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!

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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.

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/
FreeDigitalPhotos.net

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.