My Grandma’s dementia helped me understand the impact of our work
By Richard Budden, Head of Individual Giving & Legacies
At this time of great uncertainty it is amazing to see the way communities are reaching out to their most vulnerable members to help keep them safe or make sure they have everything they need. It reminds me of how my family gathered around my Grandma Nita when she was diagnosed with dementia.
She died in December 2012 but from the very beginning, when a routine medical check-up spotted early signs of dementia, there was support and advice for my family as to how best we could help her. She had regular appointments to see how her situation progressed and went to the day centre at her synagogue to do activities with trained volunteers. She received help and medication from the NHS to make sure she was kept as well as she could be.
It was difficult and hard to see the changes in her. I was lucky, she always remembered me, or saw someone else she recognised in me. I would get a smile and a tut as she rubbed her hand on my beard, followed by a light tap on the cheek. It was painful to see the person who had cooked so many family meals not be able to remember how to cook anything but we know we did everything we could do for her with carers, medical support and a care system behind her.
It’s no surprise that my Grandma Nita was forefront in my mind when I travelled to Kharkiv, Ukraine recently to meet older Jewish people living with dementia who we support through our Dementia Programme. It couldn’t help bring up memories of her – parallels of the condition and how it affected her, differences in what care is available and similarities in their personalities and the way people are still people, despite the ravages of the disease.
Meeting Iriyna who has dementia
I spent time with these people, some on their own and some with their families, in their own homes or at the Jewish Community Centre. I sat with our local partners who co-ordinate our dementia care and training and saw just how stark some of those differences are but also the impact of our work.
Zoya, the programme director, told me dementia care in Ukraine is 30 years behind the UK, that there is no medical diagnosis, no-one really understands dementia (including most doctors) and families feel it is just part of getting old or that their older relatives are just being annoying.
Zoya with Liliya
I couldn’t imagine my grandma having been in that situation with no medication and no support. It made me realise how lucky we are to live in the UK but it was also inspiring to see how World Jewish Relief’s programme is changing dementia care and training across Eastern Europe.
Over the next few days I saw how we are providing dementia training for medical and care professionals, funding group dementia sessions so older Jewish people living with dementia can keep their minds and bodies stimulated and ensuring that dementia carers visit those who can’t leave their homes.
We are the only organisation providing these dementia services in Ukraine and I’m incredibly proud that we are taking the lead and helping those who need it the most. Like Viktor and Margareta who have been married for 60 years. We first visited them at their home where they struggled to follow the conversation, Viktor would answer a question but then shrink back in his seat and disengage. There were moments when you could see the old glint in their eyes and you knew they had been the life and soul of the party.
Margareta burst into song, singing nursery rhymes from her childhood but forget them half way through. My grandma used to do the same, humming songs and speaking Yiddish even though she hadn’t spoken it for 70 years. At one point Margareta smiled at me, got up and walked over to me, grabbing my cheeks and rubbing my beard. It reminded me so much of my grandma and what she used to do. Different people, different circumstances, same connections.
The next day we met Viktor and Margareta at the Jewish Community Centre’s dementia group session and it couldn’t have been more different. Alongside other people, taking part in activities, they were up and dancing, drawing and making jokes. Viktor was engaged and although at times he was slightly confused by the surroundings, there were people there to help and support them. Margareta didn’t recognise me at first but towards the end of the session got up and rubbed my face, laughing to herself.
Viktor and Margareta at home
Viktor and Margareta at daycentre
It was amazing to see the difference we can make to people living with a condition that is unknown and undiagnosed in their own countries. As soon as I walked into Liliya’s flat she told me how scared she was that she was losing her memory. She didn’t remember some things but can remember her past, like my grandma who would tell me about her schooldays but not know her own family.
Liliya remembers the exact layout of the village she grew up in and the day the Nazis came and shot and killed her entire family. Everyone in the room was in tears as she told us she was saved by a neighbour who passed her off as her own daughter.
Liliya has a dementia care worker called Vita who comes and visits her weekly. They look through old photos, model clay together and draw to help keep Lilya’s mind active. It was heart-warming to hear Liliya say how much she enjoys the visits, how it helps her and makes her feel more confident. Vita also spoke passionately about how Liliya has opened up to her and how she has transformed from being silent and reserved to more outgoing and talkative.
This is a really difficult time. We all know what it feels like to be vulnerable and we are working with our partners around the world to ensure we can continue to look after the most vulnerable older members of our Jewish community. The people we support often live alone, with no family support and while they’re becoming increasingly concerned about the threat of coronavirus, their other worries haven’t gone away. They need our help more than ever and while our programmes will adapt over the coming weeks and months to adjust to our changing reality, we won’t stop our life-changing work and will continue to help people in Ukraine understand dementia and how to care for people living with it.
Since returning to England I often think about those who might not have been as lucky as my Grandma Nita but now have World Jewish Relief and the Jewish community fighting for them and with them. Dementia care is different in Ukraine but we are leading the way, and helping people like Viktor, Margareta, Liliya and hundreds more.
Support our Dementia Programmes by donating to our Pesach Appeal