0

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

0

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

2

Writing and Depression

I have been thinking a lot lately about how my depressive periods and my writing interconnect and affect each other.

You may have gathered that I am struggling at the moment with a serious episode of depression. For the first time since I gave up my paid employment to focus on my writing and caring for my dad I have been struggling to get up in the morning and to maintain a routine. Normally, I am the most disciplined of writers – up and dressed and working by 8.30 or 9.00am every morning, to the constant amazement of both myself and my friends. Now, as anyone who suffers with depression will know, I find it hard to motivate myself to do anything and I am far more likely to burst into tears than feed myself, change what I am wearing, or maintain contact with people.

A bigger problem in maintaining my writing when I am depressed is my relationship with computers. I am not sure why, but I simply cannot face technology when I am low. Perhaps it is the things that await me if I switch on, or look at, my computer or my mobile phone. All those emails which need attending to, and all those cheerful people on Facebook leading lives that only remind me how miserable and dysfunctional my own life has become.

Part of the solution is simply forcing myself to begin – to actually sit down with a pad of paper and begin a new scene from my novel, or to risk switching the computer on with the promise to myself that I will just type up something that I have previously written. I suffer from severe migraines that are aggravated by screen work, so I tend to write long-hand then type up my work later. I am a very fast copy typist, so this second stage acts as a mini-editing process and I do not need to look at the screen at all. I have found this works very well for me, both creatively and in resting my eyes, and it also gives me something simple to do when I am low. Once I’ve got going, I find I get absorbed in my work and it takes my mind off the more negative thoughts and makes the day a little more positive and productive.

It is a strange thing, the link between my depressive nature and this writing lark. I have always resisted the idea that there is some kind of ‘therapeutic’ reason for my writing. Why should writing be considered any more therapeutic than singing, or gardening, or meditation and prayer, or walking in beautiful countryside? All these things have proved to be beneficial to my mood, if only I can discipline myself to do them when I feel low. Yet people often ask: ‘Don’t you find writing therapeutic?’. Actually, I find it hard work. Enjoyable, stimulating, challenging, and sometimes addictive – but basically it’s something I have to discipline myself to do. A novel is a big BIG chunk of time and effort when it comes down to it.

On the other hand, I think I have begun to equate my writing with my mood cycles on a much bigger scale because it is what I turn to when I am unable to work. My first novel was written when I had lost a job following a period of depression and I found myself with time on my hands. I just decided to ‘write that book’ – you know, the ubiquitous book that people always talk about writing one day – and I actually did it. In fact I totally immersed myself in writing for several years – joining writing groups and attending writing courses, holidays and summer schools. I even won a Writers’ Award from East Midlands Arts, which boosted my confidence no end.

Then my health improved and I returned to work and my writing declined in proportion to the paid employment I took on. I continued writing occasional poetry and short stories, but stopped mid-way through my second novel. I have always found this – that when I am working I do not have the emotional energy or time to involve myself in major writing projects. Another break between jobs, and I re-worked and completed that second novel. Back to employment, and it was on the shelf again. Now, focusing on my writing again, I am sending it out to agents and publishers while working on my third novel. I am hoping, this time, to make serious strides forward with both books and give myself time to market them properly.

There is something that connects me to writing. Something intrinsic that makes me stay in touch with the writing community even when I’m in a fallow period. Maybe, despite sometimes thinking that I will never earn a living from my novels or see them in print, it is because I am a bone fide writer after all!

MAD MOMENT…

Doing the ‘Chili Con Carne’ song in a choir workshop with a raging migraine – surreal, or what?!

MARVEL MOMENT…

A new dementia blogging website and Twitter feed organized by the University of Nottingham’s IDEA project (Improving Dementia Education and Awareness) has been promoting some of my blogs about caring and dementia – and introduced me to a whole load of lovely new people in the Twittersphere who are talking about these themes. Discovering the inspiring #AlzChat!

© Anne de Gruchy

0

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

0

People with Promise

I have a habit of connecting with people who have problems.

I often think that this is because I am a person with problems myself – a case of like attracting like, or of people finding others who have empathy with them. I really do believe that God – or the universe – brings people and situations to us when we need them, or when they need us, or simply when there is some synergy going on. So at any given time many of my friends and acquaintances, like me, will be experiencing mental health issues, or be snowed under with the stresses of caring for someone.

This is all well and good. It gives me a wonderful framework of friends who understand me, and a mutually beneficial and supportive network of people that is expanding all the time. And of course it’s not all doom and gloom – we have fun and laughter along the way, and share many interesting and exciting experiences together.

The difficulty comes when I try to have a one-on-one romantic relationship with people with problems. Or them with me.

I am a very up-and-down person – you have probably gathered that by now if you are following my blog. In my younger years the doctors slapped a ‘bipolar’ label on me, although this was later peeled off and replaced with ‘recurrent depressive disorder’ one. It’s nice to be disordered on occasion, but not to have a label. It makes you feel like you need to live up to some designer tag and produce at least three manic episodes a year.

Although I don’t do mania, I definitely feel like a Vivienne Westwood piece when it comes to my mental state: mostly full-on out there, somewhat flamboyant, and not at all symmetrical – and most certainly not containable within the social norms.

I love Vivienne Westwood’s clothes, but, like me, they can’t be easy to live with on a day-to-day basis. Those brave men who risk dating or even living with me, may be attracted to the bouncy outgoing bit, but the moment I hit a low they must wonder what’s happened to the happy, sociable person they thought they had hooked up with. Conversely, if they happen to meet me in a depressed phase and for some strange reason feel comfortable in a supportive role, then they often cannot cope with things once I turn into a flighty social butterfly with more energy than a bottle of Lucozade.

Add into this mix my Quakerly thing of seeing ‘that of God’ in everyone (human beings ARE endlessly fascinating and rewarding, whatever their background and life experience, and if you’re not open to this you miss out on some wonderful connections and people) and the result is a string of risky relationships with intense emotional connections, but a lot of gunpowder sitting in a big pile underneath us just waiting to be lit.

The other day I was bemoaning this state of affairs with a friend as we travelled together in the car. I said how I had now got used to my family and friends saying ‘Oh, Anne!’ and ‘Please be careful’ whenever I talked about the current state of my love life. This is partly my fault, of course, for being so open and honest with people I am close to, and I have learnt to be more careful and respectful about what I share now. But sometimes people’s reactions, and indeed my history (and there have been one or two mega-mistakes), make me question my judgement and instincts.

So we are travelling along, and I am saying to my friend how I have a habit of connecting with people who often turn out to have problems akin to my own, and he says, simply: ‘You pick people with promise.’

I love this.

I love that the people I pick have promise. And I love that the people I pick seem to somehow see some promise in me. It’s back to that positive language thing – looking at the good in a situation and not harping on about the risky bits. You can think yourself into the doldrums if you are not careful.

I just hope that any aspiring partner can cope with walking around with a woman whose hair is now the colour of purple pansies and whose mental state can resemble anything from a Sex Pistols T-shirt, to a carpet dress, to a tartan ball gown.

MAD MOMENT…

Ringing dad’s mental health team and the Care Quality Commission on a day when I woke up feeling depressed. Mental suicide.

MARVEL MOMENT…

Going to the optician to choose a new pair of glasses and instantly finding no less that three frames which I loved and were comfortable to wear! Now just have the difficult decision of which pair to pick!

© Anne de Gruchy

2

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

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

1

Just What IS ‘Reality’

I had a discussion recently with an intriguing person I met in cyberspace – all about reality. About slipping in and out of it and what this feels like. About what reality is anyway. (Check out Willem de Kooning for some thought provoking quotes…)

Of course, I got to thinking, and my thoughts went like this:

• Can we actually slip ‘out of’ reality at all? Surely, wherever we are at the moment – physically or in our headspace – is actually our reality?

• If where we are in our headspace is totally weird, doesn’t this just make reality more interesting?

• If this freaks us out, isn’t it time we started changing our idea of what reality is, or challenging others in their limited concepts of reality?

I’ve spent a lot of time around people with mental health problems and believe we should learn from the experience of those who hear voices. This applies not just to people with labels like schizophrenia, but to people with some types of dementia, too. Although the voices can sometimes be very frightening and aggressive, they are often positive and accessible. A bit like me finding I coped much better with my erratic mental health once I simply accepted that this is part of me, many people who hear voices find the solution is to make friends with the voices, rather than trying to banish them through therapy and drugs. The voices are part of reality, too.

Sometimes, when I’m having a particularly low day, I try to focus my reality in to an exact moment of time. The instant I let my reality widen out I think about the things I ‘should’ be doing but that I can’t face at all. Instead, I try to find the ‘now’ reality: the raindrop running down the window pane, the tiny buddleia seedling that has found life amidst the cracks in the mortar of a wall, the sound of the wind and the feel of it on my face.

Living with a reality that keeps creeping into the surreal, or that is not acceptable to the society we live in, is a hard thing. Occasionally I look at my lovely assortment of friends and wonder at the proportion of us who has some kind of experience like this. But then it is logical, given my own experiences, that we have found each other and formed our own community of support.

Connections through mutual experience are really important. Take, for instance, the time I was low and could not work out how to handle myself, so I sent out a tweet into the twittersphere saying:

‘Down, down, down today. Lovely friends but just can’t shake the blues. Made scones as therapy and avoiding computer.’

I had decided on the strategy of baking and avoiding digital stuff, but was finding it hard to follow my own advice. Miraculously (Or not? Some things are just given to us when we need them), within seconds a tweet pinged back:

‘Scones sound great! I’m feeling the same and must go and treat myself now.’

I replied: ‘Hope you find something treatworthy enough for you – remember you are precious’, with the response: ‘Thank you Anne. That really made me smile ☺’

I can’t begin to tell you how important this exchange was to me at the time. My reality collided for an instant with a complete stranger ‘out there’ in the ether. I have since started following my responder’s wonderful and touching blog, also about living with mental health problems. Check it out at:

http://ibelieveinromeo.blogspot.ie

So what is my reality now? Well, actually it is sitting on a beautiful stone bench in the sunshine surrounded by the wind and scent of herbs in the garden at Hardwick Hall.

annedegruchy.co.uk image: Bench in Hardwick Hall Herb Garden

MAD MOMENT…

Deciding to have a ‘Pamper’ afternoon for friends with wonderful Weleda products and reflexology (see my ‘Brain Libraries’ post for details of the brilliant Emma Brown). I now have two friends planning to do reflexology training! Just hope they want to use me as their guinea pig.

MARVEL MOMENT…

Hardwick Hall herb garden comes pretty close!

© Anne de Gruchy

2

Defining Ourselves: Ill Health and Labels

I had an interesting conversation with someone the other day, about how illness can define us. It got me thinking about my own up-and-down mental health, and how it has shaped my life over the years. It also got me thinking about my dad.

My dad has Alzheimer’s, or Alzheimer’s type dementia, according to the lovely psychiatrist who interpreted the results of his brain scan for us. We sort of expected this, having lived with his failing memory and, at that particular time, his increasing confusion and anxious phone calls about everyday things. In a way it was a relief, for the family if not for him, to have a label to pin on his difficulties. It also felt strangely validating – evidence that he actually needed the interventions and support we were providing. Similarly, when my mum became paranoid and aggressive and accused us, her daughters, of plotting against her, the doctor’s verdict of vascular dementia gave shape to our experiences with her.

The trouble with all this is that it is all too easy to let a diagnosis or label affect our expectations and our view of someone, and that includes ourselves. My mental health was very erratic in my teens and early twenties, with big, unpredictable, plunges into depression. At first I wanted labels – a diagnosis or some type of biological cause to explain it – and I went through a whole raft of medications and hospital tests. Perhaps the most useful thing to come out of all of this was the verdict that my high intelligence was a counter to my depressive tendencies, and that I needed to have a stimulating occupation to engage me. I had almost written off the idea that I could cope with work or study.

As I’ve moved on with my life, I’ve always seen myself as someone with ‘mental health problems’, even when I’ve been well and stable for many years. It helps me plan my life to avoid the biggest risks to my health – I work part-time and have learnt how to balance my space and busyness. The conversation about feeling defined by illness made me reassess my view. We all have ups and downs, and I have had many difficult circumstances to deal with in my life, so why do I feel I need this label so much? Has it become a safety net that simply confirms to me I am not worthy of all sorts of things – from a partner in my life to common respect from other people when I struggle with something? I am more than this, and wholeness is important.

With my dad, too, I sometimes wonder at the diagnosis we have been given. Statistically, many people with ‘dementia’ turn out, after death, not to have the brain chemistry to support their diagnosis. Once dad’s bladder cancer was treated his confusion settled down, and although his short-term memory is non-existent, he functions very well with help and support and enjoys a busy social life. The other possibility of course is that the Donepezil/Aricept medication he has been given for his condition is doing a good job. Either way, he can’t seem to put his brain into gear about how to heat up a ready meal, but is very perceptive and involved when discussing ideas and events that strike a chord with him.

So dad’s behaviour and progression is not typical of others I know with dementia (if there is such a thing as typical in any case). And this is the exact problem I am discussing: labels, or a particular diagnosis of illness, can result in us ending up being defined by them. I expect dad to behave or develop in a certain way because of his diagnosis, and when it doesn’t happen I feel that my expectations have short-changed him.

So how about me? On reflection, I have decided that I do not want to be defined. In fact, I like the idea of being ‘undefineable’! But if I absolutely had to be, here are some of the things I hope would be considered to be part of ‘me’:

• God in me and loved by God
• Creative
• A thinker
• Complex but compassionate
• Hopeful for this world despite all its problems
• Bouncing back
• Allowing time to be a healer
• Trying to do my part.

MAD MOMENT…

Having a ‘comfort coffee’ today when I know it is likely to trigger a migraine.

MARVEL MOMENT…

The energy and positivity at the Jeremy Corbyn rally at the beautiful Albert Hall in Nottingham – what an atmosphere of hope and ‘positive politics’!

© Anne de Gruchy

2

‘Have to’ Language

In Meeting this morning, a Quaker friend shared her response to, and feelings about, being a Befriender to people living with dementia. She sounded sad as she wondered about how much of a role, say, and dignity we allow people with dementia to have in their lives.

This chimed strongly with me, and with a challenge about language that was posed to me by another Quaker friend earlier in the week.

My friend questioned me about my use of the phrase ‘I have to…’, which I often fall into, especially in relation to things I do for my father. ‘I have to go down for his hospital appointment’, ‘I have to ring him’, ‘I have to reply to this letter from the bank’. My friend’s point was that we never ‘have’ to do anything – we may choose to, but we don’t ‘have’ to.

My friend is 80 and often challenges any references I make to ageing (and I feel like I’ve done a lot of this lately!). When she does this it helps me to put on my father’s shoes, and see how it must feel for him. I know how much I’d hate it if my son talked, in weary tones, about things he ‘had’ to do for me. It makes me remember the times I made dad unhappy because he doesn’t want to ‘be a burden’. How awful! What a monster I feel like when I think about it. And that’s another thing my friend has noticed – my tendancy to blame, and mostly blaming myself.

I look back now, with sadness and sometimes even horror – no, not too strong a word – at how I treated, thought and spoke about both my parents as they began their dementia journeys, the kind of things I tried to face them with. Whilst some of these responses came from stress and a sense of losing control, I realize now how negative the ‘have to’ words I used were, as well as being untrue. I can see, now that I am further along the journey myself and more able to cope, how they must have sounded to the person receiving them.

When I am honest with myself, I realize that after my mum died and the need to arrange input and support for dad became clear, I did resent this. I felt morally bound to help, I did not feel like I had the choice to say ‘no’. I was very close to my mum and missed her terribly, and was left caring for a father who I did not really know. So I ended up unhappy, and niggly, and impatient, and critical. It must have been awful for my father, who, as anyone would, wanted to keep his independence. To some extent it was a two-way street – dad resenting and getting angry at the family’s interference. Mostly, though, he simply lacked the awareness and understanding that he was no longer coping or keeping on top of things. I had to remind myself constantly of this and we gradually found a new equilibrium in our relationship.

Recently, something has triggered a bit of a U-turn in my thinking. Maybe it is just that I am more relaxed now that I have given up the struggle to hold down a job as well as dealing with dad’s needs. It got to the point that something had to give. Friends who have been supportive and positive about my efforts helped me to reframe things and to see that is actually a good thing to be someone who wants to care and take responsibility. My dad and I have got to know each other, and he tells me he loves me, which is wonderful. I have the blessing of being able to spend some time with him doing things that we both enjoy. I used to feel that somehow I had sacrificed my life and health for dad to be able to stay at home, but, in fact, I have been given something new and enriching.

Now I just need to try to change that ‘have to’ language to match!

MAD MOMENT…

Not going to bed until 2am in the morning and absolutely knowing I was going to regret it.

MARVEL MOMENT…

Finishing laying out the paving in my front garden – and all the wonderful people I have met and conversations I have started with passers by while working on it!!

annedegruchy.co.uk image: front garden paving

My front garden paving!

© Anne de Gruchy