The Long Lost Goodbye

October 29, 2020

By Deirdra Barr on behalf of my parents Jim and Mary Barr.

They call dementia The Long Goodbye.

The initial onset desperation of a mind trying to grasp what is receding from memory. The seemingly alien takeover by uncharacteristic behaviours. The slow disappearance of the loved one you once knew. The waiting of the day when they no longer recognise you. The physical, mental and spiritual deterioration of the person into a mere shell of what they were.

All of this is brutal to watch in a loved one. You’d think there was nothing worse than to have to either go through this yourself or bear witness to it.

But there is something worse.

The double whammy of Covid-19 has meant that those precious moments of time where your loved one may still recognise you are being forever lost. They are slipping away behind locked doors, video screens and window visits.

couple on either side of a window waving

Picture of my parents seeing each other in person for the first time in five-and-a-half months.

The day my mother, who has fairly advanced dementia, screamed over and over fairly lucidly through a pane of glass “This is ridiculous, am I never going to hold his hand again?” and I agreed with her, was the day I needed to start yet another fight. I already had to negotiate potential end of life visitation, extra video calls and window visits. This is in no way criticising any care home as I recognise their jobs are hard and they have guidance to follow. Ours have been as supportive as they can. So many elderly people have died in care homes through the Covid-19 outbreak. I understand this. But I shouldn’t have to be negotiating these things when our family is already grieving.

A hairdresser can touch my mother’s hair but I can’t. I see a fraction of the people that the hairdresser does. My immediate exposure is contained to my family. She sees and touches multiple clients a day.

“This is ridiculous.” I’m speaking for my mother who can no longer be heard.

The care staff can hold her hand, but I can’t. They are holding other hands, which I don’t. They can touch her completely, yet her husband of 56 years, even if he donned full PPE, cannot hug her or even hold her hand.

“This is ridiculous.” I’m speaking for my mother who can no longer be heard.

The one thing above anything else my mother taught and modelled to me was to stick up for the underdog and for those that couldn’t speak for themselves. I’m doing this for her and all the other screaming – silent or otherwise – people with dementia and their relatives that are being kept apart as they are slowly and forever disappearing.

I’m a pretty resilient person yet I am finding this traumatising. Is this going to be the memory of my parents? Their agony through a piece of glass? Their joy at seeing each other just once a week after they used to visit every other day for hours? Then their realisation that the most basic human need to comfort is denied. I have seen my father slumped against the building bawling like a baby because he can’t hold her hand. My mother shouting at me because I can be with him and she can’t.

A third of people living with dementia are in care homes. The lack of visits affects not only them but their partners, their children, their grandchildren and their friends. Often people with dementia don’t even understand and many probably feel abandoned so the loved ones carry that burden of guilt as well. It’s so surreal and brutal. It’s traumatising thousands of people.

And yet there absolutely are safe ways of doing this. Absolutely. Safe.

We need to start applying the same protections and safety guidance that care staff use to relatives to enable them to hug and hold their loved ones. This is entirely possible and it can be done safely. It needs to happen. It needs to happen now.

Because not only is this completely inhumane …This is Ridiculous.

Seven months of forced separation in the care setting has had a negative impact on the health and wellbeing of families affected by dementia. Family members can provide that mental, physical and emotional nourishment which people with dementia depend on. We need a compassionate, clinical and pragmatic approach, underpinned by collaboration, for the thousands of families like Deirdra’s

– Paul Edwards, Director of Clinical Services at Dementia UK.

We’ve been campaigning throughout the Covid-19 pandemic, including an open letter to Matt Hancock, Secretary of State for Health and Social Care, with our recommendations for safe visiting for care homes, and a one-page flow chart with recommended steps to help safe visiting to resume. Find out more here.

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