T’is the Season to be…?

I’m no stranger to the whole grief thing.  Losing my Mum earlier this year wasn’t my first rodeo.  I lost my son, Joshua, when I was eight months pregnant.  Delivering a baby that I’d lost in the room of a maternity unit filled with happy, healthy babies.  Surrounded by delighted mums and dads and balloons announcing the joyful arrivals.  So I have shared a bed with grief before and never really left its sheets.  When my Mum became unwell and received a diagnosis of dementia in about 2008, I knew – or so I thought – how it would play out, as my Grandma had succumbed to dementia and I’d witnessed her significant and speedy decline through a teenage lens. So I figured I was equipped to deal with my Mum travelling a similar path. I wasn’t.

After a couple of years of being cared for at home and reaching the point where hers and my younger brother’s dignity, as he cared for her, were at risk of being compromised, we moved her into a care home.  Within a month she was non-verbal.  The only sounds she made for several years were counting, mumbling and the odd chuckle.  Followed by years and years of nothing.  Just silence. Mum’s day reduced to eat, sleep, silence, repeat,  which went on for over a decade. 

And so the grief begins.  A living grief.  A decade in which Mother’s Days, birthdays and Christmas’ come and go and you supress your feelings of loss as you watch other people out and about with their fully capacitous Mum, living life together and sharing important moments.  Whilst you’re in a period of mourning for the person, who is alive, but not living. Disappearing in front of your very eyes, piece by piece.  The person you love reduced to a mere shadow of their former self.  A body ravaged by the cruellest of conditions.

Whilst life is going on all around you, you begin to prepare yourself for her demise.  Planning a ‘good send-off’, thinking about who will still remember her after being out of circulation for so long. What to put in her eulogy as your last act of love.  And practical things like what type of coffin you will buy (Banana leaf by the way, understated, beautiful, natural.  Just like her.) You convince yourself that her death is just a formality, an end point.  That the day will come, she will die and you will be silently relieved that she is no longer trapped inside a body that doesn’t work anymore without daily support and nursing intervention.  That her suffering has ended. Because for years and years and years, you have wondered if she is calm and at peace inside her own silent world, or whether she is confused, scared and silently screaming for it all to end.

Then the day dawns.  The phone rings in the early hours one Sunday morning and you hear the words ‘I’m sorry Justine, your Mum has died.’  Seven every day words ending 14 years of limbo. Relief would surely follow wouldn’t it?  Our family had closure now, did it not? We could finally get round to the send off we had all thought about, but never talked about, over the years. Then suddenly it hits you.  The Real Grief.  Pain that has been bottled up tightly inside you for so long.  The last 14 years were, you discover, merely a dress rehearsal. This was the final act.

So this year Christmas is less ho, ho, ho and more no, no, no.  There’s no tree up, my halls aren’t decked with holly and it’s a Christmas song-free zone. Christmas cheer is in short supply, because I’m grieving and I miss my Mum to my very core.  So I’m going to ride the grief wave and brace myself for the unpredictability of the sucker punch it delivers when you least expect it.  When you hear a certain song, or a memory is triggered, or you remember that she is no longer there. Because as the saying goes ‘grief is the price we pay for love’, and boy did I love her.

But dementia, dementia can do one.

For Mum.

If you are struggling with feelings of grief or loss, Christmas can be a really difficult time.  If you need some help or support to process your feelings, we have a free download that may help you make sense of things, which you can find here https://advocacyfocus.org.uk/becoming-your-healthy-self/

If your grief or loss is making you very unwell or you are struggling to cope over the holiday period, then you can contact the Samaritans on 116 123.  If you need someone to talk to, they will listen and not judge.  Or go to A&E and seek the help you need.  Grief and loss are unpredictable and it is different for everyone.  Speak to someone who can help you through it.