Our dementia journey
The impact of dementia in a loved one is cruel beyond belief as the person’s cognitive function inexorably declines. Additional unnecessary cruelty is inflicted by the ‘Covid says no!’ so-called ‘guidance’ in which carers have been and are still being denied access to their partners and spouses in care homes and in NHS facilities. I know what it’s like, and argue it’s time to challenge this mind set as powerfully as possible.
Two years ago when my beloved wife of 57 years was showing evidence of vascular dementia, she developed ‘red flag’ symptoms of blood in her urine. After complex investigations she was shown to have a rare transitional cell cancer in her ureter, the tube between her kidney and bladder. This diagnosis demanded the need for major surgery to remove her kidney and ureter.
The day of admission was profoundly challenging. I felt an overwhelming sense of betrayal
In our first conversation with her outstanding, empathetic surgeon he told me that because of his hospital’s Covid policies to prevent infection I would not be allowed to be with her during her admission, being told I would have to leave her at the door to face surgery entirely unsupported.
I was incandescent to be told of this unspeakable cruelty and argued that surely, by rigorous self-isolation for two weeks before admission coupled with negative swab testing for Covid 48 hours before I could safely be with her? Furthermore, I argued that I wasn’t a casual ‘visitor’ but a registered ‘carer’ who could add value. He said he would do what he could but couldn’t promise I’d be allowed in, despite having Power of Attorney to speak for her needs.
On the morning of admission after due isolation and screening I was told by the ward receptionist that I couldn’t go in, but on challenging this robustly eventually I was let in though at massive unnecessary emotional cost to us both at a time of huge stress. I was able to prove my value by keeping her calm on the way to surgery, being there to love her when she came round from the anaesthesia, and to encourage her drinking in a way the very busy nurses couldn’t do. We were able to go home two days earlier than expected.
Her dementia rapidly deteriorated after returning home. At the point of carer burnout in me, we were forced to consider the unpalatable admission to a memory care home despite my marriage vows. I was completely unprepared for the practicalities and emotions of admitting her. I was ‘on my own, Jack’ to explore through the internet the likely progression of her illness. No one had sat down with me to explain a probable long-term plan or how anyone would help me to cope with the inevitable ‘second’ death.
The day of admission was profoundly challenging. I felt an overwhelming sense of betrayal like Judas Iscariot as I took her by the hand, trustingly, to admit her. I was advised that it would be best for me not to visit for up to two weeks to allow her to ‘settle’. I found this to be exceptionally hard to take.
Overwhelming guilt, sadness and loneliness dominate my life with the devastating realisation I no longer have my soulmate
I was distraught returning to our cold, empty home that evening, missing her dreadfully, and the next few days were a blur of sorrow. Unable to sleep in our now empty bed, loss of appetite and deep lethargy characterised my existence. Unexpected scalding tears caught me out on seeing the watch I had bought for her on the bedside table where she had left it; precious photographs around the house; her clothes hanging in her wardrobe; her perfume smell of her dressing gown behind the bathroom door all conspired to make me miserable.
Whilst there is deep relief that she is being so well cared for with responsibility for it no longer being mine, nonetheless, overwhelming guilt, sadness and loneliness dominate my life with the devastating realisation I no longer have my soulmate with whom to share our daily experiences and to plan for our future. My beloved wife lives in a world of her own that no one can understand. She has no memory of our courtship and marriage; of her babies; our life together.
After her admission and my initial disappearance from her life to allow her ‘to settle’ she no longer recognised me or our daughters. More recently a spark has returned - she recognises my voice and smiles in anticipation of a hug and a kiss. I visit her every day in the afternoon where we lie down together, when she goes into a deep restful sleep clutching my hand. Is this wise or not I wonder? I’m advised that I should maintain this spark because once it has gone it will be gone for ever. Nonetheless I often weep seeing her lovely face sleeping next to mine being fearful of the next steps in our journey together when I will have to face the reality of her death.
Questions need to be asked of those formulating restrictions, not least, what actually is the hard evidence that excluding carers despite screening for Covid and introducing PPE measures prevents cross infection?
It really is time for the mind-set to be seriously challenged, including there being a legal requirement for registered carers to be allowed access to their loved ones. Compassion, flexibility the best interests of patients must be the central foundation for our services once more.
Professor Sir Al Aynsley-Green Kt, former first National Clinical Director for Children, Dept of Health; first Children’s Commissioner for England; Past President, British Medical Association
A fuller version of Al's reflections can be accessed here
We are campaigning to End Isolation In Care and for a new right to a Care Supporter.
If you have been affected by the issues raised in this story, or would like advice or support on visiting your relative or friend in care, please contact our helpline.