Thursday 15 January 2015

January blues

Good excuse to look at Paul Nicholas.
Click here for a cheese fest
I have mainly been lucky enough not to have to work between Christmas and New Year and, as I've grown older, that lull after the mayhem of Christmas has become more and more important. 

As a child, though, it was a hideous void of anti-climax. 

When I was 8 my Grandma (who had lived with us for 4 months of the year for as long as I could remember) had her 80th birthday party at our house. It was 29th December and, as Mum and Dad were not exactly party animals, a big “do” like this was a novelty. Relations I hadn’t seen before (or since, come to that) came from all over the country.

The following day we were due to go out for lunch with my cousin and his family but Grandma didn’t feel up to it. She took to her bed and died a week later. (If you read my last blog you may see a pattern emerging!)  

When I learnt as an adult that it was only a week I was amazed  – to my 8 year old self it had seemed an unsettled eternity: Everything had been different and uncomfortable. 

To begin with I made still lemonade for Grandma but then she became too ill for that. 

I didn’t see her again after the morning the lunch plans were cancelled. 

Didn’t know she was dying. 

Didn’t get to say goodbye. 

Me if gold injections had carried on
 (Oh OK OK but I can dream can't I?)
On the first Friday of term Mum and I went off to the hospital for my weekly gold injection (a treatment that helped my arthritis enormously but to which I developed an allergic reaction – otherwise by now I would be shimmering!) However,instead of going straight back to school, we visited some friends and I was allowed to stay THE WHOLE DAY ON MY OWN! Mum left and I was taken home that evening. 

I remember clearly sitting on the arm of the settee, while the friends’ baby plonked on the piano, and quietly asking Mum how Grandma was. I'm ashamed to say but it was the first time during Grandma's illness that I had asked. Mum told me she had died in the early hours of the morning. 

I didn’t know what to do. 

Everyone else was socialising as if it were a normal day. We weren’t an emotional, demonstrative family and I wasn’t a child given to crying in public. I swallowed the confusing swirl of emotions deep inside and that is where they stayed. 

I never did cry for Grandma. I didn’t go to the funeral and her death was never talked about, but every year during that time from Christmas into New Year, I would be haunted by the same unsettled feelings and fear of loss. 

This sense of isolation wasn't helped by Dad and Big Sis going back to work, while Hobble Boy and Mrs McTeach headed off to Scotland for Hogmanay. With my friends still immersed in family stuff, it was just mum, me and an eerie, silent stillness.  

It took a long time to shake those negative associations (if I ever have completely) but now it is exactly that sense of peace and space that enables me to reset; it acts as an airlock between careening chaotically into Christmas and stepping sedately into January. 

For a few months I feel as if I am maintaining some kind of control over life, that I am steering a course, Captain of my own destiny. Inevitably, however, at some point in the summer, time seems to pick up speed and, by autumn, my ship has become a car on a roller coaster and I am no longer steering but clinging on desperately until I am finally flung -  exhausted and usually full of cold - to the end of the year.

I came to the conclusion in my teens that humans are, in fact, meant to hibernate. I have not changed this opinion. 

In October, just as the roller coaster is reaching full momentum, I have an overwhelming desire to wrap myself in a duvet and curl up under a table or in the cupboard under the stairs. 

My teenage self would have limited hibernation to January and February (not wanting to miss my birthday and Christmas.) Nowadays I think sleeping from mid-October to mid-March would be just fine and by January the need to hibernate is very strong.

So, on the one hand I am focused, in control and determined that this year I will achieve the things I want to and on the other I want the world to go away and just let me sleep.

I suspect I may be a secret SAD sufferer. What do you th…ZZzzz

Wednesday 7 January 2015

Mum remembered

Snow Picnic in Feb '83
Four years ago my mum died from Alzheimer’s. She was 81 and had started exhibiting symptoms in her late 60s. 

I watched the mum I knew gradually slipping away, becoming a stranger, an elderly child who needed watching constantly. Like a child, mum could be naughty and wilful but she couldn’t be reprimanded – she was my mum. Not that there was any point, she couldn’t learn to change her behaviour. 

It was a heart-breaking, frustrating time and, although we all helped, dad bore the brunt of the responsibility for mum's care. He grew thin and began to show his age. 

Regular weeks of respite care were arranged but the strain was taking its toll.

Mum, Snowman, Rob & Dad
Then, in 2004, mum had a stroke that robbed her of the ability to walk and forced the issue of full- time residential care. One of us visited every day to help at mealtimes, as we had in the hospital. 

Within a year she had lost all meaningful motor skills and the ability to speak anything other than garbled sounds and random words. Sometimes a word would make sense in response to something we said to her and we clutched at these straws of potential lucidity 

“Maybe mum’s still in there, maybe she understands more than we realise” 

But did we really want that to be the case? 

I didn’t. 

I couldn’t bear to think of my funny, quirky mum, who danced with dog and conversed with me  in operatic recitative or Franglais, trapped in a body not able to scratch an itch or ask anyone to do it for her let alone indicate if she was in pain or feeling unwell. 

I watched well-meaning carers hoisting residents and maybe catching a dangling foot on the corner of a chair oblivious to how much that may jar an arthritic ankle or knee. 

I hoped my mum was gone. 

I prayed she wasn’t suffering untold torments.

And all the while I was haunted by her frustrated response to Great Auntie Alice’s habit of repeating herself - “If I get like that, please shoot me.”
Mum & Annie, the other crazy collie/dancing partner, July '90

For six years mum remained in this state, while I got stuck firmly in the angry phase of bereavement: 

Angry with my sister for believing that mum knew whether we were there or not and insisting that somebody visit for at least one mealtime – I couldn’t share her view without being tortured by thoughts of all the other things she would then be aware of and not able to influence. 

Angry with my brother for living far enough away that he wasn’t expected to be on the visiting rota.

Angry with myself for how much I hated going.

Angry with God, the universe and everything for the existence of this horrible disease.

Angry with mum for not just letting go and slipping peacefully away.

And angry with a world that regarded my angers as so unpalatable, especially the last one, that I needed to keep them to myself.

This partial bereavement is another of the cruelties of Alzheimer’s disease. When mum finally died the reactions of the people around me fell into one of 3 categories:
On kitchen duty 1994

 1.  People who couldn’t understand why I wasn’t more upset having just lost my mum.
 2.  People who couldn’t understand why I was upset at all when I lost  my mum years ago in real terms
 3.  People who have lost a parent who suffered from Alzheimer’s or something similar

Only the last category can truly understand what it is like to be partially bereaved, to be stuck unable to fully grieve, unable to pass through the stages and arrive at acceptance and a kind of peace. 

Fancy Dress Oct 94

Now I can see the 
early signs of vacancy
in her eyes 
When mum died it was a relief (not an uncommon reaction when a loved one has been ill for a long time) and its associated guilt, but I was also able to clear a blockage in my heart and mind, to remember pre-Alzheimer’s mum and to feel the full sadness of that loss for the first time.

For me, mum died when I could no longer communicate with her, when I’d think “Oh I’ll give mum a call, she’ll know that” and then remember not only wouldn’t she know but that she’d have the phone receiver upside down and I’d walk the  tightrope between laughing and crying. 

I can’t pinpoint that day, only the day her body failed. 

So today I am writing this blog in memory of my mum and still it is difficult to reach back and find the real her beyond the Alzheimer’s. I hope time will change that. In the meantime...

(Sung in bad operatic style) “Bonjour, maman, j’espere tu es tres content et tu danse avec plus du chien wherever  tu es. Je te miss tres beaucoup. Malheureusement ma francais est still tres mal. Dit “Pardon” a Auntie Stella, s’il vous plait. Je ne voudrai pas elle tourne au grave! Au revoir xxx”