Christmas has changed for Nicky and her husband Adrian, ever since he was diagnosed with dementia with Lewy bodies in 2017. Now, Nicky has shared some of her favourite memories of the festive period and the challenges she has faced caring for her husband.
From big family gatherings to more low-key festivities, Adrian’s family have had to adapt since his diagnosis.
Spending Christmas as a family
'Christmas is a big thing in our house. We have a huge store of Christmas decorations in the loft which Adrian would help bring down. He would complain that there were too many, but by the time we had finished the house would look very festive.
'We took lots of photographs over the years and I have made a life story album for Adrian which includes some photos of Christmas: the kids always made a wish stirring the Christmas cake and Adrian’s job was carving the turkey!
'Recent Christmases have become more difficult as his condition has progressed, but last year we took Adrian in his wheelchair to the Advent Service in Bath Abbey near where we live. It was beautiful and very moving. He has always loved Choral Music.'
Nicky has said Adrian has declined physically and he is now completely immobile and communication is difficult as he talks very little.
Christmas is always a time of reflection - thinking of what might have been - of the bright and articulate man who we have lost to this cruel disease - but we will still get together as a family and remember the happy times.
Spotting signs of dementia
'In the early days, Adrian was often clever enough to hide his confusion when he lost track of a conversation.
'But gradually, changes became apparent that led us to visit the GP - his driving skills had declined and his memory became affected.'
When dementia with Lewy bodies starts to affect someone, early symptoms may not cause too many difficulties. Gradually though, these get worse and create challenges with everyday living.
'The GP referred us to a memory clinic and six months later he was diagnosed with dementia with Lewy bodies. The diagnosis came as a big blow to us all, particularly to Adrian. He found it hard to give up his driving licence.
When he was first diagnosed, we had a wonderful face-to-face consultation with an Alzheimer’s Society Dementia Support Worker, who really helped with practical matters and coming to terms with the diagnosis.
'He helped in applying for an Attendance Allowance and recommended getting a Blue Badge and sorting out Power of Attorney. It is a big learning curve so having someone with expertise to lean on is so important.'
Facing the challenges of caring for a loved one
'Two years ago, Adrian was hospitalised following a TIA (Transient ischemic attack). Up until then, I was coping by myself, but getting him showered, shaved, and dressed was taking as long as two hours.
'Finally, we reached a crisis point and it was clear we needed help.
'Caring for Adrian is physically demanding and having someone so dependent on you is very draining.
'Often you wonder if you’re up to the challenge, of deciding what is best for them on a particular day, without any medical training. You need to follow your gut instinct.
'Over the past two years caring for Adrian has become increasingly challenging as he is now quite frail.
'You must keep going but our world is closing in on us, as it becomes harder for him to do simple things like sitting down in a chair - never mind more complex challenges.
'I have always tried to protect his dignity and ensure that his quality of life is as good as it can be but that is now more complicated.
'The inability to communicate is the thing that is hardest to deal with – it is fundamental to being a human being.
'He is now unable to express any kind of emotion or even tell us if he is in pain or hungry or thirsty. It is hard to imagine how terrible that must be.
It's terrible to watch an intelligent and very articulate man reduced to this. It is heartbreaking.
'Adrian was a sharp man with a successful career. He was a decent man with a wicked sense of humour - the person people wanted to sit next to at dinner.
'He loves his family and has been a wonderful father. So, we are talking about a person who is hugely diminished by his health condition.
'Luckily, Adrian’s personality has not really changed. Even now he does his best to smile and is always polite.
'You learn a lot about the person you are caring for and their needs. It’s a difficult journey and not one anyone would choose for their loved ones.
'It is hard not knowing what is going on inside his head.
'It’s sometimes lonely and depressing for me, but I try to be positive and deal with the difficulties as they arise.'
The life-changing impact of dementia
'This is a journey that neither of us expected to be on and it breaks my heart that we are in this place rather than enjoying retirement together and seeing our kids branch out on their own.
It takes a long time to fully appreciate how the diagnosis will impact your lives and how all your dreams of growing old together are not going to come to fruition.
'Whilst it makes me incredibly sad to see Adrian go through this, I want to do everything possible to make sure he is cared for with love, dignity and compassion.'