Sad times

My mum had a massive stroke a couple of days ago. The doctors were amazed she survived it, I'm not sure it's a good thing that she has. I feel bad about thinking this, as I know her will to live is very strong, even though she has many serious health issues. However, her quality of life has been poor at best for the past couple of years, she's elderly, frail and this seems to be the final straw. The stroke has left her unable to speak or swallow and paralysed down her right side, although her doctor says she can hear. At the moment she's kept hydrated with a drip and food comes through a tube in her nose and the only other treatment seems to be time. They say the next few days will be crucial.

My fear is that she's afraid and anxious (which she is at the best of times), locked in her body and unable to communicate how she feels. Yesterday she developed a nasty infection, so was given constant oxygen, a course of antibiotics, another drug to bring her heart-rate down, and she was attached to a monitor giving out constant readings. Funny how you stare at a screen even though you have no way of interpreting the data. It doesn't actually tell me the things I really want to know like how she's feeling, is she frightened, can she hear me, will she get better? The only thing I can be relatively sure of are my feelings of inadequacy and powerlessness to help.

Lily with two of her great-granddaughters less than two weeks ago

The future seems so uncertain right now. Even though like all mothers and daughters we've had our ups and downs, the prospect of life without my mother makes me very sad. There would be no-one to share stories about growing up in the backstreets of Bolton in the 1950s, about life working in the cotton mills, about my beloved grandmother, who died when I was six. When we've seen her recently, one of the best ways of engaging her was to ask about her childhood, life in the war, other members of the family etc. Her longterm memory was still good and we both enjoyed these chats - they were one of the few things lately that could bring the old sparkle back to her eyes.

I keep telling myself it's the natural rhythm of life and everyone's got to die sometime. It's just that since she came to York to be closer to us about five years ago, whenever I've thought of her dying, I always imagined it to be in her bed at home, feeling secure with the people she loves around her. This is no criticism of the staff at the acute stroke unit, who couldn't have been more kind and caring. Yesterday she had Tristan and Rowan two of her three grandchildren at her bedside, plus Rowan's wife, Nicky and Philip and me.  Today Felix is coming from Bristol, and it's at times like these when you really appreciate your family - it's enormously comforting for me to know that Lily's surrounded by people who love her.

The doctor told me last night that if there's no visible signs of improvement by this morning then the plan is to implement the Liverpool Care Pathway. As I understand it, this means that all treatment except palliative care will be discontinued. My mother will be cared for, made comfortable but she will not be given oxygen, drugs, drips etc so that hopefully she will be able to have a peaceful and dignified death.  I'm told this is not a one-way street and that if she rallies then therapy can be resumed, but sadly at the moment this doesn't seem likely.

Lily became very ill for the first time five years ago and she moved to York to be closer to us. At the time I'd been asked to submit a shawl to the first Prayer Shawl Companion. I'll end today with the story of Lily's shawl, which is the one published in the book, I only wish it could help her once again through this difficult time.

Lily's Prayer Shawl

Strange how life throws random events at us, and it’s only with the benefit of hindsight that we see how the different pieces slot together, occasionally dovetailing as if they were meant to happen.  So it was with my prayer shawl.

At the beginning of February my family was celebrating the birth of my first grandchild, Isabella - my mother’s first great-grandchild. No one could have foreseen what would happen two weeks later. After a nasty fall, Lily was bedridden and so my partner, Philip and I brought her to our home in York, believing that some dedicated TLC would quickly put her on the road to recovery. Unfortunately neither of us realised at the time just how frail she had become. After a week I was at a very low ebb as my mother was making no progress, couldn’t get up, hardly spoke a word, didn’t read or watch television, in fact she was so weak all she could do was sleep. 

During that week I’d received an email from the Prayer Shawl Ministry asking if I would submit a shawl for their book, Prayer Shawls.  At first it seemed impossible to fit any more into an already over-stretched schedule, on top of which I had to confess I don’t subscribe to any formal religion.  So I wished Victoria and Janet well with their project but declined their offer.  Thinking that was sorted, I was surprised when they wrote back straightaway asking me to reconsider, outlining the ecumenical nature of the project. 

Over the next few days, despite myself, each time I went into Lily’s room, I started to imagine her wrapped in my unknit shawl, being healed and nurtured. I started to fantasize about its colour (always the first thing for me); it was turquoise, the colour of emotional healing, protection and strength.  The yarn had to be light as a feather, as she was so bruised and battered she couldn’t bear anyone to touch her.  For the same reason the stitches had to be transparent and open - the shawl cried out for delicate lace stitches.

Gradually each stitch took shape in my mind as the shawl asserted itself organically. It became something I had to do, both for my mother and for myself. Nursing Lily, I found that the difficult nature of our relationship was thrown into sharp focus at a time when I could least deal with it. An only child, I was never the daughter she would have chosen.  I started to hope that the shawl might make my mother understand that I don’t have to be like her in order to love her.

Lily was admitted to hospital and I snatched the moment to transform the design that existed in my head into reality. Born in January, my mother’s birthday comes in the darkest time when the year is brand new and only the knife-sharp leaves of the snowdrop dare thrust their silver-green blades through the freezing soil.  Harbingers of spring, these delicate little plants are strong in adversity, confidently flaunting themselves while all else sleeps, proclaiming the promise and excitement of the unfurling new year.  I chose snowdrops for the centre panel of Lily’s shawl in anticipation of many happy and healthy years to come.

My mother’s life, like many of her generation, has not been easy.  Duty and eking out a living have always been the lynchpins of her life, which was largely spent working in a Lancashire cotton mill.  So for the border I chose the Queen’s Edging in the hope that she’ll live every day of the rest of her life in regal fashion, feeling cherished and valued. The pressures and circumstances of her life have often denied her the time to explore and enjoy many of the simple pleasures which I take for granted. The tiny beads, knitted regularly into the edging, are a mantra for finding some delight in every day. Small because some days you have to look extra hard.  Lily likes to poke her own fire, as she puts it, but it’s so hard to be independent, elderly and alone.   When she wears her shawl, I hope the love that’s knitted into every stitch will give her the strength and support she needs to lead the life she wants and the wisdom to know what that is.

This shawl has been an emotional journey for me.  Coming at a time when I felt vulnerable and unsure myself, it helped me find a way of coping.  Whilst working on it, I found myself thinking that everything I was wishing for Lily I would wish for Izzi too.  So it’s dedicated to both my mother and my little granddaughter in the hope that the love and joy that went into its making will surround them both always.

Jean Moss

May 2007