Where Memories Go

A review of Sally Magnusson’s book about her mother Mamie and dementia.

Dementia is a degenerative brain disease that affects 850,000 people in the UK and over 44 million people worldwide. Research is ongoing, but neuroscientists know it is caused by plaques and tangles in the brain that damage the connections between neurons.

With one new case every four seconds*, it is highly likely that you will encounter dementia in one of its forms either as a sufferer, a carer, in a professional capacity, or simply in your local supermarket.

I wouldn't wish dementia on my worst enemy, however that the disease is increasingly becoming a part of our lives and communities is a reality that we have no choice but to face up to.

Aside from the facts and figures, dementia has a very human face. It is the daughter watching her mother decline, it is the wife nursing her husband, it is the questioning looks in the café, it is the grandchildren’s memories that need replenishing.

                                

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What sets Sally Magnusson’s book apart is that it is neither entirely memoir, nor scientific manual. The beauty of Where Memories Go is how the author combines both personal reflection and factual details about this unique of brain diseases. The book is both a question- where indeed do memories go?- and an answer. The answer is at once scientific (Magnusson has clearly done her research) and deeply personal. The story of her mother’s life is interspersed with chapters that explore the history of research into Alzheimer’s as the author discovers what is happening to her beloved mother. No amount of research or drugs, however, can (as yet) slow the disease for Mamie or other sufferers.

Magnusson explores her mother’s decline, but the book is by no means all doom and gloom. On the contrary, the author delights in her mother’s moments of lucidity where Mamie’s loving, intelligent personality comes through. Family moments and happy holiday memories are described beautifully and relished.

A further unique feature of the book is the way in which Magnusson writes to her mother. It reads almost like an extended letter as the author discovers ‘it happens that I find myself talking to you’. Mamie remains present and a part of the conversation. It is a book for her, rather than about her. I also think that this technique grants Mamie dignity in the face of a cruel, ‘identity melting’ disease. 

I was particularly interested in the effects music had on Mamie Magnusson. Even in the darkest depths of dementia-induced bewilderment and anger, we hear how tunes and ditties from her past had the ability to calm and reassure her. On the strength of this, the author set up a charity, Playlist for Life, to encourage the use of music therapy in dementia care.** The idea is simple: ‘a lifetime of memory and feeling and rootedness evoked in song, symphony or TV theme tune, captured on a tiny device and available at any time of the day or night’.

Where Memories Go is about so much more than dementia. It is a moving, poignant story of love, loss, pain, joy and ultimately the bonds that connect us to family and to ourselves.

Reviews of the book have suggested that it should be on reading lists for Medicine, Nursing and Occupational Therapy students. I’d have to agree.

                                                            

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I set out to write a book review but there’s no way I can write about dementia without mentioning my own personal experience. Active, organised, loving, intelligent, my Granny has been suffering with dementia for the last 10 years. Whilst Sally Magnusson’s book is a beautifully crafted personal memoir, it is not a representation of every individual’s journey through dementia. Because the fact is that it affects people differently. Language, memory, mobility are lost at different rates.

It makes me a little sad to admit that my Granny deteriorated more quickly than Mamie in Where Memories Go and has been nursing-home bound for over 5 years.

As I write this, I’ve just got back from visiting her. Picking 4pm to go means that I can spoon feed her tea and take comfort in the knowledge that she still eats well.

After reading Magnusson’s novel, I was keen to try her music-related theories on Granny.

Post tackling a dish of trifle (that went a little more on her jumper than in her mouth) I got my ipod out and put the earphones in, one for me and one for her. I played a few different tunes, scrolling through my playlists to find something that might spark recognition.

I tried some Tchaikovsky and Beethoven. There was no change, for better or worse. No visible calming and no sign of recognition. Just the same vacant look in her eyes.

Then I tried ‘Sur la Pont d’Avignon’, a French favourite of my family and one Granny used to teach. Now, I could be mistaken but it looked to me like Granny was trying to get out of the chair she was strapped into and dance. I played the track on repeat and a little later Granny sang. She actually sang! So it wasn't the words of the song or any intelligible words, but she definitely sang.

I failed to mention that whilst we were listening to music, a nurse came over.

‘We’re just listening to some French music, aren't we Granny?’ I crooned.

‘Does she like French music?’

‘She did…does. Do you recognise this one Granny?’

‘Oh she doesn't recognise anything anymore, there’s no hint at all’.

Hint of recognition? Of cognition? Of personality?

Something kicked back inside me and I vowed to find more music from Granny’s rich life and to come back with a personalised playlist.

I can’t see past that curly, soft grey hair, past those plaques and tangles to Granny’s cerebral cortex and those mysterious control centres of memory, language and consciousness. But if I could, I’d like to think I’d see a tiny golden flicker in a tiny brain cell. A flicker of memory, of a classroom and happy children, a brightly coloured skirt and a young woman dancing on a certain bridge in southern France…

* World Health Organisation 

** See http://www.playlistforlife.org.uk/ 

Belonging

Over the last year I have come to realise that a sense of ‘belonging’ is just as crucial as love, health and happiness to our wellbeing.

Whatever Conrad may write in Heart of Darkness ('we live, as we dream- alone'), I believe we are fundamentally social beings. We gain so much through our interactions with others. But it’s more than simply communication; it is that feeling of belonging to something greater than ourselves that creates meaning in our lives.  As humans, we thrive on the camaraderie, the give and take, the mutual support and the sense of order and unity that characterise our communities.

Belonging to different circles gives us a feeling that we are not alone.

Contemporary young author Marina Keegan explores this idea in her seminal essay ‘The Opposite of Loneliness’.* In the opening, Keegan muses that we have no single word that is the opposite of ‘loneliness’. She goes on to recount, however, that belonging to the student body, friendship groups and seminar classes at Yale University was, for her, the opposite of loneliness.

Personally, I find it very easy to relate to what Keegan writes.

I had this same feeling of belonging during my time at university. I was part of an academic institute, 1 faculty and 3 different departments, a residential college, a year group, a sports team, 2 committees, multiple societies, a band (briefly), and a few different friendship groups including a very special and close ‘fantastic four’. That’s not to mention all the facebook groups I joined, multiple-person messages I was part of and email lists I was on.

In retrospect, this makes it easy to see why I found it so hard withdrawing from my course (following illness) and moving back in with my parents. Suddenly it was just me. I didn’t have all these connections to fall back on: my links had been severed and I became acutely aware of my own failings and imagined sense of worthlessness.

I don’t wish to dwell on this however; simply to point out that belonging is important.

With so much pressure to conform in modern society, it’s no wonder we sometimes feel like we’re an outcast or a misfit.

But you are not alone, and you do belong.

You can ‘belong’ and contribute to something that is bigger than yourself in so many ways, and it doesn’t always have to mean leaving your house as I have discovered.

Here are some circles we can choose to belong to:

Family

Community

Friends

Support group

Church or faith

Sports team

Company or work team

Seminar group

Book club

Night school class

Yoga class

Lift sharing scheme

Choir

Rotary club

Committee

Editorial team

Walking club

Social networking site

Internet forum

The list goes on.

If you’re struggling to find a sense of belonging in your own life, you could try joining a new exercise or social group. Or even do something as simple as becoming a member of an organisation or charity like ‘Mind’ (Details of membership and prices here: https://www.mind.org.uk/register-with-mind/?ctaId=/get-involved/about-minds-membership/slices/rich-text/)

It isn’t always easy to ‘belong’. In friendships and relationships and society, belonging involves a certain amount of commitment and honesty. By entering a relationship, or joining a group, or starting a new hobby, we put ourselves out there, we make ourselves vulnerable.

But fortunately most of the time, it is worth it.

Personally, I have regained a sense of belonging by finding a job, joining a walking club and a women’s group, and connecting with friends, both old and new.

To conclude, I hope that you can find the time in your busy day to remind yourself that you are important, you are loved and that you belong. 

* 'The Opposite of Loneliness' is an excellent short essay and definitely worth a read if you have time. It can be found in full here: http://yaledailynews.com/crosscampus/2012/05/27/keegan-the-opposite-of-loneliness/ 

Self-Compassion

I like to think of myself as a loving person. I have close relationships with my friends and I am an affectionate daughter and sister. But recently I read something that challenged this and got me thinking.

Jack Kornfield, author, Buddhist, and teacher of meditation, reasons that ‘if your compassion does not include yourself, it is incomplete’.

Whilst I try to show love and kindness to others, this statement made me realise that I do not show the same compassion to myself. In fact, I’m quite a bully.

Like many other people, I am overly self-critical. Lying in bed at night I analyse the day, obsessing over every little mistake I made: being late for that appointment, not having the right change for the bus, speaking over someone…the list goes on. I punish myself for what I interpret as ‘flaws’ in my character.

Objectively, however, these are not flaws; they are simply what make me human.

I think we all have a tendency to forget that we are the most important people in our own lives. As such, our minds and bodies deserve the same love and attention we would show to other people.

There are many ways to show kindness towards yourself. You could have a relaxing bath, prepare a tasty and nutritious meal or go for a walk in your local park.

Mindfulness* can be a great way to take time out and focus on simply being, rather than dwelling on the past or worrying about the future.

Below is a mindfulness meditation I have created that centres on self-compassion and gratitude.

Sit or lie in a comfortable place and give it a go.

                                      

Start by taking some deep breaths to relax your body. Close your eyes. 

Focus on your body. Notice where it touches the ground or chair. Be aware of any pain or discomfort in your body. Notice any feelings of anger, hatred or shame towards your body. Recognise these feelings and try to gently let go of them.

Bring your attention to your feet to begin with. Focus on your toes, the ball of your foot and down towards the heel.Treat your feet with gratitude. Think or say internally, ‘thank you feet for carrying me around all day and helping me to balance’. 

Move up past your ankles, up your shins, to your knees. Notice how they feel. Say ‘thank you knees for letting me bend, sit down and walk.’ You might add ‘thank you for giving me the ability to kick a football’.

Focus now on your thighs. Feel the skin and then imagine you can look through it to the muscles. Say ‘thank you legs for giving me the strength to walk and run’. 

Move to your hips. Trace the shape of them in your mind. Say ‘thank you hips for giving me flexibility to move and twist’.

Next focus on your stomach. Without judgement, notice how your stomach feels. Full, round, empty, flat? Thank your stomach for keeping you full and giving you the energy to get through the day.

Notice your back against the ground or a chair. Be aware of any tension or pain in your back. Start from the base of your spine and work your way up to the base of your neck. Take a deep breath in, hold and let it out. Imagine the air travelling down your spine. ‘Thank you back for letting me stand straight and for carrying heavy loads.’ 

Let your mind wander from your back to focus on your arms, wrists, hands, to the tips of your fingers. Think or say, ‘thank you arms for letting me carry, lift, push and pull. Thank you hands for allowing me to write, type, hold and grip.’

Move slowly back up your arms to your throat. ‘Thank you for letting me breathe, swallow and speak’.

Focus your attention on your lips. Are they touching or slightly apart? Trace their shape. ‘Thank you lips for letting me smile and kiss’.

Next, focus on the breath entering and leaving your nostrils. Thank your nose for allowing you to smell flowers/coffee/fresh bread/mown grass (delete as required).

Move your focus up to your still closed eyes. Notice any colours or patterns you see cross your vision. Say ‘thank you eyes for giving me sight. Thank you for all the beautiful sunsets and landscapes I have seen’. 

Lastly, focus on your head. Work your way from your forehead, across your scalp and crown to the back of your head. Imagine the thousands of tiny nerve pathways linked inside your head. Thank your mind for: giving you emotions (both good and bad), the ability to feel pleasure, your memory, your imagination, the ability to think and feel and react.

         Notice how you feel now. Calm? Relaxed? Try to hold onto this feeling for a minute or so. 

Take some deep breaths, before slowly returning to the present.

*’The little book of Mindfulness’: Mindfulness is being aware of or bringing attention to this moment in time, deliberately and without judging the experience. As a form of therapy, mindfulness has been in the news a great deal. More than 10,000 published research papers are available on mindfulness-based therapies. Find out more here: http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/mindfulness.aspx

A brilliant little box...

What’s your go-to action when you’re feeling a bit down? Common coping strategies include making a cup of tea, ringing a friend or having a bath. But what if it’s the middle of the night? What if you’re friend isn’t available?

Introducing…

The Staying Well Box*

*Name copyright: Tees, Esk and Wear Valleys NHS Foundation Trust ‘Staying Well’ booklet

A box filled with edible, comforting, distracting and confidence-boosting objects to keep those negative thoughts at bay.

OK, so I’m not claiming it’s going to change your life. However, if you can gain a moment of happiness, or, at the very least, a distraction the goal will have been accomplished.

Plus… it’s fun to make!

What you’ll need:

A Box or Bag 

It can be as large or small as you like, although in order to fit everything in I’d recommend a box at least 30 cm wide and 15cm deep. A shoebox would be ideal. If you’re willing to spend a little money, Wilkinsons have some nice patterned boxes from about £2/3. See: http://www.wilko.com/fable-stationery/wilko-fable-gift-box/invt/0404781 Alternatively, you could decorate  a shoebox with wrapping paper.   

Something to make you smile 

The first item in your box should be something that makes you smile. This could be a funny Birthday card or a photo of you and your mate pulling a weird face. It could even be a book of jokes or a quote from your favourite comedian. 

Something sentimental 

You might choose to place in your box something that reminds you of a happy event, or a time when you were enjoying yourself. It might be a plane ticket from your last holiday, or a picture from when you went out with your friends. If you have children, why not put in something they’ve drawn at school? It’s fine to put in a picture of a grandparent or parent you’ve lost, but it’s probably best to avoid anything that would trigger extremes of emotion. 

Something to wipe away the tears 

If, like me, the sight of your sentimental item gets you crying even harder than you were in the first place, it’s a good idea to have some tissues or a hankie at hand! 

Something to smell 

Once you’ve had a good old nose-blow, it’s time to turn to your nicely scented object. It could be a candle, some perfume (sample sticks are ideal) or even pot pourri. Personally, I have some whole coffee beans (definitely not stolen from my last café job…) in a sandwich bag, because I really like the scent. 

Something to play with 

If you tend to get anxious and fidgety then you might consider giving your hands a distraction whilst you’re feeling this way. Try a stress ball or if you can’t get one, a soft children’s ball would be fine. If you’re into crafts you could try putting a square of knitting in your box or some beads to fiddle with. 

Something to distract your mind 

This is really important. You should have something in your box that gives you focus and takes your mind, however fleetingly, away from negative thoughts. In the world of wellbeing, there is a new craze for adult colouring in books. You can get these and some crayons cheaply from the Works or WHSmiths. Or, even more easily and cheaply, you could print some patterns off from the internet. Try this excellent website: http://www.coloring-pages-adults.com/ .Another great resource for keeping you occupied is a book of sudokus, crosswords or wordsearches. You can print them off various websites or get booklets cheaply from a newsagent.

Something to cuddle

I have a strong belief that we all need to get in touch with our inner child from time to time. With this in mind, I’d recommend that you put a small cuddly toy in your box. 

Something to help you relax

If you’re feeling angry, stressed or wound up, why not put something in your box to help reduce tension? A relaxation CD would be ideal. Or a picture of a beautiful landscape. Or your favourite painting. If you’re familiar with relaxation techniques, you might choose to print out a breathing meditation or a visualisation. Try http://www.innerhealthstudio.com/visualization-scripts.html for scripts to print off. 

Something to write in

It often helps to write our feelings down. It’s cheap and easy to put a notebook or piece of paper in your box so you can jot down anything that’s bothering you. 

Something to motivate and inspire you

You may be the sort of person who has really high self-esteem and never doubts themselves. Lucky you. I suspect that actually the majority of us have times when we don’t feel very confident in our selves or our abilities. Why not include some ‘confidence cards’ in your box. Simply write some quotes about yourself on a piece of card and paper, or, if you’re struggling, get a friend or family member to help you identify positives about yourself. It might be “I am a fun person, who people enjoy being around”, or “I look after my mum/dad/son/daughter when she/he is not feeling well”. 

Something to eat

Last, but not least, you might like to put in your box something you enjoy eating. It could be a small chocolate bar or a bag of your favourite sweets. If you prefer a healthier snack, try a bag of dried fruit or nuts.

If you’ve got this far… well done! Of course, there are so many other things you could include in your box. Thanks for reading and do let me know your thoughts or suggestions in the comments box below.