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Home Truths

Or: A Tale of Two Care Scenarios

    Scenario A

Dutiful daughter embraces caring for her elderly father and overcomes the problems of distance and her own fragile mental health. Problems are faced, but there are also fun times involving trips to the seaside and a fascination with ducks and furry toys. The family, scattered across the globe, pull together – but the weather is still better in Australia than the UK!

    Scenario B

Dysfunctional daughter jeopardizes the care available to her father with her erratic mental health and tendency to confront the system when there is no chance of changing it. The under-staffed and somewhat disorganized care agency struggles to provide the care paid for and to cope with distressed daughterly demands. Family relationships disintegrate as dysfunctional sibling goes into meltdown.

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Life is never straightforward. My life is probably less straightforward than most and I’m the first to hold my hand up to it. It’s harder to hear it from others.

Recently, a family member let rip and told it like it was. This involved them losing it during a phone call when we were discussing the care package for my dad. The family member shouted that it was all my fault, and that my father’s care agency came closer to sacking us than we did to sacking them. This is true. And, in as much as our fragilities affect our reactions and also other people, it is my fault. It was hard to hear it but it was fair, even though the method of delivery probably wasn’t.

The difficulty is in finding a balance in the way we view the truth. Looking at my life and the way I’ve tried to care for dad you could say that both Scenario A and Scenario B are accurate, but of course neither gives the full picture of the actual situation. It’s that age-old political trick of what we leave out rather than what we put in.

Writing out these scenarios was intriguing. It was like writing out the summary of a plotline for a book. And, unlike when I try to summarize my novels for a query letter, it was easy. Perhaps this is because I was deliberately descending into clichéd pictures taken from one particular angle. It’s simple to present just the rose-tinted view of caring, or the doom-and-gloom version, but much harder to get the subtle balance of reality.

So what is the reality? For me it is a very strange mix of love and duty. Of facing the unfaceable and yet finding joy and ease in dirty and difficult tasks. Of course what I find ‘unfaceable’ is very different than what most people do. A simple phone call floors me, and dealing with the system and bureaucracy causes my stress levels to soar. I don’t handle things well – as my family member pointed out so forcefully.

But there are things that I handle better. Understanding dad’s headspace and need for routine is a doddle, and we settle into a very comfortable companionship when I don’t have a long ‘to do’ list of tasks sitting on my shoulders. I’m good at day-to-day caring tasks – cleaning dad’s shoes and glasses, ensuring a good supply and change of continence pants, clean clothes, cooking nice meals, maintaining a stock of hearing aid batteries. I’m good at connecting with people, at building links with dad’s neighbours and friends. I just wish I lived close by so that the balance of tasks fell towards the ones I’m comfortable with rather than the ones that I’m not.

Writing the above list has been good for me. It’s reminded me that I am not only about dysfunctionality. Like the characters in my novels (hopefully) I am more rounded – contradictory for sure, but with positive traits as well as negative. Yin and Yang. Grunge rock and classical side-by-side. It’s why I struggle to get plotlines that I can write out simply – life is complex, and people are, too. But that is what is fascinating, and what, ultimately, makes us human.

MAD MOMENT…

My cat having a daft week! Big emergency vet bill because he was bitten by some unknown assailant, then the presents of a headless mouse and a live goldfinch in the space of two days. He never was a hunter, but it looks like he’s getting into his stride…

MARVEL MOMENT…

Psychadelic blues at my local pub. Proper throw-back music and brilliant, too.

© Anne de Gruchy

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Being a Daughter, Too

I’m having a break from caring for dad.

My lovely sisters have taken seriously the struggles I have had in coping with things, and are supplying back-up as well as keeping the airlines in business almost single-handed!

Currently dad is sunning himself (hopefully) in southern France where sister number one lives. To achieve this entailed my brother-in-law flying over to the UK to collect him, then packing everything he needed, depositing the dog at the kennels, and accompanying dad back to France. The same will be necessary in reverse to bring him home. Nothing is simple when you are dealing with someone with Alzheimer’s, partial sight and bladder cancer.

Dad loves a holiday. After he and mum retired they went into overdrive and booked about three holidays a year. Eventually they got addicted to the convenience of cruises and spent many happy weeks travelling the oceans to visit interesting places and watch the Northern Lights. After mum died, dad found it hard to accept that his ability to have regular holidays was affected. We have managed to give him various breaks over the ensuing years, but much travel is needed to get to Dorset where he lives before a holiday can even begin. He is not capable of going alone.

So dad is in France and I do not have to worry about phone calls that uncover unexpected needs and crises, or whether dad is managing with the newly increased care package and the interruption of his morning routine.

I also don’t have to worry about financial stuff. Sister number two is busy sending out Powers of Attorney and asking the financial institutions dad has dealings with to communicate via her. This has not been easy as she lives in Australia and she needs to provide evidence of her identity to every organization she contacts. The level of proof they require has varied, and she has had to make visits to solicitors and notaries to have her identity sworn to. One company has insisted on all three of us signing to say sister number two can take over – something that is completely unnecessary as we are allowed to act independently under the Power of Attorney we hold. So now their form is winging its way from Australia to France to the UK and back to Australia again, just so that they have three signatures in one place. The airlines are in heaven.

Dad’s finances have been a big headache for us. He has been unable to manage his paperwork for a long time, and correspondence goes unanswered or missing. Because of the distance between us it has been hard to keep on top of what needs doing, and what has got into a muddle. Recently dad has decided he needs to do a big clear out of his paperwork. This is something he has steadfastly refused to do for years, but all of a sudden it has become an obsession. I wonder whether it is a bit like end-of-life spring-cleaning – the urge to tidy up your affairs at a certain point as you get older. Certainly the pile of paperwork next to dad’s shredder is impressive. The problem is that he is no longer able to see or think well enough to know what should be kept and what should go. A few months ago he dismantled the file containing his passport, will, and EHIC health card, and it took us many days to locate the key items and hide them away somewhere safe.

After dad comes back from France, sister number two will take over the ‘Rescue-Anne’ operation and make a month’s visit to the UK. She will take dad to his next cancer check and sort out more of his finances and his Tax Return. She will try to identify once and for all who the ‘mystery stockbroker’ is. Dad swears he has a stockbroker, but cannot remember names and we cannot locate a file. Never having had to deal with stocks or shares, this is all a mystery to me – but not as much of a mystery as the stockbroker’s identity!

I hope to catch up with sister number two while she is here – Australia is a long way to travel otherwise. And even though it is tempting to have her visit me and share some wonderful Peak District walks, I may well go down to see her at dad’s. The thing is that I miss him if I don’t see him for a long time. It is like the song from My Fair Lady – I’ve become accustomed to his face.

It is good to remember sometimes that it is not just about being a carer, but being a daughter, too.

MAD MOMENT…

Attempting to use the interesting 6” screws the Timber Merchant sold me to join together the sleepers to create my new raised beds. A friend came to help, but the drill wasn’t up to the job. Eventually I gave up on my attempts to find someone with a big enough drill and bought some brackets instead. Does anyone need some unused super-sized wood screws?

2016-04-23 14.04.59 2016-04-23 14.04.01

MARVEL MOMENT…

After all my troubles trying to see out of my new glasses and worrying what the optician would say when I took them back (again!), it turns out that there was a fault with the coating and the manufacturer have replaced the lenses free-of-charge. I can see at last! Phew!!!

© Anne de Gruchy

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Pariah Carer

Sometimes I feel like I’ve become a Pariah Carer.

I am the person who fights unwinnable battles and batters her head against walls that will never come down. I get stressed, but cling onto the wreckage for so long that I am holding onto a single piece of driftwood by the time I either sink or accept rescue. After five years of this I should have learned better, but I haven’t.

This is a topic I’ve been meaning to write about for a long while but it’s hard to own up to the ‘Pariah’ label. There are echoes of the subject in my previous post How NOT to Get a Carer’s Assessment. Recently I have had to hand over most of my dealings with dad’s care agency to my sisters in France and Australia – partly because I am not coping and partly because my extreme distress when dealing with things is jeopardizing our relationship with the agency. It’s not that the agency is perfect and I’m not – we have had serious issues of care to contend with that have put my dad at risk at times – it is just that I get so upset and frustrated when I try to sort things out that my involvement can be counterproductive.

This is not something that is unique to my relationship with dad and his caregivers. I struggle with many things in day-to-day life. Boiler breakdowns or even a dripping tap can upend me. But it is dealing with the system – bureaucracy and phone lines and the complexity that seems to be built into simple tasks nowadays – that totally floors me. It is bad enough trying to deal with this in my own life, but taking on dad’s affairs too has been a step too far.

My Pariahship doesn’t just sit with the system though – I get frustrated at dad himself. At his lack of insight (which is part of his dementia), at his stubborn intransigence (which is part of his personality), and at his inability to accept help gracefully (which is partly his bid to remain independent). I say to myself: ‘Give willingly and lovingly or not at all’, but that is easier said than done. Sometimes I find myself sat at the breakfast table arguing with dad and I end up shouting. Sometimes he shouts at me, or bares his teeth, but often he just looks like a lost little boy and I end up crying and apologizing, and we have a big hug, and I say what a rotten up-and-down daughter you have, and he strokes my head like I was five again.

There! The paragraph above was really hard to write, but I’ve said it. It’s like a confession – a guilty secret – to say that you don’t cope with caring for someone who you love. Yet I know that other carers will identify with this, at least to some extent.

Friends and family advise me to pick my battles, and they are right. That you have to weigh up whether the outcome is worth the cost. Others understand my urge to engage with a system that often will not help my father or me. Mainly, like me, these people have worked in the field of health and social care and are concerned about issues of safeguarding and capacity. But in the final analysis it is the carers that dad is relating to day-to-day, and they are lovely people who genuinely want to help.

In the end it is about people, pure and simple – I just wish I could be the person dad deserves. Deserving or not, though, I am his daughter and he will always be my dad.

MAD MOMENT…

Can too many theatre and music gigs in one week lead to cultural overload? I’m trying for a record this week!

MARVEL MOMENT…

Taking some peace with a walk by the Oxford Canal in the middle of my journey home from my recent visit with dad.

© Anne de Gruchy

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Living on the Margins

Today, yet again, I woke up in a bed away from home. To be precise, I woke up at my father’s house. This has become familiar after many years of visiting for long periods to support him with his increasing health needs. But today was different. Today I was alone in the house. No dad, no dog, just me.

Dad is in hospital. Several days ago he had an emergency admission with what emerged as a bad urine infection. This, in itself, was a result of follow-up checks after several recurrences of bladder cancer. Sadly the checks showed that his cancer has returned, so I am here for the long haul.

I am used to living on the margins. Part of me has always liked sitting alone in motorway service stations with a cup of tea or resting my head and watching the world go by as I travel away from my hometown by train. The day after dad’s admission I finally escaped to the hospital restaurant for an hour and bought myself a cooked breakfast. I sat there, updating family and friends by text and watching the health workers from the weekend overnight shift come and go, taking a well-earned break. I felt comfortable, as if this was somewhere I belonged. Somewhere rootless and between lives.

Generally I am a person of routine. I value being at my own house and knowing what my day or week will bring. I miss my cat and my familiar things around me when I am away. When called upon, though, I can embrace the itinerant lifestyle. I actually feel very happy setting up a new ‘base camp’ in my dad’s spare room. On this occasion, because it is unclear how many weeks (or months) I may need to stay, I have brought everything except the proverbial kitchen sink. I have a filing system of dad’s stuff worthy of the British Library and have got my writing things and books to occupy me should I get any free time between hospital visits and my caring role.

The difficulty comes when switching between the two – my settled ‘home’ mode and my trouble-shooter role. Because of my long history of depression I keep a mood chart which helps me determine cause and effect – what might trigger my depression or make my migraines worse. My chart shows a clear link between being away from home and a big dip in mood on my return. It happens every time, however well I prepare for it. It is the reason I try to keep sensible gaps between visits – so that I have time to settle back into a routine and rebuild my mental health.

Now, after many years of spending time with dad, my routine at his house is almost as well established as my routine at home. I know his habits and his foibles, I know what he will tolerate and the requests or changes that upset him or make him aggressive, I know how to keep the wheels well oiled.

But today, waking up in dad’s house alone with the prospect of daily hour-and-a-half round trips to the hospital until he is discharged, everything is different. The house would feel less empty if I brought the dog back from kennels but I don’t want to leave her alone for long periods. I am in limbo, surrounded by decisions I feel ill-equipped to make, with no support from the social care services. The care agency that has looked after dad for five years has cancelled the care contract because of the length of dad’s hospital admission, and his needs once he comes out are unclear. All I can do is make my ‘bed away from home’ as comfortable as possible and prepare mentally for a roller-coaster ride.

MAD MOMENT…

Driving home from the hospital late at night along unfamiliar Wiltshire country roads. It felt surreal, partly because I was so tired and partly because I have become used to living in a city again and the deep darkness is so unfamiliar now.

MARVEL MOMENT…

Doing the Telegraph concise crossword with my dad in hospital and him being better than me at getting the clues! (He’s 91 and has a diagnosis of Alzheimer’s.)

© Anne de Gruchy

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Loneliness, Dementia and Living the Life We Want

I’ve been thinking about my lovely dad, about him sitting there at home with his little dog, and worrying that he might be lonely. Perhaps it’s because I’ve been experiencing a low period myself – in fact, a period of quite severe depression – but I know he loves company, and that without his Westie he’d be quite lost.

It’s hard not to project our own feelings and concerns onto the lives of others. When you’re caring for someone, and trying to support them, it’s hard to leave behind your own thoughts and to really listen to what they’re wishing for themselves. For my dad, that’s clearly to live independently at home for as long as he is able. ‘I don’t want to move’ is a mantra for him if you talk to him about future options – about exploring the possibilities that would be available should he no longer be able to live safely at home.

Now days, dad simply moves through each day trusting that what has always happened will continue to happen. That, on the day of his Probus Club, someone will turn up to give him a lift. That, when his 41 Club have a posh Christmas dinner, someone will sort out the payment and the menu choices and a means for him to get there. He no longer does these things for himself, but he does not remember this. We make wonderful diary secretaries, me and my sisters!

There are many things that dad no longer does. He will open letters but he no longer replies to them. He forgets they’ve arrived, and when I visit I may or may not find them and have to troubleshoot the consequences of his lack of response. Thus he misses medical appointments or bills go unpaid. Much of his mail now comes to me, or my sisters have to deal with things by email (they both live abroad). He no longer remembers if he’s fed the dog, though fortunately she makes her needs known if she’s hungry. He no longer changes his clothes for fresh ones or eats vegetables or puts the bin out or makes me a cup of tea when he does one for himself.

We worry about dad. We know that he gets disorientated and that sometimes he leaves the door open when he goes out, but we also know that he is happy living where he is with his familiar things around him. He is totally reliant on the care package we have set up – on the carers who come and go, who take him shopping, and do his washing, who help prepare and heat his meals. Over time some of them have become his secondary social life – the people he relies on because they are familiar faces and part of his routine. They alleviate the loneliness he feels.

In many ways dad is on borrowed time living at home. His poor eyesight increases the chance of accidents and falls, and his dementia puts him at risk of fraud and means he can no longer perform everyday tasks or remember people’s names. He is like a child – happy unless you try to change his routine or tell him what he should do. But, as those with experience of dementia know, caring is also about allowing and managing a certain level of risk in order to maximize a loved one’s freedom and independence. If dad takes the dog for a walk he risks not being fully aware of the traffic or finding his way home easily, but he has his faithful companion and it helps his mobility and circulation, too.

I know dad sometimes gets lonely, because he’s told me. But he’s living the life he wants to lead and I have to step back from my own feelings and let him get on with it. If it were me, I’d no doubt feel the same – and I’d no doubt be just as single-minded in trying to maintain the lifestyle I loved.

MAD MOMENT…

Going on a full day of yoga and meditation, when it is probably 20 years since I last tried to bend my legs into the Lotus position!

MARVEL MOMENT…

Winter gardens!

annedegruchy.co.uk image: winter garden flowers

© Anne de Gruchy

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How NOT to get a Carer’s Assessment

For many years now I have been caught up in a cycle of stress and meltdowns trying to juggle life and work and my dad’s needs. This has been aggravated by the fact that my dad lives 200 miles away, and you will be familiar by now with my rants about the woes of long-distance caring. I spent several fruitless years trying to get support from the social care services where my dad lives. When I was close to a breakdown I asked his social worker for input and help with crisis planning, only to be told that I should pull out and ‘let your dad fail’ – only then would they be able to give some input. I wrote to ask for a Carer’s Assessment and was refused.

Over the following two years I took this battle on personally, creating a certain level of worry for my family and friends along the way. I asked for support from my GP with little success. I changed GP, again registering as a carer, and asked for help in appealing the refusal of the Carer’s Assessment, only to be told I should ‘park’ my expectations. But I’m a stubborn person when I believe in something, and I was feeling desperate and alone. I saw a different GP in the practice and now have some good support.

Then, at this very difficult time, a special man flitted in and then out of my life. I did not know whether the ‘out’ was permanent, and began to think about the reasons things fell apart – and the way that I tend to spend so much energy thinking about how other people are feeling that I don’t fully engage with, or acknowledge, my own needs. My special man would immediately recognize what I’m trying to put down in words – he had an uncanny ability to really ‘see’ me. It was something that brought us close, but that could also be a problem. Sometimes he wanted to get through that veneer – past the concerned/stressed/taking-on-other-people’s-problems me, to the ‘real’ (and more relaxed) person underneath.

This thinking spree proved to be timely. My helpful GP had written to social services in dad’s area asking them to reconsider giving me a Carer’s Assessment, and a few weeks later a big questionnaire plopped through my letterbox. I had hoped that the assessment might entail meeting with, or speaking to, an actual human being, so I telephoned the Carers’ Caseworker who had been assigned to me but was told that I needed to complete the paperwork before any face-to-face options could be considered – so I hunkered down with a supply of biros and a big mug of tea.

The Carer’s Assessment, like most things to do with carers, was not designed for those living long-distance. The questions were all about how your daily role of caring might prevent you doing certain things, and asked what a ‘typical’ day would look like. I have no typical day. If I’m at home it’s one thing – leading my own life but with time spent on phone calls, paperwork, finances, organization and crisis management for dad – and if I’m at dad’s it’s 24/7 supporting dad with no ability to lead my own life or to go to work at all.

But a magical thing happened as I began to fill in the details – I started to realize that this was all about me and not dad. I began to see that the ‘taking-on-other-people’s-problems’ me actually needed to start doing a bit less rather than a bit more, and that dad, too, stood to gain if I could find the more relaxed me underneath.

Dad is clear about what he wants. He wants to stay at home, independently, for as long as possible. We – his family – want to support him to do this. However it comes at a cost, and increasingly there are risks and issues of safety to consider as his Alzheimer’s progresses and his eyesight deteriorates further. But what I see more clearly now is that one of the biggest barriers for dad is me being realistic about what I can do. I know I need to give care lovingly if I am to do it at all – and moving from paid employment to self-employment has facilitated this – but I am still the person who takes other people’s problems too much to heart.

I have decided to try to regain a bit more of ‘me’ – to actually visit dad less often, but give him more quality time and attention; to work with my sisters to simplify his affairs; to make space again for spiritual things and not setting an alarm at the weekend. I hope to meet my Carer’s Caseworker face-to-face, but I am going to try to be my own support, too – to take responsibility for managing myself as well as dad.

MAD MOMENT…

Flapping around trying to prevent dad from setting himself alight at the candlelit Midnight Mass on Christmas Eve. I was only partially successful – he has a nice brown singe mark on his jacket sleeve. He was by no means the only one flirting with fire in the aisle that night!

MARVEL MOMENT…

The response of my wonderful ‘old’ friend to my recent depression – texting me every day and making me feel cared for and supported at a very dark time.

© Anne de Gruchy

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Mind Matters

It’s a golden autumn afternoon, with blue sky and a blustery wind. I have a migraine headache coming and going behind my left eye, so I am trying to allow myself to relax. This, on a day when a plumbing malfunction left me with no useable sink or washing machine (my sink waste mechanism crashed and burned late last night); on a day when my new lodger/house-sharer is in the process of moving in; on the day before the long drive down to Dorset to see my dad again.

My head is in a funny place at the moment. I am finding it hard to maintain an equilibrium and am upskittled easily by even small things – and, believe me, there have been plenty of straws to break this camel’s back. One minute I feel I am coping fine, the next I feel completely overwhelmed. My appeals for help via a request for a Carer’s Assessment and for more input from the mental health services have been turned down. Pulling out, and leaving my father without proper support, is not an option for me.

Then, a few days ago, a friend’s partner suffered a catastrophic stroke and underwent emergency brain surgery. Life hung in the balance. Someone young and vibrant suddenly wasn’t anymore, and their whole universe of friends and family were thrown into the uncertainty of an alien space.

It’s been a wake-up call.

How far I’ve let myself get bogged down in the detail of everyday life! My own struggles hinge on the minutiae of maintaining things, on ownership and property, on so many thousand words to be written every week.

The situation my friend finds herself in, took me back to the time that we nearly lost my son during heart surgery when he was 15. To the sudden, sharp, realization that life is not a given and that every moment is precious and has to be lived. Being reminded of this again I have begun to seek the goodness in the things that stress me out: the blessing of having a wonderful Quaker friend who came, at very short notice on a Saturday, to fix my sink; the joy of having found a like-minded soul and ‘cat auntie’ to share my beautiful home; the fact that the love between myself and my father binds me to his care.

Last night, a further blessing. My new mind-man, with whom I have found an amazing connection, telephoned me in response to an email in which I told him that the plumbing malfunction had made me feel like throwing in the towel. He listened, and soaked up that very upskittled mess in my brain, until I simply felt sleepy and OK instead. Like the lulling of a lullaby; a tone poem in caring and how to talk ourselves back to common sense.

So now I am thinking: how to treasure this golden afternoon? Maybe I will go out into the garden and gather the leaves that are dancing in the wind, until my house-sharer returns and we can begin a new chapter gathered in under the protection of this roof.

MAD MOMENT…

Brain somersaults! Again! I am convinced my brain (as well as my scatty cat!) is trying to do as many rotations as the leaves in my back garden in the autumn wind. Now where on earth was that ‘off’ switch?

MARVEL MOMENT…

A wander in Wareham Forest with dad and his dog, Isla. The joy of simply being outside with someone you care about and exploring somewhere different. And, of course, seeing Isla’s excitement at all those wonderful new smells!

annedegruchy.co.uk image: walk Wareham Forest

© Anne de Gruchy

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The Saga of Dad and the Gunge Boiler

Or how dementia and a distance of two hundred miles turns boiler breakdowns into a multi-faceted guessing game and a delicate delegation operation!

Recently, my dad’s boiler broke down. It didn’t owe us anything. To our family’s knowledge it had been chuntering along for all of the 30 years dad has owned his house, although the radiators had become distinctly lukewarm over time, and the death rattle when it started up had become ominous. Accurately ominous, as it turned out.

We found out about the breakdown when my sister made one of her regular catch-up phone calls to dad. He told her that the boiler wasn’t working and that he had arranged for British Gas to come out under their Homecare agreement. My sister rang to check, and, to her surprise, she discovered that this was true. However there was a delay of several days and, as dad is 90, has dementia and is severely sight-impaired, my sister did her best tenacious bulldog impression and the nice British Gas people agreed to come out the next day, which was a Friday.

Hereby starts a mysterious tale of information, misinformation and memory loss…

WHAT DAD SAID: The engineer came, needed a part and was coming back on Sunday morning to fit it.

WHAT LOVELY SISTER DID: Phoned dad on Sunday morning to remind him to stay in for the engineer’s visit.

WHAT DAD DID: Went to church. Well you would, wouldn’t you, if it was a choice of that or your boiler being in bits.

WHAT I DID: Rang dad and said: Is your heating working? Dad: I don’t think so. Me: Did British Gas come this morning? Dad: I went to church.

So I rang British Gas who told me that the part they needed (a pump) was not available until Tuesday anyway, and the Sunday visit had been planned to deliver some extra heaters, and that they’d turned up and dad had been out – did I want them to try again?

I turned down their kind offer. Dad would not have been able to work out or remember how to use a heater that he wasn’t familiar with, and he wouldn’t be able to read instructions as he is nearly blind. He would most likely have forgotten to turn it on, or off, or worried about what it was doing there and rung me up to find out.

So, to Plan B. This involved mobilizing some lovely local help. I rang a friendly neighbour and she agreed to go round and check that dad was OK and that the immersion heater was switched on for hot water. I arranged for the care agency to alert the carers to the situation, and for them to put extra blankets on dad’s bed and by his chair in the lounge. Fortunately it was during the warm early autumn spell, so I wasn’t too worried about the cold. I also arranged for the neighbour to go over early on Tuesday morning to ensure that somebody was in, and up, and there to open the door, when the engineer arrived.

TUESDAY: Neighbour came, engineer came, pump fitted but boiler would not work. Full, very expensive, system flush required. Neighbour and engineer agreed to come back on Thursday. After consultation with dad and my sisters, I authorized, as attorney, for the large sum of money to be spent.

THURSDAY: Neighbour came, engineer came. I telephoned dad and said: Is your heating working now? Dad: Yes, I think so. Me: Phew, thank God for that!! I put the telephone down and two minutes later dad’s lovely neighbour phones me: Well the engineers worked really hard (she said) but the system flush knocked out the thermostat and they’ve got to come back tomorrow to replace it.

FRIDAY: Neighbour – way beyond any call of duty – came, engineer came. I telephoned neighbour: Is the boiler working? Yes! Has the immersion heater been switched off? Yes! Have you got yourself a triple gin and tonic and a big pat on the back? Or, at the very least, a nomination for neighbour of the year award…

And so it goes. Dad’s boiler is working wonderfully. It is now blissfully quiet when the heating comes on in the morning, and I no longer need to wear an extra jumper in the lounge. Dad’s lovely neighbour joined us for a concert a few days ago, and we found ourselves immersed in the exuberant cello playing of Steven Isserlis as he joined the Bournemouth Symphony Orchestra to play Shostakovich’s amazing Cello Concerto No 1. I hope dad’s neighbour knows how much her kindness and help is valued.

There are an army of lovely people who support dad – some paid, many not – but without them he’d certainly be keeping company with the penguins from the British Gas adverts in their miniature icicle-filled worlds.

MAD MOMENT…

Cheesy crumpets in front of the X Factor? That’s about as mad as it got this week!

MARVEL MOMENT…

Wonderful Beeston Oxjam. Wandering the streets between musical and literary treats and venues, bumping into groups of interesting people, and simply drinking in the atmosphere.

© Anne de Gruchy

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Expandable Brains

Tonight, as I often do, I woke in the early hours with lots of interesting thoughts buzzing around my brain – things that intrigued me about humanity, and ideas I wanted to explore through my writing. I remember clearly thinking that I would never have time to pursue all these ideas, and that I could do with a bigger brain to hang onto and process all the information.

It is a sad preoccupation of mine at the moment that my memory and brain function are not what they used to be. I struggle to recall the names of people and places, or plays that I have been to and books that I have read. I cannot recall how a plot went, and why a particular book was a favourite. As a writer who thrives on analysis and the thrill of exploring things, I find this alarming. When I woke at 4am this morning I was presented with the clear notion that I need an expandable brain.

The next step my somewhat erratic cranial connections took me, was to think of my father and his shrinking brain – evidence of his dementia. Of course, like many people with parents who live with dementia, I worry that my own brain is going in the same direction – that, far from expanding, it is actually shrinking. It is so frustrating that, at a time in my life when I am bursting with energy and ideas to write about, my brain is stubbornly telling me: enough, enough!

Computers, of course, have no such problem.

When I first did a programming course, back in the 1970s, I never got to see the computer – it was a mystery machine that filled an entire room in some faraway corner of the building. We had to deliver our programs via a series of cards with holes punched in them. These were somehow fed into the mysterious machine and, if we were lucky, two weeks later a huge stack of concertinaed paper came back with the results. Things are very different now, but back in those days you could actually understand how a computer worked. I was able to write in several languages, including Basic and Assembler, and could see how a program – written through binary ‘ones’ and ‘zeros’ – could actually be entered into, and processed by, a machine.

But computers have moved on. Their trajectory has taken them from stacks of paper to tiny, tiny chips that hold unimaginable quantities of information. If I could capture it, I could carry round my entire brain library on a memory card that is smaller than my little fingernail. Barring dropping it down the loo or leaving it for too many hours in the Sahara, it would survive and perfectly reproduce the information, on request, ad inifinitum.

What intrigues me, though, is that the human brain does not just produce the information ‘on request’. There is no logic as to why particular thoughts surface in the middle of the night, or why a sudden theme of interest emerges. Some nights I am too drowsy to wake up and note down my ideas, and they are lost. Other times, like tonight, I haul myself from sleep and reach for my trusty pen and paper, and the thoughts survive and are jotted down. It is the creativity of the process, the illogical cross-connections and jumps, that make the output human and endlessly fascinating.

This is why I read blogs, and novels, and timelines, and twitterfeeds. It’s why I hold weird repeated conversations with my dad; and why I continue to write, not knowing who might see my work or whether I will ever make any money from it. The ideas insist on coming, and they connect us to each other and our amazing universe.

MAD MOMENT…

That cat of mine again! He must be double jointed….

annedegruchy.co.uk image: Cat on rug

MARVEL MOMENT…

Sitting in the sun by Beeston Canal at the remarkable Boathouse Café with a cup of tea and veggie sausage cob. Just one of those moments that was simple bliss in the middle of a difficult day.

© Anne de Gruchy

2

Tentative Tips Three – Dementia Caring with Love

Here, as promised, is another set of ‘Tentative Tips’. As I said previously, please do take them for what they are – ideas shared in the hope they might prove useful to others as they have proved useful to me and to carers I have talked to.

Find people who understand

Carers’ Groups can be a God-send. Through my work I know the mental health and social care systems inside out, but nothing prepared me for the problems and emotions I would face when I began to care for my parents. Don’t be proud. Seek out other people in similar situations and have your friends and family support network on standby. The Alzheimer’s Society run some excellent Carers’ Support Groups (including the one I attend), and there may be local Memory Café sessions where you can take the person you care for along and have a chat to other carers, too.

Not all Carers are in the Same Boat!

My dad lives a long way away from me. Although people who care for someone who they live with may have similar experiences of dealing with dementia, the problems of live-in or local caring are quite different from the problems of long-distant caring. I have found another long-distance carer (via the Carers’ Support Group) and we now meet once a month for lunch and to off-load and support each other. Even the two of us have quite different problems to address, but it really helps to know that someone else is in the same boat and bailing out hard too!

Don’t believe everything people tell you

Be stubborn! I was told we couldn’t get continence pants for my dad on the NHS, only the pads. Unfortunately my dad couldn’t work out how to use the pads and they would end up half way down a trouser leg with the peel-off strip still in tack. With the help of the District Nurses I argued his case because both his memory and eyesight problems prevented him from being able to use the pads. Common sense won out in the end and we now have regular deliveries of the pants on the NHS. Fight your corner, gently but with determination, if you need to – or ask others to help or share their own stories or ideas.

Find the fun

Fortunately for me, my dad has retained his quirky sense of humour – and what could lead to more humorous situations than dementia? We often have a laugh about what he can’t remember, or the tricks his mind plays on him. He has also developed a very strange love of ducks (yes, ducks), and his house is burgeoning with quack quackerly variations from cuddly to concrete! If the person you are caring for does not see the funny side (my mum was developing vascular dementia before she died and became aggressive and paranoid), then find a friend to talk to and don’t be afraid to laugh about it together.

Frustration is normal

Yes, it is!

Embrace personality changes

Dementia can make you feel very hopeless as you watch someone you love change and eventually not even recognize you. People often say that they’ve ‘lost’ someone, or that ‘they’ve already gone’ long before they physically depart this world. But personality change can be embraced if we find ways to relax into it, and can even have surprising benefits. For instance my dad was always a very self-contained man who did not express his feelings. The Alzheimer’s has opened up his softer side – he feels sentimental about things that left him untouched before (see ‘ducks’ above) and even tells me ‘I love you’ – something he never articulated to me in earlier years.

MAD MOMENT…

Phone call from the ‘builder down the road’ telling me my dog had got loose and had been rescued from running around the cars in the road. I don’t have a dog. It took me a few moments to remember I had got my mobile number engraved on the tag worn by my dad’s lovely westie. And, yes, she is OK and safely returned to her doting owner.

annedegruchy.co.uk image: dad and dog

MARVEL MOMENT…

A very special birthday: relaxing reflexology, then time (and a home-made birthday cake) with my wonderful son and his girlfriend, followed by drinks at my local pub surrounded by family and friends. Bliss!

© Anne de Gruchy