Recently I’ve met many people and heard many sad familiar stories. I’ve had emails from people saying they don’t know where to turn to or where to look, even in areas where I know there is support available. People wanting to help themselves but needing support and advice to do just that.
I’ve often said, ‘we don’t know what we don’t know’. It’s so hard to know where to start if you don’t know what’s available and the best people to ask. Many people find it difficult to search on-line and I help where I can but why should it be like this for people diagnosed with a life limiting condition?
I met a speech therapist in Scotland who spoke of the pilot scheme she’s involved in. For people with dementia who have trouble finding words…….brilliant⭐️
When a person has had a stroke and they have trouble word finding they are automatically referred to a speech therapist……why isn’t someone with dementia also automatically referred when they have trouble with word finding?
When someone has had a stroke and has a gait problem they are automatically referred to a physiotherapist……why isn’t someone with dementia also automatically referred when their gait changes…….?
Many people with many conditions who have a problem eating are automatically referred to a dietician……so why, when our taste buds change or we don’t feel hunger are people with dementia not automatically referred to a dietician…….?
Why isn’t our hearing automatically checked at regular intervals for such things as hyperacusis – why did people with dementia like Agnes Houston have to highlight this issue to professionals for the rest of us to benefit?
If I was diagnosed with cancer tomorrow would the phone stay quiet and no treatment be offered? So why when someone is diagnosed with dementia does the phone remain silent……..? Why is it up to us to find the service?
If you’re diagnosed with diabetes, you have regularly check ups. So why are we often discharged from a memory clinic into the hands of our Gp and then simply told ‘Oh it’s just the dementia’ when raising issues.
If someone is diagnosed with cancer people rally round and tell you to fight it. So why when we say we have dementia are we given a sad embarrassing look with no words of encouragement?
Why do we have to try to venture into the maze of bureaucracy to find, MAYBE, what we need? Why is it assumed that charities will plug the gaps?
We don’t know what we don’t know yet many services expect us to find them. Many benefits expects us to know they exist and how to apply for them. When we receive a diagnosis can’t that sort of information be available and not just with a pile of leaflets?
As children we want our lives to fast forward and the thought of being ‘older’ is exciting, bringing us independence and being able to do what we want. We protect our children, we worry for them and most services are there to make sure they develop as they should (I’ll miss out mental health at this point)…….but with dementia our lives can ‘fastbackwards’, we regress to former times. But unlike children growing up, we have no choice or control over the regression. Some carers describe it as being like ‘looking after a child’……so why does the health service not work in reverse and provide appropriate support and help for those supporting and people with dementia as a matter of routine?
Yes I know all this costs money and the funding isn’t there but why is it that people with dementia are ignored and not deemed worthy enough of help? Why do I feel like we’re at the bottom of the pecking order simply because we have dementia ?