In the shoes of … Suzy Webster | Expert by experience – Moving in with Mum – Part 1

Last year I posted a story by Suzy Webster. It was a very moving story about her  grandmother’s journey with dementia and the improvements in understanding and attitudes Suzy had witnessed over recent years.  Suzy’s own Mum had recently been diagnosed with dementia and Suzy impressed all our readers with the way she was teaching her young children valuable lessons and focusing on the person within as they came to terms with changing roles and relationships.

I remember how Andrea Sutcliffe, who had recently taken over as CEO of the Social Care Institute for Excellence (SCIE),  picked up on it, on the day that it was posted. Andrea used Suzy’s story as the starting point for “making it real” at the Away Day she was running with colleagues. That told me a lot of things about Andrea and her refreshing approach to leadership.

Andrea SCIE

A lot has happened in the past twelve months. I have got to know Suzy and now regard her as a friend; I am thrilled that she finds emotional and practical support amongst our #dementiachallengers group of which Suzy is a core member, as well as being a skilled dementia trainer.

Today, in the first of a two-part series, Suzy continues the story: an emotional journey shared with love and compassion…

Moving in with Mum

PART ONE

We are a family of six who live with dementia. I am a married Mum of two children aged seven and four years. My Mum is 66yrs and Dad 68yrs; he is her full time carer. We all live together in a house designed for dual living.

Just over a year ago we made the decision to move in together. Dad was exhausted and I had begun travelling over the border from South Wales to Somerset more to help care for Mum. We all knew this could not be a long term arrangement.

I always say, the thing with a dementia diagnosis is that you can make plans. With a dementia diagnosis you live without hope. We are not going to see Mum get better, we don’t have the hope that the next course of treatment will work, Mum will not have a period of recovery and although this sounds negative we choose to use this knowledge positively to plan our future as a family.

We were overwhelmed to find a house that was perfect for us and apart from the usual ups and downs of house buying we made the purchase by putting all our money together and embarking on a mortgage. Mum and Dad moved in first in July 2012. Our estate agent went on a crash course in dementia care during this time and proved to be very supportive.

Door plateThe move was difficult for Mum. Although she had viewed the house on 4-5 occasions, she had no memory of it on the day of the move. I bought small chalk boards to label the doors and asked Mum continuously to advise me where to place objects such as kitchen equipment. This had to be led by Mum to enable her to find items in places that made sense to her.

Bedside cabinet
For Mum’s more personal items I used see through boxes so she could easily access her belongings. I tried as much as possible to replicate their home in Somerset. For example, I took a photo of her bedside cabinet so everything could be placed back in its rightful place and I placed her lounge chair in the position it had been before (Mum likes to see out of the window and report if anyone is coming to the door!)

Of course this was the practical aspects of the move; emotionally it was the hardest few days we have all shared. Taking a person with memory impairment away from all that is familiar to them is distressing; this goes for hospital stays, respite care and moving house. I had never seen Mum so vulnerable and she wanted to know when she was going home. Giving constant reassurance was sometimes difficult during moving furniture and emptying boxes.

I don’t find it helpful to talk about the Mum I have lost and am reluctant to begin a conscious grieving process when she is sat right in front of me; I work hard to live in the moment. I appreciate who she is and the many things she offers us as a valued person in our family. Sometimes I just want her back. There are times I need my Mum.

When dementia comes into your family you have to reach outwards to those you can trust, those who REALLY listen and those who offer you respite time. Without great support from friends and my twitter colleagues’ #dementiachallengers I really don’t know how we would have got through this move.

Part Two of ‘Moving in with Mum’ coming soon…………….

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
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8 Responses to In the shoes of … Suzy Webster | Expert by experience – Moving in with Mum – Part 1

  1. Beautiful, Suzy Webster and beautiful Mum.

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  2. Richard H J H FitzPatrick says:

    A very moving life changing event for the whole family.

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  3. Maureen Grove says:

    Thank you for sharing, Suzy (and Gill for raising this story). I relate to so much of this, our Mum was still ‘Mum’ and we needed her just as she needed us – I could never understand why people would assume that we had ‘lost’ her when she was still very much in our midst…..enjoy your precious time and keep making those moments count.

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    • Thank you Maureen for your lovely comments – very true. I know the sadness of losing my Dad and both my ‘in-laws’ and share your advice to make the most of those we have left and take nothing for granted. Part 2 of Suzy’s moving story (in all respects) coming very soon …Monday 24 June.

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  4. Helen says:

    I lost my Mum just a few weeks ago and a lot of people were surprised I was mourning when ‘you lost her a year ago to dementia’. This has been very hurtful and made losing her more difficult.

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  5. Marian Naidoo says:

    Thank you Suzy and Gill – really looking forward to your next instalment . We will all learn so much from your willingness to live in the moment and to share this powerful narrative. Love to you all.
    Marian Naidoo

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    • Thank you Marian. We are indeed all inspired by Suzy’s willingness to live in the moment and to share her family’s journey. Beautifully written and engaging, it is providing a powerful narrative on the ‘real world’ of caring for someone with dementia. Sadly it is proving to be a tricky path – not in terms of how the family is coping (which is inspirational) but the lack of imagination in the support they are receiving. Part 2 of Suzy’s blog will be published on Monday (24 June).

      And, as an aside, REALLY looking forward to meeting you at the European Alzheimers conference in Malta, Marian. I am delighted to be co-presenting “Whose Shoes? – Making It Real for people living with dementia” with the lovely Larry Gardiner who has dementia himself and has just written a really powerful “in my shoes” guest blog.

      The ‘powers that be’ need to listen to Suzy and Larry – and act – and then we would be a long way towards creating truly dementia-friendly communities! Gill x

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  6. Pingback: In the shoes of … Suzy Webster | Expert by experience – Moving in with Mum – Part 2 | Whose Shoes?

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