RE: I am thankful for...

[Guest guest]

Reading Sherry's post about her Mom's adjustment led me to write about things I

am thankful for in this battle. I will admit that I am a person who usually

dwells on the positive and sees the glass as half full most of the time. Even

in the most difficult situations, I have found things to be thankful for that I

can remind myself about. Maybe others would like to share their's also. On

that note, I am thankful for:

1. My husband's most severe sleep disturbances have gone away and he is able to

deal with nights when he cannot sleep and he also allows me to sleep.

2. No day is the same, which means if he is totally out of it one day and more

difficult than usual, tomorrow will probably be better.

3. He no longer has episodes where he orders me out of bed at 2 am when he

wakes up and shouts, " You are not my wife! Go sleep somewhere else. "

4. He does not have the nasty disposition of some sufferers of LBD. He is

childlike, amenable, and tells me often that he loves and appreciates me even

when he thinks I am just someone who works in the house.

5. He proposes to me at least once a day.

6. He is able to stay alone for an hour or two while I shop. He is either

sleeping or gets up and sits quietly in his chair. This also allows me to go to

church every week.

The things above are what I can appreciate when I am cleaning a bathroom that he

has befouled or washing another load of pee-soaked towels that have been

underneath the potty chair by his bed.

Cassie

To: LBDcaregivers

From: upnorth@...

Date: Mon, 24 Oct 2011 20:14:24 -0400

Subject: Re: How do you respond to this?

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]

Thank you for sharing these Cassie. I have some of these too and they do

make it all worthwhile I agree

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Cassie Levy

Sent: Monday, October 24, 2011 6:29 PM

To: lbdcaregivers

Subject: RE: I am thankful for...

Reading Sherry's post about her Mom's adjustment led me to write about

things I am thankful for in this battle. I will admit that I am a person who

usually dwells on the positive and sees the glass as half full most of the

time. Even in the most difficult situations, I have found things to be

thankful for that I can remind myself about. Maybe others would like to

share their's also. On that note, I am thankful for:

1. My husband's most severe sleep disturbances have gone away and he is able

to deal with nights when he cannot sleep and he also allows me to sleep.

2. No day is the same, which means if he is totally out of it one day and

more difficult than usual, tomorrow will probably be better.

3. He no longer has episodes where he orders me out of bed at 2 am when he

wakes up and shouts, " You are not my wife! Go sleep somewhere else. "

4. He does not have the nasty disposition of some sufferers of LBD. He is

childlike, amenable, and tells me often that he loves and appreciates me

even when he thinks I am just someone who works in the house.

5. He proposes to me at least once a day.

6. He is able to stay alone for an hour or two while I shop. He is either

sleeping or gets up and sits quietly in his chair. This also allows me to go

to church every week.

The things above are what I can appreciate when I am cleaning a bathroom

that he has befouled or washing another load of pee-soaked towels that have

been underneath the potty chair by his bed.

Cassie

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

From: upnorth@... <mailto:upnorth%40owly.net>

Date: Mon, 24 Oct 2011 20:14:24 -0400

Subject: Re: How do you respond to this?

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