Carol - Millie Re: Carers wish list - please contri bute!

[Guest guest]

Good to see a post from you Carol. I remember Millie and your caregiving. I

also remember the stories, and photo's, you shared of the manatees. So nice of

you to get back to the group. Sure hope you aren't/weren't affected by

flooding. Wishing you well- Sandie

Des Moines, IA

----- Re: Carers " wish list " - please contribute!

Date: Tue, 26 Jun 2012 01:58:02 -0000

My mother-in-law passed away 4 years ago from LBD. Turns out her 2 sisters

also had LBD but they did not have a diagnosis.

I had the support of this group and it literally kept me going when no one else

understood what I was going through.

Millie lived next door to us but because she was one of the coldest women in the

world to her three sons, none of them could deal with her.

Millie actually was sometimes nicer after she got sick than before.

I wish I had gotten the Hospice home visists started sooner, especially the

music therapist, who brought me more comfort than Millie, I believe.

I am going to think about a wish list and get back, but I just wanted to ease my

way back in after all this time. I feel like I owe this group so much, and it

is time to give back.

I am intrigued by the question, and will give it much thought.

> >

> > > **

> > >

> > >

> > > 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

> > >

> > >

> > >

> >

> >

> >