It's been busy just recently, and it can be difficult to find the time to write, but the difficulty of telling someone they have a dementia, and the vital importance of having the right help and support with this essential conversation needs to be understood, and talked about!
If you don't know you have a dementia, you won't have a hope of understanding what is happening to you. Your family who love you very much might think they want to spare you the pain and 'devastation' of a diagnosis. As your dementia evolves, the symptoms increase, the fog thickens..........you will know something isn't right, you just won't know what it is.
A well meaning health professional might agree with your family, your carer, your partner. They might say 'Its better not to say at this stage' The doctor, the nurse, the support worker, they might not quite know how to have 'that conversation' Its tough. Really tough. Of course this is a situation I have encountered in my professional life, but how do I really know what families might think? After all, it's so easy to wax lyrical about having the right conversations at the right time when you have the safety net of being the 'professional' in the equation.
We, as a family, have never really talked to Gran properly about her diagnosis - it came for her at 95 - she had been living with the presence of the symptoms of Alzheimer's disease for around two years before this. She had watched my Grandpa rage against the thunder of his vascular dementia. My family like so many others just wanted to spare her the pain.
Gran often asks me, 'Am I going mad?' She says 'I don't know what's happening' - I hold her hand, reassure her, tell her she is ok, and we are all here. I find it incredibly tough to speak frankly with her about 'dementia' - when the word can trigger such powerful emotions. I am more comfortable accepting her reality than perhaps other family members are - I know when to gently validate, when to simply just join her in her quiet world, not to challenge the things she says. What we as family needed, just as much as anyone else- was a health professional or supporter, such as an admiral nurse to guide us. I might be a dementia nurse, but I also love my gran - that makes it hard be the health professional for her, or my family.
What would they do? We could have been supported with planning and having that essential conversation. We could have explored and then come to understand why it felt so difficult, and come to a point where we COULD sit with gran and really talk to her. A way to reach her in the lonely place Alzheimer's dementia has taken her to.
A person with dementia, speaking publicly at the Dementia Congress last month puts this issue into a very important perspective - 'We might not want dementia, but its OURS, not yours (health professionals) or our families - It's OURS so we need to know' We as health and social care professionals - advocating for and supporting people with dementia -need to really understand the importance of our role in this part of the dementia journey.
Having that essential conversation at the right time, and carers having access to the right people to help them - we can be better at empowering the ;person with dementia right from the start.
