3

Depression, depression, depression

Oh dear, oh dear, oh dear. I am struggling again. And also saying things in threes, which is never a good sign.

If I’m honest, I’ve been struggling for months, but I’m not sure how much people who’ve bumped into me would believe me. Somehow I am keeping the basics going – even the big basics like running a workshop on ‘Exploring Simplicity’ this weekend – and in the moment I can seem confident and happy, and perhaps I am.

This is the problem with persistent and low-level depression. While I need to, I find that I can somehow produce a smiley face and keep on going. But the moment I don’t need to do this anymore I feel absolutely rock bottom and sit there with tears running down my face. Like yesterday, when I coped OK with taking dad for his hospital treatment and the whole breadth of things that this entailed – finding he wasn’t fully dressed and hadn’t had breakfast when I arrived to pick him up; spending 25 minutes queuing for a blue badge parking space; seeing a team and consultant we hadn’t met before; having to arrange to pick up antibiotics via the GP because the hospital pharmacy was too far for dad to walk – and then, just because he wanted me to take him for lunch, it all suddenly felt too much and I burst into tears.

Worse, sometimes the stress and distress comes out in the form of me being cantankerous and incredibly irritable. Even perfectly reasonable requests feel like huge mountains and I immediately feel like my back is to the wall. The poor person at the other end – most recently one of my sisters – wonders why on earth a simple ask like putting something in the post appears to be beyond me. When I pause for a second, even I wonder why this seems to be too much for me – but it doesn’t stop it feeling like I’m being asked to climb the north face of Everest.

Recently a kind and supportive person expressed that support by sharing with me the text of Desiderata, written by Max Ehrmann in 1927 and beloved by many ever since. Now don’t get me wrong, there are a lot of things I love about Desiderata – I mean, who doesn’t like being called a ‘child of the universe’ and compared to the trees and the stars? However I also have a bone to pick with old Max because he also tells us to ‘Avoid loud and aggressive persons; they are vexations to the spirit.’ I can hear a chorus of voices here, telling me what good advice this is. But if you are one of the people who is, completely unintentionally, sometimes loud and aggressive, then it is the loneliest prose poem in the world.

Many of us who find it hard to control our emotions feel like, and often are, social pariahs. When I am depressed and become overwhelmed by what the world throws at me I can manage so much, but little things often tip the balance and suddenly I am defensive and tearful. I don’t want to be judged on these times alone, but often this is what other people – and my own self-critical inner voice – notice the most. Even when I apologise, or try to explain why I over-reacted to a situation, I am clear in my head that I have failed badly some invisible test of etiquette and what is considered tolerable. It is like those ‘zero tolerance’ campaigns – well-intentioned and aiming to protect others from abuse but ultimately creating a tier of second-class citizens, often with mental health difficulties, who are essentially told that we won’t help you with your problems unless you come to us symptom-free in the first place. I am not condoning aggression, but where, I ask Max, is the Quakerly approach of ‘that of God in everyone’? Of all people having worth and value? None of us are perfect and if we look at the imperfections alone we can lose sight of the essence of a person. This is something that I, too, need to take on board.

I try very hard to control the levels of distress I display to others. I do a form of prayer meditation every day and try to predict what I will be able to manage and to build in periods of space and quiet. I am getting better at listening to the intuitive inner-guide that tells me ‘you can’t deal with this now’. I spend more time outdoors and amongst nature.

Yesterday, after I had taken dad for lunch and picked up his antibiotics, I took myself off to Attenborough Nature Reserve and walked past the lakes, down to the river Trent and along to Beeston Marina. This is my go-to place when I’m down – the canal and the river; somewhere I can see fields and woods and water, and listen to bird-song rather than cars. I am proud that I managed to go there rather than addressing my ‘ought-to’ list and making my stress-levels worse. I sat and watched the world go by. A couple walked along the towpath, comfortable in each other’s company, and linked hands. For an instant I felt the sadness of being alone but then I let it go and moved my attention to a seagull up above. The seagull wheeled in the sky, set against a backdrop of winter sun and misted fields, and for a moment I experienced the freedom and lightness that helps me to go on.

2017-02-13-16-16-21

MAD MOMENT…

Replacing a dead shrub a month earlier than is sensible – I drove past a garden centre and, guess what, I just had to go in! Now I just have to hope the warmer weather holds.

MARVEL MOMENT…

Dad wanting to go out for lunch immediately after being prodded, poked, widened and lasered at his latest bladder cancer check. Of course this will be no surprise to anyone who knows him well.

© Anne de Gruchy

3

Weird Headspace

My head’s in a funny place at the moment.

Yesterday, yet again, I woke up feeling low. This, in itself, is not a bad thing as I have recently been through a period of severe depression and mood swings. ‘Low’ is a lot better than things have been! But low is also disappointing because I have recently also had a few ‘normal’ days where my mood felt basically OK. I had hoped that everything was leveling out and I would benefit from a period of stability again.

It feels like a long time since I had a period of stability. In the bad old days, in my late teens and early twenties, I was all over the place for most of the time. But with effort and support things gradually improved and I learnt to ride the periods of depression without making life-changing decisions like quitting a job or a relationship. Then came periods where for many years my mood was pretty level, and things improved further as my mood began to shift in response to events rather than erratically and for no apparent reason.

Lately, though, things have been getting weird again. I find it quite frightening to be in a place where I don’t know what I am going to wake up to. And the low bits are almost worse than the depressed bits. When I am depressed there is simply nothing I can do except cry in corners – I can’t work, or contact people, or motivate myself to do something. I just have to hope that I don’t do anything stupid.

It’s hard to explain what ‘low’ is for me. I was trying to unpick this with the friend I was on a day out with yesterday, and failed miserably. I just wake up feeling flat and sad, and am prone to bursting into tears when faced with the smallest thing. But also, as I said to my friend, ‘low’ is not an insurmountable thing – if I go somewhere or meet someone I can feel quite happy and well for the period when I am busy. The trouble is that as soon as I get home or am alone again, I feel that deep sinking inside and everything is an uphill struggle.

Our day out, by the way, was wonderful. We went to a Heritage Open Day at North Lees Hall in the Peak District – a very quirky place with ornate plasterwork featuring arms holding onto branches of oak and, even more strange, legs above light fittings in bas-relief. (Apparently a previous owner lost a leg and decided to represent this for evermore in the plasterwork of the living room!) The house also has the most beautiful and ancient spiral staircase made of elm, and has literary connections with Charlotte Bronte who visited and used the building as the basis for Thornfield Hall in her novel, Jane Eyre.

But, true to form for my low days, the moment I got back home from the lovely day out I felt completely flat again. I was weepy and uptight about little things and could not settle. The joy of standing at the top of Stanage Edge with those stunning views and the company of a good friend seemed like a lifetime ago. I went to bed early with a cup of tea and tried to read myself to sleep.

If anyone has advice for me about how to approach low days, it would be entirely welcome. Learning about other people’s stories has really helped me, and the mutual support I’ve received has kept me going through some tough times. But perseverance is hard work and sometimes the daily grind of simply keeping going feels just too much to bear.

In the meantime I will share a few photos from our lovely day out. Maybe it will redress the balance a little towards the positive side!

01 North Lees Hall - Plaster Leg! 03 North Lees Hall - Frieze - hand oak leaves 05 North Lees Hall - Elm Spiral Staircase 1 08 North Lees Hall - Window detail 15 North Lees Hall 1 25 View back to North Lees Hall 27 Beginning Stanage Edge

MAD MOMENT…

Swapping pine beds with my son when he moved house. Lots of things to unscrew and large pieces of bedframe to fit into his capacious car! It took ages, but was a lovely excuse to spend time with my only offspring.

MARVEL MOMENT…

My lovely day out with my friend and the beauty of Stanage Edge.

© Anne de Gruchy

2

The New Functional

Over the past few weeks my mood has been very erratic, and several times I have been overheard describing myself as ‘dysfunctional’ to sundry friends and acquaintances.

Not only that, I have been like a magnet – drawing all my other ‘dysfunctional’ friends to me. In fact, I have had conversations with several friends along the following lines:

Me: I’m in a very weird place at the moment – I’m not functioning at all well.
Friend: Join the club – there seems to be something in the air at the moment.
Me: At least we understand each other.
Friend (or me): Yes, you’re the only one who doesn’t put the phone down/freak out/
run down the road laughing when I scream/cry hysterically/
spout strange gibberish.
Us: We must stick together and be there for each other.

So here we have it – I appear to be part of a community of dysfunctional people who are very good at supporting each other. This has been one of the blessings of my mental health problems over the years – all those wonderful and interesting people I meet along the way. And what people they are! People with amazing intelligence and quirky, questioning minds. People who are funny, who you can hold a proper conversation with. People who are there for you even when their own world is caving in.

I was talking to another friend about this recently and I began to question my language and the use of the word ‘dysfunctional’. I started adding qualifiers – that I only meant dysfunctional in relation to how this rather narrow-minded world sees normality and ‘normal’ ways of being in the first place. What is ‘normal’ anyway, and who’s to say that this is a healthy place to be? My friend immediately responded: ‘You are the New Functional.’

Brilliant! I love it. I had to reach for a pen and paper to write it down because my memory is as dysfunctional as my mental health. This was no easy thing, given that I was driving at the time. ‘Remember that phrase,’ I told my friend as I sent telepathic thoughts to the next set of traffic lights willing them to turn red so that I could safely record this moment of wisdom and insight. I have it beside me now – a scruffy piece of paper with my shopping list on it, and at the bottom the words: ‘The New Functional – communities of dysfunctional people supporting each other’.

The more I think about this the more I like it. It seems to me that it’s not about whether I, personally, am a ‘functional’ person or not. It’s more about how we deal with what we are given. The way my lovely friends have supported and helped me has been far more effective and fruitful (in terms of me feeling a bit better) than anything the mental health services have been able to offer me. The mental health services are overstretched and underfunded, and my hope that they may be able to give me someone to talk to regularly about how I handle things is probably misplaced. However an expectation that my friends will be there for me has always proved to be built on solid foundations.

Beyond this is the massive well of kindness and support available from complete strangers – something that has been facilitated by social media and people’s willingness to share their innermost feelings via blogs. The community of people who share experiences around their mental health is very varied – both in personality types and the kinds of problems we encounter – but when it comes to supporting each other we always come up trumps.

So I’m sending a toast to ‘The New Functional’ community. We’re doing good – and a big ‘thank you’ to you all.

MAD MOMENT…

Trying to be ‘crew’ on my Quaker friend’s narrowboat. The River Trent and Erewash Canal had never seen anything like it! If you want to talk dysfunctional, think me, rope throwing (in the water), lock keys (how do they work?), crossing narrow lock gates (balance? what’s that?), etc.

MARVEL MOMENT…

FREE intellectual stimulation! The excellent Firth Lectures at the University of Nottingham’s Theology Department on the topic of ‘Imagining Faith: perceptions of religious belief in modern writing’ – delivered by the ever erudite and wonderfully nuanced Rowan Williams.

© 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

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