Don’t panic.  This isn’t an excuse for me to drone on about what makes us human.  The constituent parts of a personality and whether we are still the same individual when our cognitive function deteriorates is a fascinating topic, but I am in no way equipped to speak knowledgeably on the subject. The post title merely refers to this oft quoted phrase “She’s still in there somewhere” – the implication being that we need not despair, our loved one is still with us even when they are ostensibly not with us (or with it) at all.  Is this just a panacea of modern times?  Is it the same as telling children that a beloved pet who has met an untimely end is “looking down on them” from heaven? Or the fond belief that someone is still with you after their death if you “hold them in your heart”?  I am in no way wanting to belittle the feelings of those who have been bereaved or those who have a strong faith – there are ways of keeping the essence of someone alive despite their physical demise but the truth is that over time, despite the platitudes, it becomes clear that the person is lost.  They have gone.  Elvis has left the building.

In mum’s case, Elvis hasn’t quite left the building yet but he is entering his post-Vegas morbidly obese phase.  She can no longer communicate with us.  She can no longer respond appropriately to verbal or physical cues.  She shows no discernible preference for any activity or topic of conversation.  There are glimpses of a personality but I’m not sure that the personality we see is actually hers.  The elements of naughtiness that led to her calling Donald Trump a Cock (Explaining why granny is allowed to get away with ‘that type of behaviour’) are hilarious and a welcome addition to the high brow political discourse in our house, but that type of comment was never really her.  She’s just displaying classic disinhibition – which is great – but her entire non-dementia personality was inhibited and British and polite and reserved.  She wasn’t a woman who shouted about Cocks (really not sure whether Cock needs a capital letter – thoughts?).  So that episode wasn’t actually a glimpse of mum’s naughty side coming through, it was a glimpse of a person with dementia being able to throw off the shackles of inhibition and say the first word she associated with a vision of the orange buffoon.

My lovely aunt who died last year (see The Sisterhood ) came to stay for a few days the previous year to look after mum whilst my dad was away.  I think it was an eye-opener for her but my aunt was an amazing woman who took it in her stride.  To provide a bit of respite for the respite giver, I invited them both over for Sunday lunch (because that’s just the kind of girl I am, my generosity and benevolence know no bounds) and my aunt trotted out the old phrase.  When I asked her how the past twenty-four hours had been she said, “Yes, she’s clearly deteriorated hasn’t she, but she’s still in there you know.  I still see a bit of twinkle in her eye that’s clearly her.”

Hmmmm.  WTF?

a) What ‘twinkle in her eye’?

b) How would a ‘twinkle in her eye’ indicate retention of personality traits?

c) Are you saying that ‘she’s still in there’ to make yourself feel better / make me feel better?

d) She’d never really struck me as a ‘twinkle in her eye’ kind of person so are you referring to a more cheeky side of my mother that I never knew about?

 

Obviously I have no answer to these questions given the fact that my aunt is now deceased and I wouldn’t particularly have wanted to grill her about her phrasing at the time anyway – it would have seemed churlish, let’s face it, to debate semantics when someone is doing you a colossal favour. It just strikes me as a curious, yet very human response; perhaps overly hopeful, perhaps genuinely felt.

However, I don’t feel it and I can’t make myself believe it.  She no longer looks like my mum, smells like my mum or acts remotely like my mum.  She doesn’t recognise me and I don’t recognise her but its not as bleak as it sounds – she’s very sweet to have around, she smiles, she’s a warm body for the dog to cuddle up to (the dog loves her) and she doesn’t mind – she doesn’t really mind anything, presumably because there is nothing left of her mind.

As I have said in many forms and guises previously, it is as if mum died a few years ago and as a replacement bus service we have an affable stranger who visits intermittently, a stranger who contributes little but is not a negative presence either.  I feel a sort of ambivalent inertia about the whole scenario.  I think I’ve done my grieving – now I’m just cracking on with the practicalities of another body to feed and toilet in a similar way to a small child or a pet.  Yes, it could be better.  But, it could be worse.

I started writing this blog post two years ago and then abandoned it because I felt it was just too much even for me.  Talking about adults wetting themselves is a tricksy old business and there was a part of me tied up in knots with embarrassment for my mum at the thought of people reading about it.  But now I look back at these feelings almost fondly because that ship has long sailed.  Mum is happily in her incontinence pants 24/7 and I am starting to forget a time when she wasn’t so it seems an opportune moment to let this particular story go out into the world like a glorious flock of doves (doves who then crap all over your car). ‘Go fly, my Pretties!’……

Incontinence – da da daaaaaah!

Can we talk about this?   Yes we can! I have to be honest, I was very torn about whether to tackle this issue because to many it will seem terribly indelicate and personal but that is one of the massive advantages to having an anonymous blog.   Whilst I was toying with the idea of whether to write about it or not I asked myself whether I would have found it helpful to read a first hand account of someone else’s experience in dealing with incontinence in dementia and I thought Bloody Hell – Yes!   In fact, for a few days last week that was ALL I wanted to read about.  And could I?  NO.  Is there any ‘warts and all’ information out there?   NO.  Are there practical tips about where to get incontinence pads from, how to protect your sofa and bedding without drawing too much attention to it and how to make sure someone you love is clean and dry without losing the will to live?  NO!!!  So I’m going to man up and write about it, because if in a year’s time just one person stumbles across this blog in their hour of need it will be worth airing our dirty laundry in public (more literally than I had initially anticipated).

Before I launch into the full story I must point out that the person who was really at the sharp end last week was my sister who captured the situation perfectly when she sent me a photo of the mountain of washing generated by having mum come to stay for less than 24 hours.  It was my brother-in-law who did the Tena-lady dash to the supermarket and my dad who has dealt with the fall-out since.  I have had little to do with the practical stuff on this occasion.

I also ought to point out that this recent episode was caused by a urine infection and seems to have been resolved with a short course of Trimethoprim but I suspect if nothing else it is a glimpse of things to come and it has been quite a shock to all concerned. I have been a GP for 12 years now and as a result I am perfectly happy talking about wees and poos and bums (and willies, discharge and snot for that matter).  It’s also not that long ago that I was potty training my children so dealing with soiled undergarments and bed linen is relatively familiar. However, adult incontinence, as I have touched on before, is a clear ‘no go’ area in terms of generally acceptable conversation.  Dad had studiously avoided all of our toilet-related questioning but if really put on the spot he maintained that there had been no problem other than occasional failure to flush.

However, on returning from a recent holiday with friends it was apparent that things had changed.  He called both me and my sister on the day they flew back and was more downbeat than I had ever heard him.  Clearly things hadn’t gone well and it seemed that instead of a relaxing  holiday he had basically had a week of the usual caring duties but in a much more stressful environment.  I pushed on and asked about specifics – ‘Had there been any particular incidents?  Had she wandered off?  Caused a scene?  Sustained an injury?’  No.  But ‘there were a few accidents’ he said ominously.  Oh.

It turns out that a couple of these accidents (i.e. episodes of incontinence) occurred in the hotel loo and seemed to be a simple case of not getting there in time but he described one incident which on its own encapsulates the very worst thing that dementia has done to my mother.  In an expensive restaurant, out with friends, surrounded by other diners dressed in their finery she started coughing (see You’ve got to be choking ), vomitted over the table and wet herself. There.  That’s it.  You may never understand how painful it was to write that last sentence but if my mother had had any idea that she would ever be in this scenario she would have thrown herself under a bus years ago.  She would have been appalled to have even been in the same dining room witnessing such a messy fiasco – listening to dad relate this story with weary resignation was ghastly.  I know that I would have been mortified to have even been there and I feel quite guilty about that, but my dad was there watching it happen to his wife.  This is a man who. despite having two daughters, used to have to leave the room if a tampon advert came on the TV.  Bodily functions, specifically regarding the nether regions are known to occur but never referred to.

Anyway – you get the idea that this was kind of a big deal and for dad to be talking about it meant that we had a small window of opportunity to look at long term personal care needs (I genuinely love the phrase ‘personal care’ – it tells you all you need to know but in a nice friendly way).  The accidents seemed to have stopped since they had returned home so we assumed that they had occurred on holiday as a result of disorientation, being in unfamiliar surroundings.  This had implications for future holidays but we thought we had time to get ourselves organised.  My sister offered to have mum come to stay for a night just to give dad a bit of respite and we started looking into options to increase the care package (2 hours of the lovely Alison was unlikely to cut the mustard for much longer).

While mum was staying at my sister’s it seemed that the urine infection started to really kick in – whether the incontinence on holiday had been due to an emerging infection or just disorientation we will never know but suffice to say that the overnight stay was not a success.  Mum wet herself on pretty much every piece of upholstery in my sister’s house and barely an hour went by without some incident or other.  My sister called to alert me about five hours after mum had arrived on the Saturday – she didn’t want to tell dad and interrupt his few moments of solitude so she struggled on through the evening and night with towels on sofas and mattress protectors on the bed (inevitably mum wet the bed on the side with the mattress protector then rolled over to try and avoid the damp patch and wet herself on the unprotected side too).  By the time dad came to collect her on Sunday my sister had washed every stitch of clothing that mum had packed  as well as many sheets and towels and the duvet was in a heap awaiting the laundrette.  We had a series of emergency phone calls and it became apparent that there was likely to be a cause for such a dramatic turn of events so I suggested that dad get a urine sample from mum (he didn’t look thrilled at the prospect bless him).  He saw the practice nurse on Monday, handed in the sample and lo a urinary tract infection was confurmed.

 

Since then the antibiotics have kicked in and the situation has improved radically.  Dad has reported only one accident on the floor of the bathroom in the past week which I have told him to mention to the GP (who he is seeing today as it happens) because nobody really knows how much of this improvement is due to the resolution of infection and how much is down to being on home turf.  I guess we’ll find out in a few weeks time when mum comes to stay with me for a long weekend!  In the meantime I have a few key messages / take home points / whatever corporate jargon you prefer:

1. Assume that at some point incontinence is going to be an issue you need to address if you have a relative with dementia.  Be prepared for this emotionally as well as practically (see point 4)
2. A supply of Dri-nites bed mats and incontinence pads is never going to be a bad thing to have in the house.  If you can’t find or can’t bear the thought of Tena pads then maternity sanitary towels or similar will do for emergencies (any port in a urinary storm).  They are also very absorbent and useful for any manner of scenarios although people may look slightly askance if they see you mopping up their spilt tea with one.
3. Sudden incontinence, very smelly wee or a sudden worsening of confusion is often a result of an infection.  Urinary infections are more common in the elderly and those with dementia and they do not present in the same way as they do in healthy adults (i.e. the person may not complain of pain or increased frequency) so you need to be on your guard and have a specimen pot in the house.
4. Try as hard as you can not to be appalled /  repulsed by the incontinence, or at least try not to show it,  However advanced the dementia there seems to be a very primal response from those who have been incontinent, they know they have done something ‘wrong’ and this in itself is very distressing.  Keep reminding yourself that one day this could be you….. And then go and jump off a bridge (no, not really). 

 

Please to also have a look at this from the Alzheimer’s Society where the whole issue is handled much more sensitively and kindly. Leaflet – Personal Care

 

I was thinking the other day, as you do, about hairy chins.  Specifically, hairy chins on old ladies or even, non-that-old ladies.  Mum unsurprisingly has the odd rogue facial hair.  Despite extensive depilatory techniques employed during the pre-dementia years, including lasering, waxing, shaving, plucking and threading, the wiry little buggers still occasionally appear – indeed, regardless of how one tries to destroy it body hair has a way of marching back across the landscape, resurrecting itself in the unlikeliest of places and popping out to surprise you.  For a few years after the diagnosis we tried to maintain mum’s original high level of grooming.  She continued to have regular manicures, her hair was highlighted and coiffed, we chose outfits that disguised the increasing girth, kept her in high heels until it became completely impractical and persisted with make-up.  She was still having her bikini line waxed until a few years ago because a trip to the beautician’s was part of the pre-holiday routine.

Nowadays we still obviously endeavour to ensure that mum is clean and appropriately dressed for the elements but it is fair to say that some of the cosmetic presentation has slipped. The manicures still take place, the expensive but lovely hairdresser who mum has had for years, still goes through the motions (even though I’m sure that mum’s presence in his salon markedly undermines his brand) but her glorious bouffant has been shorn into a manageable crew cut – still expertly snipped and coloured, but a crew cut nonetheless.  She has a single pair of hook earrings that she wears day and night because she can’t operate the butterfly and post type herself and dad is justifiably worried he may end up re-piercing her earlobe several times if he tried to put them in on a daily basis.  She has other jewellery and the lovely Alison still perseveres with make-up when she comes to look after mum but in all honesty we have stopped bothering to do it (sounds pretty lame when I write that but it’s the truth and I try to be as factually correct as I can here even if it’s a little uncomfortable).

Yet in the middle of these cosmetic decisions there sits a hairy conundrum.  None of the other things that we do to keep mum presentable cause actual pain.  She may get a little restless having her nails painted or struggle to understand why we are putting powder on her face but the difference between these procedures and having somebody pull your hair out is vast.  As anyone who has ever been waxed, plucked or threaded will tell you – these type of procedures are not dissimilar to being physically assaulted.  A single hair being ripped out of it’s follicular bed is uniquely, eye-wateringly agonising.  And yet, like childbirth, we go through with it because we are fairly certain there is a reward at the end, be it baby-soft skin or an actual baby.  Of course we make that decision autonomously, how much pain and torture we are prepared to endure depends on our own assessment of the psychological trauma we would suffer in terms of our negative body image if we chose not to go ahead with any given procedure (i.e. this will hurt but probably not as much as my boyfriend recoiling in horror at the sight of my hairy pits). However, if we are making that decision on behalf of someone else we have to be very, very clear as to the benefits of the desired outcome.

And what are the benefits?  Mum doesn’t gain anything from a hairless chin.  She doesn’t suffer if a few stray wisps scatter her face.  She’s not on the pull.  She doesn’t need to conform to society’s female ideal of an alabaster-smooth, pre-pubescent girl.  Equally if she goes swimming does it matter if a few pubes are on display?  How about a whole carpet of them covering the tops of her thighs?  We think nothing of swimming alongside a hirsute man in a public pool (although I have to say, once I was lane-swimming behind a very hairy chap and the aftershave / deodorant / synthetic aromatic product that was clearly trapped next to his skin by all the hair trailed in his wake so densely I could taste it in the water – grim, yes but should be have been evacuated from the pool?  Well, maybe.)

My point, as always heavily made, is that inflicting pain on someone to make them a more appealing sight to others is wrong.  I have a patient in her eighties, she is an articulate, fully cognisant woman in charge of all her faculties but she has the hairiest chin I’ve ever seen on a female. It’s a full goatee of grey and white. as if someone had trimmed off a wire brush and glued it to her face. She’d be well placed to audition for the bearded lady in the sequel to The Greatest Showman if there is one (Go on Hugh Jackman, you know you want to).  She must know that her face looks like this (her vision is fine) and yet she does nothing.  Why?  Probably and hopefully because she just doesn’t give a shit.  Her husband has pre-deceased her, she is happy and healthy, her clothes are comfortable and clean, she shows no other signs of self-neglect.  If people laugh at her behind her back, or even to her hairy face, Sod them.  She’s not going to routinely rip off half her epidermis for anyone.

So no, I will no longer be tempted to pluck out the occasional offending hair from mum’s chin because it will make her eyes water and she will look at me perplexed, as a kicked dog might, as if to say ‘Why would you hurt me?   What for?’  Why indeed.

I will however continue to fight the good fight against my own hair follicles, until I too reach an age where I question the sanity of pulling bits off my body to make myself more appealing.

 

 

 

 

In The Sisterhood  I talked about family members – those women who are duty bound, by virtue of shared genes, to help you out in a crisis.  But now in part 2 I’m going to address the more common-or-garden sisterhood figures who include (but are not exclusive to):

1. The friends (old and established or recent and transient)
2. The colleagues
3. The peer group
4. The women you don’t like much but who might get you out of a corner some day.

 

Don’t get me wrong, a woman isn’t automatically a member of your sisterhood because she has ovaries and  there are obvious weaknesses in the model of female solidarity:  There is, in the workplace for example, a curious reluctance to pass on the benefits of a hard won equality.  Women who will choose not to shortlist a female candidate for a post due to the fact that she ‘will probably accept the job and then fall pregnant’ (love the idea of falling pregnant – “There I was, walking along the street and Whoops! I fell on a penis”).  As a female GP I have heard colleagues debating this very subject (not the falling on penises bit although some A+E conversations have started that way) and I am always surprised when it’s the female doctors (often mothers themselves) who are the most vehement in their denouncement of these fertile perpetrators of economic crimes.  I would argue the case a little more, and often do, but I can see their point.  Hiring a new partner who then immediately needs nine months off used to be a royal pain in the arse but now it’s the difference between surviving as a practice or going under (I’ll spare you the GP recruitment crisis talk ).  And yes, I know gender discrimination is illegal in the workplace – if it helps, in the majority of circumstances we’ve ended up recruiting the young female partner, often because they are the only types going for the job in the first place.  And yes, they do usually go and pop out a baby or two but then they come back to the practice so riddled with anxiety and guilt that they work considerably harder and longer hours than they are paid for, trying to fit a full time job into ‘part-time’ hours whilst combatting the nervous exhaustion of early motherhood – so, a great result all round!

Women are not always happy to empower and enable each other and yet our rights have been hard fought for by those who owed us nothing and chose to sacrifice themselves for our futures anyway.  And while nobody is ever going to be as calculatingly mean and vicious to you as another woman can be (men just can’t compete on this score – sorry chaps) the flip side is that everywhere you look there are women out there supporting each other, emotionally, practically and selflessly.

Over the recent months there have been a couple of occasions where I have witnessed this at first hand:  Earlier in the year a friend had a sudden family crisis and had to spend significant periods of time visiting her sister in hospital.  Within hours of a call to arms the cavalry swung into action.  An emergency package of chocolates, flowers, magazines, booze and treats was delivered, family meals were cooked on a rota, childcare was arranged.   Everyone did as little or as much as they could manage because this woman was our friend and we wanted to help.

A couple of years ago one of my very best chums who lives a few hours away was diagnosed with breast cancer – a similar local cavalry came to the rescue and we, her friends further afield, provided what support we could from a distance.  The diagnosis meant that we all redoubled our efforts to stay in touch and to see each other more often and so the bonds are strengthened further.

Another example is a high functioning alcoholic who admitted to a group of close friends that she was no longer coping – this was clearly a secret she had kept for many years and was a very difficult thing to share but once she had there were women around to support her, pop round at possible crisis points (often when her husband was working abroad) offer advice and make life easier by deflecting attention at social gatherings when she turned down a drink.

My mum (to return to the focus of this blog despite having deviated slightly into the realms of quasi-feminist anecdotes) has a best friend, the wonderful Marge Beverage who I referred to in It’s a small world .  This legend of sisterly companionship has been my mum’s best (and sometimes only) friend for almost 40 years.  The friendship continued despite Marge moving house – she and my mum continued to meet up every single month without fail.  When mum was first showing signs of dementia (and dad was doing his best to ignore them) Marge must have realised that something was wrong but nobody thought to alert her (I assumed dad had done it, he assumed La la la, nothing to see here).  It wasn’t until I saw her at Dad’s 60th birthday party that I realised she had been worried sick.  She had been watching her best friend become more and more confused and withdrawn.  She had asked mum whether she was OK, whether she was depressed, whether all was well at home – and mum, I  imagine, had been completely bemused by the questioning and had offered no explanation (because for her there was nothing to explain).  At the end of each shopping trip Marge had been going home to her husband in tears, not knowing what to do or how to help.

And yet, at the point where other people might have given up, she ploughed on, resolutely continuing their shopping dates and providing just the sort of regular companionship that mum needed most.  Again, after the diagnosis when mum’s conversation and mobility decreased Marge didn’t walk away, she didn’t reduce the frequency of their meetings.  In fact she sent me a Christmas card that year saying how much she loved spending time with mum and how happy she was that they could still see so much of each other.  The shared shopping experience changed of course and Marge took on the role of shopping carer.  She helped mum buy presents for her grandchildren or oversize elasticated clothing for herself.  Once the retail therapy proved too difficult she took mum to have a manicure in the shopping centre every month instead (to the point where dad didn’t bother getting her nails done at any other time, hence the talons described here A little tale of painting nails.).

She has gone above and beyond what could reasonably be expected of a good mate – I remember only too vividly the horror of getting mum in and out of changing room cubicles, the awkwardness of helping her find her debit card, typing in the PIN number myself whilst trying not to look like I was robbing her blind.  It can’t have been a barrel of laughs but it is only in the past month that Marge has admitted defeat.  She was tearful but realistic when she broke this to my dad, having correctly identified that mum was no longer getting anything out of their monthly meet-ups.  In a way the ending of this ritual feels tragic having been such a significant feature of mum’s life but the positive thing to take from the story is how powerful their relationship has been.  The degree to which Marge persevered is testament to the strength of their bond and I’m sure my mother loves her for it.

 

There are examples of sisterly solidarity occurring up and down the country – friends who support each other through addiction, bereavement, divorce and illness.  There are men who do this too but one only has to look at my dad’s situation to see the limitations of many masculine friendships – he is a sociable and gregarious man with many good friends but he has no Marge Beverage in his life and the support he has comes almost exclusively from his daughters.  If the situation had been reversed and mum had been caring for a husband with early onset Alzheimer’s I think a wider support network would have stepped up.  It’s not easy being a bloke these days, particularly a bloke who is also a carer.  Which is where I have another little recommendation  The Selfish Pig’s Guide To Caring (I’ve used the Waterstones link because Amazon’s world takeover just gets me down).  I have basically held my dad down at gunpoint to make him read this and he agreed in his non-comital way that it was ‘good’.  That is praise indeed from a man who doesn’t read.  It is more than good – It is written by a man about caring for his wife who has Huntingdon’s disease and it is FAB-U-LOUS.  If you know any carers, but particularly carers who are chaps of a certain age who might not want to share their innermost thoughts on the matter and may not have anyone to share them with, then make them read it.  Hugh Marriott I salute you.

 

 

 

Life-limiting conditions are so called because they tend to reduce the length of a lifetime, in other words, bringing about a relatively premature death.  However, in mum’s case and with many other chronic illnesses, additional limitations become evident as the disease progresses and ‘Life-limiting’ can mean something altogether different.  Mum’s world is definitely getting smaller over time and although this shrinkage is slow and sometimes barely perceptible, it is marked by different stages.  Some of these milestones are related to mobility and some to do with diminished engagement and interest.  Since the diagnosis the key stages of reduction and loss are as follows:

• Stopping Driving (see Driving us mental)
• Stopping Childcare and Babysitting (see Talking to the kids about dementia.)
• No longer going to as many social events (although God knows my dad does his level best, when often it would be a far more enjoyable event if he went alone)
• Stopping attending WI meetings (this is recent, but it is fair to say that her contribution to the great bastion of society that is the Women’s Institute had been limited from the start. I would have been very surprised to see her in a Calendar Girls scenario with Helen Mirren for example)
• The loss of shopping – once the great love of her life and the focus for our Christmas girls’ weekends (see Dementia – the festive gift that keeps on giving.) this has now completely fallen by the wayside.  Even her best friend in the world, the lovely Marge Beverage (as my husband calls her because he can’t ever remember her proper name – he doesn’t have dementia by the way) who accompanied mum to the shops come rain or shine, through hell and high water, has conceded defeat.  She realises that mum no longer gets anything out of being dragged round the shopping centre – the ineffable beauty of consumerism is dead to her now.
• Limited attendance at family events – of particular note, my Aunt’s funeral last month and my cousin’s wedding planned for later this year.

Alongside the specific stages there is a gradual withdrawal into oneself that is also evident.  Mum went through a phase of loving her ‘Singing for the brain’ music sessions on a Monday but now she no longer sings along and dad is increasingly unsure as to the benefit or purpose of continuing.  Even the television, the stalwart entertainer of old people everywhere, is of limited value.  When it is turned on, she doesn’t look at it (even Coronation Street – that tells you all you need to know).  If someone turns it off she no longer notices. The same goes for books, magazines, radio and photographs.  It often seems impossible to engage her interest in anything.  Her mobility is reducing week by week and it seems likely that she will soon be unable to get up and down stairs safely so will be limited to single storey living and essentially housebound.  We then are presumably a few months away from being bed-bound.

This is the happy nature of her condition and we need to be realistic and to plan.  But (and there is always a but, as you know) is there anything to be gained from this smaller scale of living?  Should we be continually pushing the boundaries of our existence and expanding our horizons or is there enjoyment to be found in the everyday mundanity of a narrower life (you can see where I’m going with this – my usual rhetorical questions that lead to an affirmative)… Yes.  I think there is .

I have talked before about how dad continued to push mum into activities, sometimes  against all better judgement (see How much fun is someone with dementia allowed to have?).  His reasoning was that we wouldn’t know whether mum was going to enjoy something unless she tried it and this reasoning was sound, even if it was acted on in a slightly kamikaze fashion (I am reminded of him teaching us to ride our bikes by just pushing us down a hill and letting go or teaching us to swim by throwing us in the pool – we were children who learnt quickly it’s fair to say).  A bit of gumption and a gung-ho attitude is all well and good but with dementia there is a need to constantly adapt the approach and dad has done this.  He has pulled back a little and I no longer worry that I might see mum strapped to a glider going over our house or sat on a motorbike hurtling at top speed towards a ring of fire.

But he hasn’t given up entirely.  Whereas three years ago I was questioning the health and safety aspects of mum on a waterslide, a more recent decision has involved whether mum would be able to get into a hot-tub whilst staying in Cheshire with THE BEST HOLIDAY COMPANY IN THE WORLD (as previously featured in this blog When will there be good news? Wait… there is some!).*  Mind for You Holidays (it’s not the catchiest but you can see what they’ve done there) had contacted dad after the booking to say that this particular holiday destination had a hot tub with a hoist and would mum like to try it?  Now, a hot tub with a hoist initially sounded like something one might find in an S+M club but I assumed, given the clientele, that a gimp mask and crotchless trousers would not be required in order to partake in the hoist action.  We guessed that mum was below the weight restriction and, after some consideration as to whether it was really worth the bother, dad said ‘Yes!  Hoist away!’ (I expect he didn’t actually say those words).  A few weeks later we were sent a photo from Cheshire of a beaming mother, in her swimsuit, holding a glass of fizz in a hot tub full of bubbles – clearly a triumph and an example of a little thing making a big difference.

Other small things that have had increasing significance in our lives:

• Babies: The look on mum’s face when she sees a baby is a joy to behold – at a recent Village Hall event my neighbour’s new baby was quite the starring attraction – the highlight of a morning that had, up until that point, been marked by silence and glazed expressions.  Mum’s carer Alison has started taking her to the mother and baby singalong at the local library where she will happily stare at babies for hours.
• Food:  The appreciation of certain meals is effusive and vocal – my recent smoked salmon tagliatelle was wolfed down with appreciative noises and facial expressions that proved far more gratifying than my children’s usual response to such fare.
• Flowers:  A conversation about the primroses on her front lawn (I say conversation but I mean me talking about them) was held in the memory for the duration of the journey into the house (only a few minutes but this sort of information retention is now rare) and I was taken to the back garden to look at the new borders with some urgency.  I can’t remember the last time mum really wanted to show me something – it was like one of those scenes in a film where someone is learning a new language and they have a break-through making the other person understand them.  It was nice.

From a mathematical point of view this list of positives compared to the first list of losses gives a bleak total (X + Y = losing the will to live) but the day of the primroses and the baby in the village hall and the tagliatelle was a happy day for both mum and I.  Maybe I’m easier to please now.  That can’t be a bad thing.

 

 

 

* I would like to point out that I am not on the payroll for ‘Mind For You Holidays’ and receive nothing for my endorsements other than the hope that someone reading this might contact them and find out how fab they are.

 

 

I started writing this post on International Women’s Day, a mere three days before Mothering Sunday which may or may not be coincidental – I’m not sure whether early March has been designated as the key time that women of child-bearing age and older need the most recognition.  No matter.  My twitterfeed was awash with inspirational quotes and references to ladies of distinction and a few days later was swamped with ‘Love ya Mom!  UR the GREATEST!!’ so I was forced into contemplation.  During an extensive period of soul searching (the drive back from work) I realised that this year my own dear mum would be spending her first ever Mother’s Day in a care home.  It was quite a critical realisation, made more poignant / distressing by the fact that it hadn’t even occurred to me until I was deciding how many people the roast chicken would need to stretch to for Sunday lunch.

The eponymous absence on Mothers Day was not a permanent state of affairs – mum had not checked out of the family home for good.  It was merely a reflection of the once more curious timing that juxtaposes Six Nations Rugby matches against Mothering Sunday – a time for celebrating motherhood whilst recovering from hangovers and preparing for another four to six hours of solid TV-watching broken by occasional shouting / running up to the screen / fist pumping / sobbing depending on your nationality and your team’s ability to move a ball through a swamp.  Dad was in Paris for the France vs England match where it was established that the French were far better at moving the ball than the English.  My sister and I had been planning to share some of the respite care but both of were out on the Saturday night and due to a recent deterioration in mum’s ability to navigate stairs and toilets it was felt that the four nights would be best spent consecutively at a single venue rather than repeated migrations to the corners of the county.

 

As a result, this year I did not see or speak to my mum on Mothering Sunday.  I expect there have been years in the past where we have not been together but it is likely that these were spent apart for more jolly reasons – often because mum and dad would have been on holiday for the weekend.  Spending Mother’s Day knowing that my mum was in an institution was a first (Alzheimer’s being marked by many firsts, few of which are cause for celebration).  I found myself wondering what the staff in the nursing home think when someone ‘comes to stay’ for an important weekend – whether they have guests who only arrive at Christmas, Easter or during the summer holidays, rather like boarding kennels.  Do they assume that my mum has no children, or maybe that we live very far away and are not involved in her care at all?  Or do they honestly not give a toss about the whys and wherefores and just resign themselves to getting through another day infused with that distinctive aroma of overcooked food, bodily fluids and disinfectant?  Mum is after all, just another resident, remarkable only due to her relative youth – care home staff are usually diligent and kind but they are also often transient and unlikely to form a lasting bond with someone who spends three days very slowly walking along corridors looking vague before she goes home again.  I expect they don’t give it much thought, would it matter if they did?  Does it matter if they judge me, my sister or my dad for abandoning mum on the one day of the year she can call her own – particularly since she has no idea of what constitutes a significant day, in fact no grasp of the concept of days full stop?

No.  It doesn’t.

So, if we’re all in agreement on that fact – and we’ve chosen to march on relentlessly into Mother’s day unencumbered by actual mothers – are there alternatives (aside from the joys of being a mother oneself obvs) that make up for the loss?  I have a few friends whose mum’s have died, some in more traumatic ways than others.  There is nobody I know who is in exactly the same situation as me but there are people who have grown apart from their mums or who were never that close in the first place.  And to all these people I would say a clear YES!  There are other options for female support and nurturing: Welcome to The Sisterhood!

 

The Sisterhood – a guide for the uninitiated:

I am fortunate to have the Gold Standard of sisterhood arrangements – I have an actual sister.  Not only that but I have a sister who is close to me in age, close to me geographically and most importantly, is a wonderful human being.  I’m not going to say any more than that because I don’t want to make her totes emosh when reading this but in all honesty I don’t know how I’d cope without her.  So it is fair to say that number one on your list of surrogate mothers / providers of female companionship is your sister.  Even if you don’t get on that well, there is nobody else who has known you as long or who shares as many of your genes, which may come in handy one day when you need a kidney.

If you don’t have a sister, or if you have one and you really can’t bear her, then there are Aunties, Nieces and Mother-in-laws.  I’ve talked before about my Mother in law – she is a superstar – again, no further embellishment or explanation required.

Aunties are a funny lot.  Some, like my mum’s sisters, are a bit distant (the one in Canada can’t really help this to be fair).  These aunts are perfectly nice human beings but it would be an overstatement to say that they are involved in our lives now.  They clearly find mum’s diagnosis distressing and this has made contact more limited than previous but to be honest, they always did have a lot more shit going on in their own families than we did in ours and this resulted in a low grade resentment, which has not been compensated for by the fact that our family life is now shittier than theirs (don’t forget, it’s always a competition).

But then you have other aunts, like my dad’s sister, who came to look after mum last year.  These women are wonderful hybrids of all the best bits of your family.  This particular aunt died a few weeks ago and her loss is like a gaping hole in our lives – she was the most jolly and kind woman I have ever known – always giving her time and energy to others but not in a way that made anyone else feel inferior or patronised.  Much as the sadness about her loss persists there will always be a part of me that is eternally grateful that she was ever in our lives in the first place.  Her cancer first arrived on the scene when she was a mere 38 years old but then buggered off (with medical assistance) leaving her entirely unscathed (apart from missing an eye which she was characteristically hilarious / unpretentious about).  She was in remission for another thirty years before it reared it’s ugly head again, this time whipping her away sharpish and leaving everyone reeling.  This aunt was genuinely a woman who I could have phoned for advice about anything, without fearing judgement or censure (not that I really did anything worthy of censure).  This characteristic was alluded to during her eulogy with a story about a friend of my cousins who, as a teenager, had held a house party when her parents were away.  As is the way of these things, the house was trashed and the girl was beside herself.  My aunty spent the day re-wallpapering the lounge before her parents came back so that she wouldn’t get into trouble – I mean who does that?! For someone else’s child?!  She also took in foster children (despite their house being a pretty modest seventies semi already housing their own three kids) sent Christmas shoeboxes filled with presents to hundred of children over many years and  didn’t mind another of my cousins growing pot in the greenhouse (although maybe she didn’t know about that).  You get the idea – she was great.

If you haven’t got a great aunty (or event a great Great-aunty) kicking about, then you might have a lovely niece, cousin, step-sister or similar.  There’s a lot to be said for blood relatives (I refer you back to my previous point about kidneys).  But there are some women out there who don’t have any close family (geographically or emotionally) and even for those of us that do there is a major branch of this sisterhood as yet unmentioned – the mates.  I can’t possibly do this group justice tacked onto the end of such an already enormous post because you will all be asleep by now, so next up – The Sisterhood – Part 2 (where I consider the other main branch of female solidarity – your bezzie friends – and why I feel a bit sorry for blokes)

 

 

 

 

 

 

 

 

This is a post I have been wanting to write for some time but there never really seems to be a cheery opportunity to crowbar the old ‘planning for dying’ conversation into a blog – so I’ve decided to spring it on you unawares, because no matter what your thoughts on dying, it is something that will happen to you at some point (as I wrote that last sentence the sky outside the window turned ashen and it started snowing – I appear to have walked into a Dickens’ novel, excuse me whilst I don my fingerless gloves and shuffle by candlelight to my garret).

Death is a subject that I am comfortable with although this may be related to the fact that most of my dealings with the dead and dying have been professional rather than personal.  I have lost loved ones but these have been elderly relatives who have had the proverbial ‘good innings’ and the feelings of loss have been tempered by a sense that ‘it was the right time’.  Clearly for those who have lost somebody in a traumatic event, a spouse, child or parent or perhaps a friend who was young and in the prime of their life, death is a very different matter: a tragedy, an unacceptable ending, a theft.  For these people, talking about death and preparing for it may be something they wish to avoid and media coverage of these issues maybe distressing.  However, even for those who are uneasy with the topic it is vital that the conversation is heard and that awareness is raised.  At a recent End of Life conference the following statistics came as a surprise:

• Thirty percent of people in hospital on any given day are in their final year of life.  These people are obviously the inpatients – I wouldn’t want anyone to think that by walking into hospital to deliver a bunch of flowers or taking the snack trolley round the wards you increase your mortality risk.  Neither would I want people to think that the actual process of being admitted to hospital increases your risk – as Jeremy Hunt has shown, misuse of mortality data can have catastrophic consequences (alienation of an entire generation of doctors and widespread panic amongst the public who now believe that being admitted on a Saturday will actually kill them).  The statistic merely illustrates the fact that a large proportion of our inpatients will have died by the end of a year, which in itself is a reflection of the age and frailty of the average hospital admission.

• One percent of any General Practice list are likely to be in their final year of life:     i.e. one percent of the whole population of the UK if you work on the principle that almost everyone is registered with a doctor.  The vast majority of these people are not identified as being ‘End of Life’ and are therefore not aware of services that may be available to them (increased care, help with finances etc).  They are also unaware of the importance of having timely conversations with family and making their wishes known about their priorities for care as they near the end of life.  The challenge lies in identifying these people and encouraging these conversations to take place.

Basically there are a lot of people dying every year around the world and the UK is no exception.  People are generally living longer but they are also by definition older, frailer and sicker by the time they die and many may have lost the capacity to make decisions or the ability to communicate their wishes.  As a result people may be subjected to procedures, investigations and invasive treatments in the interests of prolonging their life way beyond anything that they would have wanted or indeed that any doctor would want for themselves.  There is signficiant anecdotal evidence that most doctors would not personally choose to undergo many of the treatements that they refer their patients for but in the absence of any information to the contrary we have to work on the principle of prolonging life – at whatever cost.

When mum was diagnosed (finally) we were advised to think about planning for the future and eventually an Advance Care Plan of sorts was forwarded to us (why the nurse who broke the news didn’t have one in her bag god only knows, it would have been about the only helpful thing she could have given us).  We duly sat mum down for a ‘family chat’ one day and there followed an agonisingly inappropriate discussion – we had left it far, far too late.  We were asking questions about whether she would want artificial feeding through a PEG tube or whether she would want to be resuscitated if she had a cardiac arrest and she had no clue what we were talking about.  Everybody was uncomfortable and even general questions like “What is important to you?”  and “If someone else was looking after you what would you want them to know about you?” were met with blank looks.  Eventually we realised we were beaten.

As a result we have been unable to plan.  We have to react to each change guided by a vague sense of what mum would have wanted if she was still her old self, combined with what she seems to tolerate now.  For example, I have alluded to the fact that she would previously have been mortified about looking even a little shambolic and I suspect that her old self would have said ‘shoot me now’  if I had told her that she would one day be wandering through the house with chipped nail varnish, greasy hair, odd socks and a back-to-front dressing gown billowing loosely around her portly frame.  But what do you know, she seems to be completely happy with her current circumstances and we have to resist the temptation to refer back to what she would have wanted, because we have no way of knowing for sure.

The advantage of an advance care plan is that we would have had some concrete idea of what she may or may not have found acceptable.  In fact any type of documentation or discussion about preferences for care can be invaluable for family when someone loses capacity or is close to dying.  It’s not legally binding (like an advanced directive) and is not as clinically distinct as a DNACPR (do not attempt cardiopulmonary resuscitation) form, but a general guide as to what is, or what would have been, important to that person can be a real comfort to those left making decisions on their behalf.  I have heard stories from both ends of the spectrum – patients who clearly stated that they wanted no intervention and to be able to die at home surrounded by loved ones and, less commonly, patients who want every single active intervention possible just to eek out another few hours on the earth.  There is no right or wrong way to make these decisions but leaving it to chance is reckless.  The old adage about death and taxes is true – this is going to happen one day, why would you gamble with something so important?

http://www.dementiachallengers.com/end-of-life-care.

http://www.goldstandardsframework.org.uk/cd-content/uploads/files/ACP/Thinking%20Ahead%20(3).pdf

https://www.macmillan.org.uk/_images/MAC136160115Your-life-and-choices-PPC-formFP20160823_tcm9-312039.pdf

https://www.alzheimers.org.uk/download/downloads/id/3423/this_is_me.pdf

 

And now for cheeriness……  A picture of a camel and a robin.  There.  Don’t say I never do anything for you.