30 December 2017

Let me entertain you

People with dementia often find it hard to keep up with their favourite hobbies due to increasing mental and physical constraints. My parents, for example, were both keen readers, but how can you follow a story, when you can't recall what you’ve read from one minute to the next? Likewise, the simple pleasure of losing yourself in a good television drama or film becomes impossible, when you can't keep track of what's going on.

One early indicator of the severity of Mum's memory problems was that she began relaying the same newspaper stories to us over and over again in the space of a few minutes. On one such occasion, a celebrity had died and it was clear from Mum's surprised tone of voice that, every time she told us this, it was as if she had just read the report for the first time.

Mum has always been a fidget and now occupies much of her time pottering around the house – mostly moving stuff to some place where nobody else can find it. She's oblivious to her condition and is convinced that she still manages everything as well as she ever did. This activity must, therefore, make her feel useful, which is a good thing, but it's not exactly interesting or stimulating.

She does, at least, love to go out for walks and is still safe to do so on her own, as she never deviates from the same short route, which is populated by kindly neighbours who know her.

Over the last 15 or so years, though – long before dementia struck either of them – Dad has become more and more of a homebody and less and less inclined to do anything outside of his normal routine. His one interest is listening to and watching sport. Other than that, he spends his days snoozing in his armchair, breaking off only for meals, his regular treat of a chocolate…and to go to bed!

Until the live-in carer moved in, however, my sister, Alison, and I could do little to improve the quality of our parents' lives. Any time that we spent at their house was devoted to bringing order to the chaos caused by dementia. Now that we're relieved of that responsibility, we have capacity to encourage them to participate in more activities.


Image courtesy of stevepb/Pixababy
Mum has always loved crosswords and word puzzles, but doesn't always remember to do them or, at best, half finishes them. So, on one visit a few weeks ago, I sat her down with the newspaper and a pencil and perched myself next to her, ready to help as necessary.

The idea that she might need help proved laughable. Every time she read out a clue, she followed it, half a second later, with the answer. My younger, supposedly more agile, brain hadn't even made sense of the clue, and she was already scribbling down the solution. 

It didn't help that she has a less methodical approach to puzzles than I do. She was picking out clues at random and not crossing out those that we (er, I mean, she) had completed. I had no idea where we were at until she came up for air a few minutes later, when the whole grid was full.

We moved on to a different kind of puzzle, where we had to make one nine-letter word from the letters in a three-by-three grid, and as many words of four letters or more as possible, all of which had to include the letter in the middle – 'g'. 

Barely were the words 'Shall we have a go at this one?' out of my mouth, than Mum said 'Fattening.'

'Sorry,' I said, 'what is?'

'The nine-letter word, it's "fattening",' she explained. 

By now, I was feeling like an absolute moron.

Doing the rest of the puzzle was more of a challenge. Mum came up with plenty of words, but not many of them had a 'g' in them and lots were only three letters long. I kept reminding her of these rules, but to no avail. 

I was also keeping a list of words that we had come up with, but rather than referring to that, Mum kept offering the same ones. 

'Have we got "gate"?'

'Yes, Mum, it’s on the list, look.'

A moment later…

'What about "gate"?'

'Yes, it's here, see? Second on the list.'

Two minutes later…

'Ooo, I've got another one…"gate".'

Alison subsequently – and quite sensibly – pointed out that it would probably have been better just to let Mum come up with words, whether they had a 'g' in them or not, and whatever length they were. The point of the exercise, after all, was enjoyment and mental stimulation. I'm a very rule-driven person and it simply hadn't occurred to me to bend those supplied. In fact, with dementia, you might as well throw every rule book you have out of the window.

As an example of that, later the same afternoon, I found myself having to talk Mum through writing the family Christmas cards, literally word by word. The brain is, of course, a complex organ, and dementia a complex condition, but it was hard to reconcile these two versions of Mum – the word whizz and the person who couldn't write a Christmas card on her own.

Image courtesy of Pexels/Pixababy
The most successful activity I've tried so far is watching old music DVDs with both of them. Singing and listening to music are known to be beneficial to people with dementia, but I had never tested this before. We began with a John Denver concert and it wasn't long before I found myself witnessing something akin to a miracle. 

Dementia has exacerbated Mum's natural restlessness and she usually can't sit still for more than five minutes. As she became more and more engrossed in the show, however, she seemed to lose any inclination to shoot off and do nothing in particular somewhere else. 

As for Dad…well, he actually stayed awake for nearly an hour and a half, eyes glued to the screen. He even chipped in occasional comments, such as 'He died in a plane crash', and 'We saw him at the NEC'. That might not sound much, but he rarely initiates a conversation – or, indeed, even answers questions put to him. To see such involvement was amazing, especially after he had declared he 'wasn’t bothered' about watching DVDs.

As I cuddled next to Mum on the sofa, with Dad nearby in his favourite armchair, I struggled to hold back tears, knowing that this was a memory I would always cherish.

When I got home, I researched John Denver online and was spooked to realise that the concert we had been watching was actually the one Mum and Dad had been to, in May 1986 – probably the reason they had the DVD. The idea that my 'real' parents, my pre-dementia parents, were in that audience was disconcerting. If only I could reach into the screen and pull them out…

On my next visit, I got out the same DVD, so that we could pick up where we had left off. Of course, Mum and Dad had no recollection of having watched it before. 

'We could just start from the beginning?' Mum suggested.

I persisted in fast-forwarding, fearful of otherwise becoming trapped in a Groundhog Day type scenario, in which I'd never get beyond 'My Sweet Lady' on the set list.

A few songs in, Mum turned to Dad, her face glowing, and said 'This is good, isn’t it, Georgie?' He gave a silent, but very firm nod in response. That simple exchange made for one of the best moments of my year. 

For the last 16 months, Alison and I have focussed solely on ensuring that our parents are safe and comfortable. Knowing that we can also still bring some actual pleasure to their lives is immensely rewarding. I only wish that they could remember and treasure those moments as I do.

Wishing you all many happy and memorable moments with your loved ones in 2018.

21 November 2017

28 days later

Regular readers of this blog may have noticed a hiatus in my posts over the last few months. This is because, a day after publishing the last one, I exchanged contracts on the sale of my flat in London and began the three-month countdown to my relocation to the Midlands.

Apart from tying up loose ends at the office during my two-month notice period and dealing with 101 moving-related tasks, I also had to secure a new job, find a property to rent and arrange farewell meet-ups with a dozen different sets of friends. Something had to give and, sadly, that something was my writing.

Somehow everything fell into place and I left London at the end of September, moved into my new home a week later, and started a new part-time job a fortnight after that.

In the middle of all of this, however, my sister, Alison, and I were also trying to sort out live-in care for our parents. This decision was prompted by a series of paramedic callouts to my dad in May – five in 10 days, in fact. These all related to Dad’s poor mobility – he has Parkinson’s Disease – and included him falling over when he and Mum got wedged in a doorway together!

For the next few weeks, Alison and I were beside ourselves with worry. Neither of us could sleep properly and every phone call made us jump. As I was still living in London, Alison was the one who ended up camped out at the hospital with Mum, every time Dad was taken in for checks. We worried not only about his mobility and safety around the home, but also about their overall quality of life. The four daily care visits, plus one weekly all-morning call, were no longer enough to stave off the creeping chaos caused by dementia. 

The condition is not just about forgetting things, but also about being unable to process information. Every visit we made revolved around picking up the pieces, including identifying dirty clothes that had been put away amongst clean ones, throwing away food that had been left out of the fridge, and tracking down numerous missing items. And that was only the tip of the iceberg. Until you’ve experienced dementia at first hand, it’s impossible to appreciate just how many problems it can throw up.

Ensuring that the carers did what they were supposed to was yet another challenge. The purpose of the morning visit was to get Dad up, washed and dressed, and to give him his medication. Simple enough, you would think? Yet time and again, we found him in dirty clothes that he had been wearing for several days. It was distressing that, in spite of our best efforts to make sure he was cared for, he looked like a tramp. To say nothing of the medication errors we unearthed a number of times…

Mum and Dad were uncomprehending of our concerns. Dad was also formally diagnosed with dementia this summer and neither of them had any recollection of the multiple paramedic visits and subsequent trips to hospital, let alone any understanding of their reduced comfort and safety. How on earth do you persuade somebody of their need for help under those circumstances? No amount of explanations or reasoning enabled them to grasp the situation.

Finally we decided to draw up a list of benefits of live-in care – both to them and us – and left it with them to peruse and, hopefully, absorb over time. In the meantime, we researched relevant companies, who could supply a team of two rotating carers, and chose the one that suited us best. Their rep then visited all four of us at our parents’ home, to conduct an assessment, so that they could be ready to roll as soon as we gave them the word.

However, Mum and Dad still weren’t persuaded. Although Alison and I have Power of Attorney and could make a decision for them if we deemed them mentally incapable of doing so, we wanted them to be involved as much as possible – indeed, it’s an Attorney’s responsibility to ensure that. So we discussed it with them on the phone – again and again and again – and then, finally, arranged to visit them together to talk it all through. At that point, they caved, unable to field any arguments to counter the points that we had raised. At last we had buy-in! For about 30 seconds.

Image courtesy of Simon Howden/FreeDigitalPhotos.net
No sooner had we give our chosen company the go-ahead, than it became apparent that Mum and Dad had forgotten everything we had previously discussed. It was time to admit defeat and take matters out of their hands, for the sake not only of their safety and wellbeing, but our own sanity. We could simply no longer cope with the demands on our time or the emotional and mental pressures.

Many carers are sustained for a long time in their role by a combination of love and guilt, but there comes a point when everybody reaches their limit and burns out. That limit will be different for each and every one of us and will be influenced by our personality, our personal circumstances and our relationship with the person we’re caring for. Given my mum’s impatience, I reckon she’d last about half an hour dealing with somebody with dementia!

We see our responsibility as being to make sure that our parents are well looked after, but not necessarily to do the hands-on caring. Of course, we are still ‘caring’ in the sense that we manage every other aspect of their home and lives, visit at least weekly and phone on non-visit days. Another important factor for me was to take into account what they would tell us to do, if they fully understood their predicament and the strain we were under.

Fortunately, over the last year or so of supporting our parents, Alison and I have always agreed on what we feel is best for them and, in terms of family, there is nobody else to interfere with our decisions. Though we did have some unhelpful comments from a few outsiders, including one telling us ‘Your parents don’t want a live-in carer.’ We knew – as so many carers of those with dementia come to realise – that it had become a case of considering not what they wanted, but what they needed.

We’re lucky that they have, for now, sufficient funds to afford live-in care. Signing the direct debit form that will lead to the rapid erosion of their savings was, nevertheless, a teeth-clenchingly difficult thing to do. I have to keep reminding myself that I can’t take Dad’s approach. He sees those savings as being for a rainy day, but is oblivious to the fact that he’s already in the middle of a monsoon!

And so, after all these battles, Dana* moved in with our parents as their first live-in carer four weeks ago yesterday. She is young, energetic, proactive and cheerful, with a warm personality, and takes whatever is thrown at her in her stride. Which has certainly been a helpful characteristic to have, as there was a rainwater leak through the hall ceiling within a fortnight of her starting! A succession of smaller household issues have followed, prompting her to joke ‘Maybe the house doesn’t like Czech people?’

We’ve been immensely grateful to have her there to help address these problems. Dealing with Mum and Dad in such circumstances is well-nigh impossible. They don’t understand what has happened, can’t present a clear picture of the issue over the phone and can’t possibly contribute towards effecting a solution.

In addition, yesterday Dad took a tumble in the toilet. In the past, this would have meant Mum calling the neighbours in to pick him up, paramedics being summoned to check him over and probably hours at the hospital, both for them and Alison. Instead Dana got him up, checked he was uninjured, and settled him down to recover with a drink and a biscuit…and a promise to me – via a quick text – that she would keep an eye out for any ensuing problems. 

She’s still getting to know our parents and their likes, dislikes and quirks, and we are all working together to put in place whatever is needed to facilitate her role, such as buying a vacuum cleaner that actually works and setting up an online shopping account. Now, though, we are a team of three supporting our parents and we have somebody permanently available on the ground to reduce the risk of disaster.

Better yet, Alison and I are now able to enjoy quality time with Mum and Dad when we visit, instead of rushing about putting right the dementia-fuelled chaos and getting more stressed by the second. Our parents' comfort and safety are paramount, but enjoying the time that we all have left together is a very close second.

*name changed

29 June 2017

Alternate world

It’s not easy to find respite from the anxiety and stress of supporting two parents with dementia. These days, only something really engaging will divert me from the constant worry, planning and problem-solving. I’ve always enjoyed science-fiction and superhero stories, though, and letting my imagination wander through these other worlds provides a welcome, albeit temporary, escape from my own.

One of my favourite television shows is Marvel’s Agents of S.H.I.E.L.D., which has great chemistry between the characters and also a nice line in humour. As I settled down to watch a couple of episodes from Series 4 a few weeks back, little did I suspect that a new storyline would bring dementia right back to the forefront of my mind.

A group of S.H.I.E.L.D. agents becomes trapped in something called The Framework – a computer-generated alternate version of the real world. While their actual bodies are held captive, they roam free in this virtual reality, living out different lives fuelled by false memories. Two of their colleagues, Jemma and Daisy, deliberately enter this reality to try to rescue their friends.

However, none of the agents in The Framework has any awareness that what they are experiencing isn’t real. As Jemma and Daisy try to explain the situation, they encounter a range of responses, from incredulity to complete denial and anger. One even challenges Daisy, ‘How do you know yours isn’t the fake world?’

By this point, I had begun thinking ‘Oh God, this is what it’s like for Mum and Dad!’

Mum, in particular, now lives in an alternate reality, which is essentially her life as it was 6 or 7 years ago. She has no idea that she has dementia and is convinced that she’s functioning normally and managing household affairs as well as she always did. Recently, when I gently suggested that her memory wasn't as good as it used to be, she tetchily replied, ‘My memory’s not that bad. You’re all talking me into it!’

So when she asks how I am and I say, ‘Tired’, she’ll respond, ‘You can always come up here if you need a break.’ Or if I mention that I’m busy, ‘Let us know if we can do anything to help.’ It’s sweet that she’s still fundamentally Mum, showing her old Mum concern, but the idea that they could provide either a rest or help is utterly far-fetched – and ironic, given that they are the reason for both my fatigue and having too much to do! All I can reply is, ‘Thanks, Mum, that’s kind of you.’

Image courtesy of Pixababy
My sister and I have to enter our parents’ reality, because we have no other choice. Even if we could persuade them of the truth of their situation, what would be the point? It would be cruel, hurtful and upsetting. Sometimes, though, I wish they did understand, even a little, as it would make it so much easier to persuade them of their need for more help. 

As so many friends have pointed out, though, ‘They’re happy in themselves.’ That can be hard to accept, however, when that happiness is based on a false premise. 

Which brings me back to Marvel’s Agents of S.H.I.E.L.D., where one character elects to stay in The Framework, because in there his young daughter is still alive. Although he has come to understand that this existence is not real, he prefers it to one devoid of his daughter’s presence. 

All told, this particular storyline proved to be anything but relaxing and diverting! 

Being forced to enter a dementia reality can mess with your own head a little. Every phone call to my parents necessitates playing a role to match their view of the world. Sometimes, talking to them, I’m almost persuaded that everything is back to normal. In conversation, Mum especially is still so articulate and bright and engaged, that it’s easy to believe there is nothing wrong with her at all. My having to act as if that is the case only adds to the illusion.

I also have to be economical with the truth on some subjects. Three months ago, I split up with my partner of 16+ years, but I haven’t told my parents because a) they’ll be upset, and b) they won’t remember and I’ll only have to tell them again (and again and again), so upsetting them over and over. 

Instead, when Mum enquires after him – Dad would never think to – I give her a report that is based on the texts and emails we still exchange and his personal and professional Facebook posts. Thank goodness for social media to help me create an authentic fiction of our now defunct relationship! So far, I’ve managed to maintain the pretence, without actually lying to Mum – ‘Yes, Mum, he’s really busy with work’ or ‘No, Mum, I’m afraid he doesn’t have time to visit you and Dad. In fact, I hardly see him myself.’ It’s surprisingly easy to say something and nothing at the same time.

I might have a bigger challenge on my hands if any future partner ever meets my parents. While we all change as we age – and they haven’t seen my ex for at least a couple of years – I’m not sure how I’ll explain a different ethnicity or a 4-inch height gain... Though who knows what their mental status might be by then – they might not even recognise me.

Thinking ahead to that prospect – which I generally try to avoid – I suppose, after all, the current situation isn’t as bad as any number of other possible realities. Or, at least, that’s what I keep trying to tell myself.

24 May 2017

Top tips

This month I’d like to share some of the knowledge that my sister and I have acquired in terms of securing funding and other assistance for our elderly parents – and saving them money!

Please bear in mind that this advice is a starting point only, for you to make your own enquiries, and there may, of course, be legislative changes after the General Election.

Power of Attorney

Power of Attorney (POA) is essentially a legal document that allows you to act on behalf of another person. There are two kinds, one relating to financial decisions and the other to health and care decisions. The former may be implemented either immediately or when the person loses mental capacity. The latter only takes effect when the person loses mental capacity.

It’s very important, however, to get POA drawn up before a person loses mental capacity. If you don’t, you will have to apply, instead, to the Court of Protection to be appointed their Deputy – a much longer and more expensive process.

Many people resist putting POA in place. This may be because they are in denial about their mental frailties or perhaps because they fear a loss of control and independence. It can be a difficult and delicate conversation to have, and the response from your loved one is also likely to be influenced by your relationship with them, ie do they trust you to have their best interests at heart? Our parents presented some initial resistance, but were persuaded by our repeated reassurances that we would only step in to help when needed.

The key thing we learned about POA is that you don’t need a solicitor to draw this up – a friend mentioned this to me by chance, immediately saving us £1,000 in legal fees! You can do it all yourself using the guidance and forms supplied by the Office of the Public Guardian (OPG), at a cost of just £82 per form, ie their registration fee. Please note, though, that this only applies in England and Wales; you can find separate guidance for Scotland here.

If you follow the OPG’s instructions carefully – and they are very detailed and clear – you should be able to set this up without legal assistance. However, if your loved one’s circumstances are complicated, or they require bespoke instructions to be given to their Attorneys, it may be preferable to use a solicitor. I’d suggest reviewing the forms first, before deciding which is the more appropriate approach.

Benefits

Age UK have an online benefits’ calculator, which enables you to check that your loved one is receiving all of the state benefits they are entitled to. You may also be able to fill in one of their hard copy ‘Welfare Benefit Entitlement’ forms and submit it to your local office for an adviser to review. You can find contact details for your nearest Age UK office, and the services they provide, on this benefits’ calculator page

Image courtesy of Pixababy
And don’t forget those benefits that are universal (at present!), such as winter fuel payments and the over-75s’ free TV licence.

It’s also well worth looking into eligibility for Attendance Allowance – again Age UK have guidance on this ‘benefit for older people who may need extra help to stay independent at home, due to an illness or disability’. The related government website is useful, too.

This allowance is currently payable at the rate of £55.65 per week if you need help either in the day or at night and £83.10 if you need help both in the day and at night. It’s payable tax-free, is not means-tested and you don’t actually need to be receiving care for it to be granted. There are also no rules or restrictions as to how you use this allowance.

My sister had help from an Age UK volunteer in re-drafting the relevant application forms for my parents, to ensure that they stood the best possible chance of success – both were awarded this allowance, with Dad receiving the higher rate. This was also backdated to the date of claim, which provided a couple of nice lump sums.

Council tax

Due to Mum’s dementia and the fact that she now receives Attendance Allowance, my parents are entitled to a 25% discount on their council tax. The Alzheimer’s Society has helpful guidance on the relevant qualifying criteria. 

If all of the adults living at a property meet these criteria, then that property becomes exempt and council tax doesn’t have to be paid. Sadly, we are likely to find ourselves in that position soon, as Dad is also suffering memory loss and confusion. The only silver lining – albeit a somewhat tarnished one – is that this will save them nearly £2,000 a year altogether.

Bills

Many of us fail to review costs for our utilities, either through lack of time or the fear that making a change will be too much hassle. Physical or mental impairments can also present an impediment, whether you are young or old. My dad is hard of hearing, has blurry vision due to cataracts and poor dexterity as a result of Parkinson’s Disease; he simply can’t manage the necessary investigations and negotiations even on the phone, let alone online.

Added to which, we came to realise that he had always placed his trust in companies to give him the best deal – he never thought to challenge bills and I suspect a lot of older folk are the same.

In light of all of this, we arranged for him to sign ‘letters of authority’ to the relevant organisations, giving permission to me and my sister to deal with them on his behalf. This avoided the delay entailed in sending the POA forms to each in turn and removed the risk of those forms getting lost – certified copies are very expensive to obtain.

Now my parents pay 50% less on their phone bills and are on fixed rate tariffs for their electricity and gas. 

If a property doesn’t have a water meter, that may also be worth considering. The Consumer Council for Water has a useful calculator to help you assess if this would be of financial benefit. We decided against this after discovering a tap left running at my parents’ house!

The online comparison sites are, of course, a great resource. We saved our parents £400 on their buildings’ and contents’ cover with very little effort. Money expert Martin Lewis’s site is also well worth checking out.

Equipment

There are all sorts of adaptations available to help the elderly keep mobile and safe at home. The local council should be able to arrange for an occupational therapist to assess needs and what will be beneficial.

The social care system undoubtedly has its failings, but I’ve been impressed by how much equipment has been provided to my parents for free, including: handrails; raised toilet seats with grab rails; raisers for Dad’s bed and armchair; a wheelchair; a walking stick; and a key safe to allow carer access.

Image courtesy of Praisaeng/FreeDigitalPhotos.net
There are also paid-for services, such as the telecare system that we have had installed. This consists of a base unit connected to a bracelet with a button that Dad can press in case of emergency. The referral from social services meant that the installation cost was waived – it’s usually £37 – and it then costs just £15.96 a month to rent. 

The best part, however, is that we’ve added integrated smoke alarms and a carbon monoxide alarm to this system, entirely for free. We simply asked for a referral from the fire service, which they were happy to provide, given our parents’ vulnerability. Ordinarily each of these 4 alarms would cost just under £5 per month to rent, but this cost is met by their local social services.

The smoke alarms were put to use within 3 weeks of installation, when Mum burnt the toast and succeeded in filling the entire downstairs with smoke. Before she or Dad could even figure out what was going on, there were firemen at their door. It provides great peace of mind to me and my sister – at least one thing we can be sure of is that their home won’t burn down around them!

* * *

Please do share your own tips by leaving a comment below.

23 April 2017

New girl

Image courtesy of Pixababy
Getting to grips with my parents' domestic and financial affairs has been one of the challenges of supporting them over the last 8 months. In many ways, the experience has mirrored that of starting a new job...except I didn't apply for this one and the terms and conditions are terrible - no pay, no holiday and on call 24/7!

You know how it goes in a new role...

Day 1: Your predecessor has left no handover notes, you haven't got a clue what you're doing and the learning 'curve' is more of a cliff face.

I first dipped a toe into these murky waters during a fleeting visit to my parents last September. My sister, who lives closer to them, was becoming overwhelmed by all of the meetings that followed Dad's unexpected hospital stay, and asked if I could deal with one of them.

I travelled there and back by train on the day and had only 5 hours at their house in between. By the time I'd met with the social worker and occupational therapist and dealt with some unexpected domestic crises - including the boiler going wrong - I was left with just an hour and a half to start on the paperwork.

My first port of call was the 'treasure chest'. This beautiful old wooden box holds all of my parents' most important documentation. As children, we never knew exactly what it contained, but Dad had drilled into us that, in the event of a fire, it was to be hurled out of the window to safety first. Never mind the women and children, the box had priority. In this age of digital records, I doubt it is quite so important. Dad reassured me that everything I needed would be in there, but he was unable to give any more of a steer than that - for the last 18 months or so, he has struggled to manage his affairs, hence our intervention.

Armed with a pen and A4 notepad, I pulled a 4-inch pile of paper out of the chest and began to scribble furiously - organisation names and addresses, policy numbers, maturity dates, interest rates... I was making great progress, until, out of curiosity, I opened the box file that had been lying on top of the chest and which I'd moved aside without exploring its contents. Only to discover it was also full of documentation, some from the same organisations, but some completely new to me. My heart raced and my hands shook as I tried to sort it all out. By now, I had less than half an hour before my taxi arrived to take me back to the station. 

With 5 minutes to go, I had pretty much brought order to this new pile...then found a plastic bag stuffed with yet more papers. I hate leaving jobs unfinished, but my time was up; I had to admit defeat until my next visit.

Three months in: You're getting the hang of the job and have started to implement some new systems.

Over the next two visits, with more time available to me - and the help of my sister - I finally managed to identify which was current paperwork and which was for shredding. This in spite of unearthing another foot-high (no exaggeration) pile in a filing cabinet and having to deal with Mum's repeated interruptions to ask 'I don't suppose I can, but is there anything I can do to help?' A typically kind offer, but even before her dementia took hold, Mum would have been unable to assist; the division of labour between my parents has always been very clear and finance and admin have never been her domain.

Image courtesy of nuttakit/
FreeDigitalPhotos.net
A need for order is a key feature of my obsessive-compulsive disorder and this carries through to all areas of my life. Filing my parents' paperwork away into new, neatly labelled folders was not only satisfying but also calming. The distress of witnessing Mum and Dad's decline has been eased by knowing that at least I have control over one element of their lives. And the focus required to deal with this admin provides a welcome distraction from my emotional upset.

In addition to creating a paper system, I input the key information into spreadsheets. Oh, how I love the way those little boxes enable me to bring order to chaos. Whether adding up figures or sorting data, they are the ultimate in control...even if I did end up with a lot of blank fields and more questions than I'd started with.

Take the bank statements, for example. Why was £250 leaving their current account every month? Why were they paying a monthly £7.99 to Dixons? And what was in the safety deposit box that cost £15 a year to maintain? I still had dozens of pieces to slot into place in the giant puzzle of my parents' life.

Six months in: You realise that your eagerness to put your stamp on the job was misplaced - some of your new systems just aren't working

It took months to fully populate my marvellous new spreadsheets - and numerous letters seeking clarification and information from the relevant organisations, which I drafted for Dad to read and sign. I logged every last detail that came back, conscious that, should anything happen to me, somebody else would need to be able to pick it all up.

Then I realised that a) I was duplicating some records and b) there is such a thing as too many spreadsheets. It was difficult to remember where I had recorded what and I was spending far too much time updating everything. I had too much else to do to waste a second - from re-negotiating a horribly expensive telephone package and renewing maturing bonds, to setting up direct debits for bills and collating information for Dad's tax return.

So began the Great Spreadsheet Cull... And, at last, my systems seem to be working.

My sister and I now spend much of our spare time supporting our parents and sometimes I feel resentful of that. I have to keep reminding myself that every minute we devote to them helps them to remain in their home, which is where they really want to be. So long as they are together, and in the house they have shared for nearly 40 years, they will, I think, be reasonably happy. They are still so very fond of each other and it is deeply touching to see their continuing mutual affection, in spite of their increasing physical and mental challenges.

One thing I know for certain about this job is that I will never resign from it.