Wednesday 22 February 2012

Yarn Along: Squaring up to dementia



It is Wednesday and time for Yarn Along again.  What have you been reading and knitting?
This week,  I have given up on Mr Tudge and he has returned to the library but I am still enjoying dipping into Katharine Stewart's crofting diaries.

Knitting-wise I have almost finished the baby cardigan for my nephew - the sleeves are attached and I just have the yoke and bands to knit.

I have also been knitting squares - 10cm (4 inch) squares using odd ends of DK yarn.  I read in the local paper at the weekend about an awareness raising project in aid of Alzheimers Scotland. Some of you will know that I lost my Mother to dementia in 2010. For years we watched, despairing, as she slowly unravelled before us.  All her skills, talents, humour, personality, gentleness, abilities and faculties just came undone- stitch by stitch at first, then part of a row - and then, suddenly - the woman we loved had been ripped away.
Almost as soon as she died, however, she came right back to us - knitted up again in the glorious patchwork that was her self.  The bad memories of her illness - the difficult behaviours, the incapacity, the frustration and the decline during her final months and days - all miraculously vanished.  We spoke about how she had been before this sickness took her from us - we laughed, we recalled, we shared, and we re-membered her.
Since then, I have shied away from anything to do with dementia - the very idea of it has been pushed away - no need to deal with this now. I had my mother back whole again, even if it was only in my memory.  That first new year, a kind and loving friend sent a calender of the most beautiful landscape photography - printed on behalf of an Alzheimer charity.  We could never bring ourselves to hang it on the wall - it would only serve as a reminder of what we had been through. I hated to hear about others who had been diagnosed - it brought back feelings of dread and despair.  Even on the blog, I have a post label for Alzheimer's, from the occasions that I wrote about Mum and her illness. Sometimes I  notice it, then quickly avert my eyes from that word.  Indeed, it is a disease that strikes not only the victim, but their families too and we had all suffered in some way.
But then I read this tiny article - just a few lines and a phone number - Calling Knitters Young and Old. I phoned, and here I am knitting little squares to be joined up into a huge blanket of 71,000 squares - the number of people in Scotland diagnosed with dementia. All those different people, from all walks of life,who are slowly disappearing bit by bit. I like the idea of knitting for these, the unravelled; helping to create a collage of coloured yarn, each square representing the individuality of each person suffering from dementia. I think I feel ready to square up to this disease now.
The squares are needed by the beginning of May this year, so I have plenty time to run a few off as I go along.  Many thanks to friends who are sending me squares too. I do know that there are some who read here whose lives have been touched by this disease, and one or two who are currently dealing with it right now.  I send love, blessings and strength to you all.

52 comments:

  1. Hi Jacqui, I was amazed to read this post as I've been through a similar experience with losing my Grandmother to dementia just over a year ago, and I have found that I feel closer to her now that she is gone than I did when she was still here but terribly ill. In spite of the fact that I did see her often, and still tried to engage with her in any way I could, I suppose I also subconsciously detached myself emotionally more and more in those long and troubled years. When she died, ten years after being diagnosed, floods of cherished memories came back to me that I had suppressed, and I know that my Mum feels the same. Odd how an illness affecting the memory can also have such an affect on the memories of relatives.

    It's a horrid disease that is so little understood, you are indeed brave to be facing up to it and to be doing your bit to raise awareness. I'm really interested in this knitting project, I wonder if anything similar exists in England?

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    1. Hi Emma - it is funny how that works. I think it is to do with detaching to be able to deal with the illness, or else it would be too painful to bear. Now, I even have good and cherished memories of my Mum during her illness - outings we went on, things i tried to do with her - or those silly thongs she would say.
      Thank you so much for your comment, i really appreciate it. xxx

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  2. Dear Jacqui...thank you so much for today's post. I can only imagine how you felt with this happening to your mother because I've had no one close to me touched by this horrible illness. But, one thing I do understand, all the family around must suffer so much. You are so brave to face it. And, now, by knitting these squares...you are moving forward.

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  3. Hugs and much love to you Jacqui, a worthy cause.

    I haven't joined in the yarn along this week, haven't moved on very much with knitting this week, spent some time spinning instead.

    However I have 5 little squares for you so far ... will send a wee parcel of them up to you in good time.

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    1. Oh Dawn - thank you so much - you are very kind and thoughtful xxx

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  4. I think it's wonderful that you are doing the squares and I bet every one you make you think of your mother :) Lovely!!

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    1. Thanks Karen - it is a nice thing to be doing. xxx

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  5. I think a death of a loved one (especially going through something very difficult like Alzheimer's) is always hard to accept. You're right - memories do flood back and often you don't want to be reminded of those trials. I think the knitting squares will be a good thing, perhaps even a bit of a catharsis for you? I don't know. Either way, it'll help keep your needles clacking and using up some of your stash. :)

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    1. Hi Ellen - I think it will be cathartic - even writing this post helped me sort it out in my mind - and - stashbusting too xxx

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  6. Hi Jacqui, you are so right. I also lost my mum just last year to Alzheimers, but we lost her long before she actually died. A very apt description of the disease comparing it to unravelling , which makes the knitting up of little squares so therapeutic, I think.A lovely metaphor.

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    1. Hello Kate - I think I remember your post too. I did like the idea of knitting a blanket of squares - and sewing them all together. I am looking forward to seeing the finished article. xxx

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  7. wow truly a worth cause and too love your metaphor and how beautifully this post was written x x

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  8. I was really touched by this post. Beautifully and evocatively written. I am glad you feel able to contribute in a positive way with the knitting now.

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  9. A very moving post Jacqui. The link to knitting is very poignant, and what a great way to raise both money and awareness for such a devastating illness.

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  10. I am so sorry your Mum had this horrible disease.

    I work with people with this disease every day of my working life and it is devasting, both for the suffer and the relatives. There is a lot of help, support, money and advice for cancer sufferers and their families (I know this disease is hard as my husband had it a year ago) but there is no where near the help for dementia sufferers. Anything that keeps this disease in the forefront of everyone's minds has to be a good thing - I will be knitting squares.

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    1. I agree so much MAC.. Cancer is a terrible disease, which so often affects younger people. Dementia is seen as an old person's illness - in fact, very often not an disease at all - and who wants to think about it? I wonder if there is a fear element that makes people want to sideline it. And yet, for those suffering, and their families, it is so devastating.
      bless you for contributing xxx

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  11. dearest jacqi, i'm hoping to get to this place too, and i know i will, but it's just been five months since i lost my mom to this disease. i think so far i've done a good job of not dealing with it. i would send some squares to you though, if you think that would be a good idea. bless your heart for writing this. i'm so sorry for your loss. thank you for giving me hope.
    xxx lori

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    1. Lori - I thought of you so much when I was writing this, and I can guess where you are with this. When you are ready, you will, but right now, I think, you need to care for yourself after your own loss. Sending much love. xxx

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  12. My dear jacqui what a wonderful way to remember you mom. I lost my grandmother [the one I am so like] to this disease; like cancer it touches so many lives. Thank you for sharing this part of your life. It's evening here now, but tomorrow I will be making a phone call to see what I can do here.
    Much love.

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  13. What a lovely way to honour and remember all of the family and friends we lose--twice--to this devastating disease. This transplanted Scot and her girls will be sending squares from Chicago. Thanks so much for bringing this to our attention, Jacqui.

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    1. Oh Tracy - thank you so - so much. yes we lose them twice -or many times, as different bits of the person go all the time. it is a long and painful process. Love to you and your girls xxx

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  14. I only remember how confused I was as a teenager while my Grandfather became somebody entirely different from the funny and affectionate person I knew. Why did he say things so entirely out of character, and why did he say them to me, and why didn't he always know who I was. At 13, that was so confusing. Wonderful post. I intend to make some squares and am so glad I'll be back in Scotland in time to send them.

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    1. THank you LM - so nice to think you will be back here soon. xx

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  15. What a wonderful project. My grandad was recently diagnosed with alzheimers, so it's a cause close to my heart...

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    1. Thank you GAE - sending you all love and strength as you and your family deal with this. xx

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  16. My husband lost his grandfather to Alzheimers. It was so very hard on him and those who loved the man. It is true that your loved one can return via your memories. I am glad you have so many good ones to remember. I can make a square for you to include as well. Let me know if that makes sense.

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    1. Pm - thank you. I hope your memories of your dear Grandfather are good ones. I will email my adress if you like. Much love xxx

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  17. Dementia is a journey of incremental loss that leads to an inevitable end. And what you and the other knitters are doing is knitting - by increments - awareness, and support, and a tribute to those affected. A giant, poignant, blanket of a hug. Beautiful.

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    1. WSW - that is what I like about this project - the idea of a mosaic of little pieces - representing all the bits of all the people that are lost to this disease. it will not stop or cure dementia, but it feels like a positive symbolic thing to do. xxx

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    2. Hi WSW - just to say that the charity used your lovely comment on their web page xx

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  18. Dear Jacqui,
    I was thinking about this just today as I vacuumed while my dear mom took her afternoon nap...thinking about whether I had really, finally accepted her Alzheimers or whether I was just stuffing all the worst feelings lately. I don't have an answer...tho' I am hoping I am in a season of acceptance. It is certainly easier than the seasons when I am not. But I do respect your protecting yourself when you need to...you had enough years when you couldn't turn away from it. I think part of my peace right now is that I tend to shut out anything about Alz. beyond what I need to be a loving caregiver right now.

    But I am glad to think about you and all the others knitting those squares and hope we will hear more about them...especially when they are sewn together. In the meanwhile, tho' I won't be knitting, I will be trying to slow my own mom's unraveling and keep myself from doing the same.

    xo

    Lesley

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    1. Oh lesely - you too were in my heart as i wrote this. I hope it didn't upset you at all. As we were caring for my Mum, although we were going through the motions, there was so much anger and resentment at this disease. I so recognise what you say about seasons of acceptance. It was far easier when I could find that way of thinking.
      My husband said he was surprised i didn't explore dementia through other blogs or forums at the time, but i just didn't want to know anything about it - it was enough that it was in our lives.
      Sending gentle hugs to you and your Mom xxx

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  19. Jacqui, thank you for your thoughtful and compassionate post. You've written beautifully about a very difficult experience. I love the metaphor of knitting, and your account of re-membering your mother. When my mother died (cancer) I found knitting to be so soothing in my grief...I thought of it in terms of knitting back together my own heart, but yes, there is an aspect of knitting together the memories of our loved one, remembering their true, integrated selves before they were unraveled by illness. I've spent some time working as a hospice nurse, and though it is always difficult to lose a loved one, I felt that dementia was especially heart-wrenching for families. Blessings on you, and thank you again for sharing!

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    1. Thank you Annie - such kind and comforting words. I am so sorry about your Mother. Losing someone close is devasating no matter how they go. Sending love and blessings. xxx

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  20. what a beautiful post, Jacqui. thanks for being willing to share your heart and your story. knitting the squares and your outlook on what the squares represent is very touching. my wish for you is that there will be much healing in the knitting. xx

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    1. JTS - thank you for those kind words and wishes. xxx

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  21. Thank you all so much for your lovely comments. i so appreciated them all. xxx

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  22. It must be hard for you and your family to think about the disease your poor mother suffered from but I'm glad you are starting to come through it Jacqui. Great that you are helping this charity.

    What a wonderful idea, all those squares, all those people contributing little pieces to something bigger. Brilliant! :-) x

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  23. My close friend has just moved her parents in to a newly built extension on their house because her Mum has dementia and her Dad cant cope alone. I knew her Mum well when we were teenagers and the feisty little hard working woman she was has all but gone, what a terribly cruel condition it is.
    I am so glad you have moved beyond the end of your Mum's time here and re-living the good times. I am managing to do that with my Dad too now and I just don't allow the last days a place in my memories anymore :)
    V
    xxx

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  24. What a great project Jacqui, it's so good to be able to contribute to something you believe in. Your squares are lovely too - I imagine you will have quite a stack by the time you send them in xxx

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  25. Anonymous23/2/12 12:15

    Such a moving post and such a wonderful project to take part in Jacqui. xxx

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  26. Hugs to you, dear Jacqui. I think this is a wonderful cause to be knitting for. The idea of a large blanket with a square for each person is amazing. My grandmother was diagnosed with dementia, but she passed away last year around this time from a stroke.

    xx

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  27. I can't begin to tell you how much I love the sentiments expressed in this post; Alzehimer's as 'unraveling'. It's such a perfect description and image of this horrible disease. I lost my Poppie to it a few years back and my dear aunt is in it's midst now. What a wonderful knitting project to acknowlege all those affected by this disease.

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  28. I found you through Ginny's Yarn along. Yes, the words dementia in your post title grabbed me like swinging octopus arms! My mother is still "with" me, but her Alzheimers has been with us all for many years. She is now completely bedridden and living in my home. I currently grasp hard to hold on to any bits of what she was, it was good reading your story of the returned good memories.

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    1. Oh Cathy - I know so well that holding on as hard as you can. Soon after Mum's diagnosis, a friend, whose mother was in the advanced stages of the disease told me to make the most of her as possible before she slipped out of reach. I think I probably did more with my mother in her last 5 years than I ever did, and I am glad I was able to make that time for her.
      I wish you every strength and blessing as you deal with this.
      xxx

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  29. My life has not been touched by this terrible disease, although I know many who have watched it wreak it's havoc on loved ones. I think it is my greatest fear of Old Age.
    Your post is poignant and beautifully written. I am sorry for your loss.
    I too would like to show support - I'll search for an email link.

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  30. Anonymous24/2/12 11:21

    What a beautiful post, Jacqui. As I write, my husband is at his mother's funeral. She didn't have Alzheimers, for which we are very grateful, but she was very poorly towards the end of her life and seemed very changed. I hope that the memories of her younger self, and of her true spirit, will similarly come through strongly for him and his brother and sisters.

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  31. Jean Armitage24/6/12 23:30

    Dear Jacqui
    I would like to say a huge thank you to everyone who got involved with our project and to you for helping us spread the word.
    I am writing this with tears in my eyes, what beautiful posts from yourself and your contributers....I am delighted to tell you all that we not only beat the world record but also surpassed our own target with an amazing 914 squared metres of hand knitted blanket. there were tears yesterday as we heard many stories of what each square meant to those who had contributed. Many squares had been knitted by people living with dementia, their families & friends.
    It encourages me that people around the world have got behind our project though it also shows me the devastation dementia causes. We will be posting photos from the blanket on our web site and facebook page. www.alzscot.org
    Kindest Regards
    Jean Armitage, Post Diagnostic Services Manager, Alzheimer Scotland

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    1. Oh Jean - thank you. I am so glad you came to tell us this. I will link to the pages when they are up. Many congratulations on the world record, and the awareness raised. x

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  32. The finished blanket can be seen here
    http://dementiascotland.org/news/2012/worlds-largest-hand-knitted-blanket-brings-knitters-together-across-the-globe/
    Thank you all for your support
    xx

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