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”