2

Brain Libraries

Recently I went to a talk about the 1609 Forest Survey at the fabulous Bromley House Library in Nottingham. It was one of a series of talks about Sherwood Forest and its history and archaeology.

Notwithstanding that Sherwood Forest is one of the most notorious ‘non-forests’ in England, it was a wonderful talk. (There are just over 1,000 acres in Sherwood Forest National Nature Reserve as it stands now, with not much in the way of really mature woodland, compared to 100,000 acres or so in the 1200s. Even in its heyday, the designation of the land as ‘Forest’ was all to do with Royal laws and hunting grounds, carefully designed to prevent those scurvy commoners from getting their hands on all that nice timber and venison, and not a lot to do with actual trees.) The speaker at our talk was engaging, and we were able to look at interesting old maps that illustrated the changing forest and county boundaries, and the communities within them. The significance to the local people of how the land was designated was fascinating.

Bromley House Library is a very special place. It is a private library in a lovely Georgian building in the centre of the city with a hidden secret garden behind. It is probably the most civilized place I will ever go. Everywhere you look there are books: on shelves, up walls, along corridors – from floor to ceiling in every room. There is a spectacular spiral staircase taking you to even higher levels of books, and amazing ancient attics, including a dark room for an early photography business. Cosy reading spaces with old upholstered chairs allow you to enjoy the books, or maybe some writing, in peace. The members love it, and the building loves them back.

Thinking about the library took my mind on a curved ball path to the art of cataloguing and retrieving information – not only in a library, but in a brain. Recently I was working in the NHS in a project providing support to carers of people with dementia and we received training from a psychologist about how dementia affects memory, and, more to the point, information retrieval. He likened the problems of dementia to having a wonderful filing system with drawers full of information, but the process of accessing this information has become dysfunctional. The information is there, but reaching it, particularly things that have happened in the short-term, is a problem.

My dad, typically of many people who live with dementia, has trouble recalling what he did half an hour ago but an incredibly detailed memory for the events in his past. Although we have to play guessing games as to who it was that invited him to Sunday lunch, I have been learning much more about his years as an apprentice on the steam engines at Swindon and his life as a young man. Sometimes he takes me on detours in the car to look at places he used to work or court his girlfriends, and we have never once got lost. An education indeed!

So I followed my curved ball full circle and thought about the beauty of Bromley House Library and its book-lined rooms, and the corresponding beauty of a life held in memory in the human brain. Whether or not we can retrieve all the information stored there, my dad’s mind is a treasure trove of stories. His dementia, far from limiting our conversations, has made us delve into the deeper recesses and higher shelves of his brain library – to the attic rooms we hadn’t plundered previously – and a whole new adventure in the past.

 

annedegruchy.co.uk image: Bromley House Library annedegruchy.co.uk image: Bromley House Library annedegruchy.co.uk image: Bromley House Library annedegruchy.co.uk image: Bromley House Library

Find out more about Bromley House Library at: http://www.bromleyhouse.org

MAD MOMENT…

Late night escapades with my sparkly young friend in Nottingham, and visiting some of the achingly cool (my latest phrase!) bars that I never dared go into before!

MARVEL MOMENT…

Discovering the wonders of reflexology and the marvelous Emma Brown. What she does to your feet is amazing! Check out her website at: http://www.reflex-therapy.co.uk

© 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

0

Childish Treatment Challenge

This morning, on my way to my Quaker Meeting, I rescued a child. Well, not exactly rescued, but I did respond to a distress call.

I was walking down one of the lovely local leafy lanes (I just love all those ‘l’s!) and from behind a hedge I heard a small voice calling out: ‘Help! Mum! I’m stuck.’ The voice was clearly distressed and the call was repeated with increasing tearfulness. I wondered whether to leave the response to the ‘Mum’ in question, but did not know whether she had heard the cries. So I walked to the gateway of the house and saw a young girl (About 8 years old? I’m not very good with ages) standing outside in her pyjamas, her feet balanced on a ground-floor windowsill with her hands clinging onto the open top window above.

The girl was crying. I asked if she was OK and whether her mother had heard her and was coming. She said that she didn’t think so, then launched into a garbled story muddled by tears about how she had been naughty in some way. It felt wrong to go and lift her down – I was a stranger to her and didn’t want to frighten her further – so I reassured her and suggested that I knock at the door to fetch her mum. The girl agreed readily. When I knocked, the door was opened by her father. I said that I wanted to alert him to his daughter’s situation and his immediate response was: ‘She’s been naughty, but thanks’ as if this explained everything.

At Meeting I found it hard to still myself and stop thinking about what had happened. How had the girl got there? Had she climbed out of the window and not been able to get down, or was she trying to get in? I thought about the punishments we mete out as adults to naughty children. I thought about the book I am reading and how I treat my dad.

The book I am reading is ‘Elizabeth is Missing’ by Emma Healey. The protagonist and narrator is a woman who has memory problems, and whose attempts to solve the mystery of her missing friend, Elizabeth, are hampered by those around her not listening or taking her concerns seriously. When you buy multiple tins of peaches every day at the shop, having forgotten what you went there for and what you bought there yesterday (peaches), people tend to stop taking seriously anything you tell them. So Maud has to somehow go about finding the answers on her own, assisted by her somewhat haphazard note-writing.

I am only 36 pages into the book and already it is painful reading. It is painful because in every description of the reactions of the carers and of Maud’s daughter I see my own reactions to my dad. And it is challenging reading. The sighs (when something is repeated for the hundredth time), the looks, the resigned voice, the lack of attention to what Maud is actually saying – all these things I have done to my dad, and more. It made me feel so sad that I almost couldn’t face reading on.

When someone has memory problems or dementia, it is so easy to slip into treating them like a child – to ditch the respect and attention we would give to the words that other people say, to be impatient. After meeting the distressed child I questioned in my head what reaction is appropriate to ‘naughtiness’, but obviously I did not know the circumstances or background of the situation. Certainly, with my own son, I never managed to handle things very successfully, but I did make the effort to find some sort of equilibrium. With dad, I don’t often give him the respect of switching my brain into gear at all.

So I’ll take this opportunity to say ‘Sorry, dad.’ And: ‘I love you.’ Of course the two are irrevocably intertwined. Without love, I wouldn’t be making the effort (or the mistakes) at all.

MAD MOMENT…

Doing a seven mile bog walk, on my own, along the coastline at Islay. The path WAS marked on the map but did not actually exist. Instead there was bog, bog and more bog. The local farmer directed me but was puzzled why I was attempting it. He did not mention bog at all! With no phone signals and having been dropped by my friends in a remote location so I could walk back, my options were limited. Nervous is not quite the description as I stood on a hassock in the middle of a field of bog, trying to work out whether to go backwards or forwards. Into the breach, and all that, but at least I am here to tell the tale!

annedegruchy.co.uk image: bog on Islay

Bog and Burn! Islay walk

MARVEL MOMENT…

Trying out my new hearing aids for the first time when watching television. No, it wasn’t just the TV’s speakers or mumbled speech. Wow!

© Anne de Gruchy

0

A Missing Piece

It is a strange thing, the ups and downs of a long-distance carer’s life. When your visits or phone calls are frequent, or the paperwork overwhelming, you’d give anything for a break. But every so often there is a lull, a moment of calm when the care agency’s input is all that’s needed and the crisis alerts have gone quiet and, for a while, you can be ‘off duty’.

At the moment I am in a lull period and I am finding being ‘off duty’ surprisingly difficult. For once there are no emergencies or looming medical appointments. There isn’t even a planned visit for the next eight weeks. My sister is visiting next month which gives me a break and even allows me to go away on holiday with my friends.

But I sort of miss dad. Although I phone him every other day, he is not present in the same way as when you see him. On the phone it is hard to get any sense of how he is, or to find something meaningful to talk about. I know his diary well (we plan it and set everything in it up for him), but if I ask him what he did at the Probus Club that morning he will remember he went simply because I prompted him. He won’t remember what the speaker talked about or where they had lunch or any of the names of who was there. Now, I simply ask if he enjoyed it. Even subjects like the weather are risky because sometimes he seems unsure whether it has rained or been sunny. He sounds vague and slightly sad. The only safe topic is his little dog. ‘Guess who’s beside me?’ he’ll ask, with a big smile in his voice.

When I am with dad it is intense. Even when I am doing nice things with him like a mini break by the sea I am constantly on duty. I find the responsibility of arranging and overseeing every little thing very difficult. Dad may have a zizz (his afternoon sleep!) or a quiet cup of tea, but I will be washing the toilet mats, or shopping, or cooking, or sorting out a problem at the bank. But dad, himself, is there. His quirky sense of humour and his willingness to break into song as we travel: ‘Oh I do like to be beside the seaside’ we sing loudly as we head to the coast in the car. Even the difficult bits – his stubbornness and inflexibility – highlight his presence and determination to engage full-on with life.

So now I am back at home, trying to progress my writing and to reinstate a routine following two intensive visits to dad. My life feels kind of empty despite my multiple friends and activities. I am more inclined to focus on the agents’ rejection letters for my second novel than the positive feedback I have had about this blog.

On the plus side are the moments of joy such as meeting Mary the Beekeeper. Mary agreed to help me with the research for my novel and we spent a wonderful morning talking bees and allotments and gardening. I ate wonderful homemade oat and honey cookies (and of course got the recipe) and came away with a jar of honey and a sprig of the beautifully scented Philadelphus ‘Belle Etoile’ which I smell every time I pass the windowsill where I have placed it.

I still feel sad, though, and a little empty – as if part of my life is missing.

Philadelphus Belle Etoile

MAD MOMENT…

Daft antics at the pub following the concert mentioned below! Feeling mad and mentally 22 again.

MARVEL MOMENT…

Singing with my wonderful community choir, Beeston Voices. Our summer concert for family and friends was so uplifting. Singing is definitely the best pick-me-up ever!

© 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

1

Tentative Tips Two – Dementia Caring with Love

Here, for your perusal, is another set of ‘Tentative Tips’. As I said in Part One, 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 other carers I have talked to. Do feel free to comment and share your own ideas. I feel that this is a series that could run and run…

Express yourself through caring

You are still you! Find fun and quirky ways to care, or things to do with the person you care for which express your personality. Don’t think you can’t do wild things (and sensible ones too!). If nothing else, dementia can free the inhibitions, so why not take your cue from the person you care for? My dad is much more likely to enjoy a picnic by the sea in February or have a game of crazy golf than he was before the Alzheimer’s set in. He loves nothing more than a sing-a-long in the car. It’s taken time, but I’ve learnt to relax and have fun with my dad.

Don’t keep reminding!

When memory is an issue, reminding people of appointments or activities or the need to do something can seem logical and sensible. However, repeating something time and again can end up stressful both for you and the person you care for. It can also heighten their sense of not being do the things that they used to do, and they may feel (and may well say!) that you are treating them like a child. If nothing else, it is simply exhausting! Give yourself a break and let that reminder remain in your head then float away. I know it sounds nuts, but I find that visualization tricks help with this – I simply imagine that niggle in my head lifting away like a flock of birds into a blue sky. Heaven knows why, but it works for me!

Be the Mistress (or Master) of Deception

Recently at the carers’ support group we were talking about problems with sleeping – ie what strategies to use when caring for someone who goes missing from bed and sits up all night. Having eliminated most other options, we looked at the possibility that a glass of beer near bedtime was not a good idea. Changing to non-alcoholic beer seemed an obvious suggestion, but people with dementia are sticklers for routine and often hate change. They also have an uncanny ability to notice the slightest difference to, for instance, the look of their beer bottle. This is where deception comes in. Although we hated to suggest it, it can be a solution. So how about emptying one of the old beer bottles and substituting the non-alcoholic version instead? We continued sharing our experiences and soon discovered that deception also works for the refusal to have a change of shirt scenario – several people had found that purchasing multiple shirts of the same colour and design meant that used ones could disappear into the wash unnoticed.

Let them teach you

Try to see things from the perspective of the person you are caring for and learn from this. I find I often get irritated and have to remind myself that if it was me with dementia I would definitely not be playing ball or taking things lying down! For ‘obstinate’ read: ‘someone who wants to stay independent and has the strength of character to go for it despite difficulties’, for ‘unrealistic’ read: ‘would rather do something the way they always have with peripheral fall-out than accept limitations’. OK, you do have to draw the line somewhere, but sometimes a stroppy reaction or refusal to accept a suggested way of doing things actually demonstrates a determination to remain the person and personality they always have been. Take off the ‘carer’ hat for a moment and celebrate!

MAD MOMENT…

Starting up the internet dating lark again! Haven’t I learnt my lesson by now?!

MARVEL MOMENT…

Don Giovanni. Royal Opera House production. Big screen with accompanying deer in beautiful Wollaton Park. The amazing climax of the opera set against the backdrop of floodlit Wollaton Hall.

annedegruchy.co.uk image: Floodlit Wollaton Hall

Floodlit Wollaton Hall

© Anne de Gruchy

0

Double Trouble: On Mental Health and Caring

I have been given the opportunity to contribute a blog post to the Involvement blog at Nottinghamshire Healthcare NHS Trust. For Carers Week I shared with them my own blog about caring for my dad who has Alzheimer’s. As is the way with the supportive carers and mental health communities, the Involvement Team kindly guest posted one of my own blog posts and offered me the chance to write another one for them – so here it is. I am also posting this on my own website.

I thought I’d share a little of my own journey as someone who has lived with mental health problems all their life but has recently experienced the double impact of becoming a carer.

I have a mood disorder. Variously, over 54 years, I have been given the labels ‘bipolar’, ‘schizoid’ and ‘recurrent depressive disorder’. I don’t like labels. Occasionally they can be useful – for instance if you need support from medical practitioners when dealing with the benefits system – but mostly they stick us in boxes and make it harder to climb out.

The big turning point for me, in dealing with my mental health, was when I accepted that this is who I am, that there was no simple biological explanation or miracle cure. This is my natural way of being and I simply had to tailor my lifestyle accordingly.

I stopped trying to hold down a full-time job and went part-time. I stopped my battle with the side effects of drugs and worked with a psychotherapist to manage my mental health without medication. It was a long process and my mental health still impacted heavily on my life – I lost several jobs because employers were unsympathetic or discriminatory and relationships were a minefield – but for many years I managed a reasonable balance and pretty happy life.

Then came caring. First my uncle, then my mum with the early stages of vascular dementia, then, after she died, my dad. I have lovely sisters who help as much as they can, but they both live abroad. I worked part-time and had some degree of flexibility, but the older members of my family all lived 200 miles away. I couldn’t take a half-day off work to take my dad to the hospital, I had to take three or four. Eventually, at the beginning of this year, I gave up the struggle and resigned my job – which was, ironically, leading the wonderful Compass project that supports carers of people with dementia in Nottinghamshire.

Caring, for me, is long distance. One of my blog posts Long Distance Caring – How to Stay the Course addresses the particular problems of this situation (find it at: https://annedegruchy.co.uk/2015/05/18/long-distance-caring-how-to-stay-the-course/). Yes, there is a care agency going in to help with my dad’s day-to-day needs, but we have to manage the package, as well as trouble-shooting multiple problems and health needs. There is my dad’s social life and lifts to co-ordinate, his house and dog to maintain, and his finances to deal with under power of attorney. There are crises and visits at short notice. Dad is determined to stay in his own home, and who can blame him? However structure and routine are important to me, and all this change and coming-and-going has been challenging and distressing. It has not been good for my mental health.

I had a breakdown at the end of last year, and another not long after stopping employed work to focus on caring, but at last I feel the tide is beginning to turn. In an attempt to make sense and something positive out of all of this I have registered as self-employed and returned to my writing. I hope to publish my novels. My blog is part of the process of putting my work out there, and I hope people might like to have a look at it! Share the link to my website and you’ll make one carer and weary mental health battler very happy…

© Anne de Gruchy

IF YOU WANT TO KNOW MORE ABOUT THE INVOLVEMENT TEAM…

https://involvementvolunteeringexperience.wordpress.com

Nottinghamshire Healthcare NHS Trust provides integrated healthcare services, including mental health, intellectual disability and community health services. The Involvement Team work within the Trust to ensure that service users and carers are involved in service planning and scrutiny of their services. They also provide volunteering opportunities and collect and analyse service user and carer feedback.

0

The Big Birthday Bash

My dad was 90 earlier this year. My sisters and I spent a good few weeks debating the benefits and pitfalls of a big party. However, despite the fact that dad can no longer remember his friends’ names or what day of the week it is, for six whole months last year he remembered that he had a ‘significant’ birthday coming up and that this meant he was entitled to a party.

The party was the subject of many a jokey conversation with my dad, and grew bigger and more elaborate by the week. He smiled at the thought of it and I began to develop plans. The guest list grew then shrunk then grew again as the family tried to work out if a large number of people would confuse and disorientate him or be a source of pleasure. The likelihood that he would not remember old friends and whether this would distress him was mulled over. But dad’s joy at the idea was infectious and so the invitations went out.

The day I gave dad a copy of the invitation I’d designed, complete with steam trains and some big ‘nine zeros’, his face was blank. My heart sank that perhaps I had got this wrong. It was as if we’d never discussed this before, and to him, with his Alzheimer’s, this must have been how it felt. But dad is a sociable animal, and it was easy to re-engage his enthusiasm for the idea.

Dad’s sociability has been a surprise. When my lovely mum was alive it was obvious she was a ‘people person’, and she was always at the heart and soul of the local community. When she died, suddenly and unexpectedly at the age of 80, her funeral packed the church and we ran out of Orders of Service, despite having printed up 100 copies. When my dad was left alone with his dog I think we all expected him to retreat a little from the social circuit. He is a man who likes peace, and detail, and steam trains, but who was never very engaged emotionally. Four years on, though, and dad always takes up a social opportunity if he has one. He goes regularly to church and to his clubs – Probus, 41 Club, the Model Engineering Society – and never, ever misses the chance of a meal out.

And so it was that the great day came. Dad was 90! We, his daughters, had congregated from our scattered corners of the world and he was surrounded by family and friends. People came from as far as Kent and the Lake District. A massive birthday cake in the shape of a nine zero lit up his universe with candles and sparklers. Dad beamed, the centre of attention amidst family reunions and old friends catching up.

Yes, we had to remind him who was who and how he knew people. But the faces were familiar, even if he couldn’t place them, and the knowledge of friendships and family connections clearly remained beyond the ability to recall the details of who, how, when and where.

Now, of course, dad is happily anticipating ten years on and his telegram from the Queen!

annedegruchy.co.uk image: dad at 90

Dad at 90!

annedegruchy.co.uk image: 90th Birthday Cake

Birthday Cake

MAD MOMENT…

Waving wildly at the sky asking the sun to come out in the middle of a car park in Derby.

MARVEL MOMENT…

A lovely walk in the Felley area with a friend of mine. I lived near there for 20 years and it is one of the hidden gems of Nottinghamshire. I love standing on the footbridge over the M1 thinking ‘here I am on a lovely walk while you’re down there in a car on a busy motorway’! My friend, more positively, said that she thinks about the different places people might be travelling to…

© Anne de Gruchy

1

Tentative Tips Part One – How to stay standing and happy alongside the person you care for with dementia

I’ve worked for many years in the field of mental health, and more recently with people living with dementia and their carers, but nothing prepared me for the emotional reaction of becoming a carer myself. First, my mother developed vascular dementia. She died suddenly four years ago, relatively early in the progress of the disease, but left my dad alone with the beginnings of Alzheimers.

I know the health and social care systems well, but have found it incredibly hard to deal with them when setting up care for my dad. It doesn’t help that my own mental health is fragile. I’d like to share with you some of the insights that have come to me along the way, and things that I have found helpful. This is not practical advice on services that are available – the excellent Alzheimer’s Society or Dementia UK or one of the many carers’ organisations can provide much more comprehensive advice than me – but more an emotional take on what does and doesn’t work.

I have called these posts ‘Tentative Tips’ simply because I am no expert and everyone finds their own ways of coping. They have already turned into a series – the simple list I had initially envisaged expanded and expanded and who knows where it will end! Take them for what they are – ideas shared in the hope they might prove useful to others as they have proved useful to me.

A FIRST THOUGHT ABOUT LANGUAGE

I was twittering the other day and picked up a link to the Dementia Words campaign run by DEEP and the Dementia Action Alliance. See: http://www.dementiaaction.org.uk/dementiawords for more details. This campaign is asking us to consider the language we use when discussing dementia. There is a DEEP guide called Dementia Words Matter written by people with dementia. They talk about ‘curl up and die words’ that make people flinch and create stereotypes – words such as ‘demented’, ‘sufferer’, ‘senile’ and ‘living death’.

Words are so important. How we speak about someone, or about our experience of caring, imprints itself onto our minds and the minds of others. If we are negative, we transmit negative feelings that can make the whole experience worse for everyone involved. It is like my experience of depression: the more you name it the bigger the hold it has over you. But in just the same way that you can generate negative ideas and stereotypes through words, you can also generate positive ones. I am trying to value the love, humour and new relationship I have with my dad since his dementia – I don’t always succeed, but we are on a journey together and learning all the time.

Thinking more about this even made me change the title of this blog post. I had originally called it ‘how to stay sane while caring for someone with dementia’ but felt the connotation of being driven and mad by caring was a really negative one and that this also labeled the carer and the person cared for as separate, when, in fact, we are all human beings and in this together.

FIND COMMON GROUND – AND MAKE TIME FOR IT!

What are the things that you both like doing? Find things to share. It took me a long time to work out the sense of doing this simple thing! When I stay with dad I now earmark visits to the seaside, a classical concert, a theatre trip, or a meal out somewhere, as these are things that we both love. We also enjoy a good view of the countryside (even though dad is partially sighted) and walking – well, strolling really – the dog. Over time I have learnt to add a couple of extra days to my visits so we have time to fit in the nice things as well as dealing with the practical ones.

CHOOSE THE PATH OF LEAST RESISTANCE

It must be scary finding you can’t do some things anymore, or that people are telling you this. Don’t try to face the person you are caring for with their lessening abilities, even though it is very easy to fall into doing this. I now try to actively avoid situations that confront my dad with something he cannot do. I used to end up trying to justify why, for instance, I was paying a bill for him – pointing out that he had left previous ones unpaid – but this simply upset him and he would call me a liar. It was unpleasant for both of us. I have learnt it is kindest and easiest to say nothing, and simply pay the bill quietly without mentioning it.

LAST MINUTE CAN BE BEST

My dad was the person who always loved to look forward to things. He would gain weeks of pleasure from knowing one of his daughters was due to visit or that he was going for a day out. Now, as time has gone on, he is likely to get confused or anxious – worrying that he can’t remember the details correctly or that someone has forgotten to put the date in his diary. He comes back to this time and again and is disappointed when he finds that it is not today that I was due to arrive but next week. Dad has finally arrived at the point where last minute can be best.

Discussions at the Carers’ Support Group I attend, and with carers I have met through work, highlight other problems that can arise from alerting someone with dementia to something in advance. For instance a carer’s partner, having been reminded a few times of an activity they would be going to soon, simply got upset and declined to go at all when the time came. This was an activity that they had enjoyed immensely the previous week and the carer had expected that the promise of going again would give them something to look forward to. In another situation someone had said ‘why would I want to do that?’ when their wife suggested a family outing they would normally enjoy. Other anecdotes raise similar issues and it is clear that this is a common problem. For many carers the solution can simply be to not say anything at all until the last minute. ‘Let’s get your coat, we’re off to Singing Group now’ perhaps feels a lot less threatening to someone who cannot keep track of dates than the thought of facing the same thing at some future time.

DON’T BEAT YOURSELF UP FOR FAILING TO FOLLOW THE ‘TENTATIVE TIPS’!

I’m never very good at practicing what I preach, even if I know it makes sense! We all mess up. Just stop, take a deep breath, make a cup of tea, and start again from square one.

(There will be more ‘TENTATIVE TIPS’ in future posts.)

MAD MOMENT…

Doing Daft Dancing round my house with close friends and my lodger’s disco ball! (Yes, we did the Status Quo dance and head-banged and air-guitared to Smoke on the Water, as well as some less embarrassing and more modern music provided by my lodger!)

MARVEL MOMENT…

The amazing wild flowers on Cressbrook Dale in the Peak District on a recent walk.

annedegruchy.co.uk image: Cressbrook Dale

Cressbrook Dale

annedegruchy.co.uk image: Early purple orchids

Cressbrook Dale – Early Purple Orchids

© Anne de Gruchy

2

Long Distance Caring – How to Stay the Course

I don’t find caring for my dad easy.

The word ‘carer’ slips out freely enough – I have worked with carers and in the field of mental health over many years and, just as I am not shy of admitting to having mental health problems, I am happy to identify myself as a carer. Sometimes this feels a little fraudulent, and I add the rider ‘long distance’ to the word carer. When people think of carers they tend to envisage someone who lives with the person they are caring for, or who lives locally. Someone who has everyday input – ‘hands on’ input involving helping with washing and dressing and meals. I care from a distance of 200 miles.

Of course there are frequently times when I visit and take on a ‘traditional’ caring role, but mostly I am managing, and organizing, and overseeing things. This may, on the surface, seem less stressful. However for me it resulted in a mental breakdown at the end of last year, involving, as it does, not only running my own house, life and affairs, but my dad’s too.

Long-distance caring involves setting up and running a care package, organizing lifts and a social life, dealing with agencies, and somehow keeping a check that the tasks I have asked someone to do have actually happened in reality. This is easier said than done. Try checking from 200 miles away that your father’s memory tablets have been given every day, or that the wheelie bin has been put at the bottom of the drive, or the reason why the bath aid is no longer working. My dad lives alone, bar his lovely westie, Isla. He can’t remember things such as where the medication box is kept (which is a safety blessing, of course) or even that I’ve asked him to go and look for it. He can’t see well enough to know if the tablets are still in their slots. A lot has to be left to trust, even though I know that things can, and frequently do, go wrong.

Equally, with finances, it is impossible to judge how things are going. Dad will swear blind that he manages and never leaves a bill unpaid, but we (his family) know different, having to trouble-shoot regularly when we discover unanswered letters from the personal alarm company, or building society, or house insurer. This is one of the saddest things for me – having to take on dad’s finances under power of attorney. Dad is a proud and meticulous man who never would leave a bill unpaid. In his head (and his heart) he is still that man. Part of the art of caring, it seems to me, is trying to avoid situations that mean I have to face my dad with these realities.

You will notice that I said ‘we (his family)’. I must mention here my two wonderful sisters. My sisters are my biggest support and without them I would sink without trace. Unfortunately they both took the last exit from the UK some years ago – one to Australia and the other to southern France. It’s amazing how much they do via email and phone – arranging occupational therapy assessments and even the installation of a stairlift – but they are not ‘on the ground’ or available to do the emergency dash when dad’s bladder cancer needs treatment or he has a fall.

Before I left my job to focus on caring for dad and my writing, I did a rough check of my input to dad’s affairs over the previous year. It amounted to many hours a week – nearly as many as my regular working week. Every day there are letters, and phone calls, and situations to respond to. Recently I came back from a three week stay which included no less than 13 medical appointments, hospital visits, POA meetings with the bank manager, and one-off practical tasks (including the installation of an induction hob to replace the less-safe gas one). This was time I could not have given whilst sustaining my employment. In their wisdom Dorset Social Services refused me a Carers Assessment – something I am entitled to under government guidelines. They said I do not provide substantial enough care. The fact that I have had to give up my job to care appears to have passed them by.

Fortunately for me, the brilliant Alzheimer’s Society came to my rescue in the form of a Carers’ Support Group near to where I live. Many of the members, who mainly care for their partners at home, find it strange to identify themselves as carers despite having the more traditional role. After all, it is natural to look after those who we love. But it was such a relief to find another long distance carer there. Being a carer from a distance is like The Loneliness of the Long Distance Runner, especially when you know you are likely to be running a marathon, and to find another person to run alongside has been an unexpected joy.

MAD MOMENT…

Sniffing my cat – and without sneezing! (Everyone else is allergic to him!!)

MARVEL MOMENT…

Being surprisingly moved by the Glen Ligon Encounters and Collisions exhibition at Nottingham Contemporary, with its focus on race issues and the civil rights struggles in America in the 1960s.

© Anne de Gruchy 2015