Vascular Dementia showed its true colours to our family as the cruel disease it is; a disease that dismantles the personality and destroys the lives of those who love them as they watch the afflicted person slowly fade away.
4 Things I Wish I Had Known At The Time Of Dad's Dementia Diagnosis
I witnessed my dad slide slowly into the darkness of vascular dementia, shrivel away from all the wonderful things he had once enjoyed and finally die.
My dad was 59 when he suffered a stroke. Five years passed by before he was diagnosed with Vascular Dementia, Alzheimer's, Frontotemporal Dementia, and Pick's Disease. He was 77 when he died. He had been ill for 18 years.
He went from being what started out as a slightly forgetful version of himself to an anxious, irritable ghost who would often wake in the middle of the night to put on his best business suit, and then attempt to leave the family home to go to the London-based job he'd been made redundant from many years prior.
Many years went by, with mum caring for dad single-handedly at home, but as his care needs became increasingly complex we made the heart-wrenching decision to have him admitted to a psychiatric hospital. He was never to return home again! He spent 8 months in the psychiatric hospital and then six years in a care home, where his memory, speech, and mobility worsened at a rapid rate.
When my dad died, a part of me was relieved that he had been released from a world where he could no longer take pleasure in simple things like making a cup of tea, reading the daily newspaper, cuddling his grandchildren, or going for a walk with mum.
Clearly, there is no easy way to prepare yourself for living with and caring for a loved one with vascular dementia. But there are four hard-learnt lessons I wish I had known from the start - because anything that helps you to make sense of this cruelly isolating, yet incredibly common diagnosis is valuable.
4 Key Points
1) Your loved one is still in there.
One of the biggest truths for my family was that my dad was still in there, just obscured by layers and layers of the disease, and he needed us to remember this.
One of the things I find most distressing about Alzheimer's and Vascular Dementia is the idea that the 'real' person has gone, and this is something people would often say. All the while part of me desperately wanted to believe that dad had already checked out and that he was avoiding all the suffering, another part of me was just as desperately looking for proof that he hadn't left me yet.
And things got tougher when my dad's misfiring brain meant he sometimes directed his frustration in my direction, or in the direction of the nursing staff caring for him. I remember one time when I visited him in the psychiatric hospital and the nursing staff reported that he had been lashing out at staff, and a team of seven staff were needed to calm his violent outburst. It was hard to believe my dad was capable of such violence.
Despite the violence, there were still precious moments of connection and recognition. He might smile when we smiled - or hold on to one of our hands, content to enjoy the moment of peace without his usual restlessness.
The idea that we were able to restore a glimpse of my 'real' dad, even for just a few seconds, helped us immensely when visiting him was often difficult.
2) Watching as friends fall away.
Something else I wish I knew earlier in dad's journey with vascular dementia is that the 'real' support network is incredibly small.
My dad had always been popular and gregarious before his diagnosis, but it quickly became evident that not everyone could cope with seeing him so changed. People he had known for many years suddenly disappeared, sending love remotely but rarely in person.
At the time, I was in my late 20s, and often struggling with my own weekly visits, and I felt disappointed that some of the other 'adults' in my life were unwilling to do the same.
It was also pretty tough to suddenly find myself as my mum's 'partner' in decision making, especially with regards to Lasting Power of Attorney, and NHS Continuing Care - it was hard for us all but particularly lonely and stressful for her.
Thankfully, there were family and close friends that were willing to visit dad and put effort into engaging with him.
Over time, I hardened my heart to others and I wish I'd accepted sooner that some people just can't make peace with such a bleak end result and will instead distance themselves from it.
I was unforgiving because I was in pain myself, struggling to live up to my own expectations - and being harsh on those who couldn't cope was an odd way of stamping down my own feelings of wanting to flee the situation.
Dad's death and funeral were oddly healing in some ways, because I finally realised that many of those who didn't visit in his darkest days had at least continued to think about him - he was not quite out of sight, out of mind in the way I had feared. The feeling that they had simply abandoned him lessened, at least a little.
3) Finding the strength to fight.
Thirdly, you have to be prepared to fight for your loved one. This part is so important because caring for someone with Vascular Dementia is exhausting at the best of times and sometimes you'll feel like you don't have the energy for anything else.
The thing to remember, though, is that no matter how hard you find it to cope, your loved one has it so much worse. And while most people - carers, doctors, and those in charge of the complex NHS Continuing Healthcare system - are well-meaning, it's so easy to ignore someone who can no longer advocate on their own behalf. Sadly for us, the NHS assessors downplayed and ignored evidence of dad's complex and unpredictable care needs, and informed us they would be removing dad's NHS Continuing Healthcare and associated nursing care.
Dad's vascular dementia meant that he couldn't communicate in any form, including letting carers know when he was in pain. He demonstrated challenging behaviour for which he was given daily medication. He had a history of depression and anxiety, including hallucinations. He was agitated, totally confused and disorientated in time, place and person. He sighed and cried a lot. He required full management of all aspects of personal hygiene needs. He was doubly incontinent. He was totally immobile and had spent the last three years being hoisted between bed and hydro-tilt chair. He was at high risk of pressure damage and skin breakdown. He was fed a pureed, was at high risk of choking. He suffered constant bouts of vomiting undigested food. He had breathing problems and was regularly given an inhaler. He suffered chest infections. His declining mental capacity and tendency of violent outbursts made him a danger to himself, and those around him.
Seeing my dad's worried, exhausted face - and the way he looked to us for reassurance - gave me the strength to fight for the best possible nursing care. I couldn't bare to let him down.
4) The ending of dementia disease isn't the be-all and end-all.
Finally, something I wish I had known sooner is that the ending isn't actually the be-all and end-all.
The way my dad's life ended was horrific. It was utterly heartbreaking to witness dad forget how to swallow. It can't be prettily dressed up and there was no brave face left to put onto his emaciated, bewildered form.
But there are two redeeming factors in all of this. The first is that we all had the opportunity to tell him 'I love you' before he died. But more importantly, I refuse to let the manner of dad's death define him. My dad was way more than dementia disease and in my truest, happiest memories of him, dementia doesn't even feature.
We are not lawyers, counsellors, or medical professionals ... we learnt how to become experienced vascular dementia caregivers and we've been on this journey from beginning to end.
My mum, Vicky, and I have written this book to comfort the relatives of other victims of this devastating disease. We want you to know you are not alone, and we hope that our experiences will support you on your journey and that the tips we share with you will help you as you find your own way to cope.
Together with my mum, Vicky, we share the story of a family hit by Vascular Dementia.
Stepping in to help my mum provide care for my dad was one of the hardest things I have ever experienced. I didn’t understand dementia at first – like so many people, I assumed it mostly affected memory, but I quickly realised the effect the disease had on my dad’s mood, behaviour, judgement, and thinking.
My mum and I hope our experiences will help others in a similar situation. - Michelle Spratt
Following John’s passing in 2019 from Vascular Dementia I continue to share an extremely close relationship with my three children and their families. My family is my saviour and mean everything to me, and nothing on earth surpasses my endearing love for them all. They have always been ‘there’ for me. - Vicky Donoghue