Re: I'm terrified to be here again!

[Guest guest]

Hi - your words were identical to mine - I couldn't believe it could happen

again as well - my mother passed away in l998 with alz now my husband has been

diagnosed with LBD (mixed with vascular and frontal temporal).  He also was

never the same after open heart surgery (21 years ago - quadruple bypass). Makes

you wonder doesn't it?

It stayed in a very mild stage for years and certainly he could fool others but

I knew things were not the same.  Then approx. 5 years ago things started

getting worse and it has been down hill since then.  Little or no speech -

double incontinence - mobility problems - swallowing difficulties - in other

words he is advanced.  I have kept him at home with me but my greatest fear

right now is his mobility is slipping and I'm not sure how I will deal with this

if he can no longer walk.

 The only positive thing I can think of to say about going again down this

horrible path again is that we may have learned some things about the disease -

the things we can do that help and that eventually the person does find peace. I

remember one of the last questions my mother asked was what do you want for me?

 my answer peace.

________________________________

To: LBDcaregivers

Sent: Thursday, April 5, 2012 9:45:53 PM

Subject: I'm terrified to be here again!

 

I was a member here some years ago after my Dad was diagnosed with this horrible

thing, awhile after having pacemaker surgery. We didn't see it at the time, but

looking back, right after the surgery he was different.

Dad spent about seven years in a nursing home and passed away in 2010 at age 72.

But he was lost to us way before that; he was always happy to see us, but hadn't

spoken in at least a year. I think in the end, I blame the meds for his lack of

communication. But I know he would have eventually been lost to us with or

without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

She had surgery two days later, had the hip replaced. So it's been nearly three

weeks. My calm, strong Mom who was shoveling snow the day before has been in a

hospital bed for over two weeks now. Her muscles are hanging off her body. More

importantly, her brain is gone off the deep end. Many of those days in hospital,

she's confused about where/why she's there. She's a light sleeper, and if she

doesn't get a good night's sleep I've seen that she's really confused the next

day.

It's been a roller coaster. Some days are good, some not.

Yesterday she was like herself, only the second time I've seen her as herself. I

went to the hospital very early this morning, again she was like herself. I was

hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

[Guest guest]

Hi - your words were identical to mine - I couldn't believe it could happen

again as well - my mother passed away in l998 with alz now my husband has been

diagnosed with LBD (mixed with vascular and frontal temporal).  He also was

never the same after open heart surgery (21 years ago - quadruple bypass). Makes

you wonder doesn't it?

It stayed in a very mild stage for years and certainly he could fool others but

I knew things were not the same.  Then approx. 5 years ago things started

getting worse and it has been down hill since then.  Little or no speech -

double incontinence - mobility problems - swallowing difficulties - in other

words he is advanced.  I have kept him at home with me but my greatest fear

right now is his mobility is slipping and I'm not sure how I will deal with this

if he can no longer walk.

 The only positive thing I can think of to say about going again down this

horrible path again is that we may have learned some things about the disease -

the things we can do that help and that eventually the person does find peace. I

remember one of the last questions my mother asked was what do you want for me?

 my answer peace.

________________________________

To: LBDcaregivers

Sent: Thursday, April 5, 2012 9:45:53 PM

Subject: I'm terrified to be here again!

 

I was a member here some years ago after my Dad was diagnosed with this horrible

thing, awhile after having pacemaker surgery. We didn't see it at the time, but

looking back, right after the surgery he was different.

Dad spent about seven years in a nursing home and passed away in 2010 at age 72.

But he was lost to us way before that; he was always happy to see us, but hadn't

spoken in at least a year. I think in the end, I blame the meds for his lack of

communication. But I know he would have eventually been lost to us with or

without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

She had surgery two days later, had the hip replaced. So it's been nearly three

weeks. My calm, strong Mom who was shoveling snow the day before has been in a

hospital bed for over two weeks now. Her muscles are hanging off her body. More

importantly, her brain is gone off the deep end. Many of those days in hospital,

she's confused about where/why she's there. She's a light sleeper, and if she

doesn't get a good night's sleep I've seen that she's really confused the next

day.

It's been a roller coaster. Some days are good, some not.

Yesterday she was like herself, only the second time I've seen her as herself. I

went to the hospital very early this morning, again she was like herself. I was

hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

[Guest guest]

Hi - your words were identical to mine - I couldn't believe it could happen

again as well - my mother passed away in l998 with alz now my husband has been

diagnosed with LBD (mixed with vascular and frontal temporal).  He also was

never the same after open heart surgery (21 years ago - quadruple bypass). Makes

you wonder doesn't it?

It stayed in a very mild stage for years and certainly he could fool others but

I knew things were not the same.  Then approx. 5 years ago things started

getting worse and it has been down hill since then.  Little or no speech -

double incontinence - mobility problems - swallowing difficulties - in other

words he is advanced.  I have kept him at home with me but my greatest fear

right now is his mobility is slipping and I'm not sure how I will deal with this

if he can no longer walk.

 The only positive thing I can think of to say about going again down this

horrible path again is that we may have learned some things about the disease -

the things we can do that help and that eventually the person does find peace. I

remember one of the last questions my mother asked was what do you want for me?

 my answer peace.

________________________________

To: LBDcaregivers

Sent: Thursday, April 5, 2012 9:45:53 PM

Subject: I'm terrified to be here again!

 

I was a member here some years ago after my Dad was diagnosed with this horrible

thing, awhile after having pacemaker surgery. We didn't see it at the time, but

looking back, right after the surgery he was different.

Dad spent about seven years in a nursing home and passed away in 2010 at age 72.

But he was lost to us way before that; he was always happy to see us, but hadn't

spoken in at least a year. I think in the end, I blame the meds for his lack of

communication. But I know he would have eventually been lost to us with or

without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

She had surgery two days later, had the hip replaced. So it's been nearly three

weeks. My calm, strong Mom who was shoveling snow the day before has been in a

hospital bed for over two weeks now. Her muscles are hanging off her body. More

importantly, her brain is gone off the deep end. Many of those days in hospital,

she's confused about where/why she's there. She's a light sleeper, and if she

doesn't get a good night's sleep I've seen that she's really confused the next

day.

It's been a roller coaster. Some days are good, some not.

Yesterday she was like herself, only the second time I've seen her as herself. I

went to the hospital very early this morning, again she was like herself. I was

hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

[Guest guest]

This is the main reason I am reticent to even think about getting married again.

I absolutely do not want to have to go through this again with another man. And

the thought that it may be me has also occurred to me. Wouldn't want someone to

have to take care of me in that condition. Thank God my Mom is 88 and clear of

mind and reasonably mobile. If she does go down that path, it won't be a long

road due to her age.

So, I understand totally why you are terrified. But you do know " the drill. "

Each case is unique and so take each day as it comes. Worrying about the future

is like going through it twice or worrying about something that never happens,

so it is futile.

Cassie (primary caregiver to husband Maurice who passed away from LBD on

12/22/2011)

To: LBDcaregivers

From: kdorsey@...

Date: Fri, 6 Apr 2012 01:45:53 +0000

Subject: I'm terrified to be here again!

I was a member here some years ago after my Dad was diagnosed with this

horrible thing, awhile after having pacemaker surgery. We didn't see it at the

time, but looking back, right after the surgery he was different.

Dad spent about seven years in a nursing home and passed away in 2010 at age 72.

But he was lost to us way before that; he was always happy to see us, but hadn't

spoken in at least a year. I think in the end, I blame the meds for his lack of

communication. But I know he would have eventually been lost to us with or

without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

She had surgery two days later, had the hip replaced. So it's been nearly three

weeks. My calm, strong Mom who was shoveling snow the day before has been in a

hospital bed for over two weeks now. Her muscles are hanging off her body. More

importantly, her brain is gone off the deep end. Many of those days in hospital,

she's confused about where/why she's there. She's a light sleeper, and if she

doesn't get a good night's sleep I've seen that she's really confused the next

day.

It's been a roller coaster. Some days are good, some not.

Yesterday she was like herself, only the second time I've seen her as herself. I

went to the hospital very early this morning, again she was like herself. I was

hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

[Guest guest]

This is the main reason I am reticent to even think about getting married again.

I absolutely do not want to have to go through this again with another man. And

the thought that it may be me has also occurred to me. Wouldn't want someone to

have to take care of me in that condition. Thank God my Mom is 88 and clear of

mind and reasonably mobile. If she does go down that path, it won't be a long

road due to her age.

So, I understand totally why you are terrified. But you do know " the drill. "

Each case is unique and so take each day as it comes. Worrying about the future

is like going through it twice or worrying about something that never happens,

so it is futile.

Cassie (primary caregiver to husband Maurice who passed away from LBD on

12/22/2011)

To: LBDcaregivers

From: kdorsey@...

Date: Fri, 6 Apr 2012 01:45:53 +0000

Subject: I'm terrified to be here again!

I was a member here some years ago after my Dad was diagnosed with this

horrible thing, awhile after having pacemaker surgery. We didn't see it at the

time, but looking back, right after the surgery he was different.

Dad spent about seven years in a nursing home and passed away in 2010 at age 72.

But he was lost to us way before that; he was always happy to see us, but hadn't

spoken in at least a year. I think in the end, I blame the meds for his lack of

communication. But I know he would have eventually been lost to us with or

without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

She had surgery two days later, had the hip replaced. So it's been nearly three

weeks. My calm, strong Mom who was shoveling snow the day before has been in a

hospital bed for over two weeks now. Her muscles are hanging off her body. More

importantly, her brain is gone off the deep end. Many of those days in hospital,

she's confused about where/why she's there. She's a light sleeper, and if she

doesn't get a good night's sleep I've seen that she's really confused the next

day.

It's been a roller coaster. Some days are good, some not.

Yesterday she was like herself, only the second time I've seen her as herself. I

went to the hospital very early this morning, again she was like herself. I was

hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

[Guest guest]

This is the main reason I am reticent to even think about getting married again.

I absolutely do not want to have to go through this again with another man. And

the thought that it may be me has also occurred to me. Wouldn't want someone to

have to take care of me in that condition. Thank God my Mom is 88 and clear of

mind and reasonably mobile. If she does go down that path, it won't be a long

road due to her age.

So, I understand totally why you are terrified. But you do know " the drill. "

Each case is unique and so take each day as it comes. Worrying about the future

is like going through it twice or worrying about something that never happens,

so it is futile.

Cassie (primary caregiver to husband Maurice who passed away from LBD on

12/22/2011)

To: LBDcaregivers

From: kdorsey@...

Date: Fri, 6 Apr 2012 01:45:53 +0000

Subject: I'm terrified to be here again!

I was a member here some years ago after my Dad was diagnosed with this

horrible thing, awhile after having pacemaker surgery. We didn't see it at the

time, but looking back, right after the surgery he was different.

Dad spent about seven years in a nursing home and passed away in 2010 at age 72.

But he was lost to us way before that; he was always happy to see us, but hadn't

spoken in at least a year. I think in the end, I blame the meds for his lack of

communication. But I know he would have eventually been lost to us with or

without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

She had surgery two days later, had the hip replaced. So it's been nearly three

weeks. My calm, strong Mom who was shoveling snow the day before has been in a

hospital bed for over two weeks now. Her muscles are hanging off her body. More

importantly, her brain is gone off the deep end. Many of those days in hospital,

she's confused about where/why she's there. She's a light sleeper, and if she

doesn't get a good night's sleep I've seen that she's really confused the next

day.

It's been a roller coaster. Some days are good, some not.

Yesterday she was like herself, only the second time I've seen her as herself. I

went to the hospital very early this morning, again she was like herself. I was

hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

[Guest guest]

Don't think it can't happen because your Mom is OK now.

My Mom did have a bit of short-term memory loss before this happened. She was a

healthy individual, not on any medications, never in a hospital before except to

have babies, until about two years ago. She was diagnosed with Normal Pressure

Hydrocephalus (NPH), normally something found in newborns. I had no idea this

could happen to a senior.

The giveaway was her walking. I took her for a geriatric assessment because

she'd sometimes repeat the same question in a conversation, and this came on

rather suddenly. The doctors were more concerned about her gait than her memory.

Apparently many with this problem are misdiagnosed with Parkinson's because of

the shuffling gait.

Anyhow, she was scheduled for surgery to put a shunt in, it drains the extra

fluid on her brain into her abdominal cavity. The idea was to stop any further

degradation, not necessarily improve things. This was about two years ago, and

she's managed very well ever since. She lives with us, goes out shopping during

the day while we're at work, prepares dinner for our family most days. She

walks every day, was shoveling snow the day before she fell.

But since breaking her hip on March 17th (a fluke thing, lost her balance while

putting on a pair of pants), and having surgery to have it replaced on the 19th,

we've been on a roller coaster. Some days she's like herself - I've seen exactly

three days where she's exactly the way she was before, maybe repeating a

question, but knowing where/when she is. Other times she doesn't remember why

she's there, thinks she's in a different time/place, sometimes spends the night

trying to climb out of bed.

Part of the problem is because of her previous problem (NPH), her brain was in a

more venerable state because of that. I wonder why they chose to put her under

for the surgery, knowing that she was at higher risk. I know of a couple of

people who were awake for this surgery due to sleep apnea or just a request to

not be put under because 'senior women go coocoo' - unpleasant yes, but you're

still yourself when it's over!

Finally they got her into a private room, and that helped somewhat. When she

doesn't sleep well (she's a light sleeper), I can almost guarantee she's going

to be in a bad way the next day.

This morning she's OK again, realizing she's been confused and trying to sort

out what's real and what's not. This afternoon, good too. By tonight she can be

upset again by events happening in her head. I feel sick to my stomach every

time I call, every time I go to visit, never knowing what I'll find.

For the record I don't know yet if LBD is her fate. Right now it's only 'post

operative delerium' according to her doctors But it seems so much the same as it

was with Dad years ago, I'm just able to see more clearly this time.

Best of luck to you all, and thank you for your kind words.

>

> This is the main reason I am reticent to even think about getting married

again. I absolutely do not want to have to go through this again with another

man. And the thought that it may be me has also occurred to me. Wouldn't want

someone to have to take care of me in that condition. Thank God my Mom is 88

and clear of mind and reasonably mobile. If she does go down that path, it

won't be a long road due to her age.

>

> So, I understand totally why you are terrified. But you do know " the drill. "

Each case is unique and so take each day as it comes. Worrying about the future

is like going through it twice or worrying about something that never happens,

so it is futile.

>

> Cassie (primary caregiver to husband Maurice who passed away from LBD on

12/22/2011)

>

> To: LBDcaregivers

> From: kdorsey@...

> Date: Fri, 6 Apr 2012 01:45:53 +0000

> Subject: I'm terrified to be here again!

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I was a member here some years ago after my Dad was diagnosed with this

horrible thing, awhile after having pacemaker surgery. We didn't see it at the

time, but looking back, right after the surgery he was different.

>

>

>

> Dad spent about seven years in a nursing home and passed away in 2010 at age

72. But he was lost to us way before that; he was always happy to see us, but

hadn't spoken in at least a year. I think in the end, I blame the meds for his

lack of communication. But I know he would have eventually been lost to us with

or without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

>

>

>

> Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

>

>

>

> Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

>

>

>

> She had surgery two days later, had the hip replaced. So it's been nearly

three weeks. My calm, strong Mom who was shoveling snow the day before has been

in a hospital bed for over two weeks now. Her muscles are hanging off her body.

More importantly, her brain is gone off the deep end. Many of those days in

hospital, she's confused about where/why she's there. She's a light sleeper, and

if she doesn't get a good night's sleep I've seen that she's really confused the

next day.

>

>

>

> It's been a roller coaster. Some days are good, some not.

>

>

>

> Yesterday she was like herself, only the second time I've seen her as herself.

I went to the hospital very early this morning, again she was like herself. I

was hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

>

>

>

> In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Don't think it can't happen because your Mom is OK now.

My Mom did have a bit of short-term memory loss before this happened. She was a

healthy individual, not on any medications, never in a hospital before except to

have babies, until about two years ago. She was diagnosed with Normal Pressure

Hydrocephalus (NPH), normally something found in newborns. I had no idea this

could happen to a senior.

The giveaway was her walking. I took her for a geriatric assessment because

she'd sometimes repeat the same question in a conversation, and this came on

rather suddenly. The doctors were more concerned about her gait than her memory.

Apparently many with this problem are misdiagnosed with Parkinson's because of

the shuffling gait.

Anyhow, she was scheduled for surgery to put a shunt in, it drains the extra

fluid on her brain into her abdominal cavity. The idea was to stop any further

degradation, not necessarily improve things. This was about two years ago, and

she's managed very well ever since. She lives with us, goes out shopping during

the day while we're at work, prepares dinner for our family most days. She

walks every day, was shoveling snow the day before she fell.

But since breaking her hip on March 17th (a fluke thing, lost her balance while

putting on a pair of pants), and having surgery to have it replaced on the 19th,

we've been on a roller coaster. Some days she's like herself - I've seen exactly

three days where she's exactly the way she was before, maybe repeating a

question, but knowing where/when she is. Other times she doesn't remember why

she's there, thinks she's in a different time/place, sometimes spends the night

trying to climb out of bed.

Part of the problem is because of her previous problem (NPH), her brain was in a

more venerable state because of that. I wonder why they chose to put her under

for the surgery, knowing that she was at higher risk. I know of a couple of

people who were awake for this surgery due to sleep apnea or just a request to

not be put under because 'senior women go coocoo' - unpleasant yes, but you're

still yourself when it's over!

Finally they got her into a private room, and that helped somewhat. When she

doesn't sleep well (she's a light sleeper), I can almost guarantee she's going

to be in a bad way the next day.

This morning she's OK again, realizing she's been confused and trying to sort

out what's real and what's not. This afternoon, good too. By tonight she can be

upset again by events happening in her head. I feel sick to my stomach every

time I call, every time I go to visit, never knowing what I'll find.

For the record I don't know yet if LBD is her fate. Right now it's only 'post

operative delerium' according to her doctors But it seems so much the same as it

was with Dad years ago, I'm just able to see more clearly this time.

Best of luck to you all, and thank you for your kind words.

>

> This is the main reason I am reticent to even think about getting married

again. I absolutely do not want to have to go through this again with another

man. And the thought that it may be me has also occurred to me. Wouldn't want

someone to have to take care of me in that condition. Thank God my Mom is 88

and clear of mind and reasonably mobile. If she does go down that path, it

won't be a long road due to her age.

>

> So, I understand totally why you are terrified. But you do know " the drill. "

Each case is unique and so take each day as it comes. Worrying about the future

is like going through it twice or worrying about something that never happens,

so it is futile.

>

> Cassie (primary caregiver to husband Maurice who passed away from LBD on

12/22/2011)

>

> To: LBDcaregivers

> From: kdorsey@...

> Date: Fri, 6 Apr 2012 01:45:53 +0000

> Subject: I'm terrified to be here again!

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I was a member here some years ago after my Dad was diagnosed with this

horrible thing, awhile after having pacemaker surgery. We didn't see it at the

time, but looking back, right after the surgery he was different.

>

>

>

> Dad spent about seven years in a nursing home and passed away in 2010 at age

72. But he was lost to us way before that; he was always happy to see us, but

hadn't spoken in at least a year. I think in the end, I blame the meds for his

lack of communication. But I know he would have eventually been lost to us with

or without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

>

>

>

> Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

>

>

>

> Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

>

>

>

> She had surgery two days later, had the hip replaced. So it's been nearly

three weeks. My calm, strong Mom who was shoveling snow the day before has been

in a hospital bed for over two weeks now. Her muscles are hanging off her body.

More importantly, her brain is gone off the deep end. Many of those days in

hospital, she's confused about where/why she's there. She's a light sleeper, and

if she doesn't get a good night's sleep I've seen that she's really confused the

next day.

>

>

>

> It's been a roller coaster. Some days are good, some not.

>

>

>

> Yesterday she was like herself, only the second time I've seen her as herself.

I went to the hospital very early this morning, again she was like herself. I

was hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

>

>

>

> In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Don't think it can't happen because your Mom is OK now.

My Mom did have a bit of short-term memory loss before this happened. She was a

healthy individual, not on any medications, never in a hospital before except to

have babies, until about two years ago. She was diagnosed with Normal Pressure

Hydrocephalus (NPH), normally something found in newborns. I had no idea this

could happen to a senior.

The giveaway was her walking. I took her for a geriatric assessment because

she'd sometimes repeat the same question in a conversation, and this came on

rather suddenly. The doctors were more concerned about her gait than her memory.

Apparently many with this problem are misdiagnosed with Parkinson's because of

the shuffling gait.

Anyhow, she was scheduled for surgery to put a shunt in, it drains the extra

fluid on her brain into her abdominal cavity. The idea was to stop any further

degradation, not necessarily improve things. This was about two years ago, and

she's managed very well ever since. She lives with us, goes out shopping during

the day while we're at work, prepares dinner for our family most days. She

walks every day, was shoveling snow the day before she fell.

But since breaking her hip on March 17th (a fluke thing, lost her balance while

putting on a pair of pants), and having surgery to have it replaced on the 19th,

we've been on a roller coaster. Some days she's like herself - I've seen exactly

three days where she's exactly the way she was before, maybe repeating a

question, but knowing where/when she is. Other times she doesn't remember why

she's there, thinks she's in a different time/place, sometimes spends the night

trying to climb out of bed.

Part of the problem is because of her previous problem (NPH), her brain was in a

more venerable state because of that. I wonder why they chose to put her under

for the surgery, knowing that she was at higher risk. I know of a couple of

people who were awake for this surgery due to sleep apnea or just a request to

not be put under because 'senior women go coocoo' - unpleasant yes, but you're

still yourself when it's over!

Finally they got her into a private room, and that helped somewhat. When she

doesn't sleep well (she's a light sleeper), I can almost guarantee she's going

to be in a bad way the next day.

This morning she's OK again, realizing she's been confused and trying to sort

out what's real and what's not. This afternoon, good too. By tonight she can be

upset again by events happening in her head. I feel sick to my stomach every

time I call, every time I go to visit, never knowing what I'll find.

For the record I don't know yet if LBD is her fate. Right now it's only 'post

operative delerium' according to her doctors But it seems so much the same as it

was with Dad years ago, I'm just able to see more clearly this time.

Best of luck to you all, and thank you for your kind words.

>

> This is the main reason I am reticent to even think about getting married

again. I absolutely do not want to have to go through this again with another

man. And the thought that it may be me has also occurred to me. Wouldn't want

someone to have to take care of me in that condition. Thank God my Mom is 88

and clear of mind and reasonably mobile. If she does go down that path, it

won't be a long road due to her age.

>

> So, I understand totally why you are terrified. But you do know " the drill. "

Each case is unique and so take each day as it comes. Worrying about the future

is like going through it twice or worrying about something that never happens,

so it is futile.

>

> Cassie (primary caregiver to husband Maurice who passed away from LBD on

12/22/2011)

>

> To: LBDcaregivers

> From: kdorsey@...

> Date: Fri, 6 Apr 2012 01:45:53 +0000

> Subject: I'm terrified to be here again!

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I was a member here some years ago after my Dad was diagnosed with this

horrible thing, awhile after having pacemaker surgery. We didn't see it at the

time, but looking back, right after the surgery he was different.

>

>

>

> Dad spent about seven years in a nursing home and passed away in 2010 at age

72. But he was lost to us way before that; he was always happy to see us, but

hadn't spoken in at least a year. I think in the end, I blame the meds for his

lack of communication. But I know he would have eventually been lost to us with

or without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

>

>

>

> Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

>

>

>

> Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

>

>

>

> She had surgery two days later, had the hip replaced. So it's been nearly

three weeks. My calm, strong Mom who was shoveling snow the day before has been

in a hospital bed for over two weeks now. Her muscles are hanging off her body.

More importantly, her brain is gone off the deep end. Many of those days in

hospital, she's confused about where/why she's there. She's a light sleeper, and

if she doesn't get a good night's sleep I've seen that she's really confused the

next day.

>

>

>

> It's been a roller coaster. Some days are good, some not.

>

>

>

> Yesterday she was like herself, only the second time I've seen her as herself.

I went to the hospital very early this morning, again she was like herself. I

was hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

>

>

>

> In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm sorry you have to face this again. I don't think it is unusual for a

caregiver to have to repeat the process a couple of times. All of my

grandparents, except one who passed away at 63, had one form of dementia or

another and most of the caregiving fell on my mom's shoulders for all three

of them. Watching Mom was pretty much how I learned to step up when it was

her turn to have LBD. (In the middle of all her caregiving, Mom was also

widowed. She was a very strong woman.) I guess if you need to look for

something positive in this, at least now you have some experience to fall

back on. I'm serious. Remember how confusing all this was when it was

new?

About that hospital stay - Watch your mom's care like a hawk. Though I had

taken care to be sure the staff knew about Mom having LBD, and had provided

the LBDA fact sheet as a quick reference, they gave Mom Haldol, which was

disastrous. Mom had broken both shoulders and, slow to come out of the

anesthesia from surgery, she also hallucinated. It was the anesthesia - not

as psychotic episode. But the hospital's on duty doctor didn't recognize

that, or didn't take Mom's age into account in factoring how she was

reacting to the drugs. So, in the middle of the night when family wasn't

there, and despite the fact that I had insisted that the LBDA fact sheet be

prominently displayed in Mom's medical record, they gave her Haldol. Mom

didn't come out of it for a couple of weeks and then was damaged

permanently. The next time Mom was hospitalized, not only did we use a

different hospital, we arranged to have one of us stay with her at all

times (rotating, of course). This hospital was happy to have us stay and

even brought in a mattress for us so that whoever was there overnight could

get some sleep. They expressed gratitude that we were there to both watch

Mom and to help them understand her, as she had lost most of her words.

The first hospital, by the way, has an excellent national reputation. So

does the second, with the difference being that the second deserves the

reputation, in my humble opinion.

So, watch the hospital care and question every drug or procedure. Remember

that you do have the right to refuse these individual things in her name.

Best wishes!

Kate

> **

>

>

> I was a member here some years ago after my Dad was diagnosed with this

> horrible thing, awhile after having pacemaker surgery. We didn't see it at

> the time, but looking back, right after the surgery he was different.

>

> Dad spent about seven years in a nursing home and passed away in 2010 at

> age 72. But he was lost to us way before that; he was always happy to see

> us, but hadn't spoken in at least a year. I think in the end, I blame the

> meds for his lack of communication. But I know he would have eventually

> been lost to us with or without drugs. Even before he lost his ability to

> communicate, he had left before that, he wasn't making sense.

>

> Now...it's my Mom! How unfair is it for one family to be dealt this hand

> twice in one lifetime?

>

> Mom has lived with us for about a year and a half, and woke up early on

> the morning of March 17th. She was putting on a pair of pants, lost her

> balance and thunk! She was in the basement, we were on the second floor. It

> was 4:45 a.m., and we heard it. Her hip was broken.

>

> She had surgery two days later, had the hip replaced. So it's been nearly

> three weeks. My calm, strong Mom who was shoveling snow the day before has

> been in a hospital bed for over two weeks now. Her muscles are hanging off

> her body. More importantly, her brain is gone off the deep end. Many of

> those days in hospital, she's confused about where/why she's there. She's a

> light sleeper, and if she doesn't get a good night's sleep I've seen that

> she's really confused the next day.

>

> It's been a roller coaster. Some days are good, some not.

>

> Yesterday she was like herself, only the second time I've seen her as

> herself. I went to the hospital very early this morning, again she was like

> herself. I was hopeful, we're getting through this. But the hospital called

> me tonight, I talked to her she's all fouled up again, thinks she's in a

> different time/place, very agitated, thinks she's in a police station.

>

> In short, I'm terrified. I can't do this again, but yet I have to, there

> is no one else. My brother lives away, it's only myself, my husband and my

> six year old here. I'm not a crier by nature, but...well, I am.

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

[Guest guest]

It's difficult to be a hawk when I'm just one person. I have a sibling who lives

away, Mom has siblings who are mostly away. I feel guilty when I can't visit as

much as I want, but truth of the matter is, I have a husband and a six year old

at home, they need me too. And even when I do spend time with Mom, she often

thinks I haven't been there for days.

Things are a bit different in our case, mostly in that we're in Canada.

Hospitalization is provided by our provincial government, we don't pay anything

for it (except in huge taxes). We're currently waiting for Mom to be moved from

the hospital ward where she is now, to a 'restorative care' unit where there's

more physiotherapy, etc., things to get her back to normal again. But I'm

starting to have my doubts that things will ever be 'normal' again, and I'm

looking into long-term care. We're heading into week four since her surgery, and

I've been down at the hospital at least once every single day (except for one

day when I was quite sick). Out of that period, she's been herself exactly three

times. This 'post operative delerium' has worn out its welcome, I wonder if it's

not here to stay.

Sometimes she seems fine when I go to visit her in the morning, but by night

she's somewhere/sometime else and has no idea she's in a hospital or why. She

asks about the welfare of her dogs (gone three years) or people who have died.

Just this morning, around 4 a.m. she managed to climb over the rails of her

hospital bed and fall - fortunately on her other side, not the hip that had been

operated on, and isn't hurt that they can tell. The night nurse said they'd been

on rounds 'two minutes before.' Sorry, there's just no way she could have done

that in two minutes. She was very active before, but can hardly move herself

around at all after three weeks of lying in bed with twice daily physio.

I'll say though, that I do recognize what to look for. She's had very little

narcotics, and is no longer permitted to have more. If I'd had my wits about me

when this happened, I would have insisted she have the surgery with just a

spinal, still awake, instead of being put under. Unpleasant, sure, but she'd

still be in there.

This all just sucks doesn't it?

>

> > **

> >

> >

> > I was a member here some years ago after my Dad was diagnosed with this

> > horrible thing, awhile after having pacemaker surgery. We didn't see it at

> > the time, but looking back, right after the surgery he was different.

> >

> > Dad spent about seven years in a nursing home and passed away in 2010 at

> > age 72. But he was lost to us way before that; he was always happy to see

> > us, but hadn't spoken in at least a year. I think in the end, I blame the

> > meds for his lack of communication. But I know he would have eventually

> > been lost to us with or without drugs. Even before he lost his ability to

> > communicate, he had left before that, he wasn't making sense.

> >

> > Now...it's my Mom! How unfair is it for one family to be dealt this hand

> > twice in one lifetime?

> >

> > Mom has lived with us for about a year and a half, and woke up early on

> > the morning of March 17th. She was putting on a pair of pants, lost her

> > balance and thunk! She was in the basement, we were on the second floor. It

> > was 4:45 a.m., and we heard it. Her hip was broken.

> >

> > She had surgery two days later, had the hip replaced. So it's been nearly

> > three weeks. My calm, strong Mom who was shoveling snow the day before has

> > been in a hospital bed for over two weeks now. Her muscles are hanging off

> > her body. More importantly, her brain is gone off the deep end. Many of

> > those days in hospital, she's confused about where/why she's there. She's a

> > light sleeper, and if she doesn't get a good night's sleep I've seen that

> > she's really confused the next day.

> >

> > It's been a roller coaster. Some days are good, some not.

> >

> > Yesterday she was like herself, only the second time I've seen her as

> > herself. I went to the hospital very early this morning, again she was like

> > herself. I was hopeful, we're getting through this. But the hospital called

> > me tonight, I talked to her she's all fouled up again, thinks she's in a

> > different time/place, very agitated, thinks she's in a police station.

> >

> > In short, I'm terrified. I can't do this again, but yet I have to, there

> > is no one else. My brother lives away, it's only myself, my husband and my

> > six year old here. I'm not a crier by nature, but...well, I am.

> >

> >

> >

>

>

>

> --

> Kate Knapp, OIT

> University of Minnesota

>

>

> You were born with certain gifts and talents.

> In kindergarten you were taught to share.

> The world needs all of the gifts it can get.

> Don't be shy.

>

>

>

[Guest guest]

It's difficult to be a hawk when I'm just one person. I have a sibling who lives

away, Mom has siblings who are mostly away. I feel guilty when I can't visit as

much as I want, but truth of the matter is, I have a husband and a six year old

at home, they need me too. And even when I do spend time with Mom, she often

thinks I haven't been there for days.

Things are a bit different in our case, mostly in that we're in Canada.

Hospitalization is provided by our provincial government, we don't pay anything

for it (except in huge taxes). We're currently waiting for Mom to be moved from

the hospital ward where she is now, to a 'restorative care' unit where there's

more physiotherapy, etc., things to get her back to normal again. But I'm

starting to have my doubts that things will ever be 'normal' again, and I'm

looking into long-term care. We're heading into week four since her surgery, and

I've been down at the hospital at least once every single day (except for one

day when I was quite sick). Out of that period, she's been herself exactly three

times. This 'post operative delerium' has worn out its welcome, I wonder if it's

not here to stay.

Sometimes she seems fine when I go to visit her in the morning, but by night

she's somewhere/sometime else and has no idea she's in a hospital or why. She

asks about the welfare of her dogs (gone three years) or people who have died.

Just this morning, around 4 a.m. she managed to climb over the rails of her

hospital bed and fall - fortunately on her other side, not the hip that had been

operated on, and isn't hurt that they can tell. The night nurse said they'd been

on rounds 'two minutes before.' Sorry, there's just no way she could have done

that in two minutes. She was very active before, but can hardly move herself

around at all after three weeks of lying in bed with twice daily physio.

I'll say though, that I do recognize what to look for. She's had very little

narcotics, and is no longer permitted to have more. If I'd had my wits about me

when this happened, I would have insisted she have the surgery with just a

spinal, still awake, instead of being put under. Unpleasant, sure, but she'd

still be in there.

This all just sucks doesn't it?

>

> > **

> >

> >

> > I was a member here some years ago after my Dad was diagnosed with this

> > horrible thing, awhile after having pacemaker surgery. We didn't see it at

> > the time, but looking back, right after the surgery he was different.

> >

> > Dad spent about seven years in a nursing home and passed away in 2010 at

> > age 72. But he was lost to us way before that; he was always happy to see

> > us, but hadn't spoken in at least a year. I think in the end, I blame the

> > meds for his lack of communication. But I know he would have eventually

> > been lost to us with or without drugs. Even before he lost his ability to

> > communicate, he had left before that, he wasn't making sense.

> >

> > Now...it's my Mom! How unfair is it for one family to be dealt this hand

> > twice in one lifetime?

> >

> > Mom has lived with us for about a year and a half, and woke up early on

> > the morning of March 17th. She was putting on a pair of pants, lost her

> > balance and thunk! She was in the basement, we were on the second floor. It

> > was 4:45 a.m., and we heard it. Her hip was broken.

> >

> > She had surgery two days later, had the hip replaced. So it's been nearly

> > three weeks. My calm, strong Mom who was shoveling snow the day before has

> > been in a hospital bed for over two weeks now. Her muscles are hanging off

> > her body. More importantly, her brain is gone off the deep end. Many of

> > those days in hospital, she's confused about where/why she's there. She's a

> > light sleeper, and if she doesn't get a good night's sleep I've seen that

> > she's really confused the next day.

> >

> > It's been a roller coaster. Some days are good, some not.

> >

> > Yesterday she was like herself, only the second time I've seen her as

> > herself. I went to the hospital very early this morning, again she was like

> > herself. I was hopeful, we're getting through this. But the hospital called

> > me tonight, I talked to her she's all fouled up again, thinks she's in a

> > different time/place, very agitated, thinks she's in a police station.

> >

> > In short, I'm terrified. I can't do this again, but yet I have to, there

> > is no one else. My brother lives away, it's only myself, my husband and my

> > six year old here. I'm not a crier by nature, but...well, I am.

> >

> >

> >

>

>

>

> --

> Kate Knapp, OIT

> University of Minnesota

>

>

> You were born with certain gifts and talents.

> In kindergarten you were taught to share.

> The world needs all of the gifts it can get.

> Don't be shy.

>

>

>

[Guest guest]

It's difficult to be a hawk when I'm just one person. I have a sibling who lives

away, Mom has siblings who are mostly away. I feel guilty when I can't visit as

much as I want, but truth of the matter is, I have a husband and a six year old

at home, they need me too. And even when I do spend time with Mom, she often

thinks I haven't been there for days.

Things are a bit different in our case, mostly in that we're in Canada.

Hospitalization is provided by our provincial government, we don't pay anything

for it (except in huge taxes). We're currently waiting for Mom to be moved from

the hospital ward where she is now, to a 'restorative care' unit where there's

more physiotherapy, etc., things to get her back to normal again. But I'm

starting to have my doubts that things will ever be 'normal' again, and I'm

looking into long-term care. We're heading into week four since her surgery, and

I've been down at the hospital at least once every single day (except for one

day when I was quite sick). Out of that period, she's been herself exactly three

times. This 'post operative delerium' has worn out its welcome, I wonder if it's

not here to stay.

Sometimes she seems fine when I go to visit her in the morning, but by night

she's somewhere/sometime else and has no idea she's in a hospital or why. She

asks about the welfare of her dogs (gone three years) or people who have died.

Just this morning, around 4 a.m. she managed to climb over the rails of her

hospital bed and fall - fortunately on her other side, not the hip that had been

operated on, and isn't hurt that they can tell. The night nurse said they'd been

on rounds 'two minutes before.' Sorry, there's just no way she could have done

that in two minutes. She was very active before, but can hardly move herself

around at all after three weeks of lying in bed with twice daily physio.

I'll say though, that I do recognize what to look for. She's had very little

narcotics, and is no longer permitted to have more. If I'd had my wits about me

when this happened, I would have insisted she have the surgery with just a

spinal, still awake, instead of being put under. Unpleasant, sure, but she'd

still be in there.

This all just sucks doesn't it?

>

> > **

> >

> >

> > I was a member here some years ago after my Dad was diagnosed with this

> > horrible thing, awhile after having pacemaker surgery. We didn't see it at

> > the time, but looking back, right after the surgery he was different.

> >

> > Dad spent about seven years in a nursing home and passed away in 2010 at

> > age 72. But he was lost to us way before that; he was always happy to see

> > us, but hadn't spoken in at least a year. I think in the end, I blame the

> > meds for his lack of communication. But I know he would have eventually

> > been lost to us with or without drugs. Even before he lost his ability to

> > communicate, he had left before that, he wasn't making sense.

> >

> > Now...it's my Mom! How unfair is it for one family to be dealt this hand

> > twice in one lifetime?

> >

> > Mom has lived with us for about a year and a half, and woke up early on

> > the morning of March 17th. She was putting on a pair of pants, lost her

> > balance and thunk! She was in the basement, we were on the second floor. It

> > was 4:45 a.m., and we heard it. Her hip was broken.

> >

> > She had surgery two days later, had the hip replaced. So it's been nearly

> > three weeks. My calm, strong Mom who was shoveling snow the day before has

> > been in a hospital bed for over two weeks now. Her muscles are hanging off

> > her body. More importantly, her brain is gone off the deep end. Many of

> > those days in hospital, she's confused about where/why she's there. She's a

> > light sleeper, and if she doesn't get a good night's sleep I've seen that

> > she's really confused the next day.

> >

> > It's been a roller coaster. Some days are good, some not.

> >

> > Yesterday she was like herself, only the second time I've seen her as

> > herself. I went to the hospital very early this morning, again she was like

> > herself. I was hopeful, we're getting through this. But the hospital called

> > me tonight, I talked to her she's all fouled up again, thinks she's in a

> > different time/place, very agitated, thinks she's in a police station.

> >

> > In short, I'm terrified. I can't do this again, but yet I have to, there

> > is no one else. My brother lives away, it's only myself, my husband and my

> > six year old here. I'm not a crier by nature, but...well, I am.

> >

> >

> >

>

>

>

> --

> Kate Knapp, OIT

> University of Minnesota

>

>

> You were born with certain gifts and talents.

> In kindergarten you were taught to share.

> The world needs all of the gifts it can get.

> Don't be shy.

>

>

>

[Guest guest]

Don't count her out yet. In '98 my husband fell, broke his wrist and they gave

him light sedation two times in one afternoon while setting the bone. Those two

light sedatives triggered a delirium that caused a 27 day hospital stay. He did

come out of it, pretty much, but the disease began accelerating after that. Nan

> >

> > > **

> > >

> > >

> > > I was a member here some years ago after my Dad was diagnosed with this

> > > horrible thing, awhile after having pacemaker surgery. We didn't see it at

> > > the time, but looking back, right after the surgery he was different.

> > >

> > > Dad spent about seven years in a nursing home and passed away in 2010 at

> > > age 72. But he was lost to us way before that; he was always happy to see

> > > us, but hadn't spoken in at least a year. I think in the end, I blame the

> > > meds for his lack of communication. But I know he would have eventually

> > > been lost to us with or without drugs. Even before he lost his ability to

> > > communicate, he had left before that, he wasn't making sense.

> > >

> > > Now...it's my Mom! How unfair is it for one family to be dealt this hand

> > > twice in one lifetime?

> > >

> > > Mom has lived with us for about a year and a half, and woke up early on

> > > the morning of March 17th. She was putting on a pair of pants, lost her

> > > balance and thunk! She was in the basement, we were on the second floor.

It

> > > was 4:45 a.m., and we heard it. Her hip was broken.

> > >

> > > She had surgery two days later, had the hip replaced. So it's been nearly

> > > three weeks. My calm, strong Mom who was shoveling snow the day before has

> > > been in a hospital bed for over two weeks now. Her muscles are hanging off

> > > her body. More importantly, her brain is gone off the deep end. Many of

> > > those days in hospital, she's confused about where/why she's there. She's

a

> > > light sleeper, and if she doesn't get a good night's sleep I've seen that

> > > she's really confused the next day.

> > >

> > > It's been a roller coaster. Some days are good, some not.

> > >

> > > Yesterday she was like herself, only the second time I've seen her as

> > > herself. I went to the hospital very early this morning, again she was

like

> > > herself. I was hopeful, we're getting through this. But the hospital

called

> > > me tonight, I talked to her she's all fouled up again, thinks she's in a

> > > different time/place, very agitated, thinks she's in a police station.

> > >

> > > In short, I'm terrified. I can't do this again, but yet I have to, there

> > > is no one else. My brother lives away, it's only myself, my husband and my

> > > six year old here. I'm not a crier by nature, but...well, I am.

> > >

> > >

> > >

> >

> >

> >

> > --

> > Kate Knapp, OIT

> > University of Minnesota

> >

> >

> > You were born with certain gifts and talents.

> > In kindergarten you were taught to share.

> > The world needs all of the gifts it can get.

> > Don't be shy.

> >

> >

> >

[Guest guest]

Thank you for all of your replies. I still don't know if LBD is our problem at

this point, but we're heading into week four of the roller coaster of confused

vs. nearly herself. Some days she realizes that her imagination has come up with

some things that can't possibly be true even though they seem very real. Other

days, there's no talking her out of those things in her imagination. I know

better than to try.

>

> I was a member here some years ago after my Dad was diagnosed with this

horrible thing, awhile after having pacemaker surgery. We didn't see it at the

time, but looking back, right after the surgery he was different.

>

> Dad spent about seven years in a nursing home and passed away in 2010 at age

72. But he was lost to us way before that; he was always happy to see us, but

hadn't spoken in at least a year. I think in the end, I blame the meds for his

lack of communication. But I know he would have eventually been lost to us with

or without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

>

> Now...it's my Mom! How unfair is it for one family to be dealt this hand twice

in one lifetime?

>

> Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

>

> She had surgery two days later, had the hip replaced. So it's been nearly

three weeks. My calm, strong Mom who was shoveling snow the day before has been

in a hospital bed for over two weeks now. Her muscles are hanging off her body.

More importantly, her brain is gone off the deep end. Many of those days in

hospital, she's confused about where/why she's there. She's a light sleeper, and

if she doesn't get a good night's sleep I've seen that she's really confused the

next day.

>

> It's been a roller coaster. Some days are good, some not.

>

> Yesterday she was like herself, only the second time I've seen her as herself.

I went to the hospital very early this morning, again she was like herself. I

was hopeful, we're getting through this. But the hospital called me tonight, I

talked to her she's all fouled up again, thinks she's in a different time/place,

very agitated, thinks she's in a police station.

>

> In short, I'm terrified. I can't do this again, but yet I have to, there is no

one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

>

[Guest guest]

Thanks for the melatonin responses all. It doesn't seem to be doing her any harm

so far, she's sleeping better, but she's not really mentally better.

Tomorrow will be four weeks since Mom had her broken hip repaired. I've seen

*her* a few times since then, even seen her realizing that the delusions in her

head, while they seem real, aren't reasonable and couldn't have happened. She

was kind of like that this morning, knew that she couldn't have been all the

places she thought she'd been. But this evening when I spoke to her she wanted

to tell me about what 'they' had brought to her, apparently the airlines had

brought her something. She handed the phone over to someone (who I presume was

not there) and got disconnected.

Mom has lived with us for about two years. I had hope in the beginning, but

sadly, I'm coming to the conclusion that she's not going to come back here. I

think that eventually she could physically be here and manage all the stairs in

our house, etc. but mentally she would not remember her limitations, etc. I

couldn't leave her here alone while we're at work. I'd find her broken at the

bottom of the stairs, or get a call at work that she was wandering around lost.

Have I mentioned that this sucks? But thank you to all for your support.

> >

> > I was a member here some years ago after my Dad was diagnosed with this

horrible thing, awhile after having pacemaker surgery. We didn't see it at the

time, but looking back, right after the surgery he was different.

> >

> > Dad spent about seven years in a nursing home and passed away in 2010 at age

72. But he was lost to us way before that; he was always happy to see us, but

hadn't spoken in at least a year. I think in the end, I blame the meds for his

lack of communication. But I know he would have eventually been lost to us with

or without drugs. Even before he lost his ability to communicate, he had left

before that, he wasn't making sense.

> >

> > Now...it's my Mom! How unfair is it for one family to be dealt this hand

twice in one lifetime?

> >

> > Mom has lived with us for about a year and a half, and woke up early on the

morning of March 17th. She was putting on a pair of pants, lost her balance and

thunk! She was in the basement, we were on the second floor. It was 4:45 a.m.,

and we heard it. Her hip was broken.

> >

> > She had surgery two days later, had the hip replaced. So it's been nearly

three weeks. My calm, strong Mom who was shoveling snow the day before has been

in a hospital bed for over two weeks now. Her muscles are hanging off her body.

More importantly, her brain is gone off the deep end. Many of those days in

hospital, she's confused about where/why she's there. She's a light sleeper, and

if she doesn't get a good night's sleep I've seen that she's really confused the

next day.

> >

> > It's been a roller coaster. Some days are good, some not.

> >

> > Yesterday she was like herself, only the second time I've seen her as

herself. I went to the hospital very early this morning, again she was like

herself. I was hopeful, we're getting through this. But the hospital called me

tonight, I talked to her she's all fouled up again, thinks she's in a different

time/place, very agitated, thinks she's in a police station.

> >

> > In short, I'm terrified. I can't do this again, but yet I have to, there is

no one else. My brother lives away, it's only myself, my husband and my six year

old here. I'm not a crier by nature, but...well, I am.

> >

>