Crazy in love – Dementia in a marriage



Forgive the title please – especially all those out there who are intent on subjecting the topic of dementia to stringent semantic rules as if the disease wasn’t enough to contend with.  I know people with dementia should not be referred to as ‘Crazy’ – it’s just my tiny little joke combined with my love of Beyonce – OK?  But it interests me – the whole notion of how a relationship works when one half of the couple undergoes a significant change in mental state and personality.  This is true in schizophrenia and other psychotic conditions as well as dementia.  It can also happen following significant brain injury, particularly frontal lobe damage.  The man or woman you once loved is simply not the same person any more (I won’t say ‘literally not the same person‘ because there is literally nothing more annoying than people using ‘literally’ incorrectly.  My husband once came home from work apoplectic with rage having been told by a junior psychiatrist that a shared patient was ‘literally out of her mind’ when clearly that is impossible).

I digress.  My question (posed solely to myself) is If the person you love has altered on a fundamental level how can you still love them?

I can understand with a parent -child relationship how love endures even in the most devastating circumstances.  Maternal and paternal bonds are deeply embedded and over-ride much in the way of logic and practicality.  I have seen parents who clearly still love their children deeply even though psychosis or injury has totally changed their child’s very nature but surely this is because we don’t choose our children based on their personality (we clearly don’t ‘choose’ them at all).  We do however, choose our partners.  True, some do not use personality as a key component of that choice – a bit of eye candy with the emotional range of a teaspoon may be a perfectly reasonable life-partner for some but I like to think that the majority of people who end up in a long term relationship do so because they share at least a few interests – there are aspects of that individual’s behaviour, values and beliefs that chime with their own. And if that behaviour changes, if those values and beliefs change, if the person who hated country music or rollerskating or beetroot suddenly becomes a passionate advocate for these things then what do you do? Become a rollerskating, beetroot-loving, country music fan yourself?

My mum used to hate all that war-time music and schmaltz – the Vera Lynn / White Cliffs of Dover / Dad’s Army fodder that people of a certain age enjoy.  To be honest she really loathed being around old people – I’m not sure if she was worried some of their elderliness would wear off on her – she was fixated on not looking old or getting old.  She had seen her own mother develop osteoporosis and become increasingly debilitated and dependent which may explain some of the aversion but I suspect that she was also a little squeamish about the physical problems associated with ageing; the incontinence, the noisy eating, the false teeth, the hairy chin.  So when dad took her to a music session (a ‘Singing for the Brain’ type group – prompted by me and my sister), introduced her to a circle of octogenarians and heard the opening strains of “We’ll meet again” he was dubious about the likely benefits.  But Lo and indeed Behold!  There she was, clapping along, singing in the way that adults usually only do when they are sure nobody else can see them; full blast, out of tune but really feeling the joy of the music in a way that we’ve never seen previously.  She was the same at the recent pantomime we went to, roaring with laughter at the slapstick, joining in with the “he’s behind you” while my dad, who is now more habituated to the personality changes, gave a small smile and nod in reply to my quizzical expression, as if to say ‘I know it’s not her anymore but at least this person sat next to me seems to be enjoying herself’.


I think ultimately this is how dad has reconciled himself to the situation.  His life-partner, his great love has died.  He is, in effect a widower living with a a woman who needs his care and companionship and who still, in her own way, loves him.  She follows him round the house, she seeks him out when she is confused by something or needs a translator and she misses him when he leaves (although she can be very easily distracted).  He is now much calmer and more accepting of his new role.  For his part he ensures that her physical needs are met, she is fed and watered, kept safe and entertained.  Does he still love her?  Who knows.

Finding out that the person you share your life with has dementia is the same as finding out that they have any terminal illness and yet, partners and family members of those with dementia are not able or allowed to grieve in the same way as if perhaps they had been diagnosed with cancer or heart failure (see the study linked to “An angry rant”…).  If your partner has a terminal illness that does not affect their cognitive function then your physical attraction to them may be compromised by their increasing debility but your connection with them as a companion continues.  Whatever it is that links us to our soulmate, whether it be spiritual, emotional or intellectual endures until the time of death (and potentially beyond, in our memories).  I genuinely wonder now whether there is anything bonding my parents together other than her practical needs and his sense of moral duty.  And yet, I hope desperately that there is something more so I examine the evidence searching for clues.

He can’t find her physically attractive (and lets face it, this is not a topic I want to dwell on anyway because who wants to contemplate that aspect of their parents lives – dementia or no dementia?) but I hope he remembers how good she used to look and how much effort she made to keep herself in shape.  He can’t rely on her for emotional support or converse with her as an equal but he is proud of her small achievements (in a way that I cannot bring myself to be because I still focus on the deficit, to my discredit).  He is protective of her feelings even if there is little evidence that she needs this protection – he is alert to potential distress and seeks out physical contact for her by encouraging the children to give granny a cuddle when they say goodbye or snuggle up to her on the sofa when they’re watching TV.

So perhaps the depth of feeling is still there even though the nature of the relationship has changed.    Compassion has replaced passion.  Silent companionship has replaced conversation.  Shared goals and equality have been replaced by a need to nurture and be nurtured. Caring for someone does fulfil an emotional need in all of us and it may be that this aspect of the new role compensates very slightly for the loss. I do find that so many of these blog posts end with me scrabbling around for minor consolation – sometimes I suspect I am fabricating a scenario or an explanation purely to make myself feel better.  At the end of the day, we are where we are.  There is no alternative, there is no point in questioning how dad feels about mum because he would look after her irrespective of his feelings.  Would I want my husband to have to do this for me?  No.  Would he do it?  Yes.  That’s what we sign up to isn’t it?  Sickness and Health.  We just hope that the horror of the sickness does not completely erode the joyful memories of healthier times.


There’s a thief in the room….



There’s a thief in the room

And she’s stolen my mother,

Replaced her with someone

Entirely another.


The theft was insidious,

Polite and discrete,

But a crime nonetheless,

Absolute and complete.


I ask of the stranger

“Now what have you done,

With the wonderful woman

Who once was my mum?”


But the thief smiles blandly,

She sits in her chair,

With her oversized clothes

And her Special Needs hair.


Who thought it was right

To see us so tormented,

By watching our mum

Become slowly demented?


And where is the justice?

And what’s the defence?

This swap we’ve been given

Is poor recompense.


The cognition of friends

Is still unimpaired,

Part of Life’s Lottery

That their minds were spared.


They travel, spend money,

They laugh, they converse,

They pity my mum and my dad

Which is worse.


“We don’t need your pity”

I want to explain,

“We simply need something

To fix up mum’s brain”.


So I dream of a future

Where smart drug designers

At last put a stop

To this bitch called Alzheimers.


Sorry, that ended up becoming a bit angry but like a good British woman I tamped down my fury and turned it into jolly rhyming couplets instead.  For anyone seeking to emulate my poetic genius and struggling to find words to rhyme with Alzheimer’s may I suggest: Recliners, Jemima’s or indeed Vaginas.

A Weighty Issue – Obesity and Dementia





My sister and I recently took mum to a spa for the evening, and whilst it was possibly not the relaxing experience that the spa ethos suggests, there were at least no major incidents and we returned home in one piece.  However, a very real issue had presented itself as soon as mum set foot on the heated but still damp and slippery floor of the spa centre – if she had fallen how on earth would we have got her back on her feet? The realisation dawned on both of us as mum took her first few tentative steps.  There was a significant chance of slipping (as demonstrated by a perfectly able-bodied woman behind us who shrieked as she lost her footing but self corrected without incident).  Mum did not have the advantage of being light on her feet or that of being able to correct her posture to avoid a fall, if she had lost her balance she simply did not have the reflexes to regain her centre of gravity without hitting the deck.  The bigger issue was that if she had gone down she would have stayed down.  It is unlikely that even the most robust of spa attendants could have shifted her  without structural equipment along the lines of winch and crane – partly because of her inability to assist in such a procedure but mainly because of her now portly form.

Mum has gone from a size twelve to a size 22 since the dementia diagnosis.  What is most shocking about this is the clear force of will required for anyone to stay slim.  Mum must have spent her whole adult life watching her diet if all it took was a few years with her eye off the ball to put on seven stone.  It doesn’t bode well for an already hefty society if people with dementia, freed of concerns about their weight from an aesthetic point of view, are able to eat whatever they like whenever the mood takes them.  The combination of dubious meal etiquette (mum has been known to reach over at the meal table to take food off one of the kid’s plates more than once), poor decision-making (saying yes to everything that is offered whether hungry or not) and an increasingly sedentary lifestyle leads to a perfect obesity storm.   And whilst this was once merely an extension of the deterioration in mum’s appearance, it is now a care issue.  We cope with the fact that she now resembles a ghastly inflated version of her previous self. We managed the expanding waistline by purchasing increasing sized elasticated garments, ginormous knickers and tent-like tunic tops.  Whilst she changed from a slim attractive woman to a doughy lump in front of our eyes it was distressing certainly but now we have practical challenges to contend with – the luxury of fretting about how she looks has been superseded by worrying about how to keep increasingly deep skin folds and crevices clean, taking care of basic hygiene and staying mobile.  We’ve already had one incident where mum got stuck in my sister’s bath and needed two people to haul her out, this was a couple of years ago and she is, if anything, bigger and less able to physically assist in any similar extraction process now.  I’ve worked in the health service long enough to know that carers and nursing staff knacker their backs on a daily basis by lifting even the frailest and most featherlight of people. Somebody mum’s size is going to present a real health and safety risk in a formal care setting and before we get to that stage my dad’s back is likely to have been put through its paces.  The scenario whereby mum falls at home would currently have the following potential outcomes:

  1. Dad is home and manages to get her back on her feet – despite this being the best option it is still likely to be painful and traumatic to both parties’ shoulders, backs and knees
  2. Dad is home but cannot lift mum.  Paramedics have to be called to assist.  This would in no way constitute a medical emergency and could therefore result in a long stay on the floor.
  3. Alison or one of the carers is at home but rightly predicts that to attempt to lift mum would be too great a risk to themselves.  Lengthy delay waiting for dad or paramedics (or both, in a manner similar to long line of people pulling out The Enormous Turnip).
  4. Mum is at home alone and sits tight on the floor for an unspecified period.

None of these are ideal and things are only going to get worse as her mobility decreases and her instability and subsequent risk of falling increases.  Clearly we need to get her weight down somehow without it being too traumatic or obvious a process.  We have tried reducing portion sizes but she tends to want whatever is out on the table and there is a natural reluctance to stop her enjoying what is essentially one of her only pleasures in life.  Similarly, if she asks for a glass of wine with a meal she will neck it like a tequilla slammer and we let her, anxious not to deny her a ‘treat’.  I feel similar to the parents I sometimes see in surgery who continue to overfeed their morbidly obese children.  There is a desire to indulge those you care for, to let them trough on smilingly, filling their faces way past the point of chubbiness and into the dangerous realm of actual physical harm.  It is interesting that we would never encourage loved ones to overdose on drugs or smoke more cigarettes or drink alcohol to the point of liver failure but where food is concerned there is a deeply rooted need to nourish and feed that probably stems from a time when resources were scarce.  Anyway, I digress and fear not!  I have a plan…

One of the advantages of the advancing dementia (and I say that advisedly, knowing that there are very, very limited advantages here) is the fact that normal biological triggers no longer seem to have the same effect.  Where once mum would have felt hungry and therefore made herself a snack or a meal now she will only feel the need to eat if someone is eating in front of her or if food is prepared and placed before her.  She has neither the skills nor the inclination to seek out her own sustenance.  This can be used to our advantage by simply omitting weekday lunch.  Currently dad leaves a meal out for mum to eat at some unspecified point during the day (lets say lunchtime for convention’s sake but in all honesty the meal is probably consumed whenever mum finds it, irrespective of time of day).  I cannot see that mum would be any worse off for not having this meal.  I genuinely do not think she would feel hungry – her level of activity during the day is at best comparable with an elderly sloth so her calorie expenditure is minimal.  The social aspects of eating the majority of her meals with dad and big family meals with us can all continue and hopefully her weight will slowly start to reduce.  And hoorah – the dementia diet is born!

Please note, any nutritionists out there, that I am not advocating this as an ideal solution.  I will not be bringing out a range of books and menu ideas based on my novel concept of ‘missing out meals you’ve forgotten you needed’ but it is a start.

Dementiafest – taking mum to Camp Bestival


One of the very few positive aspects of mum’s dementia to impact directly on dad’s life has been the discovery of music festivals.  Dad has always loved music; loud music, live music, local music, whatever.  He has instilled in us a fairly comprehensive knowledge of popular music dating back to the sixties (enhanced by a Saturday job working on the record counter in Woolworths – there’s little I don’t know about the top forty chart singles from the early nineties – Chaka Demus and Pliers anyone?) but the experience of that music has usually been through the medium of radio, Top of the Pops or direct ownership of vinyl, cassette and CD.  We have occasionally attended concerts as a family but these events seemed to coincide with that unique period of teenage tension where you can’t afford a ticket yourself and have no practical means of getting to the venue but being there with your parents is toe-curlingly embarrassing – so we only did it a few times.  We were certainly never a festival-going family – that would have been unthinkably bohemian and not at all in keeping with our tupperware-party / cul-de-sac / Middle England existence.  Even at university, although we probably went to more live music events, neither my sister nor I ever felt the pull of Glastonbury (far too expensive even then) and camping in any form has never been high on my list of enjoyable ways to spend a weekend.  There is nothing about holidaying under canvas that would not be significantly improved by a bed, a roof and decent sanitation.

Dad however has always been happy to rough it.  He often went on rugby tours armed only with a toothbrush and a clean pair of pants, sanguine about the prospect of sleeping in a corridor, on the deck of a ferry or even in a puddle outside a chip-shop (I’m not sure that he has done this but I wouldn’t put it past him – he’s not an actual tramp by the way – just to clarify).  In fact, it appears now that the only obstacle to dad embracing the festival double-whammy of loud limitless music and questionable domestic arrangements was mum, to whom the word ‘holiday’ meant colour co-ordinated pastel outfits, a la carte menus and slowly roasting under a mediterranean sun whilst basted in Hawaiian Tropic.

So when my Uncle M called dad last year to invite him to the Isle of Wight festival my sister and I encouraged him to jump at the chance (the one caveat being that he was to be very careful about inhaling or consuming anything offered to him by Uncle M prior to or during the event – Uncle M having achieved cult status in my family as the only grown-up we knew who actively encouraged my cousin to grow pot in their greenhouse).  Dad duly went along to the Isle of Wight and we received hilarious text updates along the lines of “Currently in the mosh pit for Sticky Little Fingers” etc.  He returned a few days later with a fake tattoo, a hoarse voice and more importantly, a spring in his step that we haven’t seen for ages (not the result of Uncle M’s pharmaceutical interventions – purely the music and ambience).

He didn’t immediately jack in the job, buy a camper van and head for Woodstock but there was palpable enthusiasm about a return to the IOW this year, along with a couple of other smaller music event so we bought him a one-man tent and festival survival kit as standard.  And then, last month I discovered that we would all be in Dorset on a family holiday the same weekend as Camp Bestival.  Our accommodation was but a ten minute car journey from Lulworth Castle meaning that we could go to Bestival for the day and be back in our beds by midnight as opposed to languishing under canvas, caked in our own sweat and grime – hoorah!  The idea of being able to ‘do’ a festival without having to camp was very appealing and  the kids were desperate to see Jess Glynn who was headlining on the Friday. I ran it past my previously festival-sceptical husband who thought it was a great idea and then past dad who immediately proposed that he take the kids and camp with them for the whole weekend.  I suggested that a one-day introduction would suffice, thus making mum’s attendance possible (that and I had a few reservations about leaving dad in charge of my eight and ten year old for the weekend ‘Off you go!  Granddad will be right here in the beer tent!’ etc).

We arrived at midday on the first day of Camp Bestival and admired the middle-class paradise spread out before us:

  • NCT nappy-changing area? Check.
  • Clean compost toilets with plentiful loo-roll and alcohol hand gel?  Check.
  • World-cuisine served on biodegradable yet attractive tableware?  Check.
  • Couples seated on tartan blankets sipping chilled Pinot whilst little Tarquin snoozes peacefully beside them tucked up in his custom-made trailer?  Check.

People had told us that it was the most family-friendly of festivals and the bonus of an event set up to cater for the needs of young children is that it often happens to be quite dementia-friendly too.  The check-in was a case in point:  extra wrist bands for kids linked to a master-list of parents’ contact details should anyone wander off – obviously ideal for more senior potential wanders too and nobody batted an eyelid when we asked for one for mum – she was quite taken with it!  The other massive advantage was that people were so relaxed about erratic, noisy or challenging behaviour from their toddlers that a sixty-five year old woman breaking into a dance routine, laughing at the wrong point in the children’s comedy show or wandering up to pushchairs to pull faces at the babies of total strangers was accepted with equanimity.  The whole experience was very liberating for all of us.  There were a few moments of the usual comedy/tragedy – the compost loos where one had to pour a cup of earth into the pit after doing the necessary were avoided in preference for your more standard flush portaloo with mum and she did nearly wander into the urinal area (but in fairness, I did that too thinking they were water fountains).  We also had a few “I WANT THAT ONE” moments regarding food / beverages / hair-garlands / ethnic jewellery and trying to get mum from seated to standing on the grass by the main stage was a challenge that required a good ten minutes planning and a lot of time spent on all fours in transition phase but it was all tolerated good-naturedly by our immediate neighbours.  I was in charge of taking the two  more vulnerable members of our party home (mum and the four-year old) but they both lasted until Squeeze had left the main stage and there were no tears before bedtime – from them or me.

One moment stays with me from that day – whilst watching DJ Yoda (as you do) my youngest child decided she wanted to do a kissing Mexican-wave (not a craze that I think is likely to take on) whereby she kisses Daddy on the cheek, he kisses Mummy, Mummy kisses Granny, Granny kisses Granddad etc – all went well from the Granny point of view with a little prompting.  A few moments later we were stood facing the stage swaying along a little to the music, dad reached over to hug mum and she kissed him again.  It was as if she had remembered that it was something nice to do – a way of expressing that she felt loved and included.  I’m probably reading far more into it than needed but it brought a tear to my eye nonetheless.


However, lest we all get carried away on a wave of sentimentality I shall leave you with a joyful song about posh festivals from the genius Adam Buxton – enjoy!

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

IMG_0222_2 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 anticipated 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 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




















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!