Carers wish list - please contribute!

[Guest guest]

Hi everyone,

I'm based in Cambridge, UK and am trying to form a local support group for

carers of people living with DLB. I'm also working in research on a dementia

project, previously have about 15 years of working with older adults and lost my

own beloved dad to DLB just over a year ago.

I would really like to further my career in research by exploring ideas for a

phd project. I am particularly interested in the quality of life for people

living at home, especially the unmet needs of carers of people with DLB.

It would be great if you could respond with your " imaginary " wish list - a list

of what would genuinely help you to feel supported and would provide you with

the rest and breaks that you need, and would basically make life easier. Don't

keep the wish list real - be as elaborate as you would like to be! I'd like to

get an insight into wish lists where time, money and resources are infinite!

My mum cared for my dad at home, almost up until he passed away. Her wish list

for support as a carer was to be able to pick up the phone and for someone to be

able to come and take over at the drop of hat. Respite at the very moment she

needed it - when she was just too darned tired, frustrated and irritated.

Respite that she didn't have to book weeks ahead. Respite that came to her and

da's home so that she didn't have to feel guilty about dad going into a nursing

home. Respite that didn't leave her feeling bereaved. And if it were respite Ian

nursing home - then respite in the best nursing home that she could find, rather

than one that happened to have availability that coincided with her entitlement.

I would love it if you could share your imaginary wish list with me. Thanks

heaps.

So