Today I am delighted and honoured to post the third “in my shoes” blog from the lovely Suzy Webster. My nickname for her is Suzy Q. She tweets as @suzysopenheart.
A quiet heart and an open heart indeed.
We began with a post in the early part of the series and more recently Suzy shared her story of moving house so that three generations of her family could live together and support her Mum – and indeed her Dad! – living with dementia.
This new set of tweets last week I think help put Suzy’s story in context.
Andrea Sutcliffe summed it up beautifully.
I feel like framing this set of tweets and sticking them on the wall, (like my pal @nurse_w_glasses does with her fab 20 commandments for Mental Health) and not taking them down until this nonsense service-led approach makes way for real family orientated, human support. Making It Real indeed.
Indeed, Suzy and her family are not “asking for the world”.
Why is it people who are asking for things that really fit with their lives are made to feel that they are ‘wacky’. Martin Routledge has written a very powerful blog about his Mum’s end of life care that chimes with this dilemma. Things need to change and quickly. This is NOT all about money; it is about shaping a different community-based way of approaching health and social care support that so many of us crave.
I hope this introduction hasn’t detracted from Suzy’s story. It speaks for itself.
Moving in with Mum – Part 2.
I received so many lovely comments from my last Whose Shoes post I felt it only fair to get on with part 2! Thank you all for reading.
Yesterday I asked Mum whether she was happy in her new home, she said “It will take some time to get used to it but put it this way, I wouldn’t want to be anywhere else.” Nearly a year into living in the new house Mum is still trying to find a way of feeling settled; perhaps that feeling will never come. The door signs, the arrangement of the kitchen cupboards, photographs, personal items and the furniture remain in the same position to help her feel like this house is where she is meant to be. She sleeps well and doesn’t seem to be searching for anyone or anything. I see that as a good sign.
In March my husband, two children and I moved into the house. My Mums calendar is seen as part of our family. We write everything on there. It is the first thing Mum consults when she comes downstairs in the morning, it tells her the day, date, appointments and plans. Mum was able to count down the days to our move with our children by ticking them off the calendar.
We did our best to prepare her for another big change. Our part of the house sits behind an adjoining door; Mum never seems to know what is behind it. For Mum out of sight is really out of mind. We have marked a route from their lounge to ours with familiar objects for Mum to follow. We have all been briefed not to move the objects and for now they work well, we often hear Mum say “There’s the chicken” and she will automatically turn right. For a while she thought if she sat in our lounge in the new house she must be at our old house and she would ask Dad to get the car ready to take them home. This seems to have passed now and recently we enjoyed a girlie night on the settee tucked under a duvet watching Britain’s Got Talent and eating ice cream. Moments like these are treasured. Mum remains a Grandma, she has a role and that gives her a sense of purpose and worth. As a family we have our own space and privacy. Our children know that they must always knock the adjoining door and wait for a response before entering (They have never yet been refused entry and I notice when they return they always have a bit of chocolate around their mouths and always just before teatime!)
My 7 year old asked me recently if Grandma will get better, I told her the truth. She is learning from an early age what it means to really care for someone. She has a deep sense of care and is acutely aware of the human condition, if only this was recognised in our educational system as much as academic ability. As a family, we are experiencing dementia and loss EVERYDAY. I tweeted recently with the question ‘Where is our Macmillan nurse equivalent?’ It can be lonely juggling, nurturing and responding to the needs of a family of six but we work well together. We would love to have access to family respite, an opportunity for a family holiday that is supported so we can all have a break but most importantly spend time together. We want Mum to be with us as long as possible but are realising we need outside support to enable this.
Mum and Dad’s world has opened up again, they were so isolated before as friends dropped away. Dad has joined a snooker club, Mum attends Singing for the Brain and they both attend an Alzheimer’s Society support group. Dad is brilliant at home improvements so we have an onsite handy-man, Mum helps with homework and we share many experiences of family life that through good times, hard times and all those in the middle times we are there for each other!
And, to add insult to injury … (Suzy is a champion of the fab Butterfly scheme) :