Francesca Cawood talks about her dad, Peter, 68, who has lived with vascular dementia for three years.
How was your dad diagnosed?
Dad had suffered a stroke and we were in the stroke registrar’s office being shown his MRI scan when the term Vascular Dementia was mentioned. You didn’t need to be a doctor to understand what the registrar was pointing out on the scan: we could see a bright white mass against the black background of his brain, and the background historical “dementia” damage that appeared as areas of grey haze around a large proportion of the rest of his brain.
The news was delivered with little sense of gravity or empathy, and we were ushered out of the room into a busy corridor, trying to make sense of what we had just been told. An appointment with Dad’s consultant was hastily arranged and mum, my sister and I met with him at Dad’s hospital bedside.
The diagnosis was confirmed, thankfully this time with much sympathy and the opportunity for the questions we had been unable to ask the registrar. Dad, who was still suffering the cognitive effects of one of his “neurological episodes,” simply sat up in bed in his new pyjamas, smiling at us all, and hadn’t a clue what we had all just been told – or maybe he just didn’t want to know. I suppose we’ll never know which it was.
What happened after diagnosis?
Shortly after that, whilst he was still in hospital, Mum, my sister and I went out for dinner. The three of us needed to have a big, practical chat. Dad’s speech had recovered well enough by then for him to insist that “dinner was on him,” even if he couldn’t come with us himself. Going for dinner at one of his favourite restaurants without him was very strange, but it will always be a memorable evening because I realised that night how strong the three of us are. I’m confident that Dad also knew this. There were no more tears to be shed and, instead, we talked calmly and practically about how we would deal with it.
Since I’m a lawyer, we decided that I would sort out Lasting Powers of Attorney for Mum and Dad. Once you’ve decided who’s going to be the attorneys, filling out the forms is a straightforward process – I did them myself – but you also, crucially, have to register them with the Office of the Public Guardian. Overall the process was a bit time consuming, but definitely worthwhile. If you put it off you can find that you’ve left it too late and might have to apply to the Court of Protection for the right to help your loved one manage their affairs – and this, I know, is a lengthy and fairly harrowing experience.
In addition to this important legal and practical step, a friend suggested we contact Age UK for advice on care options and funding, and to find out what support was available for Mum. We all agreed that we needed to gather as much information as possible while the going was good. Trying to get important information or understand new concepts during a crisis would make it additionally tough.
Peter & Francesca as a baby
How did you tell other people and what was their reaction?
We didn’t tell anyone Dad’s diagnosis for the best part of a year. We were all, Dad included, happy that people were led to believe the explanation for his impaired cognitive skills was his recovery from the stroke he’d had. The truth of the diagnosis in a man who was then only 65 would have put us at the receiving end of so many questions that we probably couldn’t have answered. And there is still such a stigma attached to a disease of the brain.
We each told a few close friends, but ultimately, it wasn’t until my sister, Virginia, ran the 2015 London Marathon for the Alzheimer’s Society, with a clear aim to raise awareness of dementia, that I felt able to speak about it. And it was hard, because it was so sad. Everyone knew my dad as the clever, sharp, funny raconteur who could network like no one else with an inimitable ability to remember names; spouses’ names; who people worked for, and something interesting about practically everyone in a room. Of all the diseases my dad could have got, it was the one that would erode his whole personality and his razor-sharp memory before killing him, one way or another.
Some people found being told of Dad’s diagnosis so awkward to handle socially that they tried to respond with humour. But I have never found it funny when people say, ‘Oh I’m like that! I’m always forgetting where I put the car keys,’ because it’s nothing like that at all. It’s not a natural part of the aging process; it’s a disease for which there could be a cure, if there were money for the research.
What were the main challenges you faced and when did they happen?
Dad, so far, has had a very good quality of life since the diagnosis in 2013 – my mum makes sure of that. He and I still share the same sense of humour and I know when he’s seen something that would make both of us laugh; it’s just sad that he can’t always articulate the “joke”.
He loves cuddles with his grandchildren and playing with our old dog. He can reminisce about working in Shrewsbury in the 1980s and who was who. He loves “Pointless” on the TV and buying new clothes. He absolutely loves local gossip. But he looks 10 years older than his 68 years: he walks like an old man and has the frailty of an old man.
He gets depressed at his increasing inability to do basic tasks like tie his shoe laces or time the cooking of three items to produce them ready for a meal at the same time. He is happiest simply being with mum at home. Visitors who don’t see him regularly (so, most people) don’t understand that for Dad to engage in a conversation, it needs to be slowed right down, directed squarely at him and done with a lot of patience. Visitors also divert Mum’s attention from him, which he hates. Visitors make him feel anxious. The “social animal” in him has already died.
Peter, Francesca and her sister Virginia
Have any services helped?
Mum is supported by the Alzheimer’s Society Carers’ Peer Support Group, which meets the first Tuesday in every month. Mum has spent her whole life being the supporter/listener/sympathy-giver/confidante so it took a lot of cajoling to get her to go along to something where she was to be at the receiving end of that support.
It turned out to be the best thing she could have done. At the age of 67, she is one of the youngest carers who attend the sessions locally but says that simply knowing other people are going through the same issues, and to be in good enough company both to cry and laugh about shared stories, is tremendously supportive. They have useful guest speakers; give each other emotional and practical support, and the group is led by a kind, understanding and sympathetic Alzheimer’s Society worker.
What lessons have you learnt and what advice would you pass on to other families?
Get as much information and support as early as you can. Do it whilst things are ok – don’t wait for a crisis; trying to seek information and support urgently in a crisis will only make it tougher. The Alzheimer’s Society and Age UK were brilliant hubs of advice and support for us.
Talk openly to friends and family about the diagnosis. It’s the only way we can end the stigma associated with this kind of disease. We’ve been on our dementia journey for four years now, and you’d be surprised how many people and their loved ones are affected by dementia – whether diagnosed or just a feared diagnosis – who had just been waiting for someone else to talk about it.