'Till Death' by Julia Jones


When Francis and I got married last year we were careful to make no promises, exchange no rings. It shouldn’t have made any difference, except legally. Yet it did. We fell in love 27 years ago; have been together and happy ever since. We have children – two as a couple and three from my previous (failed) marriage. Our wedding was adorned by my grandchildren, our children, brothers & their families – and also by Francis’s mother, who was living with Parkinson’s dementia and has since died. (I am so glad that this was still in the period when families were welcome to keep a proper vigil with the dying person, not, as is sometimes proposed, pop in fo 15 minutes to 'say goodbye'. Our collective care of Patricia in hospital gave her an easier death, and also supported the nurses. But that's not my subject here.) 

Why didn’t we marry before? For a long while it had felt important to me that if either of us wished to leave the relationship we should be free to do so – though I knew I never would (and guessed he wouldn’t either). Now the ‘Till Death’ pledge has removed that option. We're in this for ever. It doesn’t matter that we didn’t spell it out, that’s what getting married meant. For me the status change has made the most profound, unexpected difference as it appears to have removed a last little bit of holding back that I didn’t even know was there. This is for the rest of our lives. It feels wonderful.

Patricia Wheen & Anna Ndbele
Pre-wedding, when I was trying to justify my volte-face to my nearest and dearest, I told them that I was 65, an OAP and I didn’t want to be explaining Francis's and my relationship in the dementia ward. 

Unfortunately it seems that approach may not be going to work. Of the many things that have shocked me since March 23rd lockdown, it is the complete official silence on the enormity of ‘banning’ husbands and wives from seeing each other if one of them is in hospital, mental hospital or lives in a care home. It’s as if the state, which usually tends to bang on about the importance of the marriage bond, hasn’t actually noticed what it’s done: ‘Whom God has joined together, let no man put asunder!’ Isn’t that how it goes?
There is no sub-clause in the marriage contract to state that if one of you is at a different address (such as a care home or hospital) because of illness, that your commitment to one another is void. It’s only Death that ends it.

So many people have promised – whether explicitly or in their hearts – ‘to love, honour and cherish one another in sickness and in health’.  Now, in lockdown, they are not ‘allowed’. A few spouses were savvy enough to move in quickly if the other was in residential care: a few residential care providers were wise enough to welcome them. Some spouses and partners tried to get the other one ‘out’ for the duration. But I’ve not heard they had any success. Usually lawyers were briefed and learned judges opined (from the depths of their ignorance) that the couple couldn’t cope. Even when adult children were offering hands-on support, it was rare the family were deemed capable. No matter that the UN Human Rights commission and the World Health Organisation published recommendations in March for immediate de-institutionalisation in the event of a pandemic.

This clanging down of the portcullis has made fools of care home supporters (like me) who have been insisting that moving into residential care when needs from illness (usually dementia) grow too great to be met at home, should be no more than a change of address. It’s not like the c19th, I used to say, when men and women who were forced into the workhouse, knew they were saying their essential goodbye and would only see one another again ‘by application to the master’ (Ronald Blythe The View in Winter).  These days I wrote confidently, c21st care home staff tell their residents. ‘You don‘t live in our home, we work in yours (Julia Jones Honoured Guests). 

But not when Creepy Covid comes smearing its contagion on the doorknob. In March this year husbands, wives and partners, devoted adult children and all the ‘specials’ suddenly found themselves branded ‘non-essential’ and excluded from these 'homes' in the cause of infection-control. I could not believe that this would happen yet it has. At John's Campaign Nicci Gerrard and I find our in-boxes filled with heart-rending messages from long-term lovers  bewildered at their sudden exclusion. A daughter wrote of her mother 'I feel I have taken her to nursery school and not gone back to pick her up.' Initially this was for three weeks ‘to keep them safe’ – perhaps that would be okay? families hoped. Now the separation is nearing three months and the people left inside are beginning to die. Not only of Covid-19 but of dementia itself.

A wise GP wrote recently ‘I recall working as an HCA in a care home many years ago. Sometimes when a resident lost a spouse they would soon die after of ‘a broken heart’ or ‘loneliness’ we would say.’ And this is exactly what has been happening. People living with dementia in care homes have been giving up, refusing to eat or drink, losing weight and dying.  Yes, Creepy Covid has also been taking its toll – so the exclusion campaign has not even worked. (And many who have contracted the illness have recovered.  It is not the inescapale death sent4nce that is dementia.) But those who have died in care homes ‘of a broken heart’ have died before their time. The people they love (and who love them) are NOT dead and have NOT abandoned them, they have been shut out – and they are not yet quite sufficiently angry to storm the gates. 

Perhaps families themselves are only just realising how much they matter to each other?  Beginning to feel that family love is a tangible force? The brain is an extraordinary ‘plastic’ and developing organism. Throughout its existence each unique brain is moulding itself in response to its perceptions and experiences – it’s forming and losing synapses. It remains the same unique brain even when it’s being attacked by dementia. If you have been living together and loving each other – adult or child – their brains and yours will have imprinted and patterned one another. If you keep coming, keep visiting – even at those new care home or hospital addresses – perhaps you are keeping those connections alive. Stop (or Be officially Stopped) and the loss is palpable.

recent writing
Those husbands, wives, partners, children, dearest friends who are loved by people with dementia are their essential sources of strength. A friend who is a Director of Nursing in Scotland said in a recent podcast ‘For some of our patients who are living with dementia, their families are like their drugs or their therapies – and we’d never deny our patients medication, would we?’ In the new normal the loving relatives of people with dementia must be seen as part of the solution, supporting their resilience – not as potential virus-importing dangers. At least that what I’ll hope when my time comes -- because I'm so deeply content in my wifely state (even if my bones ache and my mind sometimes gets muddled) that I don't want it to come too soon.


 Nicci Gerrard & I wrote an Open Letter for families to use if they feel 
as we do and fear their voices are not heard. 






Comments

Susan Price said…
As always, Julia, you say it all. There's nothing I can add -- but I can (and do) wish you and your family all the best. (No need to wish you strength and courage: you have them already.)
Unknown said…
Beautifully expressed as always, Julia. A friend has been supporting her stroke struck husband for over a year. She has visited him daily to give speech therapy, singing and much more. They are both successful opera singers. As Covid appeared she was barred. The sight of her communicating through the window has been heartbreaking. That he was recently admitted to hospital and was tabled for surgery does not seem like a coincidence. A halt in his recovery that may not be reparable.
Sandra Horn said…
Oh, Julia - like Susan, there's nothing I can add to this heartbreaking account, except that it should be published widely and the attention of policy makers drawn to it. It cannot be beyond the wit of people to devise a more humane solution to prevent infection spread.
Kathleen Jones said…
Such a beautiful post, Julia, but heartbreaking. It should never have been allowed to happen. And I loved your comments on marriage. I could never bring myself to do it again!
Jan Needle said…
My unofficial ma in law died in her wonderful care home immediately before the lockdown struck, In all the sadness, that was more or less the only thing we all came to realise as a blessing, We've been in touch with the care home since. But there is little comfort we could offer. Thanks Jul xxx
Bill Kirton said…
I can only offer the sympathy and good wishes already voiced by others, Julia. There is an 'official' callousness along with all this that appalls, but thank God there's still so much love and humanity among the rest of us.
Lydia Bennet said…
So glad you are so happy married to your lovely man, but it's terrible that people are cut off from literally life-preserving human contact. This govt is prioritising opening betting shops, pubs, and cafes, while contact between close family members is still off the table, unless you are Dominic Cummings. It makes me furious. While my mother was dying of AD, she only spent the last six weeks of her life in a care home, and we visited every day, spending her final days with her throughout the days, I can't imagine being barred from her and my heart goes out to anyone in this position. (will also comment on your fb post)
julia jones said…
Thank you all (and yes Kathleen, that was EXACTLY what I said for so long - BUT...!) It really is wrong. If staff are able to go in and out, with all due precautions, then it should be possible for one special person to follow the same prcedures -- and potentially they could be such a help. Nicci G devised a great Johns Campaign mantra which is Carers are not Visitors. Some people get the point, in normal times, but not so many now. (Working on it!)
Umberto Tosi said…
You've blended a heartwarming, humorous, unconventional love story with a heart-wrenching plea against the callousness of an arbitrary ageist care system making a pandemic worse for those of us most vulnerable. Here! Here! And kudos!
It is heart breaking. My mother had a stroke over a year ago and is in a nursing home (still unable to speak or do anything for herself). Dad used to visit every day. Since covid he's been banned and only allowed to see her through the window occasionally, which makes him very upset. He cries on the phone to me, and I haven't seen my Mum since March. She's tested covid positive, so I feel as if I've lost both my mum and dad. They will never recover from this. I may never recover.
Rituparna Roy said…

Hi Julia, yours is such a unique story – congratulations on marrying the man you fell in love with 27 years ago! Wow! May you continue to be content in your wifely state for a long, long time…!

It’s so traumatic to be banned from seeing your loved ones. Covid-19 is not likely to go any time soon… I just hope a more humane policy is devised soon…

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