Re: Carers wish list - please contribute!/Vivian

June 9, 2012

Vivian, when my husband lived at home and before his death, I had a wish list

too.

I wished that I had a robot that would take care of all my husband's needs that

I couldn't do.

I needed the robot to be there to pick him up when he fell and to make sure he

would not escape out the door or to the car. I needed the robot to entertain my

husband when I had to cook or clean house, because everytime I stepped out of

the room he would call for me. I needed a robot so I could sleep and not have to

worry about my husband getting up and into danger. A robot would have solved so

many problems and made life a lot easier. Maybe one day they will be affordable

and available for such things. They can never take the place of human touch, but

they would sure be helpful in certain situations.

________________________________

To: LBDcaregivers

Sent: Sunday, June 3, 2012 8:05 PM

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

Hello: I have been thinking of what I would put in my wish list. At this

stage, I sometimes would " wish " for a bathroom fairy that would clean up my

bathroom after my husband uses it. I will need a " handyman " fairy after

he passes or is placed to " gut the floor " of the bathroom. I hope it holds

up as I am not sure what is under the linoleum. A " nite time " fairy to

help my husband in and out of bed and cover him up with his sheet and

blankets to I can sleep undisturbed some night. If I think of any more, I

will let you know.

Vivian 50 (husband dx with PD then LBD 2010 age 66)

> **

>

> 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

>

June 9, 2012

Janet: Thank you for sharing your wish list for a " robot " ! I never thought

of a robot to handle some things. I hope that when I need more, help will

be affordable, available and trustworthy!! Vivian

On Sat, Jun 9, 2012 at 4:52 PM, Janet Colello wrote:

> **

>

> Vivian, when my husband lived at home and before his death, I had a wish

> list too.

> I wished that I had a robot that would take care of all my husband's needs

> that I couldn't do.

> I needed the robot to be there to pick him up when he fell and to make

> sure he would not escape out the door or to the car. I needed the robot to

> entertain my husband when I had to cook or clean house, because everytime I

> stepped out of the room he would call for me. I needed a robot so I could

> sleep and not have to worry about my husband getting up and into danger. A

> robot would have solved so many problems and made life a lot easier. Maybe

> one day they will be affordable and available for such things. They can

> never take the place of human touch, but they would sure be helpful in

> certain situations.

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Sunday, June 3, 2012 8:05 PM

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

>

> Hello: I have been thinking of what I would put in my wish list. At this

> stage, I sometimes would " wish " for a bathroom fairy that would clean up my

> bathroom after my husband uses it. I will need a " handyman " fairy after

> he passes or is placed to " gut the floor " of the bathroom. I hope it holds

> up as I am not sure what is under the linoleum. A " nite time " fairy to

> help my husband in and out of bed and cover him up with his sheet and

> blankets to I can sleep undisturbed some night. If I think of any more, I

> will let you know.

>

> Vivian 50 (husband dx with PD then LBD 2010 age 66)

>

> > **

> >

> > 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

> >

>

June 9, 2012