It’s now nearly 15 years since my mum was diagnosed with Alzheimer’s, and as a family we have witnessed the effects this cruel disease has had; as it slowly stripped her of so many fundamental parts of herself including her independence, ability to communicate, along with her memories and ability to recognise and connect with her family.
I felt that as a result of my direct experiences with mum and having worked at Alzheimer’s Research UK for some time, I‘d developed a reasonable understanding of the various forms of dementia and their different effect on those living with the condition and their families.
So when I recently attended a memory clinic with my dad, where he was diagnosed with vascular dementia, I felt that although it was clearly a devastating diagnosis for him, the family would be fully prepared for the effect this would have on him, and be able to offer him the right support. It would appear I was wrong.
The effects of vascular dementia
The effect vascular dementia is having on my dad is significantly different to my mum’s experience with Alzheimer’s. There are of course some similarities but I really had not appreciated the distinct differences between the two.
I hadn’t appreciated the distinct differences between Alzheimer’s and vascular dementia.
Physically Dad displays much more obvious changes; having been a farmer and a fit man all his life, he has always walked at quite a pace but now he can no longer walk very well and instead shuffles around his bungalow and garden, unable to walk any distance.
He has quite some trouble with nouns, such as the dustbins now being called seashells, and his words get ‘jumbled’, so he may say a word with an unintended first letter (we don’t say it’s wrong, just not what we expected) or invent a blend of two words. As I know him, if I concentrate, we can normally piece together what he had intended to say, but for strangers or friends he doesn’t often see, I can see this would be quite challenging.
One of the most devastating effects for him is his decreasing ability to read. We have seen eye specialists and opticians, to try and rectify his difficulty in reading and apparent failing eyesight. It was with a heavy heart when Dad told me that the most recent specialist he saw explained it wasn’t his eyes that were the problem, but ‘the way my brain is interpreting the signals from my eyes’. He has been an avid reader all his life, but now struggles to read the headlines in his newspaper. My mum also lost the ability to read but so much later in the course of her illness, it has been a shock for us all how quickly Dad’s quality of life is declining with this condition.
Good days and bad days
He most certainly has better days than others, when I can convince myself that actually it’s not that bad, but then on a bad day or when he’s tired, I wonder how long he will be able to live on his own. Everyday things just don’t make sense to him anymore; and he’s vulnerable.
He’s angry too, and quite moody. He has always struggled with the winter season, but his periods of being ‘down’ are now more regular and sometimes he gets quite angry with the effect this disease is having on his life. Having recently been advised to give up driving his car, we are currently having robust discussions on the appropriateness of an 83 year old with vascular dementia buying a moped.
Perhaps the family were more sheltered from Mum’s early stages, as she had Dad there to help her.
Perhaps the family were more sheltered from Mum’s early stages, as she had Dad there to help her. Dad has us, but I’m sure it’s not the same as having your partner at your side. He still sees Mum in her care home, she doesn’t really know him any more, but I wonder how much he would like to reach out to her for support, and I know she would have helped and comforted him, encouraging him to keep smiling and laughing.
She can’t do that but we can and will, as we all learn again to live with the effects of this disease.