Caring is often tough, but some people find some wonderful ways of rising to the unsolicited challenge of caring for a loved one in sometimes very trying circumstances. For Day 17 of our series of ‘walk in my shoes’ blogposts, looking at dementia from different perspectives, a friend of mine, who has chosen to remain anonymous, shares her moving story. We share her trials and tribulations; I can imagine that they had some great times together dressing up for the Jubilee celebrations. Her Mum is a lucky woman indeed…
I wear many pairs of shoes; there’s the “mum to two supportive, independent and loving children” pair – my favourites. There’s the pair known as “auntie to little nephew and nieces” – so joyful and rewarding. I also wear the “sister to siblings, including two with chronic conditions” – often challenging but also very loving, pair. My “daughter to M” shoes are now discarded, lying unworn and unseen at the back of the cupboard. Instead, I have a new pair “carer to M”.
I hate this pair, they were forced upon me, and I never take them off. No-one would choose to walk in these shoes. My mum has dementia; she lives with me, and her dementia rules our days and the long and painful nights when she weeps (and I do too) for a time now gone and a mother seldom glimpsed. Dementia is always in my life and in my mind, though every morning I awake with fresh optimism until I remember that these are the shoes I wear now.
Mum and I, me and mum; we’re a team. We live together, laugh and cry together, and struggle on as best we can. It’s a fine line as I also work, and have a lovely group of carers who look after her when I’m busy. She moved in with me 6 months ago and at times it’s like having a recalcitrant teenager in the house “I only eat pizza and jelly beans” or “I’m spending the day in bed because I hate you” are well known phrases in our home. One day last week she pulled up all the new carrots and radishes in the garden, and she recently startled the hairdresser by making a very inappropriate comment about the physical attributes of one of the young male staff.
It’s not all bad – we also have great fun. The dementia has meant mum is more relaxed and less inhibited and keen to try new things. We’ve played pool, gone bowling, finger painted, played games on the computer, held boxing tournaments on the Wii, and sung with a choir. We watch old films and dress like Joan Crawford, we paint our nails and eat chocolate. Once mum scared the postman by appearing at the door wearing a mud face pack – how she giggled!
I’ve learned to seize the moment, and to be creative and flexible. I’ve learned about dementia and try to raise awareness of this most cruel of conditions; I’m not afraid to challenge shop keepers, taxi drivers, social services and hospital departments. I’ve learned not to take life so seriously, to hug often and to frown less. Most of all, I’ve learned patience and tolerance.
Despite the challenges, we have a great time. We eat ice cream for breakfast and dance in the kitchen, we sing along to Doris Day and we jump in puddles. I see the world through new eyes and am thankful every single day that I’ve had the chance to enjoy my newly disinhibited and adventurous mum.
This morning she told me she loved me, as we snuggled up in her bed, listening to the birds chatter outside the window. I count my blessings.