No signal

In last night’s disturbing dream my phone was useless and I couldn’t communicate. Partner said: “Good premise for a crime novel.” I don’t want to write a crime novel, but as always a title came straight to mind. No signal covers 1) my blog hiatus 2) the rural disadvantage of partner’s house 3) physical and metaphorical aspects of lockdown, and 4) the event that stopped me blogging much and writing at all.

In January a dear relation, not elderly, had a stroke clinicians labelled catastrophic, overnight losing independence and professional, social and cultural involvement to massive brain damage, semi paralysis, and total speech loss. For weeks she had “no signal”. Now she smiles, shrugs, raises her eyebrows, taps one hand, and cries.

For two months we could barely signal back. Covid allowed only three hospital visits, justified to management as therapeutic. Discharge was to an understaffed, pack-em-in uncare home with photos of forty Covid victims prominent in the foyer. At my first “visit”, I balanced on a steep grass bank and gurned through a closed double-glazed window, probably terrifying a confused, pain-racked, depressed, non-verbal Charlotte. After two weeks, strictly timed fifteen-minute visits were allowed, when she cried and cried. I have told the regulating authorities…

Finding urgent, pleasanter, safer care with no previous knowledge of the sector, was difficult. It’s a buyer’s market, nursing homes having lost so many residents, but judging suitability when you can’t go inside to witness staff and residents interact is tricky. There’s the selling agent’s word for it, pre-Covid inspection reports and glossy brochures with more chintz than people. You can tell a lot from the smell, mutters a district nurse friend. In normal times.

Nor could we access the typically £82000 pa fees of a good home because Charlotte hadn’t appointed Lasting Power of Attorney (have YOU done this? It costs £80/£160 online and takes just a few weeks to come through). She couldn’t agree to LPA because she’d lost mental capacity so our only avenue was the Court of Protection. Even with an excellent solicitor this takes seven months and £4000+. So whatever your age please apply for LPA today, for your loved ones’ sakes! Without it, we can’t deal with Charlotte’s bank, maintain her house, access her phone or computer… or shut the bailiffs up. But hooray for the social worker who organised interim payment of home fees!

Identifying, informing, updating friends, navigating legal, financial and medical protocols takes hours. Though still without CoP status, a contradiction requires me to advocate for Charlotte as her Deprivation of Liberty Safeguard representative. Therein lies a moral minefield.

Amid the pandemic, all NHS staff dealt professionally and kindly with Charlotte, as far as we know. Yet it’s compartmentalised and random. Some individuals communicate with next-of-kin; others won’t until CoP is formalised. Doctors spent two days saving Charlotte’s life. Then she became the therapists’ responsibility. The excellent hospital team discharged her to the community team who visit rarely and tell me nothing. Emergency hospital admissions for IV treatment open communication black holes. True to form, our Etonian government guidelines for care homes are delayed, illogical and impractical. So Charlotte, who can currently be visited immediately during her frequent hospital stays, suffers ten lonely days of self-isolation whenever she returns “home” (which is a good and caring place, but, obviously, not the lovely house she can no longer access). Each time, the private speech therapy I’ve sourced is postponed and even on her birthday she couldn’t leave her room.

This prolonged whinge is my entirely selfish point of view. Writing from Charlotte’s would mean exploring the wrenching experience of a loved one more deeply than I can bear – it’s an imagined state of mind to be visited only in the small hours or small, safe stabs of trying-to-understand. So I divert my thoughts to all that must be done. To write her POV would also mean experimental language even more demanding than McGregor’s (below). There’d be pages of wailing pain, of being bypassed and misunderstood, occasional enjoyment of tastes (dysphagia permitting), embarrassment, exhaustion, depression – very common post stroke, frustration, boredom and loneliness and where’s the happy ending? Disabled readers might cancel it and they’d probably be right.

But this is a books and writing blog! Poignantly, my last chat with Charlotte was about a book review here. Stroke is common in life, less so in literature. The only one more physically serious than hers that I’ve read of is in The Diving Bell and the Butterfly, also filmed. Dominique Bauby, in his forties, was riding a professional wave as editor-in-chief of Elle magazine when a stroke paralysed him almost completely. He could only dictate this memoir, letter by letter, by flicking his left eyelid. I could quote the whole thing… For obvious reasons it isn’t long, but it’s beautifully written/translated and extraordinary.

Jill Bolte Taylor’s My Stroke of Insight is inspiring – see her TED talks on YouTube. This American brain scientist had a major stroke aged 37 and viewed her eight-year recovery as a unique research opportunity. She explains the medical jargon and her own psychology and cognition with clarity, humour and joie de vivre. A helpful checklist of carers’ dos and don’ts highlights the devastating damage stroke can cause. “Recovery was a decision I had to make a million times a day. Was I willing to put forth the effort to try?” If this exceptionally positive and informed young woman found it so exhausting, what hope is there for others? But at least our NHS, beleaguered though it may be, means a stroke victim needn’t try to remember which hospital her health insurance covers, mid-stroke.

In the UK the Stroke Association have cheap communications aids for recovering stroke victims, though little for Charlotte’s more severe condition. Bolte Taylor happily relearned from children’s books; others may feel patronised which is where the SA booklets come in.

I’ve reviewed Jon McGregor’s precise and moving writing before. In a happy coincidence for me, his latest novel, Lean Fall Stand provides the reassurance of finding my experience reflected in good fiction. I won’t name the stricken character as he’s introduced in a different role, the stroke a deus ex machina for the reader as well. Quoting McGregor’s language play would need more context than my space permits, but, never obscure, he has surprising fun with a victims’ conversation group, light relief (not parody) after the grimmer initial weeks. There’s sympathy for his carer’s reaction too, the weary, questioning love/unlove of a mostly absentee partner when sudden responsibility strikes hard at her own life.

Which is more or less where I started this post. As I write, the stroke related emails drift in… I hope that explains the recent absence of signals from me. Take care all.  

©Jessica Norrie 2021