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.

 

A note to all those of you who are unfamiliar with the social care system and NHS:

• The NHS (Gawd luv ‘er) is a vast lumbering institution set up to deal with your health care needs.  It is successful in many aspects, woefully inadequate in others but FREE AT THE POINT OF ACCESS.
• Social care is set up to deal with social needs – mobility aids, meals on wheels, residential care etc and it is MEANS TESTED.

Whilst neither system is flush with cash, social care is the poor cousin of the NHS (and that really is saying something) so you basically have to be a pauper to get any freebies.  Conversely, even if you are The Duke of Richminster visiting your London home and you have the misfortune to crack your head open slipping on the marble steps of your basement pool you will be treated free of charge by the NHS.  Odd no?  The state will sort you out if you are ill, irrespective of how affluent you are, how expensive you become or what a massive economic drain you represent.  The state wants little to do with you however if you are merely old and frail.  Dementia is a medical condition like diabetes, but whereas with diabetes the consequences are also medical (retinal damage, kidney damage, amputations, heart disease) and therefore are treated free of charge, dementia’s consequences are usually social and therefore disregarded – until that patient crosses into the medical world by falling downstairs and breaking a hip or aspirating their tomato soup and giving themselves a pneumonia.

The Kings Fund have developed a lovely set of short video clips to explain this in more detail, using (for reasons best known to them) a variety of kitchen utensils and condiments to represent different parts of the welfare state:

https://www.kingsfund.org.uk/projects/what-is-social-care

Even with such a helpful guide (and a speaker who appears inordinately fond of extravagant hand gestures) the reality, in practical terms, is that it can be very difficult for families and carers to know what they are entitled to and how to access different aspects of care.  The days of your GP having intimate knowledge of the multitude of agencies and organisations that may assist you, being able to locate the forms for these agencies and help you complete them – or even knowing telepathically that you may need assistance from these organisations in the first place – are gone.  GPs need to concentrate on all the annoying medical stuff nowadays, they can’t be counsellor, vicar and friendly uncle wrapped into one Doctor Findlay of loveliness AND sort out the diabetes, heart disease and possible cancers – soz.   You are essentially on your own and you have to shout pretty loud to make yourself heard above the clamour of others in a similar situation.

The first hurdle is identifying when you need help.  In our family’s case the bit of mum’s brain responsible for purposeful motor function continues to be nibbled away by the dementia mouse and in the past couple of months she has been less able to navigate stairs, get into a car or even sit on the loo.  Some of the issues are to do with momentum; if you are walking mum (excruciatingly slowly) towards an car with an open passenger door you can often convert that walk via a fairly smooth transition to a foot in the footwell, a turn of the hips, a bend of the knees and hey presto, mum is in the car seat.  If you hesitate however, you are lost.  Abandon hope all ye who enter here. This is Tiger country etc etc.  Standing beside the open car door trying to persuade a reluctant and confused person to complete the complex sequence of manoeuvres required to gain access to the object that is no longer recognised as a vehicle is almost impossible, as is wrestling her in (proving dangerous for both wrestler and wrestlee).  Compound the situation by adding darkness and rain or perhaps an icy path to the car and you have at least thirty uncomfortable minutes ahead of you.

Equally, getting mum into the bathroom is one thing, getting her to realise that she hasn’t been to the loo for hours and probably needs to go is another and finally, persuading her to actually bend her legs and sit down in a fairly central position to avoid sliding ignominiously off the seat can seem a herculean task of such mammoth proportions that the risk of urinary retention may be considered preferable (I jest, urinary retention is NEVER preferable).

It can seem that there are no easy solutions, just the bleak prospect of fewer car journeys, fewer trips to the first floor of a building and increasingly poor toileting, but HANG ON!!! Have I ever left you with an unremittingly negative picture before?!!!! (yes, many times).  There ARE easy solutions – and these solutions come courtesy of a wonderful, wonderful group of people called Occupational Therapists – HOORAY!

Occupational therapists can assess specific individual needs and then tailor very practical advice with brilliantly simple gadgets to enable all sorts of daily activities – it’s not just bath rails and non-slip flooring – oh no.  The question, as with all these things, is how to access these modern day miracle workers?  The answer, as with all these things, is dependant on where you live, how well you understand the system and whether you want to wait for a referral or pay for a private assessment.  My suggestion would be go to your GP.  I know I spent the entire previous paragraph counselling against this, I know we are confused people dealing with extremely confused people and me contradicting myself doesn’t help.  Ideally what I mean is go to your practice and a friendly receptionist may be able to help you without using up a ten minute medical appointment.  If not, your GP can probably take a short break from saving lives, curing cancer etc and point you in the right direction.  When dad went to ask in his local practice he was signposted to a lady who spends her entire week co-ordinating care for older people.  I mean this really is a local health authority triumph that almost makes up for the time we spent as a family in the sixth circle of hell trying to get a diagnosis.  Also look on your local council website.  You can often request a social services assessment yourself and by now you probably need to look at other aspects of social care or at least be known to the services (getting one’s foot in the door, or indeed, one’s walking frame in the door is the hardest part).

And, lest we forget, there is always Youtube – see below.  Be careful though – googling ‘videos of people on the toilet’ could get you into a tricky situation.

 

TTFN

 

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.