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

29 thoughts on “No signal

  1. How absolutely frightening for Charlotte. Thanks for sharing this painful story with us Jessica, and the book recommends. As someone who recently lost her husband in shocking haste, my heart pulls for Charlotte. Thanks for the book recommends I will add to my list, but far from ready to read right now. ❤

    Liked by 1 person

    1. I did think of you as I was deciding whether to post about this, and hope I am not causing you more distress. It seems haste and hesitation are equally hard to experience. I did finally post as I think, on balance, it’s better if people have a glimpse of these things and know how the land lies (the cost and minefield of social care in the UK is a closely guarded secret until you need it and preparation is key). Hope you are finding your way and thank you for taking the time to comment. Hugs.

      Liked by 1 person

      1. Thank you Jessica for thinking of me. And I do agree, it’s best to share the wealth of information so word gets out there. And certainly, I’m far from being the only one in my situation. Thank you for sharing this painful but eye-opening piece ❤

        Liked by 1 person

  2. I can’t imagine just how frustrating, infuriating and upsetting this has been for you and for Charlotte. Well done for sticking with it and trying to untangle the bureacratic knots – some of which I fear might simply be there as a deterrent to prevent people getting access to the help they need.

    Liked by 1 person

    1. You make a good point. Those of us advocating for Charlotte are educated retired professionals skilled at using words to get results. Plus I have the TIME I’d normally use for writing. God help full time workers, especially if English isn’t their first language and/or they have no previous knowledge of the sector. Certainly resource and staff shortages are very real. Thank you!

      Liked by 1 person

      1. Hello Jessica! Thank you, here is all Okay, like in a small village in the ancient times can be. Lol Yes, our health and emergency care is a little bit different, as here the next hospital is 40 km away. Sometimes a higher being has to help us to survive. 😉 xx Michael

        Liked by 1 person

  3. So sad. And so easy to forget that all we rely on can be snatched away in a moment. Thanks for the useful information too. I hope you are looking after yourself and Charlotte starts to get some of her old self back.

    Liked by 1 person

  4. So heartbreaking. I hope Charlotte’s recovery goes well.
    I read an inspiring book by an expoliceman in the UK who had a stroke. His memoir, Never Say I Can’t is wonderful. His name is Philip Catshill.

    Liked by 1 person

  5. Reblogged this on Smorgasbord Blog Magazine and commented:
    A post that carries some important messages. Nobody likes to think that they will be too incapacitated to be able to manage their own affairs but if you are living alone you can take some relatively simple steps to ensure someone with your best interests at heart is going to speak for you and to handle your affairs. Jessica has been on a break doing just that and by sharing her experience and also some recommended reading on the subjec of strokes she offers us some insights and ‘to do’ processes. Head over to read..

    Liked by 1 person

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