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.

 

 

 

 

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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.

Dementiafest – taking mum to Camp Bestival

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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.