sunday 14th April - The Weekend - Get set and GONE!

What a beautiful, sunny, Spring day it has been! How lovely to be out in the warm breeze!

7:00   Wake up
8:00   Get up. Breakfast. Sit around
9:45    Off I go; fill the car with petrol, collect another member of the congregation, take her to church for
10:00ish. This is coffee-time - the gap between the first and second services. Catch up with some friends.
10:30ish  The second service starts. I enjoyed it today - good songs, a kind of slightly random, informal feel. The vicar is away on holiday, so the churchwarden and lead musician kind of ran things, and the talk was given by someone n the congregation who works for Tear Fund.
12:00   Leave, take her home, and then back to my home.
12:30   Lunch
1:00    Hit Homebase (not literally) to buy various items for my parents - a wooden mallet, which might make a suitable implement for holding open the heavy external door when getting everything ready for wheelchair excursions, some light bulbs for a bedside light, some earthenware plant pots and paints as an idea for an activity that my mother might be interested in
2:00    On into town; I need a lead for my new mp3 player to connect it to the computer, I thought we needed cat biscuits (we didn't, as I discovered later), and we needed to do a weekly food shop to take us through to the weekend.
3:45    Home - unload, put everything away (except the cat biscuits - it's going to be a bit of a problem to find space for two big bags, especially since the usual space is filled with the rest of the previous bulk purchase of cat biscuits. Memo to self - no more butter, no more loo rolls, and no more cat biscuits this month)
4:15    Round to parents for a repeat of yesterday's wheelchair excursion. Also to replace bathroom light bulbs and do final measurement and check before ordering a ramp to provide access to the shower.
6:ish    The excursion was a success - both less and more organised than yesterday. However there were no mishaps, and we arrived back in the flat after a pleasant walk around the block - or rather small lake/large pond beside the flats. The best of the day was over, but even so it stayed warm and dry. Left my parents organising their supper, and came home to cook ours.
7:30ish  Dished up "Sausage Supper". Yum yum.
8:00   And so it was evening, and night-time, and morning, and another day...

Oddly enough, after my Art-Rage post yesterday, and also a lovely encouraging email from a friend this morning, I'm feeling so much calmer, so much more "together". However, I won't take too much of this return to even-temperedness for granted - I suspect it will take a little more than 24 hours to be
re-stabilised!  I shall zone out with a bit more crochet.

Term starts tomorrow - assume the brace position...