Getting Worse – peaks and troughs or just troughs and more troughs

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Most people who care for someone with dementia will tell you that there are periods of deterioration followed by plateaus where the disease seems to pause to catch it’s breath before destroying another valuable part of the cerebral cortex.  These dips and plateaus vary and the period of stability for one person may last years whereas another will seem to move on to further deterioration in a matter of days.  We were told when mum had her formal diagnosis that the rate of decline in Alzheimer’s is fairly consistent and the disease follows a similar trajectory, so that a person who has deteriorated rapidly is likely to continue at a similar pace and someone who has gradually lost function over years will probably decline more slowly.  The punchline of the whole ‘revealing the diagnosis’ chat with the specialist nurse came when she said “In a couple of years, when she’s in residential care…’  I left that consultation prepared for the fact that mum could be in a home by the age of 65.

Mum is now 66 and I would say we are doing quite well but this is a term one uses advisedly in Alzheimer’s – my version of ‘quite well for a lady of 66 years of age’ is not going to be the same as yours.  The single factor keeping my mum out of residential care is my dad.  He is the lynchpin of the entire construction and if he were even slightly incapacitated the whole house of cards would fall down (excuse the mixing of metaphors but you get the picture).  Mum is still able to be left on her own for short periods of time although I have felt increasingly anxious about leaving her alone in my house even for a few minutes (a dilemma nobody wants to have – do you lock your mother in the house to stop her wandering knowing that you are also preventing her escape in the event of a fire? – on balance fire seems less likely than wandering but I would still feel like a prison guard as the key turned in the lock).  We had, up until recently, been managing the occasional night with mum on her own at home – we had a plan whereby my sister or I would drop mum off at home on a Sunday evening, Alison the carer would pop in for an hour or two later the same night and get mum into bed and dad would be home Monday morning.  This worked well for music festivals or rugby tours where my sister and I were happy to have mum for the majority of the weekend but struggled to cope with Monday morning, getting to work and taking kids to school with mum in tow.  However, as this year’s festival season approaches it seems by unspoken mutual consent that this is no longer possible.

 

The last time I went to pick mum up on a sunny Saturday morning she had already been on her own in the house for a couple of hours (dad had got her up and dressed and then left early.  I pulled up on the drive and noticed that the front door was open.  Initial panic gave way to relief as I saw her pottering about inside the house and realised that she wasn’t shuffling along in her slippers half way down the dual carriageway.  I got her into the car with the kids and did a quick sweep of the house to make sure the cat was out and the windows were shut.  In the kitchen I spotted a full cup of tea on the side which I moved to the sink to empty.  As I did so I noticed an open bottle of Baileys (other delicious cream liqueurs are available but let’s face it, they’re not the same) on the counter next to the kettle. I looked more closely at the mug – tea it was not.  Instead, a mug full of Baileys with a few coffee granules floating on top.  It had barely been drunk and I suspect that mum had simply fancied a liqueur coffee (at ten in the morning – but if I had dementia I’d see that as a reasonable perk) and got a little confused as to how to construct the beverage.  She’d then either tasted it and realised it wan’t right or simply wandered off and forgotten about it.  Either way, no harm done, but if she had managed to slurp her way through the entire mug she’d have been absolutely hammered.

Although the episode made me smile and we went on to have a lovely weekend, it did cross my mind that there had been two potential ‘near-misses’ in the space of a couple of hours at home alone.  It seems pure good fortune that mum hadn’t wandered straight through the front door and under a car or drunk herself into a coma during that short period of solitude.  Added to that the fact that she is now entirely unable to communicate beyond single words, hand gestures and pouting – if she wandered and was found it would be almost impossible for a stranger to get her to safety.  So, aside from needing a medic-alert bracelet (writing this has reminded me we MUST get one) there are now genuine safety concerns starting to emerge and steps that have to be considered.

  • Are we at the point where we need more care? – Yes
  • Could dad cope with being stuck at home 24/7 with only his demented wife for company? – No
  • Could my sister and I take on more of the burden? – Yes, but at significant detriment to our own household harmony, children’s wellbeing and careers
  • Could we afford more privately funded carer hours? – Yes, but only a little.  When we first looked into getting someone like Alison to live-in for a week it cost around the same as a fortnight in the Maldives.  I have no problem at all with good renumeration for care staff.  Alison is a godsend and mum adores her but we cannot afford her residential equivalent

The other big issue is boredom.  When mum’s sister from Canada came to stay last year she surprised us all by suggesting that mum might be happier in a care home where she had company all the time.  She had a point although I don’t think any of us were seriously considering carting her off there and then.  Mum is left on her own for periods of a few hours at a time and although she seems content to stare at the walls or watch whatever dross is on the telly there is no question that she is more animated when surrounded by people, at her singing group, sat in the kitchen while the kids run round or I chat to my friends over coffee.  She doesn’t contribute but she seems to enjoy the hubbub.

The conclusion we came to was that we should at least start investigating day-care – ideally somewhere that provided activities for younger people with dementia that could ease seamlessly into the occasional overnight stay and then longer periods of respite as needed.  What we hadn’t banked on was the lack of such a venue to cater for our specific needs and the deeply ingrained horror of all things ‘care home’ that mum has held onto despite losing most of her other key faculties and prejudices.  Cue a massive disaster…….

 

 

Mothers and daughters – apologies in advance, it’s a bit of an angry one

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Fair warning, I promised myself one really self-pitying blog post and I have been saving up the venom and vitriol so if you would rather chew off your own arm that hear the unreasonable wallowing in grief that I am about to put down on screen then walk away now.  First off can I just say

IT IS SO BLOODY UNFAIR

and can then I just say

WHY DID THIS HAVE TO HAPPEN TO MY MUM AND TO MY FAMILY?

and then

WHY COULDN’T SHE HAVE GOT SOME OTHER DISEASE?

 or

WHY DID SHE NEED TO GET ANY DISEASE AT ALL BECAUSE LETS FACE IT SHE’S ONLY IN HER SIXTIES AND MOST OTHER PEOPLE HER AGE HAVE A TOUCH OF MILD ARTHRITIS TO COMPLAIN ABOUT?

and

WHY DID SHE HAVE TO GET IT SO YOUNG – COULDN’T IT HAVE WAITED UNTIL AT LEAST HER EIGHTIES WHEN ALL HER FRIENDS WERE DROPPING LIKE FLIES OR WANDERING ROUND WITH SAUCEPANS ON THEIR HEADS? (she’s never done that)

and

WHY IS IT THAT OTHER PEOPLE WITH DEMENTIA WHO FEATURE PROMINENTLY ON SOCIAL MEDIA SEEM ABLE TO COORDINATE PUBLICITY CAMPAIGNS, WRITE BOOKS, COMPLETE PHDs AND MY MUM CAN’T EVEN FINISH A SENTENCE?  HOW CAN THEY TALK ABOUT REDUCING STIGMA WHEN MY MUM CAN”T EVEN SAY STIGMA ANY MORE?  WHY HAS SHE GOT THE REALLY EXTREME SHIT VERSION OF THE DISEASE?

and

WHY WON’T MY KIDS EVER GET TO KNOW HOW LOVELY THEIR GRANDMOTHER WAS? 

and

HOW UNSPEAKABLY CRUEL IS IT THAT THE ONE THING SHE WANTED IN LIFE WAS TO HAVE GRANDCHILDREN AND NOW SHE BARELY REGISTERS IF THEY ARE IN THE ROOM WITH HER?

OK- deep breaths and no more violently coloured text and capitals (I got a bit carried away with the wordpress toolbar) .

The odd thing about watching someone you love progress down the Alzheimer’s road is that it takes such a long time.  Most other people faced with a terminal illness in the family have to adjust to their loss relatively quickly.  They may cherish the months they have whilst also finding them unbearably poignant as their loved one fades away.  Alzheimer’s takes bloody years – years of slow depressing decline.  As a result it is rare that one experiences a sudden pang of loss or high emotion.  I am seldom tearful because it feels as though this illness has been part of our lives for so long that it would seem odd to suddenly become upset.  The dementia barely registers as unusual now – it is simply part of our life.  Various coping mechanisms have imperceptibly kicked in and we muddle along with a low-grade undercurrent of sadness instead of the overwhelming grief of sudden bereavement.  But still, occasionally it hits you.  My sister went to the cinema with a group of friends to go and see ‘Bad Moms’ and at the end of the film there is a sections where the actresses are seen with their real-life ‘Moms’ talking about their relationships, how they were as children etc.  My sister looked around and realised that every one of her friends was observing these interactions with an idea of their own mother-daughter relationship in their head, imagining the responses their mums would give, the smiling reminiscences they would share.

My mum has lost the ability to reminisce.  I think she may have lost all memory of raising us.  She still loves babies so there is clearly a maternal instinct lurking beneath the surface (I am reminded of the elderly women I see in nursing homes carrying dollies round – I think mum will be one of them, just not so elderly).  Certainly even if she does have recollections of our youthful past we will never be able to access them – we will never be able to ask her advice about how to raise our children, how to navigate the overwhelming abundance of useless information about parenting and come up with the gems, how to chart your own course through the quagmire of school mum support / bullying that goes on – I was once roundly chastised by another mum who felt I was weaning my baby too early and would damage her health forever if I persisted in my wilful baby-rice and puree campaign.  It was only because I am a doctor, married to a paediatrician and this was my third baby to have been weaned in exactly the same fashion that I was able to tell her politely to F*** OFF and MIND YOUR OWN F***ING BUSINESS.  Had I not been a medical professional, or if it had been my first baby I would probably have consulted with the one person I knew who had successfully weaned children without bringing about some horrific immunological compromise – my own mother.  I would have sought her advice about navigating many aspects of toddler behaviour; asked her opinions about time out, the naughty step, screen time and tantrums amongst the many angst–ridden subjects of early parenthood.  I would have liked to ask her about how to discuss bras, periods, dieting, body image and boyfriends with my daughters.  How to explain the oddities of female friendships and behaviour to them, why sometimes girls are bitches to each other for really confusing reasons.

And it’s not just the children I need maternal advice about.  I want to know whether I’m too old to have long hair, whether I should hang on to my bootcut trousers for when they  become fashionable again, whether I should aim to lose a stone or just accept that I will never get back to my wedding weight and if I did my face would probably cave in under the wrinkles.  I would have liked to ask her why it still hurts at the grand old age of forty to not be invited to a friend’s party and whether one ever grows out of that (maybe the answer is simply to wait for the dementia to kick in and then you don’t even notice that there is a party, let alone that nobody wants you there).  Whilst there was never a great intellectual connection between my mother and I there are areas of life where I would have massively valued her experience and wisdom.  There are things that only a mother can tell you and I didn’t realise I needed to ask until it was too late.

 

So – my summary sentence to wrap up this mawkish wallowing is this – If you have a mother and she is alive and has some remaining cognitive function, ask her as many questions as you can possibly muster.  ASK her about everything you might need her advice on now and in the future (curtains / herbaceous borders / puff-pastry / stretch marks / divorce).  Her opinions may be ill-informed, poorly judged and not correlate with your own instincts but she knows you better than anyone else and one day it might just come in handy.

 

 

Explaining why granny is allowed to get away with ‘that type of behaviour’

 

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I’ve discussed the difficulties of broaching the subject of dementia with my kids in previous posts  and the lack of appropriate resources for the task but it seems this is improving.  Many of the books aimed at children are American and have just too much ‘Geee Mom!  Why did Grandpop just steal my candy?’ in them to hit the spot for your average UK kid but there are a few British ones filling the void and a lovely project underway with AllyBallyBee to design personalised books for children with dementia in the family.

My kids now understand a lot more about dementia, partly because they are older and partly because the problems are much clearer.  We have moved on from explaining the subtle differences between the two grandmothers (demented granny and fully cognisant granny – I clearly don’t use those terms out loud) because it is so roaringly obvious that there is something seriously wrong with demented granny now.  One of the benefits of the Alzheimer’s progressing is that bizarrely some of the social embarrassment eases (my social embarrassment you understand – I know it shouldn’t matter – but it does).  Nowadays she looks like there is something wrong with her.  She has the kind of glazed expression that universally indicates not much is going on upstairs.  As a doctor I have no way of describing that particular clinical sign but there is something about the way she looks and the way she moves now that makes everything clearer to the wider public.  In the past there have been times where I wanted to whip out a sign behind mum’s head that said PLEASE DON’T THINK SHE’S BEING RUDE.  I KNOW SHE LOOKS FINE BUT SHE HAS ALZHEIMER’S DISEASE AND THAT IS THE REASON SHE JUST IGNORED YOU / TRIED TO SIT ON YOUR LAP / BURPED IN YOUR FACE*.  In the same way that when your child does something mortifying you may want a sign that says DON’T JUDGE ME OR MY PARENTING JUST BECAUSE MY SMALL DAUGHTER HAS YELLED OUT THE PHRASE “PENIS, PENIS, I LOVE PENIS” AT THE TOP OF HER VOICE IN THE SWIMMING POOL CHANGING ROOMS.

*Just to clarify – mum has never actually burped in someone’s face.  My five year old daughter however has made the penis comment – following a discussion about biologically appropriate nomenclature but I’m sure we’ve all been there.  Maybe not….

 

There have also been many occasions where I have had to explain to the children that because granny has dementia she is able to take certain liberties.  For example, at mealtimes it is hard to understand that you cannot simply reach over to your sibling’s plate, spear one of their sausages with your fork and transfer it directly to your mouth.  But granny can.  She can pick whatever she likes off someone else’s plate with impunity and only yesterday finished off the last three remaining slices of lemon tart, literally digging it out of the bowl with her fingers and scooping it into her mouth, without so much as a glance in the direction of the children who were requesting extras.  According to dad, at a recent wake after the funeral of a close friend, she reached over to a complete stranger’s plate and stole one of their canapes – comedy and tragedy in perfect harmony.

If outright food theft is now the norm then other dining formalities become even tougher to explain to children, let alone enforce.  It is hard to understand that conventionally we might wait for everyone at the table to have been served before we start eating but granny can start whenever she likes – in fact, given the very real possibility of one’s meal disappearing into granny’s mouth it is probably best to crack on as soon as your food hits your plate.  Equally, granny can interrupt conversations, wander off when she’s bored and, on the occasions where she does string a few coherent words together, can be as rude as she likes.  The best example of this occurred last month when my sister overheard mum expressing her concerns about American foreign policy by saying ‘Trump!‘ loudly followed by a muttered ‘Cock! a few seconds later.  A more fitting presidential tribute I could not conceive but I have to say that there are times that I am relieved her language is now so limited – god only knows what she’d come out with if she could only articulate it properly.

So, it’s clear that some of mum’s behaviour now is about as socially acceptable as a fart in a lift but the children are tolerant and sometimes even amused by it (even if they are a little hungrier than previously).  The bigger challenge is making the children understand that they fall down the pecking order in terms of priority when mum is around.  If we take granny to the cinema we can’t necessarily sit where we want to or eat what we’d like.  We have to allow extra time for toilet stops and the slow gathering of belongings, the eternity it takes to put on a pair of shoes and a coat or to walk across a car park.  If granny is staying overnight they need to understand that mummy will not be available to help them get dressed in the morning because she is occupied dressing granny.  It is not acceptable for one of my children to bellow ‘WHERE ARE MY BOXERS‘ repeatedly and stomp round the house whilst I play ‘put mum’s foot in the right knicker-hole’ or wrestle an unruly bra-strap across my mother’s ample bosom.  A lesson my son learnt to his cost only last weekend when I totally lost the plot, screamed that he was selfish and didn’t care about granny, said I couldn’t bear to be around him when he was such a horrid little boy and generally ranted on and on until I made myself hoarse. I reflected, way too late, that my outburst had stemmed entirely from my own frustrations and felt hideously guilty for days after.  Because I don’t want my children to see granny as a negative in their lives.  I don’t want them to associate her arrival in the house with trouble and distress, to dread granny’s visits because they inevitably lead to mummy shouting and becoming generally deranged.  My mum is so placid and easy-going now that my snorting impatience and teeth-clenching hysteria seem misplaced and inappropriate.  It feels like a moral failing to show the children that I am struggling to divvy up my reserves of love and affection but it isn’t fair that they get less of my attention and I have nowhere to vent that sense of injustice.  Maybe I’ll just take a leaf out of her book and start shouting “Cock!” at the top of my voice whilst helping myself to extra pudding.

 

 

 

 

Zip-Wire

A little treat from the past weekend when my sister had mum to stay.  I’ll limit this post to her hilarious text which says it all:

 

Conversations I never thought I would have with mum:

Mum:  Is the zip wire good?

Me:  Yes

Mum:  Can I have a go?

Me: Um…….

 

Now, there’s an image.

 

 

 

 

Crazy in love – Dementia in a marriage

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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….

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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

 

 

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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.