My mother Ruth was diagnosed with vascular dementia in early 2018.
At the time her perception was that there was ‘something wrong with her’. This upset her and understandably frightened her. I had a sense of how her dementia might progress but it was a journey into the unknown for me as well.
Our Admiral Nurse was there for us
Early in 2020, before lockdown, she was hospitalised with a chest infection, and when she was discharged it was clear to me she needed respite care and she went into a care home. At the time the health professionals counselled that she should remain there. As my mother had always been clear about her desire to stay in her own home, we needed someone we could turn to for advice and support. Our Admiral Nurse, Mary-Jo, was there for us at this point.
Mary-Jo supported me and my mother in getting the outcome we wanted. She worked closely with the physio and the social worker to establish mum’s needs when she went home and was always clear about what would be required to meet those needs.
Getting to know each other
There was a lot of face to face support with Mary-Jo. She visited my mum in her home and talked to her in a way which was respectful and enabling. Mary-Jo quickly established a rapport that meant she could be taking my mum’s blood pressure whilst asking her about my mother’s training as a dress designer in London during World War two. She took the time to get to know her, to understand her, and to care for her.
When you start trying to help someone you love cope with dementia you are confronted by a mass of information, services, helplines, websites, pamphlets and literature. Mary-Jo helped connect the dots between the support services and professionals working in dementia care. She was a fantastic help when it came to advice with practical needs, like liaising with the continence supplier.
While Mary-Jo was there because of my mother’s needs she constantly reminded me of the challenge I was facing: it’s not just the person diagnosed who needs support but family members too, who can find the intense caring responsibilities daunting. At the moment my mother is settled back in her own home and we are lucky to have found the most wonderful live in carer. For now, Mary-Jo’s work here is done – she has been a great person to have with us through these difficult times and her support really helped us through these challenges.
Thoughts from Mary-Jo
Carers need to have a central point of contact. If Admiral Nurses communicate well with health and social care professionals, such as GPs, and relay that information to the carers, they feel more empowered. We also provide clear and honest answers about available support for the carer’s needs as well as the person with dementia’s.
We have launched our Only together campaign to work with families, GPs, Admiral Nurses and other professionals to deliver better specialist support for families affected by dementia. Read our recommended first steps and find out what actions you can take