2 March 2017

Mum the Magician

Over the last few years, I've done a lot of research on dementia, both to help me understand Mum's behaviour better and to find ways to address the challenges that the condition presents. I'm by no means an expert, but have picked up some key points.

The first is that many different diseases cause dementia, of which Alzheimer's is just one, and it's also possible to have 'mixed dementia' - about 10% of cases fall into this category. In fact, although I wrote last time that Mum has Alzheimer's, she also has vascular dementia, and this is the most common combination.

The second is that dementia is about much more than just memory loss: a whole host of other issues can arise, even in the early stages, when, for example, there may be difficulties in reasoning, planning and organising. As the condition progresses, problems include changes to mood, personality and sleep patterns, incontinence, and the risk of wandering and getting lost. In the final stages, there is complete loss of awareness and a significant decrease in physical abilities - being unable to walk, sit or even swallow. 

It can be hard to determine whether an individual is at the mild, moderate or severe stage, as there is often overlap between them. If the diagnosis is mixed dementia, that complicates things still further - for instance, memory loss is not usually one of the early symptoms of vascular dementia. My non-expert view is that Mum is just bordering the moderate stage.

The third is that each person's experience of dementia is quite different, both in terms of how quickly it progresses and the ways in which it manifests. Over the last 12-18 months, Dad has also been getting more confused and has had short-term memory problems. It is already apparent, however, that his experience is different to Mum's, in that he is aware of, and sometimes becomes upset about, these issues. Mum mostly tootles along in blissful ignorance, with only the occasional comment that she feels she's having a 'confused' day.

The most obvious signs of Mum's dementia are that she often tells us the same things over and over again in a short space of time, or repeatedly asks the same question. While this repetitiveness can be trying, what is even more frustrating to deal with is her apparent ability to make things vanish. Moving and hiding things, or completely losing them, is common in dementia, but Mum seems to have got this down to a fine art.

On one recent visit, I arrived just after the shopping had been delivered by one of their carers, so I helped put it away. I stashed one loaf of bread in the dedicated wooden bin and, due to lack of space, put the second next to it. An hour or so later, when I came to make lunch, this second one had vanished.

'Where's that loaf that I left by the bread bin gone?' I asked Mum, somewhat pointlessly.

'Oh, I don't know, love,' she said, all wide-eyed innocence. 

I hunted for it through every cupboard and drawer in the room, but, to this day, I don't know where it went, as I opted not to search the rest of the house. It will probably turn up at the back of the airing cupboard - it was a large family-sized loaf, so not that easy to conceal.

The next occasion I visited was when my sister, Alison, took Dad to hospital as a day patient for a cataract operation. I stayed at home with Mum and drafted her in to help me with some domestic chores, in a bid to distract her from Dad's absence.

I decided that we should first work our way around the house, room by room, identifying items for the wash and putting away anything clean that was in the wrong place - such as vests on the vegetable rack (it has happened).

Unfortunately, I made the mistake of taking my eyes off a clean pillow case that I'd found, while I tried to determine the degree of dirtiness of one of Mum's tee shirts. I turned around to pick up the pillow case, only to find it had disappeared.

'Mum, where's that pillow case gone?' I asked, already knowing the answer.

'Oh, I don't know, love,' she replied, though more bemused than innocent this time. 'I had it in my hand a minute ago.' 

Image courtesy of Pixababy
She may have admitted to being the culprit on this occasion, but, again, I have yet to find the missing case. With this new superpower, Mum could give David Blaine a run for his money. Never mind making the Statue of Liberty vanish, if he stood still long enough, she'd make him disappear.

Meanwhile, Alison has been engaged in The Battle of the Brown Bin for weeks now.

Understandably, Mum has great difficulty knowing which rubbish to put in which bin - a challenge even for those of us without dementia these days. The council had already taken away the recycling bin, at our request, but that still left the ordinary black one and the brown one for garden waste, which their gardener uses.

Mum kept putting household rubbish in the brown bin, so Alison turned it around, to make it harder to open, and put a 'Do not use' sign on it - after first disposing of the pile of peas at the bottom of it. A week or so later, she found the sign in an empty plant pot and the bin being used for general rubbish again.

She moved it further away, around the corner next to the shed...only to return a few days later to find that, although it was empty, it was once more beside the black bin. As of two days ago, she had put it back by the shed and we wait with bated breath to see where it turns up next.

Incidents such as this are an example of the kind of strategising you have to do to help somebody with dementia, whose behaviour can often be illogical and erratic. For the last six months, we've wracked our brains time and again to come up with solutions to far greater problems, such as Mum overdosing on her medication.

The dementia websites I've researched have loads of great ideas, but these don't work with every individual, so you have to be immensely creative and always take into account your loved one's personality. Mum was never particularly organised and has always been quite stubborn. We are, in the end, still dealing with Mum the person as much as her dementia!

* * *

The Alzheimer's Society is a great resource for all kinds of dementia and Alzheimer's Research UK is also a very helpful organisation.

12 February 2017

Role reversal

Last summer, my sister and I became aware that our parents were no longer able to cope on their own. There were telltale - and in some instances, distressing - signs of this, both in their physical condition and around the house.

It was a shocking realisation, even though they are both in their 80s. None of us likes to think about illness, decline and death and it is easy to remain in denial about it ever happening to our loved ones. However, the slide from managing to not managing can happen quickly, particularly when you're dealing with degenerative conditions: Parkinson's in Dad's case and early to mid stage Alzheimer's in Mum's.

My sister and I spent 2.5 hours on the phone one evening, discussing the problems that we'd observed and the kind of support we might arrange. The following morning, our parents' GP also called me to express his own concerns. 'We want to avoid a crisis,' he said.

We were too late for that. A few hours after that conversation, Dad was unexpectedly admitted to hospital, having lost the strength in his legs and been unable to stand up again.

In fact, this hospital stay proved to be a blessing in disguise, as a care needs' assessment had to be conducted to prepare for his return home. Without that professional intervention, I'm sure it would have taken significantly longer to persuade our parents to accept help.

Morning and evening visits were established, to get Dad up, washed, dressed etc. It was a start, though my sister and I knew that much more was needed. 'In a few months, we'll have everything in place, they'll be settled in their new routine, and we'll be able to relax a bit,' we told each other. How naïve we were!

It's only now, six months on, that we've reached some sort of stability, with much more help in the home - all self-funded, but with some supplied through the council and the rest sourced privately. Fortunately our parents have sufficient funds to enable us to supplement the minimal care package proposed following the local authority assessment.

Of course, you are often not only battling the system, but the very people that you are trying to support.
Image courtesy of Danilo Rizzuti/

Initially Dad declined the evening carers' assistance when they turned up on the doorstep. 'They're in and out in 10 minutes,' he complained, completely missing the point that this saved an hour of him and Mum struggling to get him ready for bed. 

In fact, between his physical constraints and Mum's dementia, it's a wonder they ever got him sorted out. Mum moans at Dad for not helping himself more, because she's forgotten that he can't. Dad sends Mum off to get what he needs, and wonders why she comes back, a long time later, with either the wrong thing or nothing at all. If it weren't so tragic, it would be farcically hilarious. 

Eventually their social worker decided that it would be better to stop the evening visits, as they were a waste of the carers' time. Only for Dad to have another 'wobbly legs' incident a few evenings later, with nobody but Mum there to rescue him. Cue a series of panicky phone calls, trying - and failing - to get those visits reinstated that same weekend.

Of course, I understand my parents' reluctance to agree to help. It's an admission that they're getting old. It signals a loss of independence, privacy and, to some extent, dignity. And it's frustrating and inconvenient to be waiting on others to facilitate your day-to-day life. Dad huffily told me one day, 'We'd rather none of this were necessary.' So would we all.

On the flip side, my sister and I couldn't continue to live with the stress and anxiety of knowing they were struggling and wondering what was going to go wrong next. Our primary concern was to keep them safe and comfortable - and at home - and if that meant being a little forceful on occasion, then so be it.

It's just another element of the parent/child role reversal coming into play. As children, our parents often made us do things we didn't want to, for our own good. So, while I seek to respect their wishes and avoid upsetting them, there is an element of us now knowing better and having to persuade them to do things for their own good. 

This is a particular challenge with Mum, who is unaware she has dementia, and always thinks everything in the garden is rosy. During one phone call, she chirpily told me 'We're fine. We'd tell you if there were anything wrong.' I was feeling especially tired and irritable that day and couldn't stop myself from responding 'What, apart from the fact that you can't remember anything and Dad can hardly walk?' 'There is that,' she said, just as chirpily. It's easy to see how they fooled us into thinking they were managing.

Caring for parents is something most adult children have to face sooner or later. Thankfully these days there is masses of information available online, covering everything from accessing social care and funding, to dealing with the mental and emotional impact of becoming a carer.

Age UK is a brilliant place to start - they have dozens of factsheets, as well as more detailed guidance, on every aspect of elderly care imaginable. Independent Age and When They Get Older are also great resources. Be warned, though, you'll end up with a 6-inch high pile of reading, which can feel overwhelming. In that respect, some of the key things I've learned are:

- Focus on solving the next most serious problems, ie those that are a question of health and safety, and put the rest on the back burner - your 'to do' list will never be done, so you have to prioritise.

- Try to plan a little ahead, to prevent new, major issues arising - we've been on the back foot for most of the last six months and only now have the breathing space to do this.

- However, don't 'pre-live the future'. When you look back, you'll be surprised at what you've dealt with and achieved, so try not to look forward in fear of what might happen and how you'll cope.

We are all stronger than we realise and the journey that my family is now on is proving that to me every day.

22 January 2017

A new direction

The new year brings with it a new direction for this blog, which I'm excited to tell you about today.

Image courtesy of Pixababy
Those of you who are regular readers will know that my sister and I have been occupied in supporting our ageing parents for the past 5-6 months. It has been a steep learning curve for both of us, as we've got to grips with their domestic and financial affairs, engaged for the first time with adult social services and explored care and funding options.

As time has worn on, my brain has begun to bubble with thoughts and feelings and experiences that I want to share. I've always been driven to write about events that are important or memorable to me, even if only as a record for myself or my family, for example being at the birth of my first nephew. 

Such writing often also proves therapeutic. The focus required to corral my thoughts and to find the best words to express myself is a great distraction from day-to-day worries. The act of writing leaves no mental space for my usual anxieties, quite apart from the cathartic effect of putting things down in words.

Now, though, I wish to share what we're going through, and what we've learned so far, with the wider world. I'm well aware that our story is not unique - very far from it - but I've found that reading about other people's experiences has helped me and I feel compelled to add to that writing canon to assist others.

I hope you'll find what I have to say both interesting and useful. I'll be building on my resource links - below right on this page - with pointers to the best advice we've found on elderly care, funding and the like. Something to come back to at a later date, even if you don't need it at present.

I also want to continue to inject humour into my writing. This is in no way intended to detract from the sometimes serious nature of the situation, but if you can't find something to laugh about when times are bad, life becomes intolerable. I learned this from the best: my late friend Nicki approached her terminal cancer diagnosis with a dark humour that was her way of coping - it is for many of us.

There will, inevitably, still be a link to mental health. I wrote recently about how the stress of my current circumstances has exacerbated various of my conditions; I expect that to continue in the future and for me to reflect on this in my posts.

I look forward to starting this new writing journey in the next few weeks and I'd love you to join me on this slight detour from my usual blogging path.

In the meantime, if you've come to this site seeking information or support on mental health issues, please do use the 'Search' facility - see below right - to find past posts on a wide variety of related subjects.

17 December 2016

Good enough

'Her life's ambition is to figure out what "good enough" means' - so says my author biography. It's a goal I've been reflecting on a lot recently, as the year hurtles to an end and I look back on what I have - and haven't - achieved in 2016.

The trouble with being a perfectionist is that, whatever you accomplish, it never seems to be enough. I'm not ambitious in terms of career or money, but I am incredibly driven in other ways and give my all to any project I undertake.

So, when I brought out my novel, it wasn't in the pursuit of fame or fortune, but to share my writing and my experience of mental health issues - albeit entirely fictionalised. In fact, I doubt I'll ever break even from my publishing journey! Especially given the way this year has panned out...

In January, I found myself unemployed after the conclusion of a temporary contract, but began a new part-time job in mid-April. The salary wasn't enough to manage on, but I planned to top it up with an unused redundancy payment and review my position when that ran out. 

Time was more important to me than money: I intended to devote my two days off mid-week to promoting my book and giving talks about living with OCD and anxiety. Mental health advocacy has become very important to me and is vital to raising awareness and reducing stigma.

Except, four months later, life intervened. Since August, my sister and I have devoted most of our spare time to supporting our parents, as a result of their declining health. For every item we tick off our 'to do' list, another two replace it, and there is no end in sight to the constant problem-solving. In spite of my wish to do whatever it takes to help my parents, it has been frustrating to have to put my own life and plans on hold

Feeling particularly gloomy one day, I decided to review my writing year up to August, to establish exactly what I had achieved. Amongst other things, I have:

  • Written 23 blog posts, totalling more than 12k words.
  • Given two author talks in local libraries and three about mental health for Barnet Council staff.
  • Delivered a 2-hour course on self-publishing at a writing conference - my first tutoring experience.
  • Got my book into four libraries in Barnet.
  • Recorded an interview for Barnet TV.
  • And secured an indieBRAG medallion award for my book and seven great reviews from book bloggers.

At the end of my talk at North Finchley Library
And I don't think I've done enough?! I need to give myself a break.

I heard a quote once along the lines of 'When you die, there will still be things to do in your in-tray.' In other words, stop trying to do it all. I have nearly two weeks off over Christmas and the New Year, so what better time for me to put that advice into effect?

Wishing you all a happy and restful festive season.

* * *

My novel waiting to be shelved
at North Finchley Library
If you'd like to help kick start my advocacy work in 2017, why not buy a copy of my book for yourself, or your family and friends? - see my 'Novel' page for purchasing options. And don't forget, a book is not just for Christmas! 

Please do also post a review, on whichever is your preferred forum - Amazon, Goodreads etc - to help spread the word.

You can check out all my news from 2016 here.

17 November 2016

Eye strain

Occasionally I'm stricken by health anxiety, though this rarely slides into fully-blown hypochondria - fortunately for both me and my doctor! I only ever seek help for actual, rather than imagined, symptoms, and usually manage to stop obsessing about them as soon as a medical professional has provided reassurance or a diagnosis. It's the uncertainty of not knowing that I can't stand.

So, when I noticed an intermittent blurry patch in my left eye, I immediately booked a check-up at my opticians. This blurriness coincided with the appearance of a larger than usual 'floater' in that eye and I thought they might be connected - floaters are lines or spots that drift across your vision, caused by tiny bits of debris floating about in the vitreous humour and casting shadows on the retina.

I fully expected the optician to tell me that there was nothing wrong, however, at the end of the examination, she said, 'Well, I can see a white patch on the retina, but I don't know if it's new or if you've always had it. It might be a retinal tear.'

Image courtesy of Pixabay
My heart pounded.

'I'll give you a letter to take to the hospital today,' she continued.

'Today!' That must mean it was really bad.

'Or tomorrow,' she said. 'This weekend, anyway.'

Maybe not really bad, but definitely not good.

As instructed, I set off straightaway to make the Tube trip into central London, to the walk-in centre at Moorfields Eye Hospital.

Amazingly, the place was heaving. It looked as if half of Greater London had gone to the opticians that afternoon and been despatched for further tests. The electronic information board provided updates as to how many were in the final waiting area - always around 21 or 22 - and, at 8.35pm, stated that 188 people had been seen that day.

It was some small consolation that I wasn't the only one whose Saturday had been ruined and at least I was spared the 4 hour 58 minute wait that the board threatened when I arrived.

For the whole 3 hours that I was there, however, my heart was racing with anxiety as to what might be wrong. With everything that has been going on with my family of late, I couldn't afford downtime for an operation. And what if it was worse than that? - what if I had a condition leading to sight loss?

With no one to talk to and nothing to distract me, all I could do was worry.

Finally, though, I was summoned in to see the consultant and, less than five minutes later, given the all-clear. I practically danced home, in spite of my exhaustion.

The experience helped me to put things in perspective. Yes, I am under huge stress at the moment, but at least I have good health and am in a position to support my parents.

I often talk in my blog posts about 'lessons learned' and one of my followers recently asked if I retain those lessons. The sad truth is that, no, I don't. Before long, I inevitably find something else to worry about. 

Perhaps, then, it's a good thing that life keeps throwing me curveballs - it seems I need these regular wake-up calls to remind me just how lucky I really am.