Life in limbo: pass the love on

Things are weird in our house this week; it feels like momentous things are going to happen, but just not quite yet.

Mum was admitted to hospital last Tuesday evening, and she’s still there as I type this. The admission was because she complained of abdominal pain and she was very confused.

When I visited her yesterday afternoon, she is still confused,  but no longer in pain. They want to do a CT scan and see if she has had another stroke, but I guess it isn’t urgent and she has been ‘parked’, really, on a ward over the weekend. I know she’s ‘not herself’ because she is submitting fairly meekly to being there.

The day she was admitted was very traumatic for me (as well as for Mum), so when Mum’s local authority key worker suggested I ‘take the day off’ on Wednesday and not visit the hospital, I readily took that as permission to absent myself. It gave the professionals time to assess what was going on with Mum’s physical and mental condition. I’ve visited her each day since, but I’m not planning to go today becasue her church elder is going – but I feel guilty. I keep thinking about the long boring hours in the ward, with nothing to do and nowhere to go…

It’s a school holiday here today, too, and I am assuaging my guilt about my own mother by  at least being a happy mum here for my son.

My husband and son were away all day yesterday at an event my son was taking part in; so my husband also had a long and boring day doing his parental duty. He brought me home a little box of two chocolates…. for him an unusual and very touching gesture. I’ve decided that the words on the box are an instruction to me on how to cope in this limbo… I’ll just do my best to pass the love on.



The chaos of constipation

via Daily Prompt: Chaotic

The scene opens on a middle-aged woman sitting alone, lauging hysterically. She has just read the WordPress Daily Prompt: the word was Chaotic… She reads aloud as she writes in her diary…

Thursday 24th November

Visited Mum in hospital today. She is still constipated but seemed happy that she is being looked after. This was a pleasant surprise, given that her last hospital admission led to a management review of the use of raised bars at the side of beds, after Mum climbed out over the bars on her bed because she wanted to go to the loo in the middle of the night and didn’t know how to press the call button.

It turns out that one of the senior docs who looked after her then spotted Mum earlier today and came for a chat. Yes, that’s how memorable the incident was.

This was the calm after the storm. The Chaos occurred on Tuesday. I went down to Mum’s place first thing to try to avert the usual distressed phone call when she awakes and cannot work out what to do with herself. I helped her wash and dress and we both ate Oatibix for breakfast; she had prunes too; and Laxido gel to help with constipation.

Coincidentally, I think, it transpired that Mum’s loo was blocked, so I called the water company to come and sort it. Fortunately there is a commode in the house, although the prospect of the constipation clearing was not attractive.

By 1pm, Mum was straining on the commode, in great agony. I requested a district nurse visit and she duly came at around 3pm bringing a student with her. Sparing the details, I overheard this: “People don’t usually squeal like this when you give them an enema.”

Around 2pm the guy from the water board phoned to say he was in _____, at least an hour away. I told him I needed to leave for parents’ ‘evening’ at about 3.30, so could he just knock and come in as my Mum takes ages to answer the door?

“Oh no, I’m not allowed to come in. I only deal with the drains outside.”

That’s not what the call handler told me when I phoned it in; she said if the blockage was external they would clear it free of charge, but if it was internal we’d get a bill.

I was 99.9% certain the blockage was internal – likely an incontinence pad accidentally dropped down the loo. So I sent the water board guy a text saying, “The blockage is almost definitely internal, so I will get a local plumber; don’t want you to waste your time coming all this way.” Then I went and worked at the loo,  poking and plunging until I saw a tiny stream of bubbles, and ultimately the pan full of water flowed away with a great glugging whoosh. HOORAY!

Mum slept through all of this; and went straight back to sleep after the district nurses’s visit too, so I took the gamble of not waking her when I left to go to my meeting.

Between five and six pm, I got four phonecalls from Mum’s neighbour and her GP telling me that she was being taken away to hospital in an ambulance –  for constipation!

Cannot a fecking sandwich filling daughter-mother even go to fecking parents’ evening without the whole world dissolving into chaos?

Oh and apparently (I heard later from the neighbour), the water board guy turned up in the middle of all that chaos; he DID come in, and surprise surprise! discovered the toilet was functioning perfectly!

Chaotic? Chaotic! 



It never rains but it pours

Why does each new crisis arrive so soon after the previous one is resolved?

When I awoke very early this morning, as I usually do being a moderate insomniac, I was looking forward to writing a blog post about the really momentous thing that happened  yesterday.

Meanwhile, the news was full of information about the amout of rain that has fallen overnight, and sure enough, the usual deep puddle had formed on our driveway. I’ll come back to the rain later…

Yesterday, Mum’s GP decided it was now time to sign whatever the relevant paperwork is to define Mum as an Adult with Incapacity. The immediate first thing about this is that Mum can now be over-ruled about having local authority carers coming in. We have been in limbo for over four years, with everyone – OT key worker at local authority elderly care team, GP, Mum’s friends, me, my sibling, my friends, the church elder, Mum’s neighbours, Uncle Tom Cobley – thinking that Mum would benefit from these visits, and that she would actually enjoy having more people coming into the house as she becomes increasingly housebound.

But, the gatekeeper to this service, the OT key worker at the local authority, cannot (she says) provide it if Mum says she doesn’t want it. Which she does, every time.

In the last couple of months, though, there has been a dramatic step change in Mum’s condition. She is now confused and distressed upon waking. She is also wetting the bed, forgetting to take her pills, and a whole host of other behaviours that are not optimal for quality of life.

Yesterday, when the GP called me to say she was now content to sign the paperwork, I was happy and relieved; but when I awoke this morning I had other more mixed feelings:

  • sadness that my Mum should be categorised by officialdom like that;
  • rueful regret that Mum’s stubbornness about accepting carers should mean that this categorisation was necessary in order to get her what she needs;
  • worry that there will be some other consequences of this designation down the line that I don’t yet know about and which will be bad for Mum.

However, I don’t have time now to process these feelings any further, as it never rains but it pours.

_35The GP had visited Mum yesterday while I was out working, and among other things realised that Mum is constipated. Our whole family has lived with Mum’s bowels for as long as I can remember, and she was diagnosed donkey’s years ago with diverticulitis. Mum has always had to eat bran and perform various dietary rituals to ‘keep herself regular’. She almost certainly has sub-optimal gut motility. These days she eats Oatibix and prunes every morning and uses a product called Laxido. I think she has missed a couple of days recently  along with forgetting to take her pills, so today the chickens came home to roost.

I gave her a Laxido drink yesterday at teatime after speaking to the GP, and another one this morning along with her Oatibix. She then felt the need to go to the loo, but was in there for ages bellowing with great pain. It’s a ghastly situation. When she finished in the loo, she told me that her cleaner blocks the loo by using the wrong toilet paper. This is clearly nonsense, but after a few minutes I realised Mum was trying to tell me the loo was blocked. Sure enough, although there was no sign of anything she had passed in the loo, when I flushed it the bowl just filled up.

Bloody flipping feck feck feck!

indexMum lives in a very ancient wee cottage with very dodgy drains. It is possible that Mum has blocked the loo by accidentally dropping an incontinence pad down it. It is also possible that the sewers are backed up by the torrential overnight rain, or blocked by autumn leaves. I investigated…. stuck my hand around the U-bend, but couldn’t find any obvious block. So where we are now, is that I have called the relevant sewerage company and they will send someone within 24 hours!

She only has one loo, by the way.

So, I will have to spend as much time as I can at Mum’s house between now and them coming because she can’t even answer the door never mind speak to them! And it’s parents’ evening tonight and….. and I want a life!

Why does each new crisis arrive so quickly after the previous one is resolved?

Blogging – what’s it for?

Writing my truth anonymously in a blog helps the frustration come out in a safe way.

I had precious time away with friends who have known me since university days. Two live south, two live north, so we meet in the middle, in Yorkshire, at a hotel with self-catering lodges.

We have to share a room, or even a bed; fortunately two of them are best friends so they are OK with that. Two of us – not the same two – are insomniacs, so there is a race to see who gets to the living room sofa first.

chevinlowres-9096There’s no wi-fi, which makes it surprising how popular the place was this year. It meant being a bit cosy with strangers in the hot tub, but everyone was willing to cooperate.

Over dinner on Saturday evening, I disclosed to these trusted long-time friends that I’ve recently started writing this blog, and that – since it is anonymous and cannot be linked to me in the real world – I write the truth about my feelings about being a sandwich filling. They agreed that there are things we can’t say – because of social taboos – even to our closest friends, because inevitably we are judged by what we say. Fortunately, there is not yet an Orwellian thought police, but I explained that writing my truth helps the frustration come out in a safe way.

One of ‘the girls’ – the one who has been most successful in the way it is usually judged in our society (she has achieved a very senior position in the profession in which we trained) – immediately tried to give me a boost by saying that I was always a good writer/editor and that I should publish my blog. [A discussion ensued about Brooke Magnanti…]

Her motive was admirable, but I was a bit dismayed that such a sharp cookie, and very nice person, should so fundamentally misunderstand the whole point; if I published these thoughts that I have, I would die in a hail of hate mail.

There’s also the small point that I’ve only written five posts so far, so I’d be several chapters short of a book even if I had ambitions to write one.

Thursday is my day off – it’s when I get to go to work

I don’t know how typical this is for carers, but going to work is as good as a holiday for me.

For a few years now, my elderly mother has gone to a ‘lunch club’ on Thursdays. She gets picked up by a volunteer driver at around 10 am, has social time at the club followed by lunch at noon and is taken home again at 2.45. I’ve come to cherish it as my ‘day off’ because it’s the day Mum doesn’t call me in the morning wanting me to go and keep her company or take her out on some errand.

Except that in the last few months Thursdays seem to have acquired a podiatry appointment before lunch club and a hairdresser appointment after lunch club, meaning that my ‘day’ is actually just five hours from 10-3 because both of these activities require me to drive her.

Her vascular dementia is worsening at quite a pace in recent months, and she is now often confused in the mornings, although often by mid-afternoon she is completely lucid. So this morning – a Thursday – she left a message on my answering machine while I was in the shower, sounding befuddled and saying she didn’t know what to do today. There was also a text message from my brother to say she had called him but he was at the dentist. So, I called her back and had an impossible conversation with her like this:

“I don’t know what I’m doing.”

“Your’re going to lunch club today; a driver will pick you up as usual.”

“But I don’t know where I’m going.”

“It’s OK, the driver will take you.”

“But I don’t know where I’m supposed to go.”

“You go to lunch club; it’s Thursday, and someone will take you, as usual.”

After several minutes of this, I said I was going to say goodbye and hang up. Then she said she didn’t feel well enough to go to lunch club. And this is what makes caring for her so hard. I don’t think she does it consciously, as a planned strategy, but she always manages to construct a scenario in which I am supposed to say ‘OK, I’ll come down and spend the day with you.’

But I have a life, too. And on Thursdays I usually do my own free-lance work.

So, I hardened my heart and said, “Well, see how you feel when the driver arrives. I’m working today, so I’ll talk to you tonight. It’s now 1.45 pm and I haven’t heard from either Mum or the lunch club leader, so I guess she must have gone…



Leave me my name!

“Because it is my name. I can have no other one in my life. Leave me my name!” [John Proctor in The Crucible by Arthur Miller]

My son is studying The Crucible for Higher English so we watched the DVD of the 1976 film last night. The screenplay was written by Miller, so it is reliable as a study aid. As it turned out, John Proctor’s anguish at the end helped me release my own emotion of the day.

While we were away at a university open day Mum had to manage by herself from Friday tea time until Saturday bed time. She was furious (actually she was frightened) at the prospect of her safety net (me) being unavailable, and for a few minutes I seriously considered staying at home, just letting my husband and son go. However, she has her ‘red button’ emergency service and I prompted my brother to call her.

I felt bad about going, but she insists on staying in her own  house, and refuses to have local authority carers, so I hardened my heart and did my parental duty instead of my filial one.

I phoned her on Saturday, early evening, and she said all was well, so we agreed I would go down and see her on Sunday morning. When I arrived I immediately noticed that her large and very heavy coffee table had been moved, but she was not able to tell me how that had happened.

A couple of hours later a local woman I don’t know rang the bell and came in. She said she had just popped in to see if Mum was  all right after her fall last night! It turned out that Mum had fallen on the living room floor and had yelled for help as this woman and her husband passed the window. The door being unlocked (a double-edged sword), they were able to come in and help her up. She was not injured.

Mum didn’t want me to know about this fall. I understand that. But I was gobsmacked to realise she had told me a totally convincing bare-faced lie about not knowing why or how the table had been moved, including that nobody had been in the house (I specifically asked her that).

What happened next, though, has rocked me. Mum was cross that this woman had spilled the beans about her fall, and said to the woman, “I didn’t want her to know; she is vicious.” Who me? What? Where did that come from? The poor good samaritan realised she had caused a problem and beat a hasty retreat.

I was really taken aback by what Mum had said – nothing has ever happened between us to warrant that choice of word. Impatient? Yes. Argumentative? Sometimes. But vicious? I’m actually quite a kind and cooperative person – you know the kind of person who sees the bigger picture and wants the best possible outcome for all (a bit of a utilitarian, perhaps?).

In fact, this is not the first time she has described me using that word; she has said it twice before to my knowlege, once to her GP and once to her elderly care team key worker. [There is another potential blog post on kicking the cat – avoidance and deflection as coping strategies.] I’m now realising she might have said it more often to other people.

This time she has said it to some random person in our very small town, who doesn’t know us well enough to know that Mum has vascular dementia, but knows us enough for me to be tarred with that epithet. The more I reflect on it, the more serious I think this problem is, but I have no idea what to do about it.

Her words hurt my feelings, and I just have to hope they don’t hurt my good name.

Merge in turn

Having to make decisions slows people down.

We went to a university open day on Saturday. As well as touring the campus, talking to ‘student ambassadors’, and viewing the halls of residence, we listened to two talks relevant to the course our son is interested in.

The Head of School’s talk included a mention of so-called multi-tasking. Apparently, it’s  impossible, and what we actually do is ‘concept switch’ or switch attention rapidly between tasks.

She told us that research has shown that when people concept switch, their error rate goes up and the work takes longer.

On our way home my husband got somewhat frustrated at the queue for roadworks, where of course the usual difference of opinion ensued between those who merge at 800 yards and those who carry on up the emptier lane to merge further on. He commented that it’s having to make decisions that slows people down, so that an efficient system is one in which decision points are minimised.

Therefore, if roadworks contractors used signage saying ‘use both lanes’ and then in the last 100 yards ‘merge in turn now’ the whole queue would be quicker and shorter. It seems likely there would be less chance of scrapes and bashes and high blood pressure due to the difference of opinon, too.

So the error rate would decrease and the task would take less time. Time to write to the Department of Transport, perhaps.

The thin end of the central processing spectrum

It is inexcusable in 2016 for teaching professionals not to use simple classroom accommodations for kids with mild learning difficulties.

I’m now sure that my son has some impairment of executive function capability, possibly in the category of ‘central auditory processing disorder’ abbreviated to CAPD. Whatever it is, it’s very mild and actually in population terms at his school he is ‘doing well’. He has passed 6 N5s and 2 or 3 Highers (depending on whether you think a D is a pass), which puts him in a zone nobody (except his parents) is concerned about.

But his father and I are both educated to doctorate level, so he is not doing as well as you might expect the biological child of such parents to do. You would expect 5 good Higher passes in one sitting. And the Scottish Government’s latest slogan regarding education is Getting It Right For Every Child (GIRFEC), so the school’s failure to recognise my son’s condition is frustrating.

At the beginning of every school year I tell my son’s teachers, “What you say to Stan [not his real name, obviously] is not necessarily what he ‘hears’ “. The word ‘hears’ here has the meaning of ‘understands’; in CAPD there is no hearing impairment. I ask the teachers to ensure that Stan has written down the homework task accurately and to take a moment to make sure he has taken in any important instructions. “Oh right,” they say while the thought bubble over their heads says ‘neurotic pushy parent of a lazy thick kid’. Then a few months later we get a report card home on which various teachers have written, “Stan,  you often don’t seem to understand the task,” or “You often don’t answer the question that was asked,” or “Your work tends to be poorly laid out and untidy and you don’t write enough.”


Of course, I understand that Stan’s condition is incredibly mild and that the school has to deal with many kids with really severe learning difficulties. But, it is inexcusable that they first of all don’t bother to make basic classroom/teaching accommodations for my son, and then, criticise him for displaying the effects of the invisible disability that we told them about in the first place.

So you can see why GIRFEC has become a substitute swear word in our house, usually used when reading school report cards.

Neurotypical and pissed off

My mildly Asperger’s husband doesn’t think his relationship with me is qualitatively different from any relationships he has with anyone else.

My husband is a very high functioning Aspergers guy – PhD, Captain of the golf club, generally well-liked. He’s not one of those ones who talks inappropriately and doesn’t know when to shut up. He goes the other way and says virtually nothing that is not essential. We have been together for over 25 years and I can count on my fingers the number of times he has called me by my name.

He doesn’t do any demonstrations of affection at all, ever, and flinches and steps back if I try to kiss him. I have trained him to allow me to kiss him on the cheek, and reminded him just the other day that if I squeeze his hand, he should return the squeeze. He understands the concept of social glue, at least. However, he doesn’t think the relationship he has with me, his wife for goodness sake, is qualitatively any different from any relationship he has with anyone else, i.e. I’m not special to him.

It took about ten years for me to understand what was (not) going on. Ten years of me weeping and raging alternately and him just standing there looking blank. He only does impassive or absolutely raging, there’s nothing in between. When I am ‘in a good place’ the household is tranquil, but if I need support he just gives me a row.

9781843102533About ten years ago my brother gave me a book, The Asperger Couple’s Workbook, by Maxine Aston. It’s a very good book and a lot of it was quite accurate for us, but I was really pissed off at being given a book about something I had already sussed out for myself.

[It’ll probably be a recurring theme in my blog posts that I regularly get irritated at people telling me things I already know. It’s the implied assumption that I am a moron who needs to be told that really annoys me. Is it because I am not very tall, not very pretty and (now) at least three stones overwieght that I am considered an idiot?]

Of course by the time I had realised I was NEVER going to have soulmate-style intimacy and support from my husband, it was too late to bale out. (Youth + wine + inate biological drives = one son and one ectopic pregnancy.)

In my mind, we are now fairly successfuly co-parenting, but when our son leaves, so will I.

Just who is Living Well with Dementia?

Mum constantly asks for my help, but wants it as from a servant rather than a peer; unquestioning and on call.

A facebook friend recently wrote, “I have tended to the most personal needs of my late elderly father, and doing so only made me love him all the more – if that was possible.”

Here in the UK we have a ‘national government strategy entitled Living Well with Dementia that aims to promote “The practical things people with dementia can do to live well now and make plans for the future.

I’m happy for my facebook friend, and glad that there is official awareness of what can only be a growing issue in our society. But…

My truth – which I can admit in the anonymity of a blog – is that I do NOT love my elderly mother more through caring for her in her infirmity. Her personality is crammed with interesting and admirable quirks – sociability, creativity, vigilence, determination, eccentricity – which, when magnified by physical infirmity and vascular dementia, become an inability to be alone, mad ideas, neurotic anxiety, bossy stubborness, illogical unreasonableness – and make her a total pain in the pants.

She constantly asks for my help, but wants it as from a servant rather than a peer; unquestioning and on call.

This morning she phoned – sounding puzzled – to say that her hall and living room were covered with ‘mess’ and that she had spent ages trying to clear it up but couldn’t manage it, so could I come down as soon as possible to sort it out. She reckoned a dog must have got into her house somehow and had ‘messed’ on the carpet. My heart sank as I feared that maybe she had had a bit of diarrhoea and had trailed it along the floor as she tried to reach the loo. So I rearranged my day, gathered some cleaning materials AND GLOVES! and headed off to do my duty.

What a relief when I discovered that the ‘mess’ was a trail of crumbs from a Choco Leibnitz biscuit that must have been in her lap when she stood up, fallen on the floor and been crushed underfoot.

20922_choc_leibniz_milk_w360_hauto_w360_hauto_w360_hautoWhile I was sweeping up the crumbs and hoovering, her friend from sewing club called to arrange to pick her up this afternoon; after a short conversation we agreed that I would take Mum to the sewing club today and the friend would bring her home. This was a good compromise as the friend was going out for lunch today and they do me a big favour every week by offering this lift.

Then I made a mistake: I should have left after cleaning up and gone back three hours later to give the lift, but (stupid Stupid STUPID) I stayed. By sewing club time I had found her glasses down the back of her bed, cleaned the bathroom floor, picked up all the beads from the string of beads she broke last night, made her a good quality lunch and – here’s where it all went wrong – discovered her folding up sheets of kitchen paper to wear as pads inside her pants.

Well, this is where my patience ran out. NOT because she has a continence problem; but because she won’t use the appropriate products. Does she have access to suitable products? Yes. Does she get them free on the NHS? Yes. Are they delivered to her door? Yes. (There is another potential blog post along these lines on the topic of Mum’s hearing aid.)

tena-comfort-mini-plus-packFour  years ago when she had a major stroke she started getting a supply of pads because although she is continent her extremely poor mobilisation means it takes her a very long time to get from her chair to the toilet, and as a result sometimes the wee comes out too soon. A few months ago she told me she had tried to reorder her pads but that they had told her she wasn’t on the list. She didn’t understand and asked me to find out how she could get her supply of pads. Let me repeat SHE ASKED ME TO FIND OUT.

[As an aside: I discovered that the local NHS Trust had changed its supplier and that, as Mum had not placed an order for more than six months, she had been taken off the list. The new supplier required her to be re-referred by her GP practice. This involved a complete waste of the district nurse’s time in doing a 3-day continence chart for Mum – which Mum was totally incapable of completing, but which needed two visits by the district nurse to deliver and pick up what was essentially a made up form. “Just put down plenty of ‘wets’, ” the nurse told me on the phone.]

The ensuing argument can be summarised as Mum assserting that the pads don’t stop the wet but two folded pieces of kitchen paper do, and that I am basically the worst daughter in the world.

What she really wants is a Lady-in-Waiting who has no identity of her own and whose opinions are never to be heard let alone given any consideration.