I Love You So Much

I caught a thought-provoking interview on Radio 4’s Today programme yesterday between Nola Leach and John Humphrys.  I missed the introduction so initially didn’t know the reason for it; all I heard was Nola Leach talking about her husband Tony who died a couple of years ago, having been diagnosed with Alzheimer’s disease in 2014.  

Nola acknowledged that Tony’s dementia was brutal but told Humphrys that though it might sound strange, when her husband was diagnosed the pair of them looked on it as “another adventure we were having together”.

Her words reminded me of the first time I met Suzy Webster.  At a London conference this Chepstow-based woman described how her parents had moved in with her and her young family so that they could all share her mum’s “dementia adventure together”.  It was simply put, yet behind the words lay endless reserves of love and courage.

And I also remember Jan Inman who, in the raw, grief-stricken days after her husband died of Lewy Body dementia, described caring for him as a privilege and told me that while nursing Ron in the last three months of his life she fell in love with him all over again.  I blogged about Jan here. 

What strikes me about these women is their extraordinary response to what many might see only in negative terms.  Nola told us that during her husband’s last years as well as experiencing terrible pain (when it all became too much she would run to the loo and sob – how well I remember doing just that when my mum succumbed to the condition), there were also some “incredibly precious” times.

She described how on one occasion, when it seemed as though Tony had completely lost his ability to communicate, he suddenly said, “I love you so much”.  In a wonderfully British way she apologised for the personal illustration – which, for me, only made the whole thing more touching.

During Tony’s last 36 hours, on their 49th wedding anniversary, he had an hour of lucidity.  They sang together and, somehow realising that he sounded funny, he started to giggle – “and there was a twinkle in his eye that was the twinkle that he always used to have”.  Again, just a few words had me welling up.  I knew just what Nola meant. 

In fact, as I later discovered, she was being interviewed ahead of tomorrow’s parliamentary debate on assisted dying.  Given her experiences, she was not in favour of changing the law, under which someone who helps a loved one to die is regarded as a criminal. 

It turned out that the previous day Humphrys had interviewed the widow of Geoff Whaley, a retired accountant who developed motor neurone disease and, before he died, wrote an open letter to MPs denouncing the current law for robbing him of control over his death. 

Ann Whaley accompanied her husband to the Dignitas clinic in Switzerland where he ended his own life – in so doing she broke the law, leaving herself liable to 14 years in prison. 

Ann made it quite clear during her interview with Humphrys that the decision to end Geoff’s life was entirely his.  She added that, ironically, Geoff was forced to die two or three months before he needed to because to use Dignitas he had to be capable of travelling and swallowing (those using the clinic must be able to take the lethal cocktail unaided). 

Quizzed by Humphrys as to how she felt about breaking the law Ann said though she felt some guilt she believed it wasn’t her that was wrong, but the law for taking away her husband’s control over his own end.   Ann’s view of current legislation is therefore at odds with that of Nola Leach.

But this blog isn’t about the rights and wrongs of assisted dying – a debate so nuanced, personal, complex and controversial that even I would fear to wade in – but about human connections.  As with Nola, the overriding emotion governing Ann’s actions and her beliefs was a deep love for her husband. 

“I have no regrets whatsoever,” she told Humphrys.  “My darling husband – I had him to the end.  He had a good death, in my arms, peacefully surrounded by family and friends”.   

Life can be good.  It can also be unbearably tough – something I really don’t need to tell any family carers.  But even in the bleakest, darkest, most miserable times we occasionally glimpse a flicker of light, feel a smidgen of warmth – a few invaluable words here, a twinkle in the eye we never thought we’d see again, the faintest touch of skin on skin – and we remember what it is to be human, what it is to love.

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