Keep in touch with yourself – self care for carers

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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.

 

 

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Apologies – many Care Homes are clearly a FORCE FOR GOOD

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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.

 

“My heart goes out to you…this is an awful dilemma. We kept Mum in her own home for nearly five years with live-in care provided by a private agency and cover care for three hours an afternoon, provided by a different agency. Yes, it was expensive, but it was worth it. Where she lived, at least, an OT assessment was reasonably quick, provided one paid for the assessment, and we found a home visit chiropodist. The district/community nurse bit was much harder; we got visits from a community nurse in the mental health team at times (when she hadn’t been discharged by the psychiatrist – something that happened if we didn’t contact the service for six months). We also had a visit from a nurse in the Bladder and Bowel team (different service), who was great and was able to scan Mum at home and sort out the supply of continence pads etc. We also had a very understanding GP who would make a home visit, if necessary. Mum was, however, still mobile and so pressure sores and wheelchairs etc were not potential issues and neither was the difficult moving about, but some agencies at least are able to supply appropriately qualified people.
That is not to say that everything was plain sailing – getting a urine sample out of Mum if we suspected a UTI was next to impossible and there was, at times, a low level background feeling of enormous responsibility and dread about what else might go wrong.
Our experience of a care home, now she is in one, is far from your fears and, unless she becomes acutely ill, she is very unlikely to end up in hospital. The care home has a nursing floor as well, with a special section for those with dementia and whose needs are great enough to be on the nursing floor (the dementia unit is headed up by a mental health nurse and always has at least one general nurse among the two on duty as well as the carers). It is not at all a bleak or difficult place to visit. Sometimes Mum is asleep and, when she is awake, she doesn’t necessarily recognise us, but we can still read stories and nursery rhymes together (she knows all the words), listen to music or walk in the care home’s garden. The staff (many, as you suggest, from EU27 countries) recognise us, are friendly and are observably good with Mum, who seems generally happy with their interactions.” – Annabel

 

“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

“Soon after my wife was diagnosed with Alzheimer’s a retired nurse told me of her experience looking after her husband. She lived by the mantra “I was a nurse, I can look after anyone”. So she looked after her husband at home for several years because she “was a nurse and could look after anyone”. Eventually it became so difficult that she had to give up and her husband moved into a care home. She had failed. After a week she realised she hadn’t failed, she could sit with her husband whenever she wanted, take him for walks and have meals with him. At the same time she could have a good night’s sleep and not have to do any of the messy jobs. After a few weeks she started thinking of herself as a wife not a carer. He was only at the home for 6 months but her memories of him now are of a husband not of a burden.
If you’re concerned about what happens to your Mum then take control of the situation (along with your Mum and Dad). Look for suitable care homes, visit them and ask yourself “could I live here?”. If your Mum is likely to be self-funding for a couple of years then forget Social Services, they don’t have to be involved. Start by looking at a purpose-built care homes, it will be easier for residents and staff. Your Dad will know that even with all the adaptations you propose a normal house or a converted manor house are not ideal for someone with such mobility issues.
My wife has just moved into a care home (“put her in a home” sounds like a bad Eastenders ending). Our house was on the limits of being suitable, imagine mobility as you describe but with full incontinence and Parkinson’s causing random falls with no warning. The house had no meaning for her despite the fact that we’ve lived here most of our married life and brought our children up here. Trips out were scary as she had no idea where she was going until we were there. She enjoys company but even if visitors and daycare take up 20 hours per week that leaves 148 hours with just me. She had chosen her care home many years ago as it does daycare through to nursing care. It suits our “ageing hippy” attitudes with no explicit rules and an attitude where the resident knows best and the carers do their best to make it happen. The carers also enjoy this as their job becomes one of making people happy which then carries over to the more routine tasks. One night she was in bed at 10pm, watching her television and eating a bacon bap! She had gone for 2 weeks respite care and after a few days she asked me if she could stay. The activity programme has activities at least twice a day – not just bingo and dominoes but events such as flower arranging, pottery classes and choir, and that’s not to mention ad hoc singing and games lead by carers simply because they can. The home has equal numbers of dementia and non-dementia residents and mixes them fully. Yes we are very lucky to have one of the most forward thinking care homes close to us and it only available for people who are self-funding but it serves as an example of what a care home could be.
Really what I am saying is that keeping a person with dementia at home is not automatically “doing the right thing” and it doesn’t guarantee the best quality of life. A care home is not a prison, people can visit and residents can be taken out. As the person loses their understanding of their real family they may create a new “family” within the simpler environment of a care home – that’s probably not what anyone wants to hear but it may be the best thing for the person.
I’m sure your “what I think will happen” scenario does happen sometimes and it hits the tabloid press. The reality is that most care homes are extremely good. Some will struggle with low staff levels, lack of facilities or poor organisation but almost without exception carers care.
Sorry to be negative about your post, I normally enjoy them and I’ve found them very supportive. Moving someone to a care home can carry a social stigma. There is a hope that things will stay the same if your Mum stays at home, then one day Christmas means nothing to her and a family gathering becomes scary. What matters is what is best for your Mum not anyone else. Maybe I’m hard-hearted but I have no qualms about my wife being in a home, she is happy and looked after with a level of care I could never achieve.” – David

 

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

House and Home – Being Accommodating

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.

 

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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)

 

“She’s still in there somewhere!” Is she? Really?

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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.

It never rains but it pours – incontinence, the big taboo

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!’……

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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

 

It’s a plucking nightmare – why a hairy chin is the least of our problems.

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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.

 

 

 

The Sisterhood – Part 2

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

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

 

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

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

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

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

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

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

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

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

 

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