Glossy positive bit
My mum has Dementia. It has stopped her memory clock to five past years ago, when we moved her to Wales, from Suffolk. Her internal compass fluctuates between rural Suffolk, or Scotland, where she was born. Luckily, for her and her family, mum’s view of her world has, for most of her life, been in the moment and this gives her a sense of sanity, enjoying the perceived (Scottish/Suffolk/Welsh delete as appropriate) hills from her armchair, and she also has an understanding that I’m close-by, which provides a feeling of safety for both of us.
People have a set view of Dementia, but for the few that are ‘fortunate’ to have a slow decline, the worst (for my mum) is still to come. Interestingly, the disease has not diminished her thirst for knowledge: it is her body that annoyingly interrupts her encyclopaedic appetite. She’s locked into a perpetual 20 minute cycle where every adventure in a book, or slither of incite from National Geographic, is interrupted by loo breaks, but every reread paragraph contains surprises. Her love for reading is her constant.
Logically then, to counter these interruptions, mum doesn’t want to drink liquids because she’ll need the loo, which takes her away from her precious pages. This is a point, where if nobody monitored her, mum’s health would decline, rapidly. We jovially lock horns on this issue and I do not give way as side effects from taking antibiotics, for previous infections, were…I can’t describe them. So, my role- at certain points in each visit- is “mothering hin” to encourage her to drink and she rolls her eyes exaggeratedly, while slurping loudly, eyeballing me to ensure I see the funny side of her every move. It’s like an over-acted scene in a play that uses wrestling actors facing-off against one another, a fight of wills, which I win. We giggle, bow to each other, kiss and I leave the stage.
Realistic bit
But, of course, I don’t leave the stage because I’m her daughter. I have sometimes felt like The Wizard of Oz fiddling about with the controls of my mum’s life, levering in my own life as well as organising her doctors’, opticians and dentist appointments and of course the hospital visits and emergency care, planning systems that will keep her safe with the help of her amazing carers, who also want mum to maintain her independence.
I know others aren’t so lucky; mum has access to really inspiring carers, who sit and chat with her. It means that I can come out from behind the curtain and just drop in for a cuppa, like a daughter.
Even though my situation is better now, in the past I have got the impression that unpaid carers are forgotten about and shouldn’t complain. We shouldn’t say anything about the lack of time we have for ourselves, and definitely shouldn’t mention the wearing battles that many have experienced with doctors and the social care systems to get referrals or a package of support: for me that was the hardest part, draining my energy and the tiniest precious time I’d allocated for myself, when I could have reserved that for my reserve.
But I don’t want unpaid carers to be quiet. I want us to share our stories. I think the louder we shout, the more people will see these experiences.
Please email me your stories to [email protected]