Our story …..
Here we tell the story of Carol and David and the journey they’ve been on with dementia. This is told with kind permission from Carol. Dementia affects many people, in many different ways. If you’re living with dementia, are affected by the disease, or simply want more information, contact us today.
David was a lodger for ten years in my Mother’s house, up until her death in 2012.
In truth I did not really know David, apart from passing pleasantries regarding the weather, if ever I saw him.
David was a bricklayer and had worked in construction work all his life. He had no family and led a simple life, enjoying a few pints with his mates and the occasional flutter on the horses. We are both ordinary people but in truth our lives are poles apart and we are two very different people.
The day after my Mother’s funeral I went to see David to see how he was and found him distraught. My three sisters had given him one month to vacate the premises as they wanted him out, so that they could sell the house.
David didn’t own the bed he slept in, the pillow he slept on, or the mug he drank out of. He owned probably half a suitcase of clothes and a small collection of cherished records, mainly from the 70s and 80s.
Within two days we met with a very supportive woman from the then housing department and within the week, I had managed to prove his full residential status. Within the month, housing had found him accommodation. It was a simple bedsit, but David said that he felt like a pig in muck, or words to that affect! I managed to source David carpets, curtains and other basic, essential items with the support of Vinny from the Grace Trust.
David complained of shoulder pain, so I took him to a GP. The shoulder pain was basically wear and tear caused by years of manual labour, but an x-ray showed that he had asbestos on his lungs which fortunately was non-malignant.
Whilst at the GP’s I made a few observations regarding David’s changing behaviour and he was referred to the General Hospital for a brain scan. This proved inconclusive and I was asked to accompany David to Southampton for a thorough investigation.
The test results showed that David had frontal temporal dementia.
I knew nothing about dementia or this specific type of dementia. I was told by the specialist that there was no known cure, that his condition would slowly deteriorate and that there was nothing that could be done.
I felt strongly that there must be something I could do, but what?
After research I found out that there were drug trials being carried out in London and managed to get David on to a programme. It meant getting up very early, collecting David and catching the first flight to London, a train journey to the clinic and back then catching the last flight back.
We did this every month for eighteen months but in the end, the noise and bustle proved too much for David and in truth I was an exhausted wreck by the time I got home! On one occasion whilst in London David nearly got killed five times in one day after walking straight into the path of oncoming traffic. I remember thinking “if only there were ‘baby reigns’ for adults”!
It was during this time that I got to know David. He can be a funny, entertaining, yet sometimes exasperating man.
He doesn’t see anything wrong in striking up conversations with complete strangers which they view sceptically, particularly when he is animated.
I have grown to understand that sometimes David’s behaviour and short temperedness can sometimes frighten people (it sometimes frightens me), but this is just part of living with dementia. It’s difficult when you can’t explain to people that he has dementia and even if you do, mental health can be a scary thing for people to understand. You can’t stick an obvious sticking plaster on dementia.
David is an independent man, deemed to still have capacity to make his own choices and make his own decisions about his life, although this year has been a difficult year. David has had food poisoning twice, caused by eating chicken which he reheated. He suffered an infection in his gall bladder which turned into sepsis (blood poisoning) which attacked his liver and gave him two heart attacks and suffered pneumonia, on top of all that he made it through!
David continues to live alone, happy in his world. He has his routines and goes to bingo, once a week with his ladies. He also meets with Ian, his community support worker, once a week for an hour, who is brilliant with him. He has a medical check once every 6 months.
I check on David daily, taking him shopping and try to involve him in ‘normal’ everyday life. We go walking with my dog Axle, who David describes as his ‘babe magnet’. The draw of Axle’s adoring eyes and gentleness gives him the opportunity to strike up a conversation and talk with people. (David’s a terrible flirt with the ladies!)
It’s been a journey and we take each day at a time. I’ve learnt a lot. Dementia is a scary thing, not just for the people who are affected by this debilitating disease but for the carers, the “unseen carers”. For many carers like me, there is no financial remuneration and rarely is there any recognition or appreciation. Dementia and associated illnesses such as Alzheimer’s are getting worse and will continue to get worse. We read stories such as mine in the newspapers and on TV all the time and think ‘but what can I do? We feel helpless. I used to feel the same.
Through my experience and with the support of The Jersey Alzheimer’s Association, which educate and increase understanding carers, I now know that there is something that people can do, right now.
The association have the knowledge and professional expertise to educate our Jersey Politicians about the long term affects and needs that dementia will have on our society, for all of us. The association can drive the care that needs to be written into the Jersey, long term health care plan, but they need financial support.
If people gave the equivalent of one hour of their annual salary to the charity (which relies solely on charitable contributions, without financial support from the Government) they can drive the future planning for us all.
People (You) can make a difference, right now.
Dementia doesn’t care about who you are, or what you are, it doesn’t discriminate.
Did you know?
Dementia is a collective name for progressive brain syndromes which affect memory, thinking, behaviour and emotion. Dementia is the leading cause of disability and dependency among the elderly.