It’s another cheery one for the summer holidays – Assisted Dying and Dementia!

There was an excellent article Dementia is our collective responsibility  in last week’s Guardian written by Nicci Gerrard, an erudite and considered commentator in this field.  The main thrust of the article was the idea that society needs to take ownership of dementia, understanding that it is now a common enough condition to be considered universal (her concluding statement; ‘If not you, someone very near you. If not now, soon.‘ says it all).

As is sometimes the case, the comments following an article such as this can prove to be more polarising and provocative than the original piece – after all, one purpose of journalism and sharing a viewpoint is to stimulate discussion and debate. This particular article presaged a tidal wave of comment regarding the option to end one’s life when given an ultimately terminal diagnosis of dementia, slightly missing the original point but channeling the worst fears of readers who dread the lack of control that dementia brings.

There is a view that Assisted Dying is the key to restoring this control. People cling to the notion that such a process would enable them to end their life prior to the indignities of incontinence, immobility and dis-inhibition.  They hope to be able to make a rational, detached decision that; “Enough is enough – I am no longer myself and I no longer wish to burden this world with the thing that I have become.”

And indeed, that hope – the idea of ‘taking back control‘ (now where have I heard that before?) – is so pervasive that most would welcome such an option with open arms. I entirely understand these sentiments. It is a scenario I have considered myself, as has everyone with a family member unfortunate enough to have a progressive neurodegenerative disease. We have also all surely debated the ethics of aggressively prolonging life in the husk of the person we used to know. But, in these musings we often come up against the ‘How?’ and the even stickier wicket of ‘When?’

Assisted dying was initially legalised for extreme cases of intractable suffering (and I am not going to open that old can of worms about ‘suffering’ and dementia because it DOES MY HEAD IN). Where the law, the medical establishment and the wider society of a particular country could see and accept that an individual was suffering beyond all hope and redemption there seemed to be a case for allowing an end to it. So far so good. This all sounds reasonable, humane and morally robust.

However, one man’s intractable suffering may not be the same as another’s. There is now a situation where people with what is perceived to be ‘less intolerable suffering’ are not allowed to end their own lives. Their blighted existence, or the conditions they live with, have been deemed ‘tolerable’.  Some of these people have argued that it is against their human rights to discriminate against them in this way. Who is The State to say what is bearable for an individual? Who makes that decision to say, “Yes, Mr Jones, on my checklist your particular scenario constitutes intractable suffering. Please proceed to the departure lounge” ?

Maybe instead we should leave it to the individual to decide for themselves whether their continued presence on the earth is worth preserving. But in some countries being “tired of life” is now considered sufficient indication to assist a person’s death.  Do we really want to ease people off this mortal coil because they are bored by living? Could we not try and make their lives more fulfilling instead? And what about those people who have been persuaded that they are a burden or that they would be better off dead – should doctors really be the final arbiters in existential questions such as ‘what is my life worth’ and ‘what is the point in being alive any more’?  We are scientists after all, not philosophers.

Another question (and this topic is full of them) is whether someone who is suicidal can really be deemed to have capacity? We detain people under the Mental Health Act if we perceive them to be a danger to themselves. We admit them for treatment, ‘section’ them, medicate them back into believing their life has meaning and worth. Isn’t saying ‘I want my life to be over’ openly admitting to being an active danger to oneself? Again we return to the cognitive ability to make these decisions which is so pertinent in dementia. Because making an active decision to end life requires mental capacity and dementia robs people of that very facility.  An unhappy conundrum.

When do the scales tip from being cognitively sound and able to say ‘I want to die now‘ to becoming the individual we fear; the one who doesn’t even really understand what it means to be alive any more? And from a more practical point of view, when do we then sign that document, book the flight to Switzerland or take that lethal cocktail?  If there was a magic time frame, a moment in the disease process where one could say with certainty ‘this is it, the end of my mind and personality, the end of my time as a functioning member of society. Now it has to stop,’  maybe assisted dying could work. But there isn’t.

So, does someone with a dementia diagnosis choose to go before they lose capacity, thereby potentially missing out on a few more years of good quality life spent with one’s family? Henk Blanken’s article for The Guardian’s Long Read My Death Is Not My Own is, as the name suggests a long read, but well worth it, not least because the author has full cognitive function but is facing a future where he may not. He is also a citizen of a country where assisted suicide is legal, well-supported, openly discussed and, some may say, actively encouraged.  For him to suggest that there is a problem with the underlying principles allowing people with dementia to access assisted dying in those circumstances is significant.  People who currently live in countries where assisted dying is illegal talk about how a change in the law would help those with intractable life limiting conditions to have a dignified death, but the vast majority of people who I see at the end of life do not have the capacity to take advantage of this process, even if it were legal.  So what is the answer?

Personally I think we need to take a slightly different look at things.  We are working on the assumption that there is only one way to actively intervene in our own destinies but in reality there are countless small decisions we can make to affect and effect our own demise.  There is a difference between ending a life and simply not prolonging it.

Currently in the West there many things we do medically to extend life, in fact one could argue that we extend it unduly and against better judgement. We actively resist nature taking it’s course. Medics work on the principle that if something can be treated we should treat it or we should at least offer treatment.  The offer is made in such a way that the patient and family assume proceeding with the treatment would be the right thing to do, consent forms are signed, tablets are taken, life is prolonged and lengthened, and on we go.  I have see patients in nursing homes who have, what would appear to be, fairly poor quality of life that is preserved, nurtured and medically enhanced far beyond what would be considered ethical in an animal. The level and type of intervention varies but to give an example: Let’s say a person with advanced dementia reaches a point where they start choking on their food and a decision is made to artificially feed them. This may be considered the ‘safe’ thing to do, particularly if the options are presented to the family in the following terms: ‘Do you want to…

a) see your loved one choke on a piece of cabbage and possibly die of an aspiration pneumonia

or,

b) have a simple procedure to allow sustenance through a tube in their tummy that will enable them to live for longer?’

The answer most families plump for is option b. The answer I would go for and hope that my family would choose for me (if my quality of life was sufficiently poor) is a. Pneumonia wasn’t called ‘Old Man’s Friend’ for nothing and two, three, four further years of being bed bound, at risk of pressure sores, unable to communicate, unable to even eat food any more, seems infinitely worse than a short bout of respiratory infection and a Cheerio Lads. (Note that artificial feeding for people with a good quality of life is often an excellent treatment option – I’m just using it as an example of a life-prolonging intervention that may not always be appropriately administered).

This planning around decision-making processes is perhaps easier for me because I’m a doctor. None of us can predict what is going to happen but I am at least aware that the medics don’t have all the answers and neither do they want all of the responsibility. I know that I am well within my rights to say; ‘I don’t want that treatment for myself’, or, ‘No. That treatment for my mother would not be appropriate at this point.’ I’m happy to take ownership of those decisions even if it brings about a slightly earlier death, maybe even because it brings about an earlier death. But people without a medical background simply aren’t aware that they are allowed to request a ceasefire in the battle for life, either for themselves or on behalf of a relative, so they take up the offer, they go along with the plan, they ignore the nagging voice of doubt because the nice GP or paramedic says that Dad needs to go into hospital and have intravenous antibiotics or he might die.  They don’t say to themselves, would Dad actually prefer to die?  Or if they do, they feel completely unable to voice that opinion out loud for fear of being cast out of normal society or arrested.

Wouldn’t it be easier if those who want to die, those who don’t want to live any longer and those who wouldn’t have wanted to live like this are not actively pushed along the path of existence any further than they need to be?  There are many options for withdrawing intervention and allowing natural death to occur earlier; stopping preventative medication for one thing – why take statins to prevent heart disease, why take anticoagulants to prevent a stroke if actually the idea of a quick coronary or brain event would be just the terminal incident you’re after? There just needs to be a common sense approach and people need to be treated (or indeed, not treated) on an individual basis.

Obviously most people would wish to be kept comfortable and for their symptoms to be alleviated, so if you were in pain you would have the best analgesia, if you were nauseous the best anti-sickness medication etc. Palliative care in the UK is the envy of the world. We are great at looking after people who are dying, we’re just not very good at allowing them to tip into that category. Instead we let medicine force their bodies into a longevity that their brains can’t keep pace with.

Surely it is better to keep the lifesaving stuff for people who actively want to carry on living and simply withdraw it from those who don’t? As doctors our default position should not always be to aggressively investigate and manage frail people with a terminal illness – we don’t have a mandate for that. Instead we have a duty to do the best by our patients, to do the right thing. ‘Do no harm’ should have higher standing than ‘Keep alive at all costs’ – I think if the public knew that a more nuanced view would be taken by the professionals involved in their care at the end of life perhaps they wouldn’t fear it so much.

 

P.S.  This is a controversial post and I am sure I have over-simplified in some areas, over-looked others and probably ridden roughshod across some readers’ strongly held beliefs. Like all my blog posts my intention is not to cause widespread offence and outrage but to make people think. However, I am fully expecting a backlash of biblical proportions….

 

“Keep in touch with yourselves!“ was a phrase used by my father when departing a get-together, usually followed by; “Love to the family!“ – the comedy element coming from the fact that we were the family, obviously. Like most fondly remembered sayings and mottos, you kind of had to be there, the side-splitting humour doesn’t translate terribly well and would be unlikely to win me a spin-off series, but more pertinently, I’ve realised we don’t say it to each other any more.  Dad taking his leave of us is no longer an event packed full of light hearted japery – and without mum rolling her eyes at his idiosyncrasies the in-jokes lose their impact.

However, it seemed a good title for this post which is concerned with the importance of carers caring for themselves.  A wealth of blog posts, newspaper columns and self-help books have been published on the topic and I suspect it’s unlikely that I am coming out with anything groundbreaking here – but as far as I’m concerned the profile of carers can never be too high, the unique and lonely plight of a carer can never be over-estimated.

It follows that if we are concerning ourselves with the needs of carers we must not only highlight the problems of burn-out / stress / depression / pure unadulterated rage – we must also look at answers to these problems.  Increasingly I am aware that in this country, and throughout the developed world, we are constantly wringing our hands about our universally deteriorating mental health without addressing the possible solutions.  This is usually because they involve money, whether it be funding acute and community psychiatric services or asking social media platforms (ever so nicely and politely) to stop promoting suicide sites to our vulnerable teenagers at the risk of a minor drop in their astronomical profits. Anxiety is rife, individual and collective self-confidence is at rock bottom – and most people are teetering on the edge of an existential crisis on a daily basis, worrying about climate change, antibiotic resistance, Brexit, Trump… (my current faves).  Add into this febrile mix the constant, grinding hideousness of caring for someone who no longer recognises you, offers no emotional connection or payback for the care you provide and, in fact, has the potential to wound or insult you physically or verbally – and you have a recipe for a pretty miserable day.

Anyhoo! Crashing on! The reason for this post is to look at the opportunities for escapism out of this dire quagmire.  The good news is that there are things you can do to lose yourself (or indeed rediscover yourself) for a while, whatever the circumstances.

1 – Twitter (other social media platforms are available but I don’t really understand them) 

Recently someone contacted me on Twitter having received the devastating news of her mother’s dementia diagnosis.  I recognised the panic in that single tweet and thus, hearing the claxon call of distress I responded as soon as I could.  My tweeted reply alone would clearly not have been enough to single-handedly rescue this person (feel the hubris) but it did trigger a deluge of advice from all the corners of the globe. This is not because I am some sort of social influencer (‘Really?’ I hear you cry) but because it is incredibly easy to start the dominos off. Within moments there were people getting in touch offering support, advice, smiles, virtual hugs and kisses, thoughts, prayers and practical local resources (which I suspect may have been the more useful of the above).

I have talked about Twitter before and whilst I can see that there are problems with the  ‘Wild West / Here there be dragons nature of the medium, I have never found it to be too antagonistic.  There are some awful individuals out there but I knew that already from work and life in general.  Trolls, shaming and rape threats aside, I consider Twitter to be mainly a force for good.

2 – Exercise / Physical activity / Fresh air / Walking the dog

I’ve put these all in the same category under a general heading of  PE-teacher-isms and obviously all true but dull to write about.

3 – Sex and Drugs and Rock and Roll

Not dull to write about but beyond the scope of this blog and my limited coolness.

4 – Games

Not the outdoor variety as mentioned in point 2, nor the clothes off variety as mentioned in point 3, but the good old fashioned chess / bridge / cribbage / backgammon / tiddly-winks combo beloved of elderly French-men in provincial cafes and also my father, who is neither elderly nor french.

5 – Cooking and Baking

Good for many of the same reasons as point 6 below; therapeutic, practical and immersive. BUT potentially perilous for the waistline of carer, caree and attendant friends or relatives who will receive and consume the fruits of your labours with varying degrees of restraint, or lack of.

6 – Creativity / The Arts

My personal favourite; a sorely overlooked means of escapism and life enhancement in its many forms.  Painting and drawing can be enormously beneficial as well as virtually free (other than materials). Pottery, sculpture, knitting and sewing are often sociable (as evidenced by the success of Stitch and Bitch groups) as well as productive of tangible items that may even be of some practical use, so long as someone like me isn’t the creator or designer.

Music too, whether listening, playing an instrument or singing – all activities can be as social or personally mindful as you wish and all have proven therapeutic benefits (it’s not a scientific journal so I’m not going to reference this comment with articles of evidence, but just ask Gareth Malone.)

And finally, the best of them all – reading and writing; free at the point of use, no spendy outlay, no materials needed – other than a book or a pencil – and the greatest ever means of escape without having to actually leave your own home, or the person you care for.

I started this blog as a means to off-load, a therapeutic intervention of sorts.  I have always used writing to do this; the diaries I kept through medical school, whilst neither as side-splittingly hilarious or beautifully poignant as Adam Kaye’s  This is Going to Hurt, are nonetheless fairly hair-raising and I have continued to scribble away when the mood takes me, writing articles, entering competitions and having the odd moment of recognition and success (including the offer of a book deal which admittedly looked a bit dodgy. Reader, I didn’t take it.) And writing this blog has been cathartic and satisfying for me, although you may beg to differ.  But recently, as avid followers will confirm, the blog posts are dwindling. This is not because I am any busier than previously but because there is no longer very much to say.  The funny anecdotes have dried up – mum simply doesn’t do anything remotely amusing any more, in fact she doesn’t do anything. Which is fine. She’s not a performing monkey after all and the blog is about me and helping others like me, not about pretending things are more entertaining than they are.

If I had wanted to write about practical and medical aspects of dementia, I would have done so.  Equally, if I had wanted to give a sanitised, ‘everything is brilliant’ view, I might have considered it (unlikely – they really piss me off) but this blog was always about trying to keep things honest and lighthearted. There are plenty of sensible, seasoned bloggers out there who can tell you all you need to know about the serious aspects of dementia, and whilst I value their work enormously, I never wanted to be one of them.  Equally I don’t want it to deteriorate into a bitter rant about perceived injustices – I don’t feel especially hard done by; life is shit for many people in many different and horrid ways and I consider myself lucky. I really do.

A post I wrote a few months ago basically outlined the limits of mum’s current existence and I had a profoundly upsetting comment on the back of it, telling me that I obviously didn’t love my mother and had no regard for her as a human being.  It was the first time in the four-year history of mumhasdementia.com that I’ve had feedback of that sort and it wasn’t a high point, to be honest life is tough enough without additional, virtual aggro. But it was payback for being unflinchingly honest, and that is sometimes par for the course. I am not a purveyor of fake news. My product is sold as seen.

So, I will continue this blog in its slimmed down form and gain strength from the positive feedback I receive. I will continue to read all the fiction I can get my hands on and write stories until my mind is quiet – to wallow in an imaginary world when reality bites. But I urge you all – those of you caring for someone with dementia or those of you who have stumbled here accidentally – to find your thing.  The thing that makes you happy – and as long as it’s not illegal and doesn’t make anyone else feel rubbish, then you crack on. Whatever gets you through the night.

 

 

My last post was a ranty one – hands up, it’s a fair cop.  I allow myself a ranty post on an annual basis and this was it (obviously, there is now absolutely zero chance of anything bad happening to mum this year that might warrant further ranting – because that’s how it works – phewf what a relief). The post generated a bit of deserved push-back when  some followers took umbrage at the suggestion that residential care would be the horrific Doomsday scenario I had envisaged.  Their case, politely and kindly put, was that residential care can sometimes be the best thing since the proverbial sliced bread, and that for me to be perpetuating the myth that these institutions are run along similar lines to Bedlam, was unhelpful and frankly, a little disappointing.

I agree.  I overstepped the mark.  I painted a picture where, in the one corner we had a pastoral scene of loveliness; mum in the tranquil surroundings of home, attended to by smiling, rosy-cheeked family members and spending her last days basking in the warmth, luxury and comfort of our domestic idyl. And in the other corner we had a Fourth circle of hell, Dickensian workhouse (insert any other literary allegories at will) horror show with mum huddled in a corner, manacled to the other inmates, sitting in filth, howling, wailing and gnashing her teeth. Top marks for me, master of nuance and subtlety; I gave you a binary, Brexity scenario, and we all know how useful that type of thinking is.

In my defence, I was deliberately highlighting the extremes because I was frustrated by the lack of available options.  I still firmly believe that if a family wants to keep a loved one at home and if the person is happy at home, there should be the capacity in the system to allow such an eventuality.   I am also somewhat blinkered by my professional observations of poor care homes in action; some things you can’t un-see. But I accept that in many circumstances residential care can be a good outcome, sometimes better than fighting to stay at home in the face of significant odds.

Below are some of the very encouraging replies and responses to the last post.  They are so detailed and helpful that I felt they deserved their own little slot on the blog (my generosity knows no bounds) and hopefully they will help add a little balance to my previous Daily Mail shock-tactic reportage.

 

 

“Advantage of residential care = 24/7 staffing/company, professional help with lifting, mobility, eating and continence. We all feel person best off in own home, but condition changes & cognisance/priorities with that. Guilt at considering move may be unwarranted” – Ming

 

And a little update on our current domestic arrangements: 

• Mum still at home
• Wheelchair in the process of being purchased
• Wheelchair accessible car also being ‘actively looked at’ (dad’s words)
• Chiropodist in attendance (again, privately funded)
• Care agency contacted (multiple agencies contacted but only one replied) and can provide care in home for two hours a day without financial ruin in the short term
• District Nursing team still to respond
• Social Services still to respond
• Dad continues to be bullied relentlessly by both daughters – when describing situation above he said “It’s basically all ready to go when I push the button” – to which the obvious response would be “PUSH THE F##KING BUTTON THEN! OMG YOU ARE COMPLETELY IMPOSSIBLE” etc etc – but if there is one thing I’ve learnt over the past ten years with dad it is that he has to do this in his own time. My sister and I can chew our own faces off with frustration but it makes no odds.  At least he seems happier – and at least there’s a plan.  And at least we can afford to access the above – WTF do the people who are just above the threshold for social care do?

 

On that cheery note I leave you – big kisses to you all, especially those who take the time and effort to share your experience for the benefit of others XXX

Why is it so bloody hard to keep a loved one in their own home?

Why, when the NHS and Social Care budgets are stretched to maximum capacity, is it so very difficult to say ‘let’s provide residential care in someone’s actual residence‘?

God knows.

 

 

We have reached a point with mum where things are difficult (note the understatement).  Her mobility is restricted, she has no understanding about putting one foot in front of another or transferring her weight to maintain an upright position.  A geriatrician once described to me the risk of falling in the frail and elderly – he said that it is similar to flying a plane – the majority of problems arise during take-off and landing.  Whilst this explanation did little to allay any fears I may have about air travel it is a truth I have seen borne out over years of working with older people.  Once upright and moving they become confident and the momentum seems to carry them forward, reinforcing neural pathways and muscle memory.  I have described before how getting mum into the car could sometimes be achieved if one could engineer a seamless natural progression from walking, to seeing the open door, to stepping in and sitting down.  If there was a pause, all was lost and the series of actions made no sense to her.

Take off (getting out of a chair) and landing (sitting down in a different chair) can’t now be managed independently. They have instead become a project involving at least one other person and a combination of wrestling, heaving and dropping haphazardly whilst hoping for the best. Imagine moving a very drunk person, a person so inebriated as to be almost comatose. Now maybe add in some recreational drugs to instil a degree of paranoia and fear rather than the giggling stupor that would accompany alcohol alone (let’s say someone who has consumed two bottles of tequila and popped a couple of tabs of acid whilst watching the Blair Witch Project and listening to thrash metal).  Moving mum is worse than moving a dead weight because she panics and actively resists your efforts.  One is constantly aware that the process of transferring her is distressing for both parties; she seems to find it terrifying and does not understand our explanations of why she needs to move – and when your lumbar spine is screaming at you to stop, it is tempting to abandon the project altogether.  But sometimes she does need to be moved.  She is not bed-bound – yet – and I know too well the slippery slope of decline that will surely follow a period of confinement to bed (pressure sores,  blood clots, swallowing issues, chest infections, urine infections, the list of joys is relentless).  I would like to delay the inevitable for as long as possible and that relies on keeping her mobile.

Add into the mix the fact that there is now absolutely zero communication between mum and the outside world and the issues become more complex.  If mum could understand why we needed her to move her bottom slightly forward into the chair perhaps it would feel less of a molestation.  Similarly if she could tell us whether she wanted a drink or if she was getting a bit too hot sat in the sun, then attending to her needs would be infinitely easier.  We now have two identifiable emotional states of being – passively ‘okay’ and actively ‘not okay’ – but no real way of distinguishing what causes a shift from the former to the latter. So, as I say, things have become difficult.

However, dad is still managing – whatever that means.  The situation has not crossed any red lines regarding safety – mum is not wandering (evidently) and is not exhibiting any of the challenging behaviours associated with dementia (I know there is a universal hatred of that phrase but by ‘challenging’ I mean that mum is not smearing shit on the walls or throwing punches at people’s faces – hey-ho, small mercies). But the situation feels precarious to say the least.  The risks of a fall and perhaps a subsequent hip fracture for her are enormous, the risks of a slipped disc or a complete mental breakdown for dad are equally huge. And again we return to the age old conundrum of what are we waiting for?  How bad does it have to be before a change is needed? And what is that change?  Because, although I’m skirting round the issue, clearly what I mean is, Does mum need to go into a home?

 

Here is my best case scenario:

• Mum stays at home with dad
• Dad gets carers in twice a day who can get mum out of bed, get her washed and dressed, give her breakfast and transfer her to the sitting room.  They would then return at bedtime and reverse the process, popping her on the loo before bed for the necessary (mum is not yet doubly incontinent – as I say, small mercies)
• The District Nurses come in to assess mum regarding continence, pressure areas, risk of infection and alert the GP if there are any acute health needs
• The Chiropodist sorts out mum’s Quentin Blake toenails
• The Occupational Therapist and Social Services Manual Handling Lead (who knew but apparently there should be one) assess mum and provide hoists / sliding mats / raiser cushions / water-flow mattresses as needed
• Dad gets a wheelchair for mum, a nice padded one that is comfortable to sit in all day and has been designed with sufficient ergonomic insight as to stop her sliding down and out of the chair like a blancmange.
• Dad gets a wheelchair-adapted car – he can then take mum to the shops / park / daughters’ houses and, accompanying a more visibly disabled person he would probably discover a greater level of tolerance amongst the public (sad but true)
• Dad has increased freedom and can enjoy time spent with his wife (in a limited capacity) without having to worry too much about intimate hygiene issues or wiping gravy off her chin
• Mum is comfortable, well cared for and in familiar surroundings – her daughters visit regularly and bring the grandchildren – Easter, Christmas and family birthdays relocate to mum and dad’s house like the old days and mum remains central to the life of the extended family
• After a period of time, mum’s health deteriorates further but she has a detailed care plan – inappropriate intervention is avoided, any palliative care needs are addressed and she dies comfortably in her own bed surrounded by those who love her

Cost to NHS / Social Care = minimal

Emotional burden on family = tough but mitigated by knowing we are ‘doing the right thing’

Impact on mum’s wellbeing / quality of life = as good as it can possibly be

 

Here is what I think will happen

• Bugger all help will be available despite willingness to pay through the nose and sit for hours on the phone waiting to be connected to the relevant department
• Mum ends up in residential care, confined to bed because nobody has the time or the inclination to move her
• Because she is ‘no trouble’ she will quietly moulder in a side room, occasionally attended to by a stressed overstretched HCA who is being paid less than the minimal wage and just wants to get back to her family in the Ukraine, since Brexit has made her feel completely unwelcome
• Mum is visited regularly in the early weeks by her husband and daughters who will become increasingly depressed and guilt-stricken about their role in her incarceration and start to avoid visiting – not least because she will not appear to know who we are, or display any positive reaction to our visits
• Mum develops some sort of infection, the out of hours doctor is called and she is admitted to hospital with little thought as to the appropriateness of such a course of action
• Mum dies on a hospital trolley in A+E – entire family feel terrible about outcome for the rest of our days – Yay!

 

I will keep you posted…… (she says darkly)

 

 

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.