A reviewer of my book felt that our experience with dementia was not typical:
‘He could afford to pay for and choose Shoko’s carers, and was spared the angst of sparring with social services. Around him were the essential circles of support – family, friends, church members and carers, as well as ready access to an empathetic GP. His church leader gave time and spiritual support and, importantly, the community dementia nurse acted as a central hub, combining medical and personal advice in person, or by phone or email. So many caregivers would give their eye teeth to have all that.’
Reading this was a surprise. At the time our experience felt difficult and painful enough – though I knew we had been fortunate in the support we had received.
But I hadn’t realised HOW fortunate. If others didn’t have that kind of support, how hard it must have been for them.
Our care system badly needs to change, so that those living with dementia, and their caregivers, receive the support they desperately need. (Read the post here ‘Changing the system and building your support team’).
With all the blessings listed above, it was still a lot of work to build our support team, finding what was available, making contacts, asking friends, trying people out, discovering what worked. Without it we would have been finished, as the reviewer points out. Each person has to work at it and for some it will clearly be very hard.
The reviewer correctly identified another great source of support: ‘the awareness of Shoko’s constant affection and love for him’. I am always grateful that she felt it and could express it right up to the end. Some aren’t able to do that; some even seem to have lost all ability to communicate. How hard for those that love them. My friend went to visit his mother recently and she didn’t know him. I don’t know how I would have managed in that situation.