Linda Steel, who cared for her mother with dementia for many years, shares why the pandemic has heightened her interest in dementia research and how being a Research Network volunteer has given her hope for the future.
Just over two years ago, I lost my mother. I watched her fight for every breath of oxygen as she succumbed to pneumonia.
It wasn’t the ending I had hoped for her after her brave 10 year journey through the stages of dementia – I had wished that she would go to sleep one night and not wake up.
But that was never going to happen for Mum because a) she was too feisty and had battled against the odds all her life and b) the dementia wouldn’t let her choose when and how to die.
Care home crisis
To hear, now, of so many of our elderly – a significant number of whom, inevitably, with dementia – dying in this way as result of COVID-19 fills me with both sadness and anger in equal measure.
And to know that they spent their last days in isolation without loved ones to allay their increasing fear and confusion, without a husband, wife, daughter or son by their side to hold a hand and tell them (as I did with mum) how loved and admired they are, makes it all the more awful.
Technology is a poor substitute for human contact and a face peering out of a smartphone would only compound their confusion.
Thank goodness for the presence of a care worker in their final hours.
The distress felt by those wonderful people watching, helpless, as one after the other of the residents they had come to know and love pass away, has been palpable.
For, despite the dementia, these residents were valued members of society. They are individuals with their own personality, their own quirks of character- human beings worthy of life and love, dignity and respect, care and compassion.
Caring for my own mother for six years, I was determined to find out as much as possible about the disease and to do all I could to ensure that she had the best quality of life for as long as possible.
So I read all the articles I could, invested in a range of activities to do with her both in and out of home, enrolled her in day clubs, spoke to local specialists in dementia and elderly care, asked copious questions and followed developments with interest.
Mum’s dementia years were not easy and there were frequent challenges but the photos, videos, pictures and many happy memories bear witness to the fact that she enjoyed life for much of the time, within the limitations of the disease, and we enjoyed her company.
As a member of the Alzheimer’s Society’s Research Network, I have seen only one set of research proposals but I have been fascinated by them and excited by what changes they might eventually bring about.
Thinking back to my mother, I wonder what part – if any – her deafness may have played – or her chronic lung condition – or her wearing of dentures – or the loss of a young child and the ensuing life-long sleep deprivation. And I wonder what else I could have done to ease her journey through each stage of the disease.
I want nothing more than for research to lead to a better and better understanding of this cruel disease and to an eventual cure, hopefully in my lifetime.
In the meantime, I will keep striving to raise awareness in people as to what living with dementia means and does not mean and I will encourage people to donate to this cause – especially now.
When coronavirus has not just taken so many lives but has also taken away the personal contact so vital to those living with dementia, and so many funding and research opportunities.
Hear more from our Research Network
Read more stories from our wonderful volunteers and learn about their experience of being involved in the Research Network.