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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

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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.

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Analysis Blues (or: How to be a True Creative!)

If you are following my blog you’ve probably gathered by now that I love to analyse things.

It flows though my writing in the way that I explore ideas and psychological change, and also my everyday life. I am definitely too much of a thinker, as one friend highlighted when she queried the words ‘bit of’ in my description of myself on my Facebook page.

The worse thing about all these ideas whizzing round my brain is their tendency to come to me at three in the morning. They insist on being heard and keeping me awake until I get the notepad out of my bedside cabinet and write them down. As I glance at the clock now, it reads 03:46!

Ideas are one thing, but analyzing stuff is another kettle of fish and a bit of a risky business with rather slippery results. It can be dangerous to prioritise head space above the heart or emotions, and I tend to see the analytical part of me as negative and unhealthy – the bit that makes me critical, or nit-picky, or too much of a perfectionist. My psychotherapist would challenge me on this of course, pointing out that for every negative aspect of a trait there is a counter-balancing positive if you just look for it.

This train of thought ties in with a Twitter link I followed the other day, which ended up at an article by Cody C Delistraty called: The Depressing Downside of Creative Genius. This was on an intriguing website called Human Parts which ‘explores the patchwork of the human condition through experimental and traditional personal writing’.

The article was looking, as many people have, at the link between creative genius and mental health. It cited some work done by Andreas Fink at the University of Graz in Austria that looked at the involvement of the precuneus, the area of the brain that exhibits the highest levels of activity during times of rest and which has been linked to self-consciousness and memory retrieval. In other words, the bit that indicates if we ruminate about things a lot, including our own experiences. His work found a relationship between the ability to come up with an idea and the inability to suppress the precuneus while thinking. Fink found that this inability to suppress the precuneus is seen most often in two groups of people: creatives and psychosis patients.

Apparently, this part of the brain only lights up at restful times for most people, but for writers and creative people it seems to be constantly activated resulting in difficulty in focusing on one thing and some schizophrenic and borderline bipolar tendencies. This is absolutely me to a tee and could certainly explain not only why I have struggled with a mood disorder all my life, but the pesky waking up at all hours with a stream of ideas. I definitely need an ‘off’ switch built in!

I did get rather excited, though. If nothing else, and always looking for the positives, I took it as evidence that I am a real writer after all!

MAD MOMENT…

Doing my ‘being a viewfinder’ thing on a walk with my son, who is a professional photographer. He was taking lovely arty pictures of the scenery, buildings and people, and I was holding up my hand and making my fingers into a rectangle to check out the composition options. All I can say is: Embarrassing Mums Rule!

MARVEL MOMENT…

The amazing buzz at the Jam Café birthday celebration and open mic evening.

© Anne de Gruchy

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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

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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

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On Being a Blog Virgin

This is my first ever blog post!

In general I dislike most things digital or powered by electricity – drills, computers, self-imploding phone apps – but love anything manual and messy. Give me a garden to dig or wall to build over social media networks and widgets anyday. Cooking, gardening, doing my art, walking, badminton and singing keep me happy. Writing alternately drives me bananas and keeps me awake at night with ideas that just HAVE to be written down at three in the morning (my memory is definitely not what it was…).

Putting my writing out into the public domain is something I desperately want to do, but getting ‘out there’ into social-media land freaks me out – so this blog is a not-so-minor miracle. It’s like hitting the digital age on one of my dad’s steam trains – full on hiss and heat but many years too late. I got there in the end, but now I need to let the firebox get up to speed.

So what do I want to blog about? How do I make it useful and interesting for me, and hopefully for you lot out there, too?

Here is a list of the things that engage me and that I hope to share with you:

  • The amazing place I’m at in giving up a job to focus on caring for my dad and my writing and artwork.
  • Mental health: the highs and lows and what I’ve learnt during years of tackling my own and working in this field.
  • Theology/spirituality: what I’m reading, what I’m experiencing, what inspires me, what I’ve learn from others.
  • Me, my dad and his dementia. Our journey together. The logistics of caring at a distance. (Including the funny bits….)
  • A ‘Mad’ and ‘Marvel’ moment in my life since my last blog post.

and

  •  I don’t promise that the odd garden or cookery reference won’t pop up sometimes!
Mad Moment…

Continuing to dig foundations and moving hardcore for my paving when my old shoulder injury was definitely telling me ‘no’!

Marvel Moment…

Finding three amazing and inspiring women to form a ‘Companions on the (Writing) Journey’ group.