My Mum is a Guardian Reader

26 Mar

My mum is a Guardian reader. I would once have described her as a typical Guardian reader, and meant it at as compliment. I would also once have described her as an avid Guardian reader. Although she gets the paper every day I’m unsure as to how much she understands. A year ago I wrote a short blog about the Pick’s Disease – the form of dementia – that was gradually robbing her of her words. A couple of weeks ago her five children and their partners finally agreed that it was time she moved into a home.

She lived in the same house for 20 odd years… maybe 30, time passes, you lose track of it… and made of it an intricate machine where everything has its place – and woe betide you if you moved something! As her language has fallen away so have her friends. She was once gregarious, but Pick’s has taken that from her too. Her home and its routines were the anchor to what has evidently been a confusing and terrifying time for her. Her world closed in, to the extent that she hardly visited her beloved garden or the art studio she had built in it. The decision to move her came about because not only has her language almost gone, but she seems to have a less firm grasp on the meaning behind her actions, to the point where she has become a potential danger to herself. We have been waiting for this moment for a long time.

We can no longer know what life is like for her. She hasn’t lost her memory, she recognises her family and friends. While she still had words you could see the awful frustration and helplessness that she was suffering as communication eluded her. But she is basically an optimist and a happy person. As the battle has been lost she seems to have found some calm, she doesn’t appear so distressed any more. One of the last phrases she clung to as most of her speech turned to babble was the mantra “Very good”. I like to think of this as a mark of the sort of person she was. A critical Guardian reader, but ultimately with a positive view of the world. I talk about her in the past tense because she is only partly the person she was. I told myself that when I stopped arguing with her that the mum that I had always known would have gone. That time has long past. She is still an affectionate and cheerful person. It’s a comfort to know that she is being well looked after and surrounded by people, rather than largely on her own at home. Communication by smile, sound, company is even more precious when you don’t have words.

Up until about Christmas 2013 the newspaper cuttings of articles she knew were of interest to us continued to arrive, long after the text messages stop coming. But the address on the envelopes became increasingly confused. Who knows, she may have sent more of these ‘letters’ that have never found their way here? One of the last was addressed to “(My Wheelbarrow!)”. No doubt a reference to something we shared that found its way into her mind as she was writing the envelope. It’s amazing how we can burst out laughing at the absurdity of such a thing while feeling the deep tragedy of it at the same time. We should never underestimate the importance of humour and laughter in our lives. 

Anyway, my brother and nephew went to visit her on Saturday. She still appears to think she might be going home, but doesn’t take it badly when the staff steer her back to her room. We are hopeful that she will settle in, enjoy being looked after and find new routines to occupy her mind. And she still reads the Guardian every day.

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As an addendum, I feel I should thank my brother and sisters and their families for doing so much for mum, especially my sisters Charlotte and Claire who live near her and have been such a support to her over the last few years.

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4 Responses to “My Mum is a Guardian Reader”

  1. Alice Buckley (@alicecrumbs) March 26, 2014 at 10:11 am #

    Thank you for writing this. I am only realising as I get older how much I still need my Mum and how very much I love and admire her. Slowly losing what you recognise of your Mum sounds incredibly hard – I can only imagine that it must hurt very much seeing each of her losses – her losses are yours too. I’ve loved the way you have written and tweeted about your Mum over the years. Your love, affection and fondness is so clear. I’m sending love to you and your family. xxx

  2. Sam Warrilow March 26, 2014 at 10:39 am #

    My nana, in her last stages of the disease, forgot my husbands name. So she called him “Your oak tree”. He is 6ft 4 and built like one, so she was right! My Wheelbarrow has really made me smile. Long may she read her Guardian.

  3. Jonathan Chamberlain (@jyc_wragge) March 26, 2014 at 11:22 am #

    Twitter: didn’t someone once say ‘Only connect’? Can’t imagine they envisaged 140 characters or less, but these are connections nonetheless. And this blog is beautiful and reminds me to treasure what I have, for which thanks.

  4. Mark Gretton @independent_mg March 26, 2014 at 8:18 pm #

    Thank you very much for you blog piece. Like others, I have found it moving as well as informative. You are clearly as fortunate in your mother as she has been in her family.

    I’m glad your mum does still read the Guardian. That seems to me a very good illustration of the fact that, despite the pitiless changes of dementia, she still is the same person that she always has been. I can see why you mourn the part of her that is gone, although I try and encourage the relatives of people with dementia that I nurse that the person is still there, although it has become increasingly hard to find the person through the disease. I’m glad you can still see your mother despite the effects of Pick’s disease and please understand, I do recognise that my experiences as a paid nurse don’t have the intensity and hurt of what your mother, you and your family are experiencing. As I say, thank you for sharing it.

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