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.
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
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.
The 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.
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…………….