Re: Carers wish list - please contribute!

[Guest guest]

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

>

>

>

[Guest guest]

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

>

>

>

[Guest guest]

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

>

>

>

[Guest guest]

Thank-you for your response Vivian. Love your phrase " fairy " , I can even hear

little jingle bells each time you use it! Yes, please do. Xx ps - my dad was

also originally diagnosed pd, then " re-diagnosed " probable LBD. Keep strong x

>

> > **

> >

> >

> > 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

> >

> >

> >

>

>

>

[Guest guest]

After one horrendous morning with paramedics after my husband fell and I

couldn't get him back in bed,despite trying, he is 6ft3ins and over 12stone(he

used to be 15st) I am 5ft! Have let him stay in bed to recover as he was very

sleepy, now he doesn't want to get up, hope it's not another step in

deterioration process as trying to keep him at home. My wish would be for an

understanding Doctor who was genuinely concerned about us coping at home and who

is supportive instead of only reactive when pushed. My wish would be for a

coordinated team who support you through this horrid illness, so you get help

when you need it instead of after weeks of waiting. I only get help and breaks

now as we pay privately. Husband been Ill for 5 years diagnosed with depression

til final diagnosis by third consultant last August with LBD he is 67 years old

and would appear to be in later stages of Lewy Body Dementia. Been a tiring day.

Sent from my iPad

> Thank-you for your response Vivian. Love your phrase " fairy " , I can even hear

little jingle bells each time you use it! Yes, please do. Xx ps - my dad was

also originally diagnosed pd, then " re-diagnosed " probable LBD. Keep strong x

>

>

> >

> > > **

> > >

> > >

> > > 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

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

After one horrendous morning with paramedics after my husband fell and I

couldn't get him back in bed,despite trying, he is 6ft3ins and over 12stone(he

used to be 15st) I am 5ft! Have let him stay in bed to recover as he was very

sleepy, now he doesn't want to get up, hope it's not another step in

deterioration process as trying to keep him at home. My wish would be for an

understanding Doctor who was genuinely concerned about us coping at home and who

is supportive instead of only reactive when pushed. My wish would be for a

coordinated team who support you through this horrid illness, so you get help

when you need it instead of after weeks of waiting. I only get help and breaks

now as we pay privately. Husband been Ill for 5 years diagnosed with depression

til final diagnosis by third consultant last August with LBD he is 67 years old

and would appear to be in later stages of Lewy Body Dementia. Been a tiring day.

Sent from my iPad

> Thank-you for your response Vivian. Love your phrase " fairy " , I can even hear

little jingle bells each time you use it! Yes, please do. Xx ps - my dad was

also originally diagnosed pd, then " re-diagnosed " probable LBD. Keep strong x

>

>

> >

> > > **

> > >

> > >

> > > 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

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

My heart goes out to you .   I'm a secondary caregiver to my dad, Jim,

80, LBD official diagnosis Spring of 2011.  Alzeheimer diagnosis from primary

care physician for 2 years. 

 

My dad, Jim, reached a point while at home that we thought he was in his last

stages, but  that's the way LBD is.  Unpredictable!   We had the ambulance

pick him up and take him to St. ph's Behavioral Health Unit for medication

evaluation.   They placed him on Seroquel (Anti-psychotic) and Ativan

(agitation) and kept him for 2 weeks.  Mom had reached a point where she never

thought she would ever be and that was total exhaustion and physically  not

able to be his caregiver at home.  It was the hardest thing we have ever done,

but mom, me and my 3 siblings had him placed at a rehab and health unit close to

my home and work.  Dad now gets 24/7 nursing care and for several weeks

received physical therapy upper/lower extremities.    One would have thought

for 2 weeks after NH placement, he didn't have anything wrong with him.  He was

able to walk without assistance (no walker) and was as clear minded as if the

LBD had reversed.   Just

when we were feeling our guiltiest for placing him in the NH, than LBD took

another drastic change and he was confused again.  Physical Therapy was

completed and gave him a 100% on completing his regimen.   It didn't take long

after PT had stopped, that he started having tremors, shakes from PDD upper and

lower extremities.   What  I've learned is to take one day at a time. 

Tomorrow is most likely going to be different no matter what you do. 

 

My dad has fallen many times due to the PDD and LBD, with every fall causing a

little more damage because he will always fall and hit his head, because his

disease will interfere in the brain sending a message to his arms/legs to work

and he will freeze and go down.  That is what happened when we had to place him

in the behavior health unit at the hospital...because he had fallen and hit his

head and ear on the bathtub.  He, like your L.O., worsened after the fall. 

Dad developed a ear infection in the ear he hit.  We never dreamed the fall

would cause that. 

 

I wish I could give you encouraging words in relation to their condition getting

better.  All I can say is one day at a time and deal with that day the best you

can.  Always take care of your health too because when your health fails, who

will come to the forefront to take care of your L.O. like you do.  God bless

you as a caregiver. 

Pamela Hutchins 

Daughter of Jim Hubbard, PDD & LBD

________________________________

To: " LBDcaregivers " <LBDcaregivers >

Cc: " LBDcaregivers " <LBDcaregivers >

Sent: Thursday, June 7, 2012 11:00 AM

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

 

After one horrendous morning with paramedics after my husband fell and I

couldn't get him back in bed,despite trying, he is 6ft3ins and over 12stone(he

used to be 15st) I am 5ft! Have let him stay in bed to recover as he was very

sleepy, now he doesn't want to get up, hope it's not another step in

deterioration process as trying to keep him at home. My wish would be for an

understanding Doctor who was genuinely concerned about us coping at home and who

is supportive instead of only reactive when pushed. My wish would be for a

coordinated team who support you through this horrid illness, so you get help

when you need it instead of after weeks of waiting. I only get help and breaks

now as we pay privately. Husband been Ill for 5 years diagnosed with depression

til final diagnosis by third consultant last August with LBD he is 67 years old

and would appear to be in later stages of Lewy Body Dementia. Been a tiring day.

Sent from my iPad

> Thank-you for your response Vivian. Love your phrase " fairy " , I can even hear

little jingle bells each time you use it! Yes, please do. Xx ps - my dad was

also originally diagnosed pd, then " re-diagnosed " probable LBD. Keep strong x

>

>

> >

> > > **

> > >

> > >

> > > 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

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

Oh, for the days when doctors made house calls!

, I'm guessing you're in Great Britain or Australia, where the

medical system and the financing of such things as nursing homes is a bit

different from what we experience here in the U.S. Do you have any

assistance with the cost of in-home care or nursing homes? You're so small

and your husband so large, no reasonable person can expect you to be

picking him up off the floor. Alas, so often the determined care is based

on the person being cared for rather than on the caregiver.

Please don't avoid using a nursing home out of any sense of duty. You've

done your duty. If there is financial assistance to help cover the cost in

a way that makes this possible, please consider a nursing home. Some of

them can be really very nice. And a nursing home does have more of a team

caring for their residents. It was in a nursing home that we started

working with a palliative care doctor (comfort care instead of

life-prolonging) and his team. If a caregiver ever can relax, that's when

I came closer to relaxing than at any other time. It wasn't perfect.

There were days when Mom was cognizant and very aware of where she was and

it was heart breaking. But there were many more times when it took 2

people to lift her from bed to wheelchair to toilet and back to

wheelchair. (Your husband's size alone should qualify him as a 2 person

lift.)

Granted, Medicaid here in the US made it affordable to have Mom in the

nursing home. Without it, I would have had to quit my job, which was

keeping a roof over our heads so not really an option. My wish for you is

that you have financial assistance available to you that will allow you to

do the same for your husband. And a nursing home just might be the

fulfillment of your wish.

I took my first bubble bath in years - a long soak - shortly after we moved

Mom into her new safe haven. And the doctor's team took us all the way

through to Mom's passing last February and helped to make it a beautiful

and moving experience. Two things that confirmed that the nursing home was

the right thing. (:

Kate

On Thu, Jun 7, 2012 at 11:00 AM, Kane wrote:

> **

>

>

> After one horrendous morning with paramedics after my husband fell and I

> couldn't get him back in bed,despite trying, he is 6ft3ins and over

> 12stone(he used to be 15st) I am 5ft! Have let him stay in bed to recover

> as he was very sleepy, now he doesn't want to get up, hope it's not another

> step in deterioration process as trying to keep him at home. My wish would

> be for an understanding Doctor who was genuinely concerned about us coping

> at home and who is supportive instead of only reactive when pushed. My wish

> would be for a coordinated team who support you through this horrid

> illness, so you get help when you need it instead of after weeks of

> waiting. I only get help and breaks now as we pay privately. Husband been

> Ill for 5 years diagnosed with depression til final diagnosis by third

> consultant last August with LBD he is 67 years old and would appear to be

> in later stages of Lewy Body Dementia. Been a tiring day.

>

> Sent from my iPad

>

>

>

>

> > Thank-you for your response Vivian. Love your phrase " fairy " , I can even

> hear little jingle bells each time you use it! Yes, please do. Xx ps - my

> dad was also originally diagnosed pd, then " re-diagnosed " probable LBD.

> Keep strong x

> >

> >

> > >

> > > > **

> > > >

> > > >

> > > > 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

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

<Oh, for the days when doctors made house calls!>

Someone reminded me of the following:

List of Doctors + House Calls - countrywide

I am attaching this link in case of need. This information would not be easy to

find if you were looking for it. They are listed by state and is extremely

helpful:

http://aahcp.org/associations/11307/files/ProviderLocator.cfm

>

> Oh, for the days when doctors made house calls!

>

[Guest guest]

Love this thread ... when all is done, it would be nice to have all comments

saved into one document and saved in our Files section... If you don't mind I'll

gather up all the 'wishes' -- people could use it as a way of knowing what to do

to help others.

>

> 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

>

[Guest guest]

Love this thread ... when all is done, it would be nice to have all comments

saved into one document and saved in our Files section... If you don't mind I'll

gather up all the 'wishes' -- people could use it as a way of knowing what to do

to help others.

>

> 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

>

[Guest guest]

My wish would be to eliminate the worst LBD symptom my wife suffers

and that is constant nausea. She is currently taking Ondansetron 4mg

disentegrating tablets which seem to have little affect. Her regular medications

are Clonazepam & Mirtazapine.

>

> 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

>

[Guest guest]

My wish would be to eliminate the worst LBD symptom my wife suffers

and that is constant nausea. She is currently taking Ondansetron 4mg

disentegrating tablets which seem to have little affect. Her regular medications

are Clonazepam & Mirtazapine.

>

> 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

>

[Guest guest]

I am going to take you away, he said yes please with a sparkle in his eyes, it

made me laugh. So there is life in the old boy yet! He went to hospital and

All ok but he has chest infection which may be cause of his instability and

falls. Doesn't take much to knock L B D folk down.

Sent from my iPad

> Oh, for the days when doctors made house calls!

>

> , I'm guessing you're in Great Britain or Australia, where the

> medical system and the financing of such things as nursing homes is a bit

> different from what we experience here in the U.S. Do you have any

> assistance with the cost of in-home care or nursing homes? You're so small

> and your husband so large, no reasonable person can expect you to be

> picking him up off the floor. Alas, so often the determined care is based

> on the person being cared for rather than on the caregiver.

>

> Please don't avoid using a nursing home out of any sense of duty. You've

> done your duty. If there is financial assistance to help cover the cost in

> a way that makes this possible, please consider a nursing home. Some of

> them can be really very nice. And a nursing home does have more of a team

> caring for their residents. It was in a nursing home that we started

> working with a palliative care doctor (comfort care instead of

> life-prolonging) and his team. If a caregiver ever can relax, that's when

> I came closer to relaxing than at any other time. It wasn't perfect.

> There were days when Mom was cognizant and very aware of where she was and

> it was heart breaking. But there were many more times when it took 2

> people to lift her from bed to wheelchair to toilet and back to

> wheelchair. (Your husband's size alone should qualify him as a 2 person

> lift.)

>

> Granted, Medicaid here in the US made it affordable to have Mom in the

> nursing home. Without it, I would have had to quit my job, which was

> keeping a roof over our heads so not really an option. My wish for you is

> that you have financial assistance available to you that will allow you to

> do the same for your husband. And a nursing home just might be the

> fulfillment of your wish.

>

> I took my first bubble bath in years - a long soak - shortly after we moved

> Mom into her new safe haven. And the doctor's team took us all the way

> through to Mom's passing last February and helped to make it a beautiful

> and moving experience. Two things that confirmed that the nursing home was

> the right thing. (:

>

> Kate

>

> On Thu, Jun 7, 2012 at 11:00 AM, Kane wrote:

>

>> **

>>

>>

>> After one horrendous morning with paramedics after my husband fell and I

>> couldn't get him back in bed,despite trying, he is 6ft3ins and over

>> 12stone(he used to be 15st) I am 5ft! Have let him stay in bed to recover

>> as he was very sleepy, now he doesn't want to get up, hope it's not another

>> step in deterioration process as trying to keep him at home. My wish would

>> be for an understanding Doctor who was genuinely concerned about us coping

>> at home and who is supportive instead of only reactive when pushed. My wish

>> would be for a coordinated team who support you through this horrid

>> illness, so you get help when you need it instead of after weeks of

>> waiting. I only get help and breaks now as we pay privately. Husband been

>> Ill for 5 years diagnosed with depression til final diagnosis by third

>> consultant last August with LBD he is 67 years old and would appear to be

>> in later stages of Lewy Body Dementia. Been a tiring day.

>>

>> Sent from my iPad

>>

>>

>>

>>

>>> Thank-you for your response Vivian. Love your phrase " fairy " , I can even

>> hear little jingle bells each time you use it! Yes, please do. Xx ps - my

>> dad was also originally diagnosed pd, then " re-diagnosed " probable LBD.

>> Keep strong x

>>>

>>>

>>>>

>>>>> **

>>>>>

>>>>>

>>>>> 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

>>>>>

>>>>>

>>>>>

>>>>

>>>>

>>>>

[Guest guest]

I am going to take you away, he said yes please with a sparkle in his eyes, it

made me laugh. So there is life in the old boy yet! He went to hospital and

All ok but he has chest infection which may be cause of his instability and

falls. Doesn't take much to knock L B D folk down.

Sent from my iPad

> Oh, for the days when doctors made house calls!

>

> , I'm guessing you're in Great Britain or Australia, where the

> medical system and the financing of such things as nursing homes is a bit

> different from what we experience here in the U.S. Do you have any

> assistance with the cost of in-home care or nursing homes? You're so small

> and your husband so large, no reasonable person can expect you to be

> picking him up off the floor. Alas, so often the determined care is based

> on the person being cared for rather than on the caregiver.

>

> Please don't avoid using a nursing home out of any sense of duty. You've

> done your duty. If there is financial assistance to help cover the cost in

> a way that makes this possible, please consider a nursing home. Some of

> them can be really very nice. And a nursing home does have more of a team

> caring for their residents. It was in a nursing home that we started

> working with a palliative care doctor (comfort care instead of

> life-prolonging) and his team. If a caregiver ever can relax, that's when

> I came closer to relaxing than at any other time. It wasn't perfect.

> There were days when Mom was cognizant and very aware of where she was and

> it was heart breaking. But there were many more times when it took 2

> people to lift her from bed to wheelchair to toilet and back to

> wheelchair. (Your husband's size alone should qualify him as a 2 person

> lift.)

>

> Granted, Medicaid here in the US made it affordable to have Mom in the

> nursing home. Without it, I would have had to quit my job, which was

> keeping a roof over our heads so not really an option. My wish for you is

> that you have financial assistance available to you that will allow you to

> do the same for your husband. And a nursing home just might be the

> fulfillment of your wish.

>

> I took my first bubble bath in years - a long soak - shortly after we moved

> Mom into her new safe haven. And the doctor's team took us all the way

> through to Mom's passing last February and helped to make it a beautiful

> and moving experience. Two things that confirmed that the nursing home was

> the right thing. (:

>

> Kate

>

> On Thu, Jun 7, 2012 at 11:00 AM, Kane wrote:

>

>> **

>>

>>

>> After one horrendous morning with paramedics after my husband fell and I

>> couldn't get him back in bed,despite trying, he is 6ft3ins and over

>> 12stone(he used to be 15st) I am 5ft! Have let him stay in bed to recover

>> as he was very sleepy, now he doesn't want to get up, hope it's not another

>> step in deterioration process as trying to keep him at home. My wish would

>> be for an understanding Doctor who was genuinely concerned about us coping

>> at home and who is supportive instead of only reactive when pushed. My wish

>> would be for a coordinated team who support you through this horrid

>> illness, so you get help when you need it instead of after weeks of

>> waiting. I only get help and breaks now as we pay privately. Husband been

>> Ill for 5 years diagnosed with depression til final diagnosis by third

>> consultant last August with LBD he is 67 years old and would appear to be

>> in later stages of Lewy Body Dementia. Been a tiring day.

>>

>> Sent from my iPad

>>

>>

>>

>>

>>> Thank-you for your response Vivian. Love your phrase " fairy " , I can even

>> hear little jingle bells each time you use it! Yes, please do. Xx ps - my

>> dad was also originally diagnosed pd, then " re-diagnosed " probable LBD.

>> Keep strong x

>>>

>>>

>>>>

>>>>> **

>>>>>

>>>>>

>>>>> 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

>>>>>

>>>>>

>>>>>

>>>>

>>>>

>>>>

[Guest guest]

Thank Pam for your reassurance much appreciated

Sent from my iPad

> My heart goes out to you . I'm a secondary caregiver to my dad, Jim,

80, LBD official diagnosis Spring of 2011. Alzeheimer diagnosis from primary

care physician for 2 years.

>

> My dad, Jim, reached a point while at home that we thought he was in his last

stages, but that's the way LBD is. Unpredictable! We had the ambulance pick

him up and take him to St. ph's Behavioral Health Unit for medication

evaluation. They placed him on Seroquel (Anti-psychotic) and Ativan

(agitation) and kept him for 2 weeks. Mom had reached a point where she never

thought she would ever be and that was total exhaustion and physically not able

to be his caregiver at home. It was the hardest thing we have ever done, but

mom, me and my 3 siblings had him placed at a rehab and health unit close to my

home and work. Dad now gets 24/7 nursing care and for several weeks received

physical therapy upper/lower extremities. One would have thought for 2 weeks

after NH placement, he didn't have anything wrong with him. He was able to walk

without assistance (no walker) and was as clear minded as if the LBD had

reversed. Just

> when we were feeling our guiltiest for placing him in the NH, than LBD took

another drastic change and he was confused again. Physical Therapy was

completed and gave him a 100% on completing his regimen. It didn't take long

after PT had stopped, that he started having tremors, shakes from PDD upper and

lower extremities. What I've learned is to take one day at a time. Tomorrow

is most likely going to be different no matter what you do.

>

> My dad has fallen many times due to the PDD and LBD, with every fall causing a

little more damage because he will always fall and hit his head, because his

disease will interfere in the brain sending a message to his arms/legs to work

and he will freeze and go down. That is what happened when we had to place him

in the behavior health unit at the hospital...because he had fallen and hit his

head and ear on the bathtub. He, like your L.O., worsened after the fall. Dad

developed a ear infection in the ear he hit. We never dreamed the fall would

cause that.

>

> I wish I could give you encouraging words in relation to their condition

getting better. All I can say is one day at a time and deal with that day the

best you can. Always take care of your health too because when your health

fails, who will come to the forefront to take care of your L.O. like you do.

God bless you as a caregiver.

>

> Pamela Hutchins

> Daughter of Jim Hubbard, PDD & LBD

>

> ________________________________

>

> To: " LBDcaregivers " <LBDcaregivers >

> Cc: " LBDcaregivers " <LBDcaregivers >

> Sent: Thursday, June 7, 2012 11:00 AM

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

>

>

> After one horrendous morning with paramedics after my husband fell and I

couldn't get him back in bed,despite trying, he is 6ft3ins and over 12stone(he

used to be 15st) I am 5ft! Have let him stay in bed to recover as he was very

sleepy, now he doesn't want to get up, hope it's not another step in

deterioration process as trying to keep him at home. My wish would be for an

understanding Doctor who was genuinely concerned about us coping at home and who

is supportive instead of only reactive when pushed. My wish would be for a

coordinated team who support you through this horrid illness, so you get help

when you need it instead of after weeks of waiting. I only get help and breaks

now as we pay privately. Husband been Ill for 5 years diagnosed with depression

til final diagnosis by third consultant last August with LBD he is 67 years old

and would appear to be in later stages of Lewy Body Dementia. Been a tiring day.

>

> Sent from my iPad

>

>

>

> > Thank-you for your response Vivian. Love your phrase " fairy " , I can even

hear little jingle bells each time you use it! Yes, please do. Xx ps - my dad

was also originally diagnosed pd, then " re-diagnosed " probable LBD. Keep strong

x

> >

> >

> > >

> > > > **

> > > >

> > > >

> > > > 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

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

Thank Pam for your reassurance much appreciated

Sent from my iPad

> My heart goes out to you . I'm a secondary caregiver to my dad, Jim,

80, LBD official diagnosis Spring of 2011. Alzeheimer diagnosis from primary

care physician for 2 years.

>

> My dad, Jim, reached a point while at home that we thought he was in his last

stages, but that's the way LBD is. Unpredictable! We had the ambulance pick

him up and take him to St. ph's Behavioral Health Unit for medication

evaluation. They placed him on Seroquel (Anti-psychotic) and Ativan

(agitation) and kept him for 2 weeks. Mom had reached a point where she never

thought she would ever be and that was total exhaustion and physically not able

to be his caregiver at home. It was the hardest thing we have ever done, but

mom, me and my 3 siblings had him placed at a rehab and health unit close to my

home and work. Dad now gets 24/7 nursing care and for several weeks received

physical therapy upper/lower extremities. One would have thought for 2 weeks

after NH placement, he didn't have anything wrong with him. He was able to walk

without assistance (no walker) and was as clear minded as if the LBD had

reversed. Just

> when we were feeling our guiltiest for placing him in the NH, than LBD took

another drastic change and he was confused again. Physical Therapy was

completed and gave him a 100% on completing his regimen. It didn't take long

after PT had stopped, that he started having tremors, shakes from PDD upper and

lower extremities. What I've learned is to take one day at a time. Tomorrow

is most likely going to be different no matter what you do.

>

> My dad has fallen many times due to the PDD and LBD, with every fall causing a

little more damage because he will always fall and hit his head, because his

disease will interfere in the brain sending a message to his arms/legs to work

and he will freeze and go down. That is what happened when we had to place him

in the behavior health unit at the hospital...because he had fallen and hit his

head and ear on the bathtub. He, like your L.O., worsened after the fall. Dad

developed a ear infection in the ear he hit. We never dreamed the fall would

cause that.

>

> I wish I could give you encouraging words in relation to their condition

getting better. All I can say is one day at a time and deal with that day the

best you can. Always take care of your health too because when your health

fails, who will come to the forefront to take care of your L.O. like you do.

God bless you as a caregiver.

>

> Pamela Hutchins

> Daughter of Jim Hubbard, PDD & LBD

>

> ________________________________

>

> To: " LBDcaregivers " <LBDcaregivers >

> Cc: " LBDcaregivers " <LBDcaregivers >

> Sent: Thursday, June 7, 2012 11:00 AM

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

>

>

> After one horrendous morning with paramedics after my husband fell and I

couldn't get him back in bed,despite trying, he is 6ft3ins and over 12stone(he

used to be 15st) I am 5ft! Have let him stay in bed to recover as he was very

sleepy, now he doesn't want to get up, hope it's not another step in

deterioration process as trying to keep him at home. My wish would be for an

understanding Doctor who was genuinely concerned about us coping at home and who

is supportive instead of only reactive when pushed. My wish would be for a

coordinated team who support you through this horrid illness, so you get help

when you need it instead of after weeks of waiting. I only get help and breaks

now as we pay privately. Husband been Ill for 5 years diagnosed with depression

til final diagnosis by third consultant last August with LBD he is 67 years old

and would appear to be in later stages of Lewy Body Dementia. Been a tiring day.

>

> Sent from my iPad

>

>

>

> > Thank-you for your response Vivian. Love your phrase " fairy " , I can even

hear little jingle bells each time you use it! Yes, please do. Xx ps - my dad

was also originally diagnosed pd, then " re-diagnosed " probable LBD. Keep strong

x

> >

> >

> > >

> > > > **

> > > >

> > > >

> > > > 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

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

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

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

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

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

adhd5464 I am sure I recognize you from years go and welcome you back! I've

often wondered how you are doing now. You were such in integral part of this

group while caring for Millie as did did so very well. Recovery takes time. We

never truly return to who we were, hopefully evolve as better than who we were,

more caring, empathetic, intuitive.

Know you were admired for your diligence in caring for Millie and trying to find

the best solutions to meeting her needs despite your own at the time.

> > >

> > > > **

> > > >

> > > >

> > > > 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

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

adhd5464 I am sure I recognize you from years go and welcome you back! I've

often wondered how you are doing now. You were such in integral part of this

group while caring for Millie as did did so very well. Recovery takes time. We

never truly return to who we were, hopefully evolve as better than who we were,

more caring, empathetic, intuitive.

Know you were admired for your diligence in caring for Millie and trying to find

the best solutions to meeting her needs despite your own at the time.

> > >

> > > > **

> > > >

> > > >

> > > > 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

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

adhd5464 I am sure I recognize you from years go and welcome you back! I've

often wondered how you are doing now. You were such in integral part of this

group while caring for Millie as did did so very well. Recovery takes time. We

never truly return to who we were, hopefully evolve as better than who we were,

more caring, empathetic, intuitive.

Know you were admired for your diligence in caring for Millie and trying to find

the best solutions to meeting her needs despite your own at the time.

> > >

> > > > **

> > > >

> > > >

> > > > 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

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

Interesting that it seems to be a family thing. Same thing in my family.

Mom's dad was diagnosed with Alzheimers in 1965, before anybody had even

conceived of LBD. When Mom got her diagnosis, her doctor suggested that

what Grandpa had (from our descriptions) was probably also LBD. Now Mom's

brother can no longer hide his dementia. I'm pretty sure it is LBD, too.

I am gathering Mom's medical records (some docs have hoops I need to jump

through but the one that made the actual diagnosis is sending them to me

just via a phone request and has offered to talk with Uncle's doc). I

don't know if it will do any good, but I will offer my uncle's doctor

copies of Mom's records because it seems pretty obvious this is a family

thing.

My add to the wish list is that privacy laws didn't make it so dang hard to

get my LO's documents and to share them with other family members and their

doctors. Personally, I'd like to make sure that my 2 uncles and 1 aunt

have all of the information (or their kids do) because the odds aren't

looking very good for any of them.

Kate

> **

>

>

> 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

> > > >

> > > >

> > > >

> > >

> > >

> > >