Navigating unfamiliar waters: Dementia

Updated: Aug 29, 2019


Meandering Camel estuary, early morning.

I have a disturbing ability to find dark humour in the most stressful of situations - and I credit this to my British ancestry. It has been a blessing, and at times, deeply disturbing - both the ancestry and the humour, obviously. For example, deciding on a title for this piece forced my mind to think of watery metaphors - and initially I struggled to remember any. The irony of 'an early Dementia moment'? This is the current go-to panic embedded in the very real and turbulent possibility of truth.


I am currently in the UK with my mother, who is nearly 90 and has Dementia. It has worsened considerably since I was last here in October 2017. There is more frustration, more aggression, much more confusion and her memory is an ever expanding paper trail of coffee table post-its. Many of the things we managed to put in place then have never been used, or re-replaced with old appliances. A new kettle for example, safer, with a better energy rating has disappeared, and the 20 year old disintegrating green plastic kettle is back, with a seeming silent flick of the finger. However, it's dawned on me that she can see the water level through the windows of the old one, much more clearly than the shiny new one. An advantage of staying with her over a decent length of time, being as much immersed as anyone can be - in the bizarre, horrific reality of this disease - who doesn't actually have it. Yet.


With this immersion in her life comes overwhelm, sadness and deep understanding. And the profound possibility of losing myself in the process. The first week I was here I found myself reacting as opposed to responding to her illness, and seeing little but the writing on the wall for my own mental health. It was completely overwhelming. I kept busy (really busy), set up meetings with social workers, doctors, Specsavers and professionals to cut her neglected nails and wild hair. And went for long walks and bike rides in between. The weather was glorious, and Cornwall is spectacular under a blue and perfect sky. My mental health and self-care were managed with efficiency and discipline, believing that this would enable me to attempt to manage hers.


Her toenails had not been touched for 18 months, undoubtedly accounting for a great deal of pain and discomfort as she walked, largely dismissed as by observers as 'old age' or being nearly 20 years on from the last of two hip replacements. Not that the carers were neglectful or uncaring - they were anything but. However, they will do only what they are asked to do, and my mother is cut from the "I don't want to make a fuss, don't want to make a scene” cloth, and rinsed with second wave feminism interpreted as “I don't need any help, I'm fine". Of course it’s more complicated than this generalisation, and I’ll go more deeply along those early paths in a later blog.


The cupboards are once more full to bursting - more instant coffee than it's possible to drink in a lifetime, and certainly more chocolate and biscuits than even we could eat before, or after, their expiry dates. In 2017 we had gone from no in-house care to 7 days a week, and soon discovered it was too much too soon and the carers' visits were reduced to 3 times a week - "to check I'm alive" says my mum. That was quite successful for a while. There were some aggressive incidents with taxi drivers and carers, sometimes with neighbours and friends, but nothing too serious, and things appeared to have settled with an acceptance of dementia doing the speaking for her. Of course, I could hear a palpable loneliness in her voice, as she told me that she'd been down to the local community centre, or a coffee shop, or out for lunch with friends. She told me what I wanted to hear, and yes I was willing to let that go. Living on the other side of the planet from each other brings complications and guilt-ridden excuses, neither of which are productive. Acknowledge the shame, and release it - a mini mantra.


Time has been spent researching / reading articles and books on Dementia and Alzheimers. ‘Elizabeth is Missing’ by Emma Healey - the scariest read this year for how accurate it is, has also nourished and grown my compassion just when I thought I couldn't find any more. It's a narrative of the machinations of an 82 year old woman with Dementia (though the diagnoses is not actually revealed.) I’ve looked at statistics globally, here in the UK, and in New Zealand, where I officially live. My new absolute hero is Teepa Snow and here’s a little sample. A couple of UK resources for a quick overview can be found here and another 'What is Dementia?" here.


Making moments for myself as caregiver, even when there's a flight risk, has been essential. A cafe serving the best chai in UK so far, and a bowl of dhal to die for, Sprout in Newquay (https://sprouthealth.co.uk/) , becomes an escape for a couple of hours. I think “I'll bring mum here” but in reality, she really won't want to eat what they serve. It will in all likelihood confuse her, and there’s no parking close enough for easy accessibility, which in turn will mean launching tiny buoyancy aids on the turbulent seas of disruptive panic (mine or hers). Marvin Gaye brings a glorious moment of synchronicity as I start to write this blog, and the four women present find themselves singing ‘Sexual Healing’ - headphones flung aside and some impressive spontaneous chair dancing. Four very diverse souls (2 patrons, 2 behind the counter) in harmony, literally. More fully present than I’ve been able to manage in meditation for a day or two, and that’s ok.


Immersion is different. It can easily leave just the nostrils above the water line, the body working frantically to keep breathing below the surface. New jobs, new learning, even new Love can do this to us. And so can old patterns, old fears when triggered (and there are few more powerful forces to do this than a parent, let's be honest.) There we are, waving, not drowning - particularly on grey and stormy days.


One of the gifts of kinesiology is that there is no need for total immersion in whatever trauma we are trying to transform, and this is one of the reasons I love it. Lean in to trauma, sadness, depression, anger, resentment - acknowledge it, identify its ability to distract and trigger the mind and body. And then release it with thanks - if you can. If you can't this time, there will come a time when you can - I promise. My hope is that the memories which stay with me as I age will be of these tools, and indeed, that I remember to use them.


Many thanks for reading my ramblings - please feel free to share your thoughts, or leave a comment, I'd love to hear from you.


Much love ❤️

Trusty steed of selfcare


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