If you could go back in time, to when your encounter with dementia first started, what advice and practical help do you wish you'd had?
When I look back, there are far too many vague promises of 'support' ...
At work, "we need to find you some more support" - nothing happened!
Social Services "we can support you" - how exactly? Nothing happened apart from nobody listening when I suggested mum might have dementia!
Care agency (now fired) "We're here to support you!" That would be by trying to kill mum by leaving dentures in over night then?!
Local Authority "Would you like to join a support group?" No - because every time anyone mentions the 'S-Word' now, I feel like screaming!!!
What I really wanted in my 'Top 5 Real Things That Would Have Helped' was this:
When I look back, there are far too many vague promises of 'support' ...
At work, "we need to find you some more support" - nothing happened!
Social Services "we can support you" - how exactly? Nothing happened apart from nobody listening when I suggested mum might have dementia!
Care agency (now fired) "We're here to support you!" That would be by trying to kill mum by leaving dentures in over night then?!
Local Authority "Would you like to join a support group?" No - because every time anyone mentions the 'S-Word' now, I feel like screaming!!!
What I really wanted in my 'Top 5 Real Things That Would Have Helped' was this:
- Waaaaay back in time, right back to school and GCSE Biology and Life Skills classes, I wish dementia was there on the syllabus, not to frighten us, but to start to de-stigmatise it and make it clear that it can happen to anyone and everyone should be aware of the signs.
- More awareness from my mum's optician. If her eyesight was so good for her age, what was going wrong when she started to not recognise faces and lose the ability to read? How is it she and dad knew chapter and verse on age-related macular degeneration despite mum's MD not being especially severe and nothing - not a sausage - about the possibility of PCA, Lewy Bodies Dementia, Alzheimer's etc.?
- GP, care agency and relatives who were much more aware of hosting and who actually listened to me! How come 2 agencies with accredited dementia training failed so miserably to recognise the signs, or to flag up contradictory patterns of behaviour with me, rather than jump to conclusions based on their own smug preconceptions? An example: mum told a carer that she was upset I had 'thrown her clothes away so she had nothing to wear' when in fact, a few months prior, mum and I had a fun time sorting out what fit, what no longer fit because she's shrunk; what could go to the local hospice shop (which pleased her greatly) and how we could make things simple by buying a clothes rail and me just putting the week's clothes on there. The carer, instead of raising mum's upset outburst with me, just took it to her boss, who proclaimed that it was clearly MY fault mum had these down spells because I was basically no good as a carer!
- Local Authority help that is based on practicality and understanding of the capabilities of a PWD - not a one-size-fits-all approach. We have a re-turn contraption gathering dust in the hallway for us to stub our toes on, because it doesn't work on the carpets and mum refuses to use it. She had a brave and successful attempt when the physio brought it - so therefore she can use it no problem if we just practice - right?! They won't even come and take it back!
- Proper financial assistance for people who choose to care for parents and proper training.