Where Memories Go – book Review

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This is one of the saddest books I’ve ever read. That’s not to say it isn’t good, it is.  But it is also pretty unrelentingly sad.

Sally Magnusson, daughter of the well-known writer and TV personality,  Magnus Magnusson, writes both her mother’s life story and the story of the mother’s descent into dementia. Along the way, she also writes an account of what is currently known about dementia and Alzheimer’s as well as offering a critique of the care options available.

It was incredibly moving and there was so much I recognised as my own mother has dementia but she is not yet as bad as Mamie became before she died. You’d think it would be obvious that I’d find it hard to read but it caught me off-guard. Sally writes so movingly, I found myself experiencing my own sense of sadness and loss, vicariously through her and this made me realise that, for the most part (and for very good reasons),  I don’t regularly examine or even allow myself to experience my sadness over mum’s decline.

This might sound unfeeling but I’d be not much practical use to my mum as a sobbing wreck so mostly we just get on with stuff and I don’t dwell too much on how much she is drifting away from the person she was and how much I miss the mum she was to me.  I’m sure these psychological birds will come home to roost at some point, I will have to grieve sometime.

So this book snuck in under my radar. I admit I only skimmed the final few chapters, I couldn’t bear to read what might lie ahead for us. But I read enough to know how Mamie died and what choices the family made about her care. Sally is brilliant at explaining the complex dynamics at work over every decision but if I had one criticism of the book it would be this:  I felt they had it easier than many people. I know it’s unfair to compare one family’s hardship against another family’s but there were a number of factors for the Magnusson family that, in my view, made it ‘easier’ than for others. They had the choice to keep her at home within the family and whilst that is harder (but only in some ways) than putting a loved one into care, at least they had the power to make that choice.  Many people do not. And it is also very hard to put a loved one into care and then worry incessantly about whether they are safe, settled and as well-cared as you’d like them be. Secondly there were four siblings to share the load which had to help. Undeniably they all had their own major life issues going on concurrently but don’t we all?  I don’t know if Sally was just being extremely generous to her siblings (and who is to say, she may have been) but their story seems devoid of the rancour and fall out that can so easily occur when the care of an elderly parent falls unevenly on one or more sibling.  I felt at times like I’d been given a insider pass to a rather glorious, golden, almost Dickensian extended family full of songs, japes and jolly traditions.

I don’t mean to be unkind, I’m sure the Magnusson family are every bit as lovely as she described them but the point I am making is that in many families dementia can be the final straw on already strained relationships. Not everyone inhabits a golden world where marriages are in tact, siblings are in harmony and  where elderly but competent spinster aunts can ‘live in’ long-term (and what a long extra period of care than gave them). Plus not everyone can keep their loved one in their own home. The slight sense that any other choice would be disloyal or unloving left me feeling uneasy.

Decisions taken on behalf of vulnerable people are never straight-forward or easy. There is no better way through only the ‘best way through’ for each individual case and when relatives are doing the best they can with the hand they’ve been dealt then it’s not for us to make a judgement. Dementia is hard enough without adding any sense of failure to someone’s already burdened shoulders.

Would I recommend it? It depends what you are looking for. If you are looking for a scientific account, it’s not fully that. If you are looking for tips and suggestions for living well with dementia, it’s not either.If you like reading about other people’s  lives then this is for you. If you want someone help you understand just how sad and devastating it is lose someone you love to dementia, then this is book for you (even if you already know that from insider experience) It’s not upbeat and cheerful but it is very interesting and very well written.

 

 

 

Do your memories hold you? Or do you hold your memories?

I have just ‘reclaimed my life’ from the loft and found two things of very great value to me that I thought had been lost.

These are the last two lost items that I feared had  inadvertently gone to the tip when we moved last December. My joy and my house now feels complete! (See ‘A Story of Lost and Found’ from December 2013 http://wp.me/pOEoK-t4 )

About a week ago I took a funeral for a very elderly friend and the reading was from Ecclesiastes 3 said (amongst other things) ‘there is a time to search and a time to give up, a time to keep and a time to throw away’. I had given up searching and had assumed these items had been thrown away but ‘seek and ye shall find…’. I feel a bit like the woman in the story of the lost coin, ready to throw a party saying ‘come and rejoice with me’.  (But as I’ve thrown several parties in the last few weeks, you are cordially invited to this blog instead!)

The first rediscovered item was a slim handwritten notebook which simply had pages I’d headed 1984, 1985, 1986 and so on… On each page I had hastily scribbled (on the few rare occasions I’d remembered to do so): where we had gone on holiday that year, who had been baptised/married or died, significant birthdays and so on. I called it my photo index book and kept it with all our photo albums knowing that one day I might want to remember when it was that ‘so and so’ was born or ‘the name of that nice place we found when we went to Cornwall’.

The loss of this flimsy notebook bothered me much more than I dared to admit. It distressed me hugely to think of all those small but important events/people or places that now might never be recalled just because I’d lost the book.  The eventual putting up of a set of shelves in our spare room was the first step taken towards replacing this volume. But this meant dragging through all the photo albums in order and making notes.

I’d been putting this off not just because it was a job and a half but mostly because I was afraid I might be turning into my mother. She lives in the past and constantly looses herself in her photo albums which are a huge jumbled mess, much like her memories.

I didn’t want to get inappropriately engrossed in the past. Looking through all the albums felt too hard: it meant having to admit that moving out of the family home in which our children turned into adults has been a huge emotionally jangling experience for me: a chapter had closed in our lives, a new one was opening.  This was partly why the albums had been hastily (and carelessly) consigned to the loft. I knew I needed to move on.

But actually I’ve discovered that it’s a lot easier to move on when the past feels resolved and tidy. I had kind of vaguely sensed that it hadn’t felt right to stuff the past away in boxes but I’d vastly underestimated what a sense of completion and wholeness it would give me to have my albums (the record of my life) accessible and arranged in date order. It feels like I have gathered up my life from places where it’s been left scattered. As if I am allowing myself to say ‘this all matters, it has its appropriate place: my history, my record of events, pictures of people who’ve touched our lives, scrapbooks of cards received, images that record the journey of our lives. I had felt unravelled, like an untidy ball of wool and now I feel ‘gathered up’.  Finding the ‘photo index book’ was like finding the key, it meant I didn’t have to trawl through all the albums, they were already labelled by date, they only needed putting in place.

 

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I’ve also discovered that, being in possession of reasonably good mental health (anyone who thinks they are completely mentally healthy is probably deluding themselves about some aspect of their lives) means that I don’t need to endlessly circle round my memories, in the way mum does.  Simply, having them there and in order feels like having a foundation stone, rarely observed but vitally present.

Perhaps I’ve never properly acknowledged my own inner archivist. I had thought I began to log my life in 1984 the year we were married but to my surprise I also found a huge box of scrapbooks going back to my early teens. It seems I have always recorded, labelled, reflected on events way before the web was invented and blogging made possible. And I know I’ve been rejecting this  part of my own character for complex reasons connected to caring for my beloved mum. I’m watching how she sinks herself ever more deeply into the more secure memories of her past, making up for the fact that day to day memories are slipping from her grasp.

It is as if she has ceased to hold her memories and instead, they hold her: the favourite, often revisited, stories of her life’s high points have become like a script we can all recite but even so it’s good to remember that a script has value: it confers an identity on the character playing that part of the story. An identity and a sense of security that she no doubt fears she is losing.

But it’s not just words and stories. Objects and possessions have also taken on vastly more significance. She cannot let anything go because everything tells her a story from her life and to lose the item might mean to lose the story.

So I am having to learn to bite my tongue over all the ‘stuff and clutter’ in her home. Maybe it’s not for me to decide what items are significant and which are not? Having lost something of significance myself so recently and knowing now how much it helps to know that I can easily reference and recall my life, I must learn patience and compassion for her as the smallest loss can make her feel very ‘unravelled’.

Part of the pressure of caring for a parent in this situation is that you have to start holding their memories for them as well as your own. (And when your own feel like a chaotic and disordered jumble, it can feel simply overwhelming to be asked to take care of someone else’s memories as well).  But I’ve haven’t yet told you about the second recovered item: it was my copy of my mother’s memory book! An autobiography she had self-published a few years ago now. The weird ironic twist is that she has currently lost her own copy of this book which is causing her some distress (for all the above reasons). 

The prayer poem below expresses perfectly for me the painful beauty of this process. It’s called A Prayer for a Parent with Alzheimer’s by Kathleen O’Connell Chesto. It’s a prayer written to be given with a hand knitted shawl and the last line always makes me cry.

 

Woven deeply into the stitches

Knitted gently through the strands,

Are the memories –

The funny memories,

The joyful memories,

The painful memories

The memories of all the love

We have shared.

May you feel the warmth of that love,

Even as the memories escape you.

May you be blessed with the comfort

Of those who hold the memories for you,

Even as you lose their faces and their names.

May this shawl offer security in the confusion,

Courage in the darkness,

Enabling you to walk gently

Into that long night,

Even as I struggle to let you go.

 

 

(from Knitting into the Mystery by Jorgensen and Izard)