‘This has been a massive change to our circumstances’: a carer’s account

Margaret is a carer for her uncle who lives with vascular dementia. As someone who is considered to be ‘vulnerable’ she is no longer able to visit her uncle. This has an impact on her life and her uncle’s life.

My uncle is in a local care home, having been diagnosed with vascular dementia. This has been a massive change to our circumstances – both for him as a person living with dementia and me, as his carer. I fall in to one of the vulnerable groups, suffering from a rare auto-immune illness and also type 2 diabetes. But I wouldn’t be able to visit him anyway – the care home is in lockdown for the next 12 weeks. We will have the occasional telephone call though I do not want to put any pressure on the care home – their resources are precious.

So where does this leave us. My uncle has insight so knows what is happening to him. I told him the diagnosis was vascular dementia. This was a hard thing to do but I felt that he had a right to know. There was a positive side to this – I could also advise him that progression would be slow. I was aware he would understand this as another family member has vascular dementia – we have witnessed its slow advancement over the years. Had there not been this positive slant to the diagnosis, I may have held back from telling him. 

He has told me several times that the transition from domestic living to residence in a care home, has not been a traumatic one. He often feels he is still at home – much of the furniture is similar to his own which he finds reassuring. He has his personal possessions that are so meaningful to him – photos of his wife and daughter, his military medals, a scorpion ornament which I gave him as a gift – a private joke between us. He gave me a list some time ago of the times he’d had a close brush with death – a car suddenly bursting in to flames, a serious accident at work as a young man, and of course a scorpion bite he had suffered as a soldier in Egypt. He felt he had been lucky – these incidents could have gone either way – but he had survived them. This has been the way he has rationalised a difficult life and placed a value on the fact that he has lived until 92. ”You only have a lend of it” is something he has said many times, relating to life itself. So true and so wise. A sound philosophy to live your life. Whilst dementia may have robbed him of short-term memory, his sense of humour, good manners and wisdom still shine through. I am so grateful of those.

Written by Margaret Ogden



We are now recruiting for the MSc Advanced Dementia Studies starting in September 2020 https://www.bradford.ac.uk/courses/pg/advanced-dementia-studies/