Re: How do you respond to this?

[Guest guest]

I would tell your mother that is has nothing to do with her current symptoms but

has everything to do with how much the lifecare community will lose if they take

on a patient diagnosed with a neurodegenerative condition. Even someone

diagnosed with Parkinson's Disease or other disorders with no dementia, are

rejected from such communities.

>

> My mother was recently rejected from an independent living/lifecare community

because of her memory issues. She was tentatively diagnosed as having DLB by a

neurologist within the past 6 months and she has declined noticeably in the past

year. (Even in the 3 months between the first neuro visit and the second one,

the neuro said, " She looks worse. "

>

> She is obsessing over the rejection from the independent living community and

her memory loss, and - being in the very early stages of dementia but not

realizing that she IS suffering from dementia - she said to me today that " If I

have such a big memory problem, then what's the point of me even being on this

earth " and " I think I should just end it all. "

>

> How do you handle a person's despair at realizing s/he is declining? What do

you say to someone in response? Help! I'm at a complete loss. She was a very

vibrant, intelligent, creative woman for most of her life, and now she can't

even figure out how to use her cell phone anymore. I just don't know what to

say to her that will help her feel better. All suggestions are welcome.

>

[Guest guest]

For the first 6-12 months after my mother went into her nursing home,

she talked about suicide CONSTANTLY. She was weepy, depressed,

absolutely bereft. We were there almost daily to try to meet her needs,

but it was like banging our heads on the wall. Nothing we could say or

do gave her comfort.

The grim reality is that she had to come to terms with the changes in

her life. It was miserable, it was grim, it infuriated and depressed

her. But the social worker explained that she would have to adjust, just

as those who are newly widowed, or those who are fired from their jobs,

or lose a child, or anything else that is life-altering and terribly

painful have to adjust. And there was nothing we or anyone else could do

to speed up that process. We could just be there for her when we could,

and give her space to come to terms with her circumstances.

After a few months she started talking about her lewies, and blamed them

for all of her problems - but that was the start of better times; her

mental status started improving fairly quickly after that. By the end of

a year, she was totally at home with her different mental capabilities

(except when she had UTIs or needed a med adjustment), and her home. It

was a long time, especially those first 6 months or so, because I was

also dealing with my misplaced (I later learned) guilt for not being

able to fix it all for her, but now, about 3.5 years later, she is happy

and vibrant (within her own reality) and truly enjoys her life, even

though she lives within each moment without much thought to past or

future. So I provide as many good moments for her, knowing they will be

forgotten within hours, but that is what her life has become and she is

happy within it.

Just to say, I understand completely what you are going through with

your mom, and how we want to fix it for them, or hasten their own

adjustment process. Of course there is despair at having to deal with

her decline, any of us would despair in such a situation, and have to

work through it, but if your mom progresses as mine did, there will be

an end to this awful period and she will grow to accept what she can

accept with her limited capabilities and have a different life.

Hope that offers some encouragement to you .

> My mother was recently rejected from an independent living/lifecare community

because of her memory issues. She was tentatively diagnosed as having DLB by a

neurologist within the past 6 months and she has declined noticeably in the past

year. (Even in the 3 months between the first neuro visit and the second one,

the neuro said, " She looks worse. "

>

> She is obsessing over the rejection from the independent living community and

her memory loss, and - being in the very early stages of dementia but not

realizing that she IS suffering from dementia - she said to me today that " If I

have such a big memory problem, then what's the point of me even being on this

earth " and " I think I should just end it all. "

>

> How do you handle a person's despair at realizing s/he is declining? What do

you say to someone in response? Help! I'm at a complete loss. She was a very

vibrant, intelligent, creative woman for most of her life, and now she can't

even figure out how to use her cell phone anymore. I just don't know what to

say to her that will help her feel better. All suggestions are welcome.

>

>

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

[Guest guest]

I'd like to present another viewpoint. Both as a caregiver and as a person

going through my own cognitive testing (tremors, memory and balance issues,

etc.).

My mother is entering the severe phase of this awful disease. Both of her

parents had dementia, her father probably had LBD, but it was 1965 and no

one had ever heard of it. Mom has seen and experienced dementia. She never

wanted to get to this stage. I understand that. I don't want to, either.

She was very clear, as her medical directive was being drawn up, that she

did not want to live like this.

Mom has been given two distinct opportunities to leave this life with fairly

little fuss. But I panicked. Each time, I took her to the hospital. Her

doctor had not advised us regarding palliative care and our family had no

support for letting her go. Yet, I am very well aware that this is what she

wanted. Letting her go would have been the most loving thing we could have

done for her. I say that knowing that her first two great-grandchildren

were born this year and that living this long has given her a chance to know

them.

Mom never wanted to live this long, particularly with any form of dementia.

But she is cursed with a physically strong body (for someone entering the

severe stages of LBD, that is). It will take a lot for her body to give

out. With all of my grandparents having some form of dementia, I have a

pretty good chance of hearing that I am heading for or entering the early

stages of dementia myself. And I don't want to ever reach the stage that

Mom is at. I want to leave this life with as much of myself intact as is

possible, as I know my mom wanted. I failed her in that and now we wait for

another illness that might take her.

Mom is now in an SNF. She has a medical team that will be very supportive

when another opportunity comes for her. I am extremely grateful for that,

as even knowing what I know, I don't know if I will have the strength to

honor her wishes on my own. But, if she had been aware of the LBD earlier

and had wanted to leave this life while she still had some control over it,

I hope I would have understood.

I hope that, if it comes to that for me, my family will understand. I may

be lucky. I have a condition, inherited from my father, that could take me

before dementia gets too severe. It is a very quick passing and something

that is somewhat in my control. I don't know for certain how my cognitive

testing will turn out, but I am guessing my odds are not the greatest. If

it turns out badly, I am very grateful that I have another medical condition

that can help me leave before things get too severe. I hope my family will

understand.

What I am saying, I think, is that if someone with LBD is talking about

suicide, maybe a calm conversation about it would be beneficial to all.

Maybe refusing to accept the possibility of this option is not in the

patient's best interest. Maybe the kindest thing is to support whatever

decision they make and let them know you love them no matter what.

The possibility that LBD could be familial and that we could each end up in

the same position as any of our parents that have this gives me an

opportunity to place myself in my mother's shoes. And I don't like it. And

I will do my darndest to never get to that point.

> **

>

>

> My mother was recently rejected from an independent living/lifecare

> community because of her memory issues. She was tentatively diagnosed as

> having DLB by a neurologist within the past 6 months and she has declined

> noticeably in the past year. (Even in the 3 months between the first neuro

> visit and the second one, the neuro said, " She looks worse. "

>

> She is obsessing over the rejection from the independent living community

> and her memory loss, and - being in the very early stages of dementia but

> not realizing that she IS suffering from dementia - she said to me today

> that " If I have such a big memory problem, then what's the point of me even

> being on this earth " and " I think I should just end it all. "

>

> How do you handle a person's despair at realizing s/he is declining? What

> do you say to someone in response? Help! I'm at a complete loss. She was a

> very vibrant, intelligent, creative woman for most of her life, and now she

> can't even figure out how to use her cell phone anymore. I just don't know

> what to say to her that will help her feel better. All suggestions are

> welcome.

>

>

>

--

Kate Knapp

Office of Information Technology

University of Minnesota

knapp@...

* " Nobody's right if everybody's wrong. " Now I know. It's from " For what

it's worth, " written by Stills and first recorded by Buffalo

Springfield*

[Guest guest]

Kate,

 

Mom's first words when she found out about dementia were that I had to help

her die. I wouldn't do that if I could and what I think happen was that she

happily lived with limited abilities until she died.  Her life wasn't bad for

the three years she was with me and it was a bit harder in the nh but she

found a way to be content there too.

 

I have no desire to live with dementia myself, but I am also aware I had more

problems with Mom's dementia than she did.  Would I want my daughter to have to

take care of me?  No!  But if well taken care of there are no worried for

them.  And I had to remember the worst she would do was forget what just

happen.  Now as caregiver!  That is a whole other story.

 

Hugs,

 

Donna

Re: [ LBDcaregivers ] How do you respond to this?

 

I'd like to present another viewpoint. Both as a caregiver and as a person

going through my own cognitive testing (tremors, memory and balance issues,

etc.).

My mother is entering the severe phase of this awful disease. Both of her

parents had dementia, her father probably had LBD , but it was 1965 and no

one had ever heard of it. Mom has seen and experienced dementia. She never

wanted to get to this stage. I understand that. I don't want to, either.

She was very clear, as her medical directive was being drawn up, that she

did not want to live like this.

Mom has been given two distinct opportunities to leave this life with fairly

little fuss. But I panicked. Each time, I took her to the hospital. Her

doctor had not advised us regarding palliative care and our family had no

support for letting her go. Yet, I am very well aware that this is what she

wanted. Letting her go would have been the most loving thing we could have

done for her. I say that knowing that her first two great-grandchildren

were born this year and that living this long has given her a chance to know

them.

Mom never wanted to live this long, particularly with any form of dementia.

But she is cursed with a physically strong body (for someone entering the

severe stages of LBD , that is). It will take a lot for her body to give

out. With all of my grandparents having some form of dementia, I have a

pretty good chance of hearing that I am heading for or entering the early

stages of dementia myself. And I don't want to ever reach the stage that

Mom is at. I want to leave this life with as much of myself intact as is

possible, as I know my mom wanted. I failed her in that and now we wait for

another illness that might take her.

Mom is now in an SNF . She has a medical team that will be very supportive

when another opportunity comes for her. I am extremely grateful for that,

as even knowing what I know, I don't know if I will have the strength to

honor her wishes on my own. But, if she had been aware of the LBD earlier

and had wanted to leave this life while she still had some control over it,

I hope I would have understood.

I hope that, if it comes to that for me, my family will understand. I may

be lucky. I have a condition, inherited from my father, that could take me

before dementia gets too severe. It is a very quick passing and something

that is somewhat in my control. I don't know for certain how my cognitive

testing will turn out, but I am guessing my odds are not the greatest. If

it turns out badly, I am very grateful that I have another medical condition

that can help me leave before things get too severe. I hope my family will

understand.

What I am saying, I think, is that if someone with LBD is talking about

suicide, maybe a calm conversation about it would be beneficial to all.

Maybe refusing to accept the possibility of this option is not in the

patient's best interest. Maybe the kindest thing is to support whatever

decision they make and let them know you love them no matter what.

The possibility that LBD could be familial and that we could each end up in

the same position as any of our parents that have this gives me an

opportunity to place myself in my mother's shoes. And I don't like it. And

I will do my darndest to never get to that point.

On Mon, Oct 24, 2011 at 5:58 PM, linda02462 < linda02462@ gmail .com > wrote:

> **

>

>

> My mother was recently rejected from an independent living/ lifecare

> community because of her memory issues. She was tentatively diagnosed as

> having DLB by a neurologist within the past 6 months and she has declined

> noticeably in the past year. (Even in the 3 months between the first neuro

> visit and the second one, the neuro said, " She looks worse. "

>

> She is obsessing over the rejection from the independent living community

> and her memory loss, and - being in the very early stages of dementia but

> not realizing that she IS suffering from dementia - she said to me today

> that " If I have such a big memory problem, then what's the point of me even

> being on this earth " and " I think I should just end it all. "

>

> How do you handle a person's despair at realizing s/he is declining? What

> do you say to someone in response? Help! I'm at a complete loss. She was a

> very vibrant, intelligent, creative woman for most of her life, and now she

> can't even figure out how to use her cell phone anymore. I just don't know

> what to say to her that will help her feel better. All suggestions are

> welcome.

>

>

>

--

Kate Knapp

Office of Information Technology

University of Minnesota

knapp @ umn . edu

* " Nobody's right if everybody's wrong. " Now I know. It's from " For what

it's worth, " written by Stills and first recorded by Buffalo

Springfield*

[Guest guest]

These two different perspectives have got me thinking. Mom is in one of the

best LTCF in the city, has a personal caregiver with her 7 days a week, has all

the meds and pain pills she wants/needs but still she is suffering – I think

we are in year 11 with LBD. Knowing this, I think I have decided for myself

that should I get dementia I would not want to have anyone prolong my life.

I’m not saying that I’d want to go in the early stages or even early middle

stages but once things begin to get more serious, and especially if I become

bed-bound and can no longer talk then I want out. Perhaps the kindest thing is

to not treat an infection but up the pain meds considerably and hope that sepsis

takes me away????? It’s a hard thing which ever way you look at it.

Before mom got sick and before watching my dad die I really didn’t understand

the Euthanasia movement. I do now.

Courage

From: twomido@...

Sent: Tuesday, October 25, 2011 12:16 PM

To: LBDcaregivers

Subject: Re: How do you respond to this?

Kate,

Mom's first words when she found out about dementia were that I had to help her

die. I wouldn't do that if I could and what I think happen was that she happily

lived with limited abilities until she died. Her life wasn't bad for the three

years she was with me and it was a bit harder in the nh but she found a way to

be content there too.

I have no desire to live with dementia myself, but I am also aware I had more

problems with Mom's dementia than she did. Would I want my daughter to have to

take care of me? No! But if well taken care of there are no worried for them.

And I had to remember the worst she would do was forget what just happen. Now

as caregiver! That is a whole other story.

Hugs,

Donna

Re: [ LBDcaregivers ] How do you respond to this?

I'd like to present another viewpoint. Both as a caregiver and as a person

going through my own cognitive testing (tremors, memory and balance issues,

etc.).

My mother is entering the severe phase of this awful disease. Both of her

parents had dementia, her father probably had LBD , but it was 1965 and no

one had ever heard of it. Mom has seen and experienced dementia. She never

wanted to get to this stage. I understand that. I don't want to, either.

She was very clear, as her medical directive was being drawn up, that she

did not want to live like this.

Mom has been given two distinct opportunities to leave this life with fairly

little fuss. But I panicked. Each time, I took her to the hospital. Her

doctor had not advised us regarding palliative care and our family had no

support for letting her go. Yet, I am very well aware that this is what she

wanted. Letting her go would have been the most loving thing we could have

done for her. I say that knowing that her first two great-grandchildren

were born this year and that living this long has given her a chance to know

them.

Mom never wanted to live this long, particularly with any form of dementia.

But she is cursed with a physically strong body (for someone entering the

severe stages of LBD , that is). It will take a lot for her body to give

out. With all of my grandparents having some form of dementia, I have a

pretty good chance of hearing that I am heading for or entering the early

stages of dementia myself. And I don't want to ever reach the stage that

Mom is at. I want to leave this life with as much of myself intact as is

possible, as I know my mom wanted. I failed her in that and now we wait for

another illness that might take her.

Mom is now in an SNF . She has a medical team that will be very supportive

when another opportunity comes for her. I am extremely grateful for that,

as even knowing what I know, I don't know if I will have the strength to

honor her wishes on my own. But, if she had been aware of the LBD earlier

and had wanted to leave this life while she still had some control over it,

I hope I would have understood.

I hope that, if it comes to that for me, my family will understand. I may

be lucky. I have a condition, inherited from my father, that could take me

before dementia gets too severe. It is a very quick passing and something

that is somewhat in my control. I don't know for certain how my cognitive

testing will turn out, but I am guessing my odds are not the greatest. If

it turns out badly, I am very grateful that I have another medical condition

that can help me leave before things get too severe. I hope my family will

understand.

What I am saying, I think, is that if someone with LBD is talking about

suicide, maybe a calm conversation about it would be beneficial to all.

Maybe refusing to accept the possibility of this option is not in the

patient's best interest. Maybe the kindest thing is to support whatever

decision they make and let them know you love them no matter what.

The possibility that LBD could be familial and that we could each end up in

the same position as any of our parents that have this gives me an

opportunity to place myself in my mother's shoes. And I don't like it. And

I will do my darndest to never get to that point.

On Mon, Oct 24, 2011 at 5:58 PM, linda02462 < linda02462@ gmail .com > wrote:

> **

>

>

> My mother was recently rejected from an independent living/ lifecare

> community because of her memory issues. She was tentatively diagnosed as

> having DLB by a neurologist within the past 6 months and she has declined

> noticeably in the past year. (Even in the 3 months between the first neuro

> visit and the second one, the neuro said, " She looks worse. "

>

> She is obsessing over the rejection from the independent living community

> and her memory loss, and - being in the very early stages of dementia but

> not realizing that she IS suffering from dementia - she said to me today

> that " If I have such a big memory problem, then what's the point of me even

> being on this earth " and " I think I should just end it all. "

>

> How do you handle a person's despair at realizing s/he is declining? What

> do you say to someone in response? Help! I'm at a complete loss. She was a

> very vibrant, intelligent, creative woman for most of her life, and now she

> can't even figure out how to use her cell phone anymore. I just don't know

> what to say to her that will help her feel better. All suggestions are

> welcome.

>

>

>

--

Kate Knapp

Office of Information Technology

University of Minnesota

knapp @ umn . edu

* " Nobody's right if everybody's wrong. " Now I know. It's from " For what

it's worth, " written by Stills and first recorded by Buffalo

Springfield*

[Guest guest]

The awful thing is that, by the time that such an exit might be considered

justifiable by some, many LBD sufferers will be past the ability to do it

for themselves. And it isn't an easy thing to ask someone who loves you to

help you with or even to decide that it's time. It's even harder for

someone who loves you to help you.

> **

>

>

> These two different perspectives have got me thinking. Mom is in one of the

> best LTCF in the city, has a personal caregiver with her 7 days a week, has

> all the meds and pain pills she wants/needs but still she is suffering – I

> think we are in year 11 with LBD. Knowing this, I think I have decided for

> myself that should I get dementia I would not want to have anyone prolong my

> life. I’m not saying that I’d want to go in the early stages or even early

> middle stages but once things begin to get more serious, and especially if I

> become bed-bound and can no longer talk then I want out. Perhaps the kindest

> thing is to not treat an infection but up the pain meds considerably and

> hope that sepsis takes me away????? It’s a hard thing which ever way you

> look at it.

> Before mom got sick and before watching my dad die I really didn’t

> understand the Euthanasia movement. I do now.

> Courage

>

> From: twomido@...

> Sent: Tuesday, October 25, 2011 12:16 PM

> To: LBDcaregivers

> Subject: Re: How do you respond to this?

>

> Kate,

>

> Mom's first words when she found out about dementia were that I had to help

> her die. I wouldn't do that if I could and what I think happen was that she

> happily lived with limited abilities until she died. Her life wasn't bad for

> the three years she was with me and it was a bit harder in the nh but she

> found a way to be content there too.

>

> I have no desire to live with dementia myself, but I am also aware I had

> more problems with Mom's dementia than she did. Would I want my daughter to

> have to take care of me? No! But if well taken care of there are no worried

> for them. And I had to remember the worst she would do was forget what just

> happen. Now as caregiver! That is a whole other story.

>

> Hugs,

>

> Donna

>

> Re: [ LBDcaregivers ] How do you respond to this?

>

> I'd like to present another viewpoint. Both as a caregiver and as a person

> going through my own cognitive testing (tremors, memory and balance issues,

>

> etc.).

>

> My mother is entering the severe phase of this awful disease. Both of her

> parents had dementia, her father probably had LBD , but it was 1965 and no

> one had ever heard of it. Mom has seen and experienced dementia. She never

> wanted to get to this stage. I understand that. I don't want to, either.

> She was very clear, as her medical directive was being drawn up, that she

> did not want to live like this.

>

> Mom has been given two distinct opportunities to leave this life with

> fairly

> little fuss. But I panicked. Each time, I took her to the hospital. Her

> doctor had not advised us regarding palliative care and our family had no

> support for letting her go. Yet, I am very well aware that this is what she

>

> wanted. Letting her go would have been the most loving thing we could have

> done for her. I say that knowing that her first two great-grandchildren

> were born this year and that living this long has given her a chance to

> know

> them.

>

> Mom never wanted to live this long, particularly with any form of dementia.

>

> But she is cursed with a physically strong body (for someone entering the

> severe stages of LBD , that is). It will take a lot for her body to give

> out. With all of my grandparents having some form of dementia, I have a

> pretty good chance of hearing that I am heading for or entering the early

> stages of dementia myself. And I don't want to ever reach the stage that

> Mom is at. I want to leave this life with as much of myself intact as is

> possible, as I know my mom wanted. I failed her in that and now we wait for

>

> another illness that might take her.

>

> Mom is now in an SNF . She has a medical team that will be very supportive

> when another opportunity comes for her. I am extremely grateful for that,

> as even knowing what I know, I don't know if I will have the strength to

> honor her wishes on my own. But, if she had been aware of the LBD earlier

> and had wanted to leave this life while she still had some control over it,

>

> I hope I would have understood.

>

> I hope that, if it comes to that for me, my family will understand. I may

> be lucky. I have a condition, inherited from my father, that could take me

> before dementia gets too severe. It is a very quick passing and something

> that is somewhat in my control. I don't know for certain how my cognitive

> testing will turn out, but I am guessing my odds are not the greatest. If

> it turns out badly, I am very grateful that I have another medical

> condition

> that can help me leave before things get too severe. I hope my family will

> understand.

>

> What I am saying, I think, is that if someone with LBD is talking about

> suicide, maybe a calm conversation about it would be beneficial to all.

> Maybe refusing to accept the possibility of this option is not in the

> patient's best interest. Maybe the kindest thing is to support whatever

> decision they make and let them know you love them no matter what.

>

> The possibility that LBD could be familial and that we could each end up in

>

> the same position as any of our parents that have this gives me an

> opportunity to place myself in my mother's shoes. And I don't like it. And

> I will do my darndest to never get to that point.

>

> On Mon, Oct 24, 2011 at 5:58 PM, linda02462 < linda02462@ gmail .com >

> wrote:

>

> > **

> >

> >

> > My mother was recently rejected from an independent living/ lifecare

> > community because of her memory issues. She was tentatively diagnosed as

> > having DLB by a neurologist within the past 6 months and she has declined

>

> > noticeably in the past year. (Even in the 3 months between the first

> neuro

> > visit and the second one, the neuro said, " She looks worse. "

> >

> > She is obsessing over the rejection from the independent living community

>

> > and her memory loss, and - being in the very early stages of dementia but

>

> > not realizing that she IS suffering from dementia - she said to me today

> > that " If I have such a big memory problem, then what's the point of me

> even

> > being on this earth " and " I think I should just end it all. "

> >

> > How do you handle a person's despair at realizing s/he is declining? What

>

> > do you say to someone in response? Help! I'm at a complete loss. She was

> a

> > very vibrant, intelligent, creative woman for most of her life, and now

> she

> > can't even figure out how to use her cell phone anymore. I just don't

> know

> > what to say to her that will help her feel better. All suggestions are

> > welcome.

> >

> >

> >

>

> --

> Kate Knapp

> Office of Information Technology

> University of Minnesota

> knapp @ umn . edu

>

>

> * " Nobody's right if everybody's wrong. " Now I know. It's from " For what

> it's worth, " written by Stills and first recorded by Buffalo

> Springfield*

>

>

[Guest guest]

Dear Kate,

Thank you for your response. I feel the same way - I don't want to live like

that either. My Mom is in the last stage of the disease, and it's not fun, to

say the least. But, I know that she wants to live... that was always her point

of view. All we can do is to try to make the rest of her journey as peaceful

and 'enjoyable' as possible.

Hugs from NY,

Helene

(Mom 77, about 11 years with LBD)

>

> > **

> >

> >

> > My mother was recently rejected from an independent living/lifecare

> > community because of her memory issues. She was tentatively diagnosed as

> > having DLB by a neurologist within the past 6 months and she has declined

> > noticeably in the past year. (Even in the 3 months between the first neuro

> > visit and the second one, the neuro said, " She looks worse. "

> >

> > She is obsessing over the rejection from the independent living community

> > and her memory loss, and - being in the very early stages of dementia but

> > not realizing that she IS suffering from dementia - she said to me today

> > that " If I have such a big memory problem, then what's the point of me even

> > being on this earth " and " I think I should just end it all. "

> >

> > How do you handle a person's despair at realizing s/he is declining? What

> > do you say to someone in response? Help! I'm at a complete loss. She was a

> > very vibrant, intelligent, creative woman for most of her life, and now she

> > can't even figure out how to use her cell phone anymore. I just don't know

> > what to say to her that will help her feel better. All suggestions are

> > welcome.

> >

> >

> >

>

>

>

> --

> Kate Knapp

> Office of Information Technology

> University of Minnesota

> knapp@...

>

>

> * " Nobody's right if everybody's wrong. " Now I know. It's from " For what

> it's worth, " written by Stills and first recorded by Buffalo

> Springfield*

>

>

>

[Guest guest]

I'm with you, dear Courage!

Sending you hugs,

Helene

>

> > **

> >

> >

> > My mother was recently rejected from an independent living/ lifecare

> > community because of her memory issues. She was tentatively diagnosed as

> > having DLB by a neurologist within the past 6 months and she has declined

> > noticeably in the past year. (Even in the 3 months between the first neuro

> > visit and the second one, the neuro said, " She looks worse. "

> >

> > She is obsessing over the rejection from the independent living community

> > and her memory loss, and - being in the very early stages of dementia but

> > not realizing that she IS suffering from dementia - she said to me today

> > that " If I have such a big memory problem, then what's the point of me even

> > being on this earth " and " I think I should just end it all. "

> >

> > How do you handle a person's despair at realizing s/he is declining? What

> > do you say to someone in response? Help! I'm at a complete loss. She was a

> > very vibrant, intelligent, creative woman for most of her life, and now she

> > can't even figure out how to use her cell phone anymore. I just don't know

> > what to say to her that will help her feel better. All suggestions are

> > welcome.

> >

> >

> >

>

> --

> Kate Knapp

> Office of Information Technology

> University of Minnesota

> knapp @ umn . edu

>

>

> * " Nobody's right if everybody's wrong. " Now I know. It's from " For what

> it's worth, " written by Stills and first recorded by Buffalo

> Springfield*

>

>

[Guest guest]

I can totally understand you. Sending you strength.

Re: How do you respond to this?

>

> Kate,

>

> Mom's first words when she found out about dementia were that I had to

> help

> her die. I wouldn't do that if I could and what I think happen was that

> she

> happily lived with limited abilities until she died. Her life wasn't bad

> for

> the three years she was with me and it was a bit harder in the nh but she

> found a way to be content there too.

>

> I have no desire to live with dementia myself, but I am also aware I had

> more problems with Mom's dementia than she did. Would I want my daughter

> to

> have to take care of me? No! But if well taken care of there are no

> worried

> for them. And I had to remember the worst she would do was forget what

> just

> happen. Now as caregiver! That is a whole other story.

>

> Hugs,

>

> Donna

>

> Re: [ LBDcaregivers ] How do you respond to this?

>

> I'd like to present another viewpoint. Both as a caregiver and as a person

> going through my own cognitive testing (tremors, memory and balance

> issues,

>

> etc.).

>

> My mother is entering the severe phase of this awful disease. Both of her

> parents had dementia, her father probably had LBD , but it was 1965 and no

> one had ever heard of it. Mom has seen and experienced dementia. She never

> wanted to get to this stage. I understand that. I don't want to, either.

> She was very clear, as her medical directive was being drawn up, that she

> did not want to live like this.

>

> Mom has been given two distinct opportunities to leave this life with

> fairly

> little fuss. But I panicked. Each time, I took her to the hospital. Her

> doctor had not advised us regarding palliative care and our family had no

> support for letting her go. Yet, I am very well aware that this is what

> she

>

> wanted. Letting her go would have been the most loving thing we could have

> done for her. I say that knowing that her first two great-grandchildren

> were born this year and that living this long has given her a chance to

> know

> them.

>

> Mom never wanted to live this long, particularly with any form of

> dementia.

>

> But she is cursed with a physically strong body (for someone entering the

> severe stages of LBD , that is). It will take a lot for her body to give

> out. With all of my grandparents having some form of dementia, I have a

> pretty good chance of hearing that I am heading for or entering the early

> stages of dementia myself. And I don't want to ever reach the stage that

> Mom is at. I want to leave this life with as much of myself intact as is

> possible, as I know my mom wanted. I failed her in that and now we wait

> for

>

> another illness that might take her.

>

> Mom is now in an SNF . She has a medical team that will be very supportive

> when another opportunity comes for her. I am extremely grateful for that,

> as even knowing what I know, I don't know if I will have the strength to

> honor her wishes on my own. But, if she had been aware of the LBD earlier

> and had wanted to leave this life while she still had some control over

> it,

>

> I hope I would have understood.

>

> I hope that, if it comes to that for me, my family will understand. I may

> be lucky. I have a condition, inherited from my father, that could take me

> before dementia gets too severe. It is a very quick passing and something

> that is somewhat in my control. I don't know for certain how my cognitive

> testing will turn out, but I am guessing my odds are not the greatest. If

> it turns out badly, I am very grateful that I have another medical

> condition

> that can help me leave before things get too severe. I hope my family will

> understand.

>

> What I am saying, I think, is that if someone with LBD is talking about

> suicide, maybe a calm conversation about it would be beneficial to all.

> Maybe refusing to accept the possibility of this option is not in the

> patient's best interest. Maybe the kindest thing is to support whatever

> decision they make and let them know you love them no matter what.

>

> The possibility that LBD could be familial and that we could each end up

> in

>

> the same position as any of our parents that have this gives me an

> opportunity to place myself in my mother's shoes. And I don't like it. And

> I will do my darndest to never get to that point.

>

> On Mon, Oct 24, 2011 at 5:58 PM, linda02462 < linda02462@ gmail .com >

> wrote:

>

> > **

> >

> >

> > My mother was recently rejected from an independent living/ lifecare

> > community because of her memory issues. She was tentatively diagnosed as

> > having DLB by a neurologist within the past 6 months and she has

> > declined

>

> > noticeably in the past year. (Even in the 3 months between the first

> neuro

> > visit and the second one, the neuro said, " She looks worse. "

> >

> > She is obsessing over the rejection from the independent living

> > community

>

> > and her memory loss, and - being in the very early stages of dementia

> > but

>

> > not realizing that she IS suffering from dementia - she said to me today

> > that " If I have such a big memory problem, then what's the point of me

> even

> > being on this earth " and " I think I should just end it all. "

> >

> > How do you handle a person's despair at realizing s/he is declining?

> > What

>

> > do you say to someone in response? Help! I'm at a complete loss. She was

> a

> > very vibrant, intelligent, creative woman for most of her life, and now

> she

> > can't even figure out how to use her cell phone anymore. I just don't

> know

> > what to say to her that will help her feel better. All suggestions are

> > welcome.

> >

> >

> >

>

> --

> Kate Knapp

> Office of Information Technology

> University of Minnesota

> knapp @ umn . edu

>

>

> * " Nobody's right if everybody's wrong. " Now I know. It's from " For what

> it's worth, " written by Stills and first recorded by Buffalo

> Springfield*

>

>

[Guest guest]

I've looked at it as a terminal illness and I've wondered about this. Not a

nice one, probably one of the worse I've known but I lost a good friend to

ALS also and that was pretty grim too. I have wondered, as my mil was

diagnosed, when the social workers or doctors would come and have the

serious talk with her to tell them she has a terminal non curable illness,

that they will help to make her as comfortable as possible but there is no

cure known yet and you have an average of so many years and here's some

information and resources to go get some support. Now they had some of

this sort of conversation with US but now with my mil. It had been up to us

to talk with her about it and continue to. I wonder, isn't anyone getting

counseling to help them face the facts of what's happening to them? Even

people with moderate dementia understand some things and can discuss them

and talk about how they feel about it. Doctors do this for people with

cancer. Why not for LBD?

I have wondered if people with dementia are being marginalized - assumed

that they can't understand. Clearly they can and do and are depressed about

their increasing impairments, about the isolation they are finding in their

lives from the world of their friends and of " normal " everyday activities

and such. Fear of what will happen to them, of being a burden on a loved

one or children, of where will they live and who will care for them. Yes

there is planning and so on but I have seen very little support for talking

about feelings of being diagnosed with an illness like LBD - for the

patients. I hope that in more populated areas than where we live there are

some good things going on for people with this illness!

I have tried to get a social worker through home health to come and talk

with my mil about her feelings and such. She just smiled and said " I'm

fine, I don't need to talk to anyone but thank you anyway. " She would

have said the same thing 20 years earlier before any of this. I just

thought someone professional would do a better job but if she won't talk to

them I'm it. When she says she wants to quit I acknowledge what she says.

I can't help her do it but I tell her if she really wants to quit it's ok we

won't do any of this eating and drinking anymore if she doesn't want to. I

do my best to talk with her about her feelings about her illness and does it

make her sad and so on. I reassure her a lot. I let her know how well

she's doing. Most of all I listen and let her know that I hear what she is

saying and that I understand and try to validate her feelings. I can't fix

it, I sure wish I could, but I try to help find adaptations for her as much

as can be. Sometimes we have some pretty good conversations. How much is

getting through I can't say but I do know some does get through even at this

late stage. It is hard for me to step back from the feelings I have and be

there for my mil. But that is what I'm doing each day - this is her journey

and I'm along to help make it as easy/gentle/comfortable as possible and

often that is more like being a coach than a family member.

Kublar Ross wrote a popular book, " On Death and Dying " that covers

a lot of the many phase of emotion we go through when faced with this. I

have seen my mil go through these phases several times and she's STILL going

through them because unfortunately the dementia causes her to forget that

she has this illness and so on. These phases of grief happen when facing

one's decline and death - there's no set way they happen and everyone is

different. I have certainly seen them with my mil. At some point there is

acceptance and sometimes a desire to make the best of it - that is what I

try to get to with my mil each time we go through these things. So far it's

working but when she really can't get out of bed and perhaps even worse I

don't know what we're going to do. If it reaches that stage she can't move

and doesn't know who we are and so on how will that be then? It scares me

to think. Maybe counseling would help your mother some? Maybe there is

a support group of others with the illness? And wasn't there at least one

online blog by someone suffering this? Would it help her to know about

others with the illness and how they are managing with it?

This is really rambling but I hope it helps some.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of linda02462

Sent: Monday, October 24, 2011 3:59 PM

To: LBDcaregivers

Subject: How do you respond to this?

My mother was recently rejected from an independent living/lifecare

community because of her memory issues. She was tentatively diagnosed as

having DLB by a neurologist within the past 6 months and she has declined

noticeably in the past year. (Even in the 3 months between the first neuro

visit and the second one, the neuro said, " She looks worse. "

She is obsessing over the rejection from the independent living community

and her memory loss, and - being in the very early stages of dementia but

not realizing that she IS suffering from dementia - she said to me today

that " If I have such a big memory problem, then what's the point of me even

being on this earth " and " I think I should just end it all. "

How do you handle a person's despair at realizing s/he is declining? What do

you say to someone in response? Help! I'm at a complete loss. She was a very

vibrant, intelligent, creative woman for most of her life, and now she can't

even figure out how to use her cell phone anymore. I just don't know what to

say to her that will help her feel better. All suggestions are welcome.

__________ Information from ESET Smart Security, version of virus signature

database 6571 (20111024) __________

The message was checked by ESET Smart Security.

http://www.eset.com

[Guest guest]

For the past four years, my sister has been seeing the neuropsychologist that

helped in her original diagnosis every 3 - 6 weeks to help her with the fear,

anxiety and some immediate family issues. I go with her to each session so that

the information being shared is accurate, that all symptoms she's experiencing

can be documented properly in her medical record, and that suggestions made by

the doctor can be addressed once we leave. She has been an invaluable asset in

this journey.

In addition, her children have met with a LCSW (Licensed Clinical Social Worker)

that works in the Chronic Care/Palliative Care Dept of our Kaiser Health Clinic

to help them deal with the diagnosis (they are in their 20s and early 30s.

It takes a network of professionals working with her family and friends to keep

this journey on a steady path.

>

> I've looked at it as a terminal illness and I've wondered about this. Not a

> nice one, probably one of the worse I've known but I lost a good friend to

> ALS also and that was pretty grim too. I have wondered, as my mil was

> diagnosed, when the social workers or doctors would come and have the

> serious talk with her to tell them she has a terminal non curable illness,

> that they will help to make her as comfortable as possible but there is no

> cure known yet and you have an average of so many years and here's some

> information and resources to go get some support. Now they had some of

> this sort of conversation with US but now with my mil. It had been up to us

> to talk with her about it and continue to. I wonder, isn't anyone getting

> counseling to help them face the facts of what's happening to them? Even

> people with moderate dementia understand some things and can discuss them

> and talk about how they feel about it. Doctors do this for people with

> cancer. Why not for LBD?

>

>

>

> I have wondered if people with dementia are being marginalized - assumed

> that they can't understand. Clearly they can and do and are depressed about

> their increasing impairments, about the isolation they are finding in their

> lives from the world of their friends and of " normal " everyday activities

> and such. Fear of what will happen to them, of being a burden on a loved

> one or children, of where will they live and who will care for them. Yes

> there is planning and so on but I have seen very little support for talking

> about feelings of being diagnosed with an illness like LBD - for the

> patients. I hope that in more populated areas than where we live there are

> some good things going on for people with this illness!

>

>

>

> I have tried to get a social worker through home health to come and talk

> with my mil about her feelings and such. She just smiled and said " I'm

> fine, I don't need to talk to anyone but thank you anyway. " She would

> have said the same thing 20 years earlier before any of this. I just

> thought someone professional would do a better job but if she won't talk to

> them I'm it. When she says she wants to quit I acknowledge what she says.

> I can't help her do it but I tell her if she really wants to quit it's ok we

> won't do any of this eating and drinking anymore if she doesn't want to. I

> do my best to talk with her about her feelings about her illness and does it

> make her sad and so on. I reassure her a lot. I let her know how well

> she's doing. Most of all I listen and let her know that I hear what she is

> saying and that I understand and try to validate her feelings. I can't fix

> it, I sure wish I could, but I try to help find adaptations for her as much

> as can be. Sometimes we have some pretty good conversations. How much is

> getting through I can't say but I do know some does get through even at this

> late stage. It is hard for me to step back from the feelings I have and be

> there for my mil. But that is what I'm doing each day - this is her journey

> and I'm along to help make it as easy/gentle/comfortable as possible and

> often that is more like being a coach than a family member.

>

>

>

> Kublar Ross wrote a popular book, " On Death and Dying " that covers

> a lot of the many phase of emotion we go through when faced with this. I

> have seen my mil go through these phases several times and she's STILL going

> through them because unfortunately the dementia causes her to forget that

> she has this illness and so on. These phases of grief happen when facing

> one's decline and death - there's no set way they happen and everyone is

> different. I have certainly seen them with my mil. At some point there is

> acceptance and sometimes a desire to make the best of it - that is what I

> try to get to with my mil each time we go through these things. So far it's

> working but when she really can't get out of bed and perhaps even worse I

> don't know what we're going to do. If it reaches that stage she can't move

> and doesn't know who we are and so on how will that be then? It scares me

> to think. Maybe counseling would help your mother some? Maybe there is

> a support group of others with the illness? And wasn't there at least one

> online blog by someone suffering this? Would it help her to know about

> others with the illness and how they are managing with it?

>

>

>

> This is really rambling but I hope it helps some.

>

>

>

> Dorothy

>

>

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of linda02462

> Sent: Monday, October 24, 2011 3:59 PM

> To: LBDcaregivers

> Subject: How do you respond to this?

>

>

>

>

>

> My mother was recently rejected from an independent living/lifecare

> community because of her memory issues. She was tentatively diagnosed as

> having DLB by a neurologist within the past 6 months and she has declined

> noticeably in the past year. (Even in the 3 months between the first neuro

> visit and the second one, the neuro said, " She looks worse. "

>

> She is obsessing over the rejection from the independent living community

> and her memory loss, and - being in the very early stages of dementia but

> not realizing that she IS suffering from dementia - she said to me today

> that " If I have such a big memory problem, then what's the point of me even

> being on this earth " and " I think I should just end it all. "

>

> How do you handle a person's despair at realizing s/he is declining? What do

> you say to someone in response? Help! I'm at a complete loss. She was a very

> vibrant, intelligent, creative woman for most of her life, and now she can't

> even figure out how to use her cell phone anymore. I just don't know what to

> say to her that will help her feel better. All suggestions are welcome.

>

>

>

>

>

> __________ Information from ESET Smart Security, version of virus signature

> database 6571 (20111024) __________

>

>

>

> The message was checked by ESET Smart Security.

>

>

>

> http://www.eset.com

>

>

>

>

[Guest guest]

There are many important issues that this post raises. One of the easiest is

that of looking at Kubler-Ross's stages of dying. According to her,

she never visioned the stages as cast in concrete. And in my 9 years as a

bedside hospice volunteer, I've never seen then systematically occur. Patients

go through them at various times in their journey, and for some, certain phases

are skipped completely. Understanding that things are constantly in flux is

probably the most important lesson learned from Kubler-Ross.

The most difficult issue involves how to help a loved one's journey as their

cognitive abilities diminish. As our population lives longer, the number of

patients I serve with cognitive problems has increased dramatically. Although

every one is different, here are some specific things I've found helpful.

-keep things simple both in activities and the language you use.

-understand that why basic needs are still there, they may be expressed in ways

you don't understand

-focus on what they are still able to understand and do

-don't rely just on language to convey your love and understanding

-surround them with objects and sounds that have a positive relationship to

their past

-as cognition becomes more impaired what is lost is the internal ability to

structure their world and make sense out of it. You can help by using graphic

representations of their world (e.g., pictures of objects, daily living

instructions, etc.)

-provide them with enough time to respond since their ability to process

information will be increasing impaired.

hope this helps.

Stan

-

[Guest guest]

Stan: This is very helpful and I agree with it, having been present at some

point in the dying process of several of those near and dear.

I have been reading the posts of those talking about end of life issues and the

whys and wherefores and timing, etc. I must preface this by saying this is an

individual thing and I do not judge ANYONE for the decisions they make at such a

time.

In our case, my husband and I were both raised with a strong religious faith, so

anything akin to euthanasia would not be considered as we both believe that

there is a purpose for life as long as breath is in the body. However, with

modern medicine being what it is, there are many gray areas. When my uncle was

near death from pancreatic cancer and in extreme pain and asked for relief, the

doctor would not give him any more morphine, but his home nurse told his

daughter that she would get it for him. His daughter administered the shot and

he died shortly thereafter. Did this shorten his life by a few hours, at most?

Quite possibly, but I don't see it as euthanisia because he was clearly dying

and in great suffering. I think it is a sin not to relieve that suffering where

possible.

My father, beginning the last stages of Alzheimer's, contracted pneumonia. The

man who came into his hospital room to evaluate his oxygen level told us he was

losing ground and discussed a breathing apparatus, but said he refused to do the

same for his father because his father had laid down the law beforehand that he

never wanted to be dependent on one. He said the decision was ours, but we

could simply make him comfortable and let nature take it's course because the

meds clearly weren't working. That's exactly what we did.

At each stage of the process, there are numerous decisions to be made--all

because of the advances in medicine. That is why I pray daily for wisdom in

dealing with my husband's LBD. Before my husband became ill, he made it quite

clear that he was not afraid of death and that no heroic measures were to be

taken in the event he became incapacitated. However, as the illness progresses,

I see that he is still enjoying his life as it is because of his complete lack

of mental awareness as to his true condition. I pray that when that is no

longer the case, he will simply slip away quietly as my father did.

Cassie Levy

To: LBDcaregivers

From: stan@...

Date: Fri, 28 Oct 2011 06:13:04 -0700

Subject: Re: How do you respond to this?

There are many important issues that this post raises. One of the easiest

is that of looking at Kubler-Ross's stages of dying. According to her,

she never visioned the stages as cast in concrete. And in my 9 years as a

bedside hospice volunteer, I've never seen then systematically occur. Patients

go through them at various times in their journey, and for some, certain phases

are skipped completely. Understanding that things are constantly in flux is

probably the most important lesson learned from Kubler-Ross.

The most difficult issue involves how to help a loved one's journey as their

cognitive abilities diminish. As our population lives longer, the number of

patients I serve with cognitive problems has increased dramatically. Although

every one is different, here are some specific things I've found helpful.

-keep things simple both in activities and the language you use.

-understand that why basic needs are still there, they may be expressed in ways

you don't understand

-focus on what they are still able to understand and do

-don't rely just on language to convey your love and understanding

-surround them with objects and sounds that have a positive relationship to

their past

-as cognition becomes more impaired what is lost is the internal ability to

structure their world and make sense out of it. You can help by using graphic

representations of their world (e.g., pictures of objects, daily living

instructions, etc.)

-provide them with enough time to respond since their ability to process

information will be increasing impaired.

hope this helps.

Stan

-

[Guest guest]

This is helpful information. I saw my Dad's sister in hospice place the

afternoon she died and she had the something-stokes breathing. So in my mind,

that breathing means death is iminent - I never knew about other stages. Once

you hear it or watch someone with it, you won't forget. Everyone stayed, but I

had to leave, and I really regret leaving.

H