Following on from our initial catastrophic foray into day-care two unexpected and brilliant discoveries were made – one by me (coughs modestly into sleeve) and one by dad.  Neither of these gems have resolved our essential problem (I haven’t suddenly found a cure for Alzheimer’s and decided to publish it here on an anonymous blog rather than in a hefty scientific journal) but they have added a little light to our daily shade.

 

Firstly (accompanying trumpet fanfare)…..

THE MOST BRILLIANT AND AMAZING HOLIDAY COMPANY IN THE WORLD!!!!!

The link to ‘Mind for You holidays’ came through a Facebook post from Young Dementia UK who are one of  THE MOST BRILLIANT AND AMAZING DEMENTIA CHARITIES IN THE WORLD!!!  and who regularly send me (and all subscribers) useful information about events specifically aimed at young people with dementia (the clue is in the name).  I had a quick nose around the Mind for You website and pinged off an email to dad who, in an uncharacteristic display of spontaneity, sent me a reply ten minutes later saying he’d booked a holiday with them!  A few weeks later off they went for a five day trip to Norfolk.  The holidays are designed for people with dementia and their carers.  A small group (five people with dementia, their five holiday companions and three staff) exclusively commandeer a holiday home so there is none of the awkwardness associated with a large impersonal hotel where incontinence and shouting obscenities may be frowned upon (unless perhaps you are a rock star).

The aim is to allow carers a bit of time to themselves – on daily activities, such as visiting a National Trust property, carers are encouraged to wander off for a couple of hours, dawdle in the café or pop to the pub safe in the knowledge that their charge is safe, entertained and, most importantly, not anxious about their absence.  As those with young children know well, however enjoyably an hour of me-time is spent it is poor recompense to return to an inconsolable toddler, particularly when reports confirm that he or she has spent the past hour wailing “But WHERE IS MY MUMMY???!!” and you sense immediately that you will not be forgiven.  Ever.  If however you are reasonably confident that your loved one is being appropriately cared for in your absence and is unlikely to be scarred for life by your brief foray into the local botanical gardens then you can fully appreciate the few moments of peace.

On this, their first ‘dementia friendly’ holiday my parents were, as always, significantly younger than the majority of the group, although one of the couples consisted of a mother and daughter which helped balance things up.  The carers were a variety of ages and interacted with the guests in a natural, unforced way, whether they were the person with dementia or the carer – the priority was to ensure that every guest enjoyed their holiday.  From dad’s description it seems they struck a perfect balance between being available and unobtrusive.  There was none of the “ARE YOU ALRIGHT DEARIE?” and more of the “Do you fancy popping to Tescos with me to get the groceries for tonight’s meal?”

Dad struck up an unlikely friendship with an elderly gentleman who had a dementia of the angry, frustrated sort.  This chap was clearly pissed off with his wife’s cheerful ministrations, having been used to a conventional marriage where he was the boss prior to the dementia taking hold.  His frustration at having ‘the little woman’ help him dress, eat and get about was evident but he clearly identified dad as another alpha male who’s help and company he was prepared to accept.  Dad took him to the pub one evening while mum stayed at the hotel with the carers and the other guests.  Although swapping one person with dementia for a disgruntled other person with dementia may not seem a recipe for a perfect night out it seemed to suit everyone, including dad, quite well.

The holiday was such a success that they signed up for another trip with the same company to Scarborough a few weeks ago and this led into a weekend where we benefitted from the second unexpected treat of the summer; finding a respite service who offer 72 HOURS OF CARE IN YOUR OWN HOME FOR FREE!!!!  I have documented the cost of care in previous posts and while money is not horribly tight for my family we need to ensure that we can cover care costs for mum potentially for another thirty years without going bankrupt.  The lovely Alison (mum’s carer who visits a couple of times a week) remains a wonder and a delight but to pay her to stay with mum around the clock for a three day period would cost more than £1300.  A week would cost around £3000 and given the fact that this would be the approximate value of a fortnight for two in a luxury Caribbean resort it seems an imprudent use of pension or savings.  Thus we scrabble around to cover the odd weekend for dad with a combination of me, my sister, the lovely Alison and my aunt (on my dad’s side who is happy to come and look after her sister-in-law for a weekend just so her brother can get away – I mean, words fail me, the woman is a saint).  Again I have bleated on about this in previous posts but basically it’s a bit of a faff to keep doing this and we really need something a little more robust in place – enter the amazing 72 hours of free cover provided through a charity paid by the council.  It’s not exactly well publicised (or presumably it would be completely swamped) but dad stumbled across the existence of the service during a coffee morning for carers.  This in itself was a significant departure for him (coffee morning for carers not having a much of a jaunty ring to it) but whilst mum was being crooned to by the hired entertainment (local pub singer) dad was chatting to a representative from the charity and came home in bemused disbelief with a contact number clutched in his hand.

And thus – Mavis came to visit – she assessed.  She confirmed that mum was a suitable recipient of care and that the house was a suitable venue for their carers.  She promised to return for the weekend of dad’s Bridge tournament and my sister and I were placed on standby in case it all fell apart.  We were scheduled to ‘drop in’ at points over the weekend to check all was well and that there wasn’t a carer cowering in corner while mum staggered about the house swigging from a 2 litre bottle of Baileys and smashing furniture (unlikely but not impossible).

My sister was the first visitor on Saturday morning and she phoned me when she left saying ‘Everything was fine but Mavis is in fact Stephen….’  It turns out that Mavis had called in sick and in order to cover the 72 hours mum had a total of 5 different people coming in and out of the house.  Interestingly, if we had known this from the start we may not have proceeded, deciding that it would be too stressful for her – but once more she surprised us and coped admirably with the comings and goings.  Luckily the overnight carers were women (as an unfamiliar Polish chap getting her ready for bed may have been a bridge too far) and the lady I met on the Sunday (Jackie) had a nursing background.  She told me that clients like mum were a lot easier to look after than those who were bed-bound and completely uncommunicative, clearly in that scenario one is counting down the hours until the shift ends.  All of the carers had all written copious hand-over notes, even during the night shift documenting how many times they had popped in to check she was sleeping and although they may not have provided as much entertainment as Alison would have, they were at least there, keeping her safe, enabling her to stay in her own home while dad went away.  The final proof of success was when dad returned home there were no recriminations.     That really is as good as it gets – positive feedback from mum just doesn’t happen so an absence of negativity is the best sign and there wasn’t a single sulk, pout or tear.

 

Hooray!!

 

 

 

 

Following swiftly on from the last post which was, errr… two months ago, the stage was set for a fairly calamitous trip to a care home.  To recap, we had been looking for somewhere mum could go for a few hours once or twice a week where she would have some stimulation other than Cash in the Attic blaring loudly from the TV.  The idea was that this mythical venue would provide appropriate activity for mum (painting, singing, dancing) as opposed to pursuits more suited to the sharp-witted (Bridge, Chess, Scrabble).  We were also hoping for a place where a few hours of day-care would blend seamlessly into the occasional overnight stay, thus allowing dad to go off and bellow at a series of rugby matches or paint himself in neon and leap around the mosh-pit at Glastonbury.  After a couple of very dispiriting trips to local care homes (they all smell like cabbage and urine – I know, I know) dad found one that looked a little more appealing.  It wasn’t hotel standard but it had a nice friendly atmosphere and a busy daytime schedule of activities for residents or day visitors.  They would need to do an assessment first – yes yes, of course.  Cue the daughters being lined up to introduce mum to this unchartered territory and spin it in a way as to appear exciting as opposed to terminally depressing (to be fair, I don’t think it was just dad trying to dodge the bullet here – he genuinely wanted our opinion of the place too).

After a week or two of dropping subtle hints in preparation (Me: “Hey!  We might look at another place that does singing and painting next week!” Mum: slight eyebrow lift to indicate words had been heard but not necessarily processed) we agreed to meet the manager on site for a tour and introduction.  We arrived in a rainstorm of biblical proportions and struggled to make ourselves heard as the downpour thundered onto the conservatory roof.  The manager was a lovely chap, a retired Sargent Major, solicitous and charming but also older than mum and very deaf which presented some interesting challenges.  His opening line which set the tone for the entire morning was rightly directed at mum:  “SO!!!  How do you feel about coming to look round a care home?!!”

Holy Shit – did he just ask that?

My sister and I exchanged frantic glances behind mum’s back whilst murmuring a series of appreciative noises and pointing to the soft furnishings in the hope of distracting her from the fact that this place was very definitely a care home.  As is so often the case with mum the scenarios one finds oneself in are incredibly reminiscent of activities involving small children – this felt exactly like the sort of false bravado I had assumed when introducing my kids to a new preschool: “See darling? Look at the boys and girls over there!  Don’t they look like they are having fun!!!!  See them paint!  See them play!  Behold their unbridled joy at being in such a glorious establishment!!”

This was us, but more along the lines of:

“See Mum?  Look at the very elderly gentleman nodding in the corner over there!  Doesn’t he look cosy and well cared for?” 

“See those ladies playing a card game?  Yes they do all appear to be in their nineties but they are having fun!!!!!  Yes, I know you don’t like card games.”

“Oh look!  A lift!  That’ll be useful!!  All mod cons here!!!!!”

“What’s that round the corner you ask?  A bedroom?  No we definitely do not need to see the residential accommodation lest it destroy our carefully constructed fabrication that this in fact some kind of country club where people just pop along for an hour and groove about”.

 

And so it went on.  We got the awkward questions out of the way (“Are you self funding?”  “Yes we are” – “What is your date of birth?”  “We’re not exactly sure whether it was 1951 0r 1952 and mum seems to be mainly focussed on the biscuits at this point”). We had a tour.

Good points:

• It was clean
• It was cheerful
• The carpets were a little threadbare but they were at least carpets rather than lino and thus the feeling was more homely than surgical
• The Sargent Major was cheery and loud
• The staff turnover was incredibly low, clearly everyone who worked there was happy and had been there for years
• There was a varied timetable of daytime activities

Bad points:

• It was very, very obviously a care home
• All the residents were ancient

 

Mum maintained a neutral demeanour throughout. She made no comments and showed no signs of animation but this was not particularly unusual.  We were unsure, was the silence ominous or reassuring? Did she understand where she was?  Did she understand that we weren’t visiting a care home with a view to leaving her there but merely to partake in some of their activities?  Every time we tried to focus on the noticeboard with it’s events schedule we were taken to see another ‘residential’ aspect of the building.  Every time I asked a question about ‘just popping in for the live music sessions’ it was met with a detailed explanation of the daily timetable including what time residents got up and when ‘bedtime’ was.  The emphasis was all wrong.  We left with a copy of the weekly activities and a tightness in our chests that suggested trouble brewing.  I phoned dad on the way back, my sister having been left with the dubious pleasure of taking mum home and facing the fallout.  “Dad” I said “Just wanted to give you the heads up.  There may be some awkwardness…. “  I wasn’t really sure what else to say.

My sister dropped mum off and reported back – all seemed well; no huffing and puffing, no tears.  We breathed a sigh of relief, maybe that unsettled feeling we had was misplaced, perhaps it was just us projecting our feelings onto mum when in reality she had been blissfully unaware of our discomfort?  However, further conversations with dad later in the week revealed the full extent of the damage.  Apparently mum hadn’t mentioned our trip at all during the rest of the day but when she went to get into bed that evening there were tears in her eyes.  Dad established that her distress was related to the visit and set about reassuring her – of course we weren’t going to put her into a home, we loved her too much for that (clearly promises you may not be able to keep, based on how much you love someone, are fraught with problems but we’ll park that issue for now).  He repeated the mantra about only wanting to see what activities they were offering and suggested that he find out when the next music session would be taking place.  She seemed placated and went to sleep.  The next morning when he phoned the home as discussed she followed him round the house for the duration of the call and was in tears when he finished.  Again the reassuring chat was trotted out but it was increasingly obvious that this was not a goer.

A visit later in the week to an entirely different, non-residential day centre proved the nail in the coffin – again nothing was wrong with the centre, the visitors there looked happy and entertained but they were all at least twenty years older than mum and were undertaking activities that she simply wouldn’t have been able to manage (bingo really does have all the joy sucked out of it if you can’t understand basic instructions, can’t use your dabber to block out the numbers and don’t even fully appreciate what numbers mean or look like any more).  Mum apparently balked within the first ten minutes of entering the building and dad quickly made the decision to politely bail out.

A few days later my parents were both over at mine having a cup of tea (mum mainly looking at hers rather than actively drinking it) and my dad was talking to my husband about the recent general election.  They mentioned manifesto commitments regarding social care and the associated funding problems (that’s the level of entertaining chat you get at my house – its a riot) and when my husband said the immortal words ‘care home’ mum got up out of her chair and started flapping her hands in distress towards dad.  Clearly the trauma went deep and her radar was on high alert.  A woman who didn’t even register her own granddaughter’s birthday (as it was that day) now seemed to have the most acutely sensitive nose for residential care and could pick up on the subtlest of references to nursing homes and social services.  This was not ideal but then rarely has there been a moment in this blog where I’ve thought ‘Now that really IS ideal‘ so I’m getting pretty used to these little disappointments.

 

The trouble is we are faced with an impossible situation – mum needs entertainment in a safe environment, dad needs respite, my sister and I need to balance caring for the generation above with caring for the generation below and it seems there is no appropriate venue to cater for these specific requirements.  Care homes are clearly terrifying for her and full of old people, Day centres are similar and often the activities are intended for those who’s bodies are frail but who’s minds are not. Education centres for adults with special learning needs are not really appropriate either – given the choice would mum rather be singing along with alert ninety year olds or younger adults with Downs syndrome?  I just don’t know.  She appears to be unique – which is a nice thing to be in some contexts – just not particularly useful in this one.

Cheer up though!  It gets better in the next post:

When will there be good news?  Wait… there is some!

 

 

 

 

 

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…….

 

 

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.

 

 

 

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.

 

 

 

 

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.

 

 

 

 

 

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.