The benefits of having a mother with dementia come to stay (not as miniscule a list as you may suppose)

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So this is one of those rare and wonderous things: a blog post about mum’s dementia that is not unremittingly bleak and does not make you feel suicidal to read it (hopefully; unless there are other reasons that my writing makes you suicidal in which case I suggest you unsubscribe immediately).  Mum came to stay this weekend – and it wasn’t that bad!  I realise that this is faint praise for a house guest and if anyone ever wrote that about me visiting them I’d be deeply offended, but previous extended visits from mum have been OK at best and at worst, catastrophically miserable.  To have a positive experience is worth shouting from the rooftops.  I realised during this visit that there are a few tiny compensations for having a relative with dementia come to share your home, however briefly:

  1. One is forced to keep social and work commitments to an absolute minimum – There is no point in ‘having to be’ anywhere when you aren’t sure how long it is going to take you to get mum breakfasted, in and out of the shower in one piece and dressed to an adequate standard (i.e. majority of skin covered in semi-appropriate attire, ideally with underwear on first).  On Saturday this process was complete by 11am, on Sunday, as I got into my stride, we were showered, dressed and downstairs drinking tea by 10.30am.  I suspect that the line of progress is not exponential though – I don’t think we’d improve our timings simply with duration of stay but that is the beauty of having reduced a usually frantic timetable down to a few key elements – it really didn’t matter if we were still in our dressing-gowns by mid-afternoon.  As a result of a reduced social calendar I was able to get four loads of washing done and out on the line, prune the hedges, finish a book, let the kids run feral in the garden late into the evening without needing to get them in to bed in time for the arrival of a babysitter, and to get two decent nights of sleep without a hangover in the morning.  Bonus!
  2. Having a house guest who doesn’t need to be entertained is very relaxing – Even with one’s very closest friends there is always an element of needing to be seen as the hostess in your own home.  Nobody wants their friends or family to think that they make no effort to attend to their needs if they come to visit, but mum’s needs are so wonderfully simple that I can be the perfect host by just sitting in the garden reading.  As long as she is clean, fed and watered she is happy (and I mean that genuinely – I’m not just saying it to excuse my general laziness).  Simply being in our house with the children and the dog careering around is ample stimulation so no dazzlingly witty repartee is required (because obviously, if it were I’d be up there with the best of them – conversational openers such as “I saw this lady at work with a funny wart…. or “last week one of the children said something mildly amusing” are my forte.)
  3. Having mum to stay provides little glimpses of the person she used to be before the dementia –  Normally when mum comes to visit she sits on the sofa in the kitchen, occasionally gets up and moves towards the kitchen counter to see if she can help with food preparation, sits back down again, drinks her tea, eats her lunch and then leaves.  We can have entire afternoons with her uttering fewer than five words and barely moving.  But given a 48 hour window she seemed to open up – just a little.  She wasn’t quoting great Shakespearian monologues to me but we managed a few properly constructed sentences, something that passed for a conversation and even a joke!  I had brought her a cup of tea during the morning and apologised that it was a bit stewed, later when I asked if she wanted another she said “Yes.  A nice one this time?” with a little mischievous look in her eye.  Again, not the most outrageously hilarious thing I have heard in my lifetime but an attempt at comedy nonetheless and I didn’t even mind her flogging the joke to death by repeating it every subsequent time I offered her tea.   I also made the discovery that she can still read and understand what she has read – she just cannot verbalise it.  Listening to her trying to read ‘Peppa Pig’s Birthday Party to my youngest daughter was agonising but when my husband mentioned something about a local news issue she piped up with “That was in the paper!”  Which it was, and the paper had only arrived that morning.

This was also the first time that we had tried the ‘intermittent home care option’.  Having investigated how much it would cost to have the lovely Alison to stay for 24 hours (an eye-watering £448 – I’m not complaining, it’s good that such an important job is well remunerated) we decided that mum could probably be left to fend for herself for a couple of hours and certainly overnight.  I dropped her back at her house on Sunday evening, got her supper and a cup of tea, put the telly on and left (with a degree of trepidation) knowing that Alison was coming at 8pm to stay for two hours and get her ready for bed, then returning mid-morning to get her up and dressed.  Dad was due to be back late the following evening.  I left my mobile number in case there were any issues but Alison did not call and when dad returned all was well.  This is excellent news for the future because it allows a degree of flexibility in terms of dad being able to take the occasional respite break without it falling solely on the shoulders of me and my sister to take up the full weight of care until he returns.  Although, as it turns out, the full weight of care was nowhere near an onerous as I had anticipate this time round and in fact, when I returned home on Sunday, the house felt a little emptier.  I realised that I missed mum being there and it’s a long time since I felt that way.

Give us a clue – the power of non verbal communication when words fail us

At medical school and certainly in training for general practice we were taught about non-verbal communication and its importance in a medical consultation.  However, understanding the significance of body language is one thing, being able to interpret it is entirely another, as is being able to convey empathy and understanding with one’s own non-verbal signals.  These are skills that come naturally to some but cannot be easily taught and are usually acquired with years of practice.  After fifteen years as a GP I would like to think that I can work out what kind of mood many of my patients are in during the time it takes for them to cross the waiting room – clearly if they are being wheeled towards me in a full body cast with extensive bruising and facial trauma I may perceptively deduce that they’re feeling a bit pissed off – but that is just because I am highly skilled in these matters.  I can also use simple non-verbal techniques such as a smile and open posture to  deflect the considerable anger that builds up amongst patients sitting in the waiting room for more than half an hour assuming their doctor is doing little more than twiddling their thumbs rather than attending to their urgent needs (don’t deny it, you’ve all thought it). 

Outside of work I’ve been honing my skills with mum and I can now often understand what she is trying to communicate from very limited information.  Since she has all but lost the power of speech the family have had to rely on interpretive skills far more.  We take into account the context of the situation, the timing, the facial expressions and level of agitation without even registering that we are doing so as the following examples illustrate:

    • When discovered shivering in our corridor at home wearing a small hand towel with hair sopping wet and I ask her about her bath she shakes her head and tells me that the water had been“White”    =   ‘Actually the water was freezing  because you had neglected to put the boiler on but I have forgotten any of those convenient adjectives to describe cold so can only tell you about a colour that one may associate with snow and hope that you’re going to know what I mean.’ 
    • At lunch mum is presented with a bowel of tomato soup, she raises her eyebrows and enquires “Green?”  in a hopeful voice   =   ‘Do you have any of the pea soup we had last week because ideally I would prefer that but if not don’t worry, tomato is fine.’
    • When out walking in the bluebell woods an increase in huffing and puffing, an anxious knitting of the brows and repeated glancing in the direction of the car   =   ‘I’ve had enough now.  I know we’ve only walked thirty yards but I’m tired and I’ve seen these bluebells before and I’m a bit concerned about slipping over in this mud and to be honest I’d quite like to go back home.’
    • Repeatedly plucking at a part of her body or face whilst pursing her lips  =   ‘I’m a bit concerned about this spot / itchy bit of skin / broken vein but I don’t really need you to do anything to reassure me other than look at it and nod’.

Suffice to say, my sister and I are now relatively competent at deciphering the signals. However, we are nothing compared to the Jedi mind reader that is my dad, a point beautifully illustrated a couple of months ago.  

My parents had driven over to our house for coffee and everyone was in the kitchen.  Mum actively sought me out in the hall and had that look on her face that suggested she had significant information to impart.  She grabbed my arm and looked urgently into my face. “In the car..” she said and then paused and shook her head. “You know!” she laughed, smiling at me, “You know!!”   She paused, thinned her lips and shook her head again to indicate that something sad had occurred.

I was COMPLETELY baffled. “Something happened in the car??” I asked bewildered. She shook her head again and raised her eyes to the ceiling in a briefly out-of-character display of exasperation.

“Dad!”  I shouted.  “Need your help.  Mum’s trying to tell me something!”.   We walked back into the kitchen and mum went over to dad and repeated “In the car!!!” with an emphatic little push towards him.  

He looked at her and thought for a few seconds. “In the car when we were listening to the radio?”  he asked.

She nodded.

Is it about Terry Wogan?”  he asked.

The relief was immediate, “Yes!!!” she replied triumphantly.

About Terry Wogan dying?”  I asked incredulously and turned to dad “How ON EARTH did you know that was what she wanted to say?”  He shrugged as if it was entirely normal for him to be able to extract the significant death of a national radio legend from this limited information. 

“You should be on ‘Give us a Clue’”  I said.  And I meant it, they should – imagine the scene, Lionel Blair jumping excitedly in his seat as dad manages to work out ‘The Count of Monte Cristo’ from a limited number of mum’s eyebrow gestures.  They’d have cleaned up.*

In fact, now I come to think of it – perhaps there is a niche market out there for gameshows involving people with dementia and their spouses:  

  • Supermarket Sweep – several rows of a foodstuff that you didn’t actually need.
  • Antiques Roadshow – people bringing in items that have become imbued with some strange significance and nobody knows why.
  • What not to wear – Trinny and Susannah asking mum repeatedly “Are you sure?? The blue cardigan again?  Even though it’s not the weather for winter knitwear and it is four sizes too small and has egg on it?” 
  • It’s a Knockout! (for carers) where you have to navigate a shopping centre escalator, a public toilet, a crowded cinema and swimming pool changing room before the time runs out on the parking meter.

I could continue but I feel it is important that I get these ideas in to the head of comissioning at the BBC so must crack on. 

*  Those of you who were born before 1985 and are UK resident will be familiar with this particular panel show.  For those who live elsewhere it was a TV programme loosely based on a charades format screened during the eighties and for those of you who are too young to remember it, I feel your loss).    

You’ve got to be choking – Dementia; hard to swallow?

My knowledge of dementia prior to its insidious arrival in our family was limited to what I had learnt and seen as a medical professional. I knew that people with dementia were  often confused, that their short-term memory and personality could be affected and that they may struggle to communicate.  I knew it only as a disease affecting cognitive function; how we think, perceive and interact with the world – but I had not appreciated the impact that dementia can have on motor function; how we physically move about within that world.  My assumption was that the reason most patients with dementia were incapacitated, bed-bound, or confined to a wheelchair was because they were elderly and very frail.  It did not occur to me that the reason they were frail and incapacitated was, at least partially down to the dementia itself.

The first thing that alerted me to mum’s reduced mobility was her struggling to get in and out of the swimming pool on holiday a few years ago.  Since then flights of stairs have been manageable as long as they have a substantial hand rail and are stationary.  Moving stairs (or as I like to call them ‘escalators’) are fraught with peril as described in my Christmas Shopping Post http://wp.me/p6uRmE-1x. and a couple of steps descending into a pool of water with no surface to lean on require two able-bodied assistants and the sort of  tongue-sticking-out concentration demonstrated by a toddler using scissors for the first time.  So we have learned to adapt and adjust to the new limitations, we watch with the scrutiny one would normally reserve for the very infirm as mum navigates steps into restaurants, revolving doors into shopping centres and narrow aisles in cinemas.  In fact it was the cinema where I first noticed the new addition to the slowly growing list of mobility and motility symptoms; dysphagia – i.e. problems swallowing.  

Now, anyone who knows their onions (and by that I mean anyone who knows about dementia) will tell you that issues with swallowing are common in advanced disease but I was always anticipating that we would get to the pureed food stage at about the same time as the wheelchair stage (and what a great stage that will be to look forward to!)  What I didn’t realise is that mum’s dysphagia would first present with her aspirating her popcorn during the recent Star Wars film (I say recent which just goes to show how long it is since I have written a post but you know the film I mean – this year’s one – v. good by the way – all choking aside – do you see what I did there?).  Even manoeuvring mum into the cinema had been fairly traumatic.  We had arrived, small children in tow as the room darkened, armed with aforementioned popcorn, duffle coats, hats and bags and discovered that our allocated seats were right at the back.  Access to these seats was reliant on the goodwill of five other cinema goers who had to stand and shuffle back in order to allow us to haul our luggage past them.  We had decided in our wisdom that it would be easier to get into our seats and then see who needed to go to the loo once we knew where we were sitting.  This obviously necessitated the obliging five people to get back out of their chairs on two further occasions and a lot of loud whispering along the lines of

“THIS WAY.  

MUM!!

NO.  THIS WAY!!

NO! 

DON’T FOLLOW DAD!  – DAD’S TAKING THE KIDS TO THE LOO.  

COME WITH ME!

NO!

YOU DON’T NEED TO TAKE YOUR COAT OFF HERE.  

THAT’S SOMEONE ELSE’S SEAT.

DON’T SIT ON THAT MAN!!

NO, THAT’S YOUR POPCORN.  

OOPS! SORRY!

SORRY!  –  DID I JUST KNOCK YOU OUT WITH MY EXTENSIVE COLLECTION OF BAGS ??  

OVER HERE!

THAT’S RIGHT.  

JUST SQUEEZE IN HERE –  PUT YOUR DRINK HERE – NO!  HERE!!! 

SORRY!

Sorry!

Sorry!

Once everyone had availed themselves of the conveniences and returned to their seats we settled down as the opening credits rolled and I started to relax.  But no sooner had the legendary theme music faded than I realised mum was choking on a piece of The  Odeon’s finest popcorn.  In fact, by the sound of it that piece of popcorn had been inhaled directly into a main bronchus and she was now trying to cough up an entire lung.  The wheezing, barking and spluttering lasted for about twenty seconds, several people turned back in their seats in genuine concern as opposed to annoyance at the interruption and then, as quickly as it had started, it stopped.  Mum went from imminent respiratory failure to happy cinema-goer in a matter of  moments and stared at the screen as if nothing had happened.  There was no trace of the usual embarrassment that accompanies a noisy coughing episode in a confined space.  She simply looked straight ahead and everyone else turned back round to address the main feature (some, perhaps slightly disappointed that the drama was over –  a good medical emergency often enhances a trip out as long as one is not the patient, a relative or doctor).  I meanwhile, was having visions of paramedics attempting resuscitation against a backdrop of Stormtroopers (How would they do it?  Would they have to stop the film?  Would everyone be really pissed off with us?  Why on earth would I give a toss about that? – How terribly British) which somewhat impaired my enjoyment of the remainder of the film.  A couple of similar episodes followed at intervals before I realised that perhaps popcorn was not the best and took it away.

Since then we have a noticed an increasing frequency to these choking incidents, Sunday lunches punctuated by collective breath-holding from the family whilst we wait for mum to regain normal respiratory function, an episode on holiday where she coughed so much she vomited on the table (crowded restaurant – not ideal, see later post) and enough independent comment to justify looking at it a little more closely.  I suggested to dad that we get a Speech and Language team (SALT) assessment. I think he remains entirely bemused as to why I feel this is necessary – to him it is just a little cough and I suspect he has got used to it.  Clearly, it may well prove to be a series of innocuous viral respiratory infections that resolve and allow my mother to return to popcorn-eating with gusto.  But if we want to avoid an aspiration pneumonia, protracted hospital stay and potentially issues with artificial feeding surely it is best to get her swallowing assessed properly.  Put in this context he couldn’t really refuse (poor man – I’m a bit mean like that) so he has seen the GP (eventually – I know – it is frustrating for us too) and the request has gone in. 

I’ll keep you posted as I’m sure you’re all on the edge of your seats!

 

Is it wrong to feel a tiny bit jealous of mum’s carer?

About a year ago, after many months of unsubtle guerilla tactics, we managed to persuade dad to get a carer in to help mum for a couple of hours a week.  For anyone who is currently considering this and struggling to convince either the person with dementia or the spouse of the person with dementia that they may need a little extra help can I share two useful little bits of advice:

1 – A very nice lady we met from the Alzheimer’s society said that if she could have one thing tattooed across her forehead it would be “get carers in early” (or maybe it was “get help early” or maybe “do not wait for there to be a crisis before you get help in“).  It obviously wasn’t all these phrases because she did not have a massive forehead.  She helpfully outlined a scenario for us that illustrated her point by suggesting that we consider what would happen if we had not initiated care and dad became incapacitated in some way (an eventuality too terrifying to contemplate).  She asked us to imagine how distressed mum would be to have a complete stranger turn up on her doorstep and demand that she accompany them to the bath (I don’t think she was suggesting that this is what most carers would actually do – I suspect they are a little more gentle in their approach).  She persuaded us that there is absolutely no benefit in waiting until you really need outside help, it is then too late to introduce care slowly and respectfully.  It’s a bit like being faced with a mille-long queue for the ladies loo at a concert or sporting event; start queuing with an empty bladder and by the time you reach the sanctuary of the portaloo you will be able to use the conveniences in a relaxed and unhurried manner.  Wait until you actually need to go and then join the queue?  That way madness, incontinence and cystitis lies. Pre-emptive steps my friends – that is the key.

2 – This one came from a consultant geriatrician colleague who suggested that a good way to introduce care is to establish the precedent of a new face about the house.  This need not be a carer initially; a cleaner, a gardener or someone to pop in and do the ironing would be fine.  It also need not be an expensive option – one of the very few benefits that mum gets (in fact the only one – I can’t remember the name but it’s not means tested and it’s for under 65’s) can be used for extra help in the home.  Dad uses the princely sum of £40 per week to pay for our lovely new carer but he could equally have spent it on any of the people listed above.  Indeed, initially he did try to pass the carer off as a cleaner to get mum used to the idea of a new person in the house (she’d always wanted a cleaner although in her past life I suspect that nobody would have come near to her very exacting standards of domestic hygiene).  As with many of the issues we have faced over the past few years, we had assumed that mum would have difficulties adapting to the idea of a carer but in reality she was as unfazed as she had been about stopping driving.  Witnessing a parent meekly accepting infringements on her liberty is not necessarily what one would wish for but it does make life a lot easier when the anticipated battle fails to materialise.

So – to summarise: get help before you need it and introduce it slowly and gently – do not feel bad about the use of deception – it is a means to an end.

Once we’d persuaded dad that we needed someone he looked into the options available.  There were two private care organisations in their local area and the first (and cheaper) one blew their chance when they came round to assess mum and proceeded to ask her lots of questions about her dementia.  This in itself would not have been too bad had dad not told mum that they were a home-cleaning company.  Clearly there was fault on both sides; it is unfair to ask a professional to enter into the duplicity you have orchestrated and it would have been entirely inappropriate for the client manager to masquerade as an expert in domestic hygiene.   However, dad felt that the situation could have been better managed and that was the end of carers company number one.  This caused mild panic for me and my sister when we realised that there was only one option left and if dad didn’t like them we were stuck.

However, the second company came up trumps and a lovely carer was found.  Let’s call her Alison (for that is her name).  Alison, it became evident, made mum smile, shared funny anecdotes with her about her other part-time jobs which included acting in commercials and taking drama workshops.  She was, according to dad, a great personality and mum soon became very fond of her.  My sister and I wanted to meet her but because we tended to ‘cover’ dates and times when Alison couldn’t look after mum, our paths didn’t cross.  Subconsciously I hoped that mum’s carer wouldn’t think badly of us.  I wanted her to know that we were close by, that we saw mum very regularly and that even thought she may not have clapped eyes on us we were very much present and involved in mum’s care. This is a ridiculous notion really because of course it makes no odds what anyone thinks – we know we are doing all we can.  But in reality nobody wants to be judged and found wanting and I have seen many examples at work where families completely abandon their more troublesome members.   I will never forget learning about the concept of ‘Granny Dumping” during my first house job in hospital.  Two or three days before Christmas little old ladies mysteriously arrive in the assessment unit supposedly  ‘Not coping’ or what we euphemistically call ‘Off legs’.  They inevitably end up being admitted, kept in for observation and discharged a few days later with most medication unchanged and no real treatment having been received.  A senior but not especially jaded registrar informed me that this was ‘Granny dumping’ – families who didn’t want granny or granddad messing up their Christmas by weeing on the sofa or getting drunk on sherry and calling the daughter-in-law a tart simply ship them off to hospital for a few days with vague non-specific symptoms.  It’s free and simple and it clearly happens frequently enough to have become a recognised phenomenon.  Good old NHS can just help us out with this inconvenient  festive problem and then we can get back to the rest of the year, ignoring granny in her residential home but not feeling guilty because it’s no longer Christmas.  I digress.

So, lovely Alison had been visiting mum for almost a year, mentioned in dispatches but never actually observed, until two weeks ago when I actually met her!  The plan was to drop mum off at home after a day at our house, Alison would arrive and sort out supper and get her settled in for the evening before dad returned from the rugby club.  I was hoping to meet her alone and unencumbered by small children but due to a combination of events involving a puppy, a muddy quagmire and totally inappropriate clothing this was not to be. Instead the full grubby entourage was in situ to greet her and bless her, she was just wonderful.  Garrulous, irreverent and as comfortable chatting with the kids as she was with mum.  We heard about her quest to find a suitable swimsuit, her thoughts on personal grooming and depilatory treatments and her views on mum’s colouring book (very handy that mindfulness is all the rage at the moment, you can’t move in most stationers for adult colouring books – adult as in grown-up obviously, not porn).  She also managed a few well targeted jokes at the children’s expense – which they loved.  Back in the car a few moments later my youngest child asked if Alison could be her new mummy, or at least an extra mummy, high praise indeed and obviously not distressing in any way to have your child ask if you could be replaced with a relative stranger.  My eldest had been a little perturbed to discover that the erratic scribbles in granny’s colouring book were actually her own artistic efforts and we had a short conversational update on the favourite theme of granny’s diminishing abilities – but in general, in spite of the mud and the dog and the fact that mum had spent the whole day with her shoes on the wrong feet I felt pretty good.  Because although I may suffer the tiniest twinge of envy when I see mum’s face light up as her friend arrives, how lucky are we to have found a person who makes mum that happy, a person who does not get paid much and could probably get away with being surly and dour if they were that way inclined but instead chooses to share her sunshiny nature with those who most need a little joy in their lives.  How utterly fantastic is it that people like that choose to become carers.

N.B. How hideous would it be now if having eulogised about how fabulous this woman is she then proceeds to rob my parents blind – sure it won’t happen – if it does then I am a terrible judge of character.

 

 

Dementia – the festive gift that keeps on giving.

Many activities involving mum are beginning to feel a little burdensome to say the least and this becomes more obvious at Christmas where ‘HAVING FUN!’ is the order of the day along with ‘SPENDING TIME WITH FAMILY!’  I’m a big fan of both of these activities and they usually coexist – but enforced fun, when you feel you ought to be enjoying yourself just because it’s the festive period, can be exhausting.  Christmas is a crappy time for many as a result of this assumed festive joy – those who are bereaved, depressed or just lonely will often feel more bereaved, depressed and lonely whilst everyone else gets hammered on eggnog and parades about in their comedy Christmas jumpers (these surely have become post-ironic now?  Just stop it please.)

One of the key moments in our family build up to Christmas that has suffered (or, shall we say ‘had to be adapted’) directly as a result of the dementia is The Girls’ Christmas Shopping Trip.  Once an annual highlight, from the time my sister and I started at our respective universities we alternated venues for our girls’ weekend.  One sister would host (often in appallingly cramped and hazardous student accommodation) whilst mum and the other sister would travel down to enjoy a weekend of budget retail therapy.  This weekend was both practical (purchases made for others) and informative (allowing us to alert sibling and parent to gifts we may like to receive ourselves).  It was a chance for us to have a few drinks and a good meal in a restaurant on the bank of mum and dad.  It was also a chance to duck out of the ‘Drink the bar dry you crazy students with your as yet cirrhosis-free livers and unquenchable thirst for cheap white-cider based beverages!!’ carnage that would inevitably be taking place in the student union.  We shopped, we ate, we had a relatively early night and woke up to prepare a Sunday lunch that did not involve Beanfeast or Pot Noodle in our unspeakably minging kitchens.

When we left University and began our proper grown-up jobs the weekend remained set in stone as a regular fixture.  We had a little more cash to spend and a slightly more salubrious venue to sleep in but the format remained the same.  We have continued to run the Christmas shopping trip, making adaptations to account for pregnancies and small babies, recently reducing it to a single day of shopping followed by dinner (telling ourselves that this was because we all now lived near each other so didn’t need to spend the entire weekend together).  However, last year things had to change.  We had abandoned the idea of an evening meal because monitoring mum’s alcohol intake was just too stressful (one glass of wine often meant the difference between limited coherent conversation and complete nonsense) and just focussed on a day of shopping in a local city.  All was well until WE LOST MUM outside Boots chemist.  Needless to say, we found her again but we couldn’t take our eyes off her after that.  We couldn’t browse.  We couldn’t wander.  We couldn’t say “You go on ahead whilst I try on these shoes that I really don’t need to buy”.  And suddenly getting round the shops was a chore.  It was damage limitation. It was trying not to lose sight of her, trying to get her to appreciate the urgency of catching the bus on time, making sure she didn’t leave her bags anywhere, helping her pay for things with her credit card by actually typing in her PIN number without looking like a predatory criminal.  We collapsed on the bus in a state of near exhaustion and only later realised that several presents purchased had gone missing.

This year we lowered our expectations further.  We went to a nearby shopping centre which felt safer.  We had no intention of buying anything for ourselves and no expectation that we would make any headway into our own monstrous lists of gifts to be purchased for husbands and children.  We went purely with the notion that we could get a gift for dad from mum so that he would have something to open on Christmas day and out of a misguided sense that we had to keep up the semblance of a girls’ Christmas shopping trip, however mutated that notion had become.  We were there for four hours including lunch and in that time there were a few mishaps, the most notable of which was the escalator refusal.  In a manner not dissimilar to horses racing in The Grand National faced with Beecher’s Brook, mum hesitated at the top of the descending escalator for just long enough to allow my sister and I to get on whilst she remained paralysed at the step-off point.  We realised halfway down that she was not with us and looked round to see a queue of people forming in the bottle neck behind her.  My sister then legged it as fast as she could down the escalator and back up the neighbouring one.  She was not fast enough however to intervene in the unfolding drama involving a well-meaning fellow escalator-passenger who had noticed mum’s plight.  This lovely woman, also in her sixties, tried to go back up the descending escalator (no mean feat) and fell up the stairs in her rescue attempt.  I had reached the bottom by this point and just gazed on as the catastrophe unfolded.  Thankfully nobody was hurt, mum (completely unperturbed and oblivious to the chaos) remained on the first floor until my sister reached her and accompanied her to the lift and we made a mental note to stick to traditional stairwells in future.

Another less obvious but somehow more distressing consequence of the dementia became increasingly apparent during the remainder of the trip.  Mum’s complete disinterest in the opinions or feelings of others.  As I have said in previous posts, mum was a very considerate person.  She was genuinely interested in other people and genuinely interested in shopping.  As a result she was brilliant at purchasing gifts, particularly for her daughters.  Many was the Boxing day that cousins gazed in awe at our especially fashionable seasonal attire and friends often lamented the sensible woolens they had received from their own mothers.  We had high street brands, we had cullottes and puff-ball skirts and reversible jumpers, all at the right time (one does not wish to be too far ahead of the fashion curve when still at school).  Mum loved buying pretty things and having two daughters gave her ample reason to indulge her retail urges (even if we didn’t really realise how lucky we were because actually I wanted to wear a dutch airman’s trench-coat from the charity shop).  Over the years the interest in shopping has waned but so has the interest in buying for others.  I thought that the trump card of this shopping trip might be looking at clothes for her granddaughters.  I understood that she wasn’t fussed about what she was buying dad for Christmas – it is hard to be enthused about tweed jackets and over-trousers to wear when watching the rugby – but I did think that looking at pretty little dresses and tutus might provoke a spark of interest.  I was wrong.  She no longer has any interest in buying presents, no interest in clothes and no interest in the joy of giving.  What was especially frustrating (and what, with hindsight we should have dealt with at the start) was the obsession with getting herself a pair of jeans.  She hadn’t grasped that this trip was about her buying presents for others (a deliberately limited number of others) and every shop, every rail we looked at provoked a querulous “jeans?” followed by a cross expression.  As I say, with hindsight we should have tackled the jeans issue when it became apparent that this was her focus but we  had to make sure that certain purchases were made – dad had to have a present from mum and the grandchildren needed presents.  Dad really did not want to have to take mum shopping a second time so these things had to be bought today.  We forced her round the shops.  We made lightening quick purchasing decisions “Does it look OK?  Is it the right size? Is it something that this person may vaguely appreciate? Yes?  Then lets buy it immediately”.  We then faced a near-mutiny when we realised we were out of time and had still not made it to the denim section of any shop.  I apologetically explained that we had to get back to the car park in order to get home in time to pick the kids up from school and that maybe the jeans would have to wait until one of her shopping trips with her lovely and long-suffering friend Mary.  She was incensed.  She was really, really upset and quickly adopted the pose of a truculent child who had no intention of going anywhere.  We had to look at jeans NOW.  Thankfully, still in M+S despite the escalator debacle we raced to the jeans section, grabbed the first pair we could find and proceeded to the check out.  A quick discussion regarding the problem posed by paying using one of our debit cards if the jeans did not actually fit and needed to be returned ensued.  My sister queued up, in the rush mum left her handbag behind….but we found it again…. and we sprinted (an approximation of sprinting you understand) to the car.

All was well.  We got back in time to collect the children and I did not have the burden of being a terrible mother in addition to being a terrible daughter.  No presents went missing and on Christmas day everyone was fairly happy with their gifts.  Mum has still not tried on the all important jeans (indeed she appears to have forgotten all about them) and my sister and I are recovering from the combined trauma of escalator armageddon and denim-based tantrums.  Next year for the girls’ Christmas weekend we’ll go for a single shop, a single storey, perhaps even a single rail of garments.  We will buy mum something she wants and then go home for a lie down.

Happy Christmas!!

 

 

 

How much fun is someone with dementia allowed to have? Safety and autonomy when capacity is compromised

We’ve recently come back from a family holiday complete with water slides and outdoor adventure areas, where a few issues arose regarding mum’s safety.  My most recent blog post ‘Driving us mental’ addresses a similar topic but is more concerned with the safety of others (children in her care and other road users).  I had the idea in my mind to post something about the difficulties in striking a balance between individual rights and personal welfare and I found this thought-provoking blog post from Kate Swaffer addressing the very same issue with respect to residential care http://kateswaffer.com/2015/11/01/safety-vs-autonomy-in-residential-care/

What is most interesting to me about Kate’s post (and the comments that follow) is that through trying to do ‘what is best’ for a loved one with dementia, in most circumstances we err on the side of ‘keeping them safe’ and that this may be potentially more damaging.  On our family holiday there were a few striking instances of how potentially dangerous situations can arise and how we differ in our response to them.  The first incident occurred on a water slide:  Mum can swim and enjoys being in the water much more than she used to (now thankfully untroubled by whether it will ruin her hair or make-up) and my dad suggested that we all went down the individual water chute.  This was a fairly standard plastic tube slide with a few twists and turns terminating in a shallow pool for disembarkation.  There was a height restriction to deter small children and advice to avoid if heavily pregnant etc but otherwise it was billed as a mildly exhilarating ride that all of us had been on several time earlier in the holiday.  My sister and I were initially a little sceptical as to whether mum wanted to go on the slide but dad gently jostled her in the right direction and she seemed amenable to the idea.  She had already been down one of the double chute slides with him on an inflatable and seemed to enjoy herself so we thought we’d give it a go.

My sister and I went down first and waited for mum.  What we hadn’t banked on was that whilst she can swim safely and can sit upright going down a slide she clearly couldn’t then push herself up out of the shallow pool at the end.  As a result, we saw mum emerge, lying flat on her back as she plummeted into the spray and then we watched in escalating panic as she remained on her back, face covered in water, arms thrashing about, trying to get purchase on the sides of the slide.  The basic reaction of pushing one’s hands against the floor to propel your upper body into a seated position and thereby not drown was no longer functioning properly.  After a few seconds of frozen horror we rushed to haul her up out of the water.  She walked unsteadily out of the pool supported by a daughter on either side and we waited for dad.  In the meantime we attracted curious looks from other holiday makers but generally the whole episode had passed unnoticed.   Dad slid out a few moments later in his usual bombastic fashion (accompanied by lots of noisy laughter and a massive tidal wave).  We tried to impress upon him the severity of the narrowly averted calamity we’d just witnessed but seeing mum stood there, in one piece, albeit a little bedraggled, he was fairly dismissive of our concerns.

A similar incident occurred later that day on the water rapids.  Unpredictable at the best of times, the rapids can throw you about a bit and disorientate even competent swimmers, although they are shallow and in theory an adult who could sit up should not be in any danger.  It was impossible to keep hold of mum as we went down them and she clearly had knocked into some of the hills and turns (as we all did – I have the bruises to prove it).  She looked traumatised as we emerged, as did the lifeguards, although none of them had intervened.  Passers-by enquired whether we needed assistance and some threw fairly withering looks our way implying that we had wilfully inflicted psychological damage on an elderly frail woman (except of course she is neither frail nor elderly but relatively young and physically robust which is where the confusion arises).  We sat her down, got her a coffee and peace was restored but I couldn’t shake the uncomfortable feeling that we had pushed our luck too far.

Later still that same day we went into the pool with the wave machine.  My sister had previously rescued mum from what were pretty substantial waves when she slipped and panicked so, in view of the preceding events, I was nervous as to how we would manage – but dad insisted that mum liked the waves and in we sloshed.  The waves started coming, at first minor ripples, then more significant undulation and finally crashing breakwater monsters and mum was bobbing about smiling away.  She looked crestfallen when they started to taper off again and exclaimed “Oh!  Is it over?” in a genuinely disappointed voice.  I was struck by how easy it would have been to have assumed that this particular scenario would have been too much for her – and how close we came to missing out on a good experience – bearing in mind that these opportunities are now limited.

Of course the easiest and safest thing to have done all holiday would have been to have sat mum in a chair, given her a warm drink and told her not to move while we all leapt in and out of the water and threw ourselves down chutes and whirlpools but would this have been right?  Would it have been better than exposing her to near-drowning?  I simply don’t know.  Looking back now I could construct a list of things mum enjoyed, the things she seemed ambivalent about and those that were simply too fraught with peril to pursue again but it was only by trying them out that we established her limits and this would be true of anybody.  Any parent knows that sinking feeling of having set a child on a path of something we would have predicted was well within their capabilities only to be presented with a tearful howling infant at the end of it.  Or to have resisted a child’s determined entreaties to let them go horse-riding / on the dodgems / diving with sharks only to find that they go and do it anyway and LOVE IT!  Of course if we go on exactly the same holiday next year mum’s limits will have changed again and we will have to experiment to find their new level but that will also be true of the children and maybe some of the other adults (personally I have made a mental note to avoid some of the geysers on the lazy river which came a little too close to colonic irrigation for comfort).  My sister and I are sometimes surprised and even shocked by how much dad pushes mum to try things out and test her boundaries but in a way I admire his gumption.  He is determined that mum continues to experience life in all its exhilarating, whitewater glory and if that involves a few nail-biting moments then so be it.

Driving us mental – Dementia and the DVLA

One of the biggest issues we had to tackle in the context of mum’s increasingly erratic behaviour was that of safety.  It seems terrifying to consider it now but even with a diagnosis of Mild Cognitive Impairment and an ever decreasing range of coping mechanisms mum was still driving.  She also continued to collect my youngest child from preschool, bring her home and make lunch until relatively recently.  At some point prior to the MCI diagnosis I must have made the decision that I was not happy for mum to be driving with the kids in the car although that was never explicitly expressed – I just managed to engineer it so that the need didn’t arise – she walked to and from preschool and once back at our house there was no reason for her to leave until dad came along to pick up the older kids from school.

The safety issues regarding childcare were, in a way, easiest to mitigate.  As it became obvious that mum was less able to cope with basic tasks we found creative ways to adapt.  I became concerned about mum using our oven so we ensured that lunches were cold and involved minimal preparation (even so, I’m not convinced that my youngest child wouldn’t have ended up malnourished if it hadn’t been for her overwhelming survival instinct to eat her own body weight in cheese and sausage rolls if required).  We substantially reduced the number of times that mum was left in charge of the kids – again this was never explicitly discussed but my mother-in-law tactfully stepped into the breach without complaint and what had been a once fortnightly concern for me became a once a month issue.  This of course made things more difficult for mum on the days that she did help with childcare because the routine was less familiar than it had been.

It probably seems incredibly naive and selfish now to have continued to ’employ’ mum in this way.  We should perhaps have enlisted the help of a professional but the practical aspects of the situation did not allow it – no childminder would be happy to commit to a solitary half-day a month, it would be disruptive for my child and I genuinely wanted to reinforce the connection between my parents and my children that the current set-up allowed.  I repeatedly checked with dad that he was happy to continue with the arrangement and he seemed to welcome it as a distraction for mum, he felt that it gave her ‘something to do’.  We carried on in this fashion for a while, increasingly uneasy but unable to see a clear end-point until one day there was the phone call that sealed the deal:  I was at work, halfway through morning surgery when my mobile rang.  It was preschool.  They said that my mum had arrived to pick up my child at 10.30 – two hours early.  Because the preschool leader had recognised mum she had been happy to let my child go with her, assuming that there must be some prior engagement that necessitated early collection.  If it hadn’t been for the fact that I had briefly mentioned mum’s MCI diagnosis a week previously to one of the other preschool staff who happened to be working that day then my child would have been handed over to granny in the usual fashion.  This in itself would not have given significant cause for concern but mum had, on this occasion, driven up to preschool and I knew she did not have a booster seat in the car (usually she drove to my house, parked and walked up to preschool with the pushchair).  In all likelihood, had preschool not called me, mum would probably have driven my child back home without a booster seat, or indeed a seatbelt, and no harm would have come to anyone.  But there were so many ‘What if?’s rolled into that scenario with results that ranged from minor distress to death and carnage on a massive scale. The simple five minute journey to and from preschool was beset with peril as soon as you added a vehicle into the equation:

Well intentioned but cognitively compromised adult

+

Tired, small child

+

2 tonnes of metal on wheels travelling at high speed

= ?

 My immediate and overwhelming reaction was that the current arrangement could not continue.  I had what is sometimes described in medical textbooks as ‘an impending sense of doom’ (a wonderfully evocative phrase).  After dealing with immediate situation (preschool had made mum a cup of tea and were happy to keep hold of her until dad arrived to take both grandchild and granny home) plans were put in place to ensure that mum was never left with the sole responsibility for my kids again and we all breathed a collective sigh of relief.  It sounds awful, the implication that my mother was an active danger to her own grandchildren and I do want to stress that nothing untoward ever happened to them whilst they were in her care.  In fact the only time my children have sustained injuries or had mishaps befall them has been under the watchful eye of me or my husband.  It is simply a question of weighing up the probabilities of risk and we felt that collectively we had pushed our luck as far as it could go.

Once the childcare issue had been resolved we then had to deal with the driving.  It was one thing to say ‘Well, I don’t want her driving the kids anywhere’ – to then go on and say ‘But it’s OK for her to be out on the road unaccompanied’.  The implication was that if she was not safe to drive with children in the car then she probably wasn’t safe to drive full-stop.  However, as anyone who has driven a car containing three small children will realise, this activity often requires superhuman powers of concentration and could be classed as a much more advanced driving skill akin to helicopter piloting / commandeering a tank / navigating an HGV through a blizzard.  Mum not being safe to drive the kids did not necessarily mean that she was no longer capable of driving on familiar roads in daylight hours and normal weather conditions.  We had no direct evidence to stop her.  We had no clear guidance from the DVLA or the memory clinic as to when to stop her although it had been mentioned as a potential ‘issue for discussion’.  There had been a couple of incidents; one prior to any diagnosis where mum had parked the car on a steep slope and the handbrake had ‘failed’ (not been put on?) causing the car to roll back down the slope into the road, taking mum with it and nearly crushing her against the garden wall (as it was she was lucky to walk away with a humeral fracture).  There had also been the incident post MCI diagnosis when mum had come to stay at our house and had been about to drive home in the morning as it started to snow.  The change in weather had completely thrown her and she sat in the car for almost half an hour, windscreen wipers jolting furiously, hazard lights flashing, radio blaring but unable to operate the ignition until we called her back inside and suggested she wait for dad – interestingly, as soon as dad arrived and the snow had stopped actively falling she happily got back in the car, started it with no problem and pulled off the drive as cheerily and competently as a professional chauffeur.  More recently visiting cousins had expressed some concern about being in the car with mum after dark.  My sister and I relayed these concerns to dad.  He responded with examples of mum’s reliable driving record, the fact that she often knew the directions better than he did, the fact that she routinely managed to drive to our house, the shops, the hairdressers without incident, but he too was concerned, he just didn’t know how to handle the massive confrontation we feared if we physically took away mum’s car keys and thereby any shred of remaining independence.

In the end it was an absolute doddle and for anyone reading this who is currently not sure how to negotiate the difficult decision to confront their loved one in this regard, let me assure you that had we known it would be so easy we would have done it much sooner and saved ourselves a great deal of anguish about public responsibility versus individual autonomy.  Sorry if it has taken an enormous trawl through the wooly ramblings about childcare to get you to this point but from a practical point of view this is what we did:

Dad told mum that the renewal had come up for the car insurance and that because of the diagnosis the premiums would be too high to reinsure her.  This was not an outright lie and fitted well with the fact that she knew they had recently had similar issues with travel insurance.  He simply said that she wouldn’t be able to drive any more and she has not mentioned it since.  There was no wrestling over keys, no emotional scene.  It just happened.  And now dad drives her here, we drive there, she gets taken to the shops and the hairdressers and we can relax confident in the knowledge that she is safe and that the British public are safe.  The take home message must be this – if you are uncomfortable about your parent driving and you feel it is unsafe then stop them.  It may be much easier that you anticipated and even if distress is caused surely it is worth any amount of anguish to avoid the death of innocent pedestrians being on your conscience.