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Re: Parkinson's and LBD

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Wittielady,

A big warm welcome from Texas. You will get the information and help here

that you need, from warm loving, and caring, caregivers.

Oh goodness you have your hands full. If your FIL is now hallucinating,

then he too has LBD. I wouldn't wish for your situation for anything.

I thought about getting a baby monitor for my husband. When I read that

some neighbors can listen in on some monitors, I hesitated. Then realized I

would get very little sleep if I had one. I have dead bolts on the doors that

he can't open, and

I get my sleep. I have put away dangerous items that he could use if he

got violent, which he did in two nursing homes.

Wittielady, I sure do feel sorry for you and your husband. The one thing I

came to terms with, I could fight internally every time Don needs my

attention or I can have love and empathy in my heart and roll with it. I found

it easier to flood my heart with love. This job is hard enough on us, but if

we have to do it begrudgingly we will suffer right along with our loved

ones.

You two, are doing a fantastic job, and have taken on a tremendous role,

but you can do it. If you need to holler and moan about it, let it happen.

We all have understanding and empathetic ears.

MY heart heat really goes out to anyone caring for two parents. What a job!

Love with a comforting smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 9/29/2009 10:55:01 A.M. Central Daylight Time,

wittielady@... writes:

Hi, this is my first time posting, so I'll explain some now. My husband

and I are caregivers for my father in law (parkinsons) and my mother in law

(Parkinsons w/LBD). We have actually moved in their home to care for them.

My father in law is only able to walk very weakly around the house with

the help of a walker and with one of us following him around. He has trouble

with some sort of congestion that strangles him and when he starts trying

to get it up, it's very long and stringy and takes all of about 20 minutes

to get it out and needs assistance to get it out. We do have a suction

machine, but at times it is too thick to use the machine. Pop has a cathera

and constantly complains of pain. He is on pain meds for that along with

his list of parkinsons meds.

Mom is bedridden and has a cathera. We do pick her up and by the hardest

put her on the pot for a BM. HOwever everytime we do this, she has a

seizure and is out from 4 minutes to 15 minutes. While in this seizure, she

drools, stares up to the right corner of the ceiling, then goes into a deep

breathing mode. However one time she actually stopped breathing for a little

over a minute. When coming out of it, she mumbles, drools and is

extremely worn out. We have to literally carry her back to bed. She has no

memory

of these blackouts.

In a typically day, mom awakes up mad because she thinks we let her sleep

out on the carport or in the garage on the cement. There is no changing

her mind. She rages all night and day about calling the police and tv

stations to tell on us. She believes nothing we tell her. We have both mom

and

pop on hospice. And thank God for these Angel. Without them, we would

really have more on our plates than we could handle. Mom has been chatting

all night and all day, off and on. On occasion, she chats straight through

three days and nights. Then sleeps straight through two days from pure

exhaustion. There are days she agrees to eat, then days that it is hard to

get some insure and water in her. Mom is on 50 mg seroquel twice a day.

Tramadol when needed for pain and .25mg of Xanix at bedtime or as needed for

her combative outbursts.

Pop has just started chatting in his sleep and also now during the day.

Sometimes he is asleep, sometimes he is awake when he is chatting. He is

also now starting to see things that aren't there. He also is trying to get

up to wander, even though he shouldn't, but if he knows we are busy with

mom, he does his darndest to try to wander around the house. It's like

having two tempermental children trying to test our patience.

Both mom and pop have hospital beds in their bedroom and we have a baby

monitor so we can hear them in our room. Needless to say, we don't get alot

of sleep between the two of them chatting all night and also the

bloodcurtling screams from mom in one of her nightmares.

Thanks for listening, just needed to get this off my chest

Wittielady

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Thanks so much for your kind words of advice.  I have been reading these posts

and it is all the same things that my husband and I go through with his

parents.  It's nice to know that someone else understands what we go through. 

It is trying sometimes, then again, my husband puts some humor into it.  I think

he was a natural born comedian.  However, he has less patience than I do, so I

try to step in when I see him becoming overwhelmed.  We work well as a team, so

at least we have each other.

Thanks again, will be reading all the new posts.  Thanks for listening...

Subject: Re: Parkinson's and LBD

To: LBDcaregivers

Date: Tuesday, September 29, 2009, 9:08 PM

 

Wittielady,

A big warm welcome from Texas. You will get the information and help here

that you need, from warm loving, and caring, caregivers.

Oh goodness you have your hands full. If your FIL is now hallucinating,

then he too has LBD. I wouldn't wish for your situation for anything.

I thought about getting a baby monitor for my husband. When I read that

some neighbors can listen in on some monitors, I hesitated. Then realized I

would get very little sleep if I had one. I have dead bolts on the doors that

he can't open, and

I get my sleep. I have put away dangerous items that he could use if he

got violent, which he did in two nursing homes.

Wittielady, I sure do feel sorry for you and your husband. The one thing I

came to terms with, I could fight internally every time Don needs my

attention or I can have love and empathy in my heart and roll with it. I found

it easier to flood my heart with love. This job is hard enough on us, but if

we have to do it begrudgingly we will suffer right along with our loved

ones.

You two, are doing a fantastic job, and have taken on a tremendous role,

but you can do it. If you need to holler and moan about it, let it happen.

We all have understanding and empathetic ears.

MY heart heat really goes out to anyone caring for two parents. What a job!

Love with a comforting smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 9/29/2009 10:55:01 A.M. Central Daylight Time,

wittieladyatt (DOT) net writes:

Hi, this is my first time posting, so I'll explain some now. My husband

and I are caregivers for my father in law (parkinsons) and my mother in law

(Parkinsons w/LBD). We have actually moved in their home to care for them.

My father in law is only able to walk very weakly around the house with

the help of a walker and with one of us following him around. He has trouble

with some sort of congestion that strangles him and when he starts trying

to get it up, it's very long and stringy and takes all of about 20 minutes

to get it out and needs assistance to get it out. We do have a suction

machine, but at times it is too thick to use the machine. Pop has a cathera

and constantly complains of pain. He is on pain meds for that along with

his list of parkinsons meds.

Mom is bedridden and has a cathera. We do pick her up and by the hardest

put her on the pot for a BM. HOwever everytime we do this, she has a

seizure and is out from 4 minutes to 15 minutes. While in this seizure, she

drools, stares up to the right corner of the ceiling, then goes into a deep

breathing mode. However one time she actually stopped breathing for a little

over a minute. When coming out of it, she mumbles, drools and is

extremely worn out. We have to literally carry her back to bed. She has no

memory

of these blackouts.

In a typically day, mom awakes up mad because she thinks we let her sleep

out on the carport or in the garage on the cement. There is no changing

her mind. She rages all night and day about calling the police and tv

stations to tell on us. She believes nothing we tell her. We have both mom

and

pop on hospice. And thank God for these Angel. Without them, we would

really have more on our plates than we could handle. Mom has been chatting

all night and all day, off and on. On occasion, she chats straight through

three days and nights. Then sleeps straight through two days from pure

exhaustion. There are days she agrees to eat, then days that it is hard to

get some insure and water in her. Mom is on 50 mg seroquel twice a day.

Tramadol when needed for pain and .25mg of Xanix at bedtime or as needed for

her combative outbursts.

Pop has just started chatting in his sleep and also now during the day.

Sometimes he is asleep, sometimes he is awake when he is chatting. He is

also now starting to see things that aren't there. He also is trying to get

up to wander, even though he shouldn't, but if he knows we are busy with

mom, he does his darndest to try to wander around the house. It's like

having two tempermental children trying to test our patience.

Both mom and pop have hospital beds in their bedroom and we have a baby

monitor so we can hear them in our room. Needless to say, we don't get alot

of sleep between the two of them chatting all night and also the

bloodcurtling screams from mom in one of her nightmares.

Thanks for listening, just needed to get this off my chest

Wittielady

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Hi Wittielady & Imogene,

I think that the heart of how we react to LOs with LBD comes down to realizing

that we need to interact with them at their current cognitive age. We have a

hard time adjusting to that because we have had so many years with them being

cognitively their chronological age. I think that if a person reacted upset

everytime that a child had a problem or need, that child would just get

frustrated and agitated, too. They are still the spouses, parents, siblings

that they always were, but their minds have gone back to an earlier time and

while they are not able to always interact the way that we do, we can alter the

way that we interact to make the journey a little easier on them.

It is OK to cry and scream or whatever when you are not right beside them,

because this diseases is horrible on the caregivers as well. During Mom's LBD, I

found this group very helpful and even after she passed away it is a way of

releasing some of the pent-up stress that comes from being a caregiver of a LO

with LBD.

Hugs and prayers,

Joan

>

> Wittielady, I sure do feel sorry for you and your husband. The one thing I

> came to terms with, I could fight internally every time Don needs my

> attention or I can have love and empathy in my heart and roll with it. I found

> it easier to flood my heart with love. This job is hard enough on us, but if

> we have to do it begrudgingly we will suffer right along with our loved

> ones.

>

> You two, are doing a fantastic job, and have taken on a tremendous role,

> but you can do it. If you need to holler and moan about it, let it happen.

> We all have understanding and empathetic ears.

>

> MY heart heat really goes out to anyone caring for two parents. What a job!

>

> Love with a comforting smile,

> Imogene

>

> Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

> And then, with LBD 2006.

> A happy personality is contagious. Infect someone today.

> Yours Truly

>

>

>

>

> In a message dated 9/29/2009 10:55:01 A.M. Central Daylight Time,

> wittielady@... writes:

>

> Hi, this is my first time posting, so I'll explain some now. My husband

> and I are caregivers for my father in law (parkinsons) and my mother in law

> (Parkinsons w/LBD). We have actually moved in their home to care for them.

>

>

> My father in law is only able to walk very weakly around the house with

> the help of a walker and with one of us following him around. He has trouble

> with some sort of congestion that strangles him and when he starts trying

> to get it up, it's very long and stringy and takes all of about 20 minutes

> to get it out and needs assistance to get it out. We do have a suction

> machine, but at times it is too thick to use the machine. Pop has a cathera

> and constantly complains of pain. He is on pain meds for that along with

> his list of parkinsons meds.

>

> Mom is bedridden and has a cathera. We do pick her up and by the hardest

> put her on the pot for a BM. HOwever everytime we do this, she has a

> seizure and is out from 4 minutes to 15 minutes. While in this seizure, she

> drools, stares up to the right corner of the ceiling, then goes into a deep

> breathing mode. However one time she actually stopped breathing for a little

> over a minute. When coming out of it, she mumbles, drools and is

> extremely worn out. We have to literally carry her back to bed. She has no

memory

> of these blackouts.

>

> In a typically day, mom awakes up mad because she thinks we let her sleep

> out on the carport or in the garage on the cement. There is no changing

> her mind. She rages all night and day about calling the police and tv

> stations to tell on us. She believes nothing we tell her. We have both mom

and

> pop on hospice. And thank God for these Angel. Without them, we would

> really have more on our plates than we could handle. Mom has been chatting

> all night and all day, off and on. On occasion, she chats straight through

> three days and nights. Then sleeps straight through two days from pure

> exhaustion. There are days she agrees to eat, then days that it is hard to

> get some insure and water in her. Mom is on 50 mg seroquel twice a day.

> Tramadol when needed for pain and .25mg of Xanix at bedtime or as needed for

> her combative outbursts.

>

> Pop has just started chatting in his sleep and also now during the day.

> Sometimes he is asleep, sometimes he is awake when he is chatting. He is

> also now starting to see things that aren't there. He also is trying to get

> up to wander, even though he shouldn't, but if he knows we are busy with

> mom, he does his darndest to try to wander around the house. It's like

> having two tempermental children trying to test our patience.

>

> Both mom and pop have hospital beds in their bedroom and we have a baby

> monitor so we can hear them in our room. Needless to say, we don't get alot

> of sleep between the two of them chatting all night and also the

> bloodcurtling screams from mom in one of her nightmares.

>

> Thanks for listening, just needed to get this off my chest

>

> Wittielady

>

>

>

>

>

>

>

>

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Joan, you are so very right. I had six children so I know how they act,

and have told myself many times that Don is acting just like they did.

For the second night in a row Don has asked me if it's far to the other

building or, tonight, If it was far away, or if I knew where. ( I quickly

think, what is he asking for, when he can't express himself, and knowing the

time of night, I pretty well figure it out). I asked, " Darling do you want

to go to bed? " He answered, " Yes. " He is confused where the bedroom is, and

he always has a hard time going to bed alone. I tuck him in with a kiss,

just like I used to do with the kids, and he smiles real big. I can tell he

feels secure, and then sleeps good.

Yes, in many ways they are like children, but then, when you least expect

it they are normal. So, we have to be careful when dealing with them. That

is why I care from the heart.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 9/29/2009 5:08:38 P.M. Central Daylight Time,

joan_croft@... writes:

Hi Wittielady & Imogene,

I think that the heart of how we react to LOs with LBD comes down to

realizing that we need to interact with them at their current cognitive age.

We

have a hard time adjusting to that because we have had so many years with

them being cognitively their chronological age. I think that if a person

reacted upset everytime that a child had a problem or need, that child would

just get frustrated and agitated, too. They are still the spouses,

parents, siblings that they always were, but their minds have gone back to an

earlier time and while they are not able to always interact the way that we

do, we can alter the way that we interact to make the journey a little easier

on them.

It is OK to cry and scream or whatever when you are not right beside them,

because this diseases is horrible on the caregivers as well. During Mom's

LBD, I found this group very helpful and even after she passed away it is a

way of releasing some of the pent-up stress that comes from being a

caregiver of a LO with LBD.

Hugs and prayers,

Joan

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Wittielady,

Wow, do you and your husband have your work cut out for you. I tip my hat to

you both.

Do you get any help at all? Siblings who come by to give you some time off?

Are your In-laws able to get any help from any senior services in your area? I

don't know how the two of you do it. I am in awe.

Courage

Parkinson's and LBD

Hi, this is my first time posting, so I'll explain some now. My husband and

I are caregivers for my father in law (parkinsons) and my mother in law

(Parkinsons w/LBD). We have actually moved in their home to care for them.

My father in law is only able to walk very weakly around the house with the

help of a walker and with one of us following him around. He has trouble with

some sort of congestion that strangles him and when he starts trying to get it

up, it's very long and stringy and takes all of about 20 minutes to get it out

and needs assistance to get it out. We do have a suction machine, but at times

it is too thick to use the machine. Pop has a cathera and constantly complains

of pain. He is on pain meds for that along with his list of parkinsons meds.

Mom is bedridden and has a cathera. We do pick her up and by the hardest put

her on the pot for a BM. HOwever everytime we do this, she has a seizure and is

out from 4 minutes to 15 minutes. While in this seizure, she drools, stares up

to the right corner of the ceiling, then goes into a deep breathing mode.

However one time she actually stopped breathing for a little over a minute. When

coming out of it, she mumbles, drools and is extremely worn out. We have to

literally carry her back to bed. She has no memory of these blackouts.

In a typically day, mom awakes up mad because she thinks we let her sleep out

on the carport or in the garage on the cement. There is no changing her mind.

She rages all night and day about calling the police and tv stations to tell on

us. She believes nothing we tell her. We have both mom and pop on hospice. And

thank God for these Angel. Without them, we would really have more on our plates

than we could handle. Mom has been chatting all night and all day, off and on.

On occasion, she chats straight through three days and nights. Then sleeps

straight through two days from pure exhaustion. There are days she agrees to

eat, then days that it is hard to get some insure and water in her. Mom is on 50

mg seroquel twice a day. Tramadol when needed for pain and .25mg of Xanix at

bedtime or as needed for her combative outbursts.

Pop has just started chatting in his sleep and also now during the day.

Sometimes he is asleep, sometimes he is awake when he is chatting. He is also

now starting to see things that aren't there. He also is trying to get up to

wander, even though he shouldn't, but if he knows we are busy with mom, he does

his darndest to try to wander around the house. It's like having two

tempermental children trying to test our patience.

Both mom and pop have hospital beds in their bedroom and we have a baby

monitor so we can hear them in our room. Needless to say, we don't get alot of

sleep between the two of them chatting all night and also the bloodcurtling

screams from mom in one of her nightmares.

Thanks for listening, just needed to get this off my chest

Wittielady

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Welcome!  My husband and I are caregivers for my FIL, my MIL lossed her battle

with cancer May 17 and went home to be with Jesus.  This group is a wonderful

place to vent, get advice and read about others experiences.  LBD is such a

strange disease... Bless you and your husband for being caregivers to his

parents.  I know it can be difficult and rewarding all at the same time. 

Hugs!

Alisa, DIL to Butch - diagnosed PD 10 years ago, LBD 2 years ago.

________________________________

To: LBDcaregivers

Sent: Tuesday, September 29, 2009 10:25:02 AM

Subject: Parkinson's and LBD

 

Hi, this is my first time posting, so I'll explain some now. My husband and I

are caregivers for my father in law (parkinsons) and my mother in law

(Parkinsons w/LBD). We have actually moved in their home to care for them.

My father in law is only able to walk very weakly around the house with the help

of a walker and with one of us following him around. He has trouble with some

sort of congestion that strangles him and when he starts trying to get it up,

it's very long and stringy and takes all of about 20 minutes to get it out and

needs assistance to get it out. We do have a suction machine, but at times it is

too thick to use the machine. Pop has a cathera and constantly complains of

pain. He is on pain meds for that along with his list of parkinsons meds.

Mom is bedridden and has a cathera. We do pick her up and by the hardest put her

on the pot for a BM. HOwever everytime we do this, she has a seizure and is out

from 4 minutes to 15 minutes. While in this seizure, she drools, stares up to

the right corner of the ceiling, then goes into a deep breathing mode. However

one time she actually stopped breathing for a little over a minute. When coming

out of it, she mumbles, drools and is extremely worn out. We have to literally

carry her back to bed. She has no memory of these blackouts.

In a typically day, mom awakes up mad because she thinks we let her sleep out on

the carport or in the garage on the cement. There is no changing her mind. She

rages all night and day about calling the police and tv stations to tell on us.

She believes nothing we tell her. We have both mom and pop on hospice. And thank

God for these Angel. Without them, we would really have more on our plates than

we could handle. Mom has been chatting all night and all day, off and on. On

occasion, she chats straight through three days and nights. Then sleeps straight

through two days from pure exhaustion. There are days she agrees to eat, then

days that it is hard to get some insure and water in her. Mom is on 50 mg

seroquel twice a day. Tramadol when needed for pain and .25mg of Xanix at

bedtime or as needed for her combative outbursts.

Pop has just started chatting in his sleep and also now during the day.

Sometimes he is asleep, sometimes he is awake when he is chatting. He is also

now starting to see things that aren't there. He also is trying to get up to

wander, even though he shouldn't, but if he knows we are busy with mom, he does

his darndest to try to wander around the house. It's like having two

tempermental children trying to test our patience.

Both mom and pop have hospital beds in their bedroom and we have a baby monitor

so we can hear them in our room. Needless to say, we don't get alot of sleep

between the two of them chatting all night and also the bloodcurtling screams

from mom in one of her nightmares.

Thanks for listening, just needed to get this off my chest

Wittielady

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Thanks so much for all the replies.  My post was basically to get my feet wet in

this group and to see if anyone else has the same symptoms.  The little seizures

that my MIL has been having has been of big concern to my hubby and I.  They

seen to take so much out of her that she litterally has no strength at all to

help us get her back to bed.  She doesn't seem to have the strenght to attempt

to form the words afterward.  We had the hospice nurse here Monday and she took

blood pressure before during and after.  Before it was normal, during it wasn't

detectable and afterward it was a little low.  So, it seems the blood pressure

has something to do with it.  However, we don't just grab her up out of the bed,

we slowly sit her up, let her sit a minute or two then transfer her to rolling

walker or wheel chair, then roll the ten to twelve feet or so to the toilet.  By

the time we get her out of the chair and transfer to the toilet, she goes out. 

We

have tried to bring her to the living room to her handicap recliner so she can

watch the big screen tv, but passes out before we can get her all the way to the

living room.  These seizures are trying because she doesn't believe she has

them, thinks we just don't want her in the living room, but we are concerned for

her getting injured in a fall.  She is small, but dead weight.  My husband, who

is very strong has a time holding her up to keep her from falling.  He's worried

that with one slip, she could be injured badly. 

Each day brings a new symptom or worsening symptoms of the ones they already

have.  I think they are having a race to see who can go to heaven first.  In the

past, one would be worse, the other seemed pretty good.  Then the rolls would

reverse.  However, now they are both declining at a rapid rate and need constant

attention.  Thank God there are two of us to handle everything. 

I have to commend my husband.  Not many men would change diapers, wipe butts,

drool, vomit and so on for their parents.  He does such a wonderful job.  I had

a little experience with caregiving with my own parents in the past.  My dad

died in 1982 at the age of 57 with ALS (Lew Gehrig Disease).  My mom passed on

in 2000 with enphezyma.  I took care of both parents during their time of need.

If anyone out there has a LO with these little seizures in LBD, let me know

Please.

Thanks for all the support.  My husband and I both appreciate you.  I pass all

the posts on to him so that we can all understand everything about LBD.  We have

done much research when mom was diagnosed 4 years ago.  It seems she had this

disease at least a couple of years before diagnosis.  She hid it well, but after

diagnosis, we look back and see the symptoms that we missed.

Wittielady

Subject: Re: Parkinson's and LBD

To: LBDcaregivers

Date: Wednesday, September 30, 2009, 11:31 AM

 

Welcome! My husband and I are caregivers for my FIL, my MIL

lossed her battle with cancer May 17 and went home to be with Jesus. This group

is a wonderful place to vent, get advice and read about others experiences. LBD

is such a strange disease... Bless you and your husband for being caregivers to

his parents. I know it can be difficult and rewarding all at the same time.

Hugs!

Alisa, DIL to Butch - diagnosed PD 10 years ago, LBD 2 years ago.

____________ _________ _________ __

From: " wittieladyatt (DOT) net " <wittieladyatt (DOT) net>

To: LBDcaregivers@ yahoogroups. com

Sent: Tuesday, September 29, 2009 10:25:02 AM

Subject: Parkinson's and LBD

Hi, this is my first time posting, so I'll explain some now. My husband and I

are caregivers for my father in law (parkinsons) and my mother in law

(Parkinsons w/LBD). We have actually moved in their home to care for them.

My father in law is only able to walk very weakly around the house with the help

of a walker and with one of us following him around. He has trouble with some

sort of congestion that strangles him and when he starts trying to get it up,

it's very long and stringy and takes all of about 20 minutes to get it out and

needs assistance to get it out. We do have a suction machine, but at times it is

too thick to use the machine. Pop has a cathera and constantly complains of

pain. He is on pain meds for that along with his list of parkinsons meds.

Mom is bedridden and has a cathera. We do pick her up and by the hardest put her

on the pot for a BM. HOwever everytime we do this, she has a seizure and is out

from 4 minutes to 15 minutes. While in this seizure, she drools, stares up to

the right corner of the ceiling, then goes into a deep breathing mode. However

one time she actually stopped breathing for a little over a minute. When coming

out of it, she mumbles, drools and is extremely worn out. We have to literally

carry her back to bed. She has no memory of these blackouts.

In a typically day, mom awakes up mad because she thinks we let her sleep out on

the carport or in the garage on the cement. There is no changing her mind. She

rages all night and day about calling the police and tv stations to tell on us.

She believes nothing we tell her. We have both mom and pop on hospice. And thank

God for these Angel. Without them, we would really have more on our plates than

we could handle. Mom has been chatting all night and all day, off and on. On

occasion, she chats straight through three days and nights. Then sleeps straight

through two days from pure exhaustion. There are days she agrees to eat, then

days that it is hard to get some insure and water in her. Mom is on 50 mg

seroquel twice a day. Tramadol when needed for pain and .25mg of Xanix at

bedtime or as needed for her combative outbursts.

Pop has just started chatting in his sleep and also now during the day.

Sometimes he is asleep, sometimes he is awake when he is chatting. He is also

now starting to see things that aren't there. He also is trying to get up to

wander, even though he shouldn't, but if he knows we are busy with mom, he does

his darndest to try to wander around the house. It's like having two

tempermental children trying to test our patience.

Both mom and pop have hospital beds in their bedroom and we have a baby monitor

so we can hear them in our room. Needless to say, we don't get alot of sleep

between the two of them chatting all night and also the bloodcurtling screams

from mom in one of her nightmares.

Thanks for listening, just needed to get this off my chest

Wittielady

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The heart is the best indicator of all. I think one of the hardest things for

LOs to understand at the beginning is to interact on the cognitive level because

it is so hard to acknowledge that we are losing their adult selves and they are

slipping into a different realm. I do know what you mean about slipping back

and forth in cognition. The heart does allow us to discern when and how we

should interact at the different levels.

God bless you and Don!!!

Hugs and prayers,

Joan

>

> Joan, you are so very right. I had six children so I know how they act,

> and have told myself many times that Don is acting just like they did.

>

>

> For the second night in a row Don has asked me if it's far to the other

> building or, tonight, If it was far away, or if I knew where. ( I quickly

> think, what is he asking for, when he can't express himself, and knowing the

> time of night, I pretty well figure it out). I asked, " Darling do you want

> to go to bed? " He answered, " Yes. " He is confused where the bedroom is, and

> he always has a hard time going to bed alone. I tuck him in with a kiss,

> just like I used to do with the kids, and he smiles real big. I can tell he

> feels secure, and then sleeps good.

>

> Yes, in many ways they are like children, but then, when you least expect

> it they are normal. So, we have to be careful when dealing with them. That

> is why I care from the heart.

>

>

> Love with a smile,

> Imogene

>

> Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

> And then, with LBD 2006.

> A happy personality is contagious. Infect someone today.

> Yours Truly

>

>

> In a message dated 9/29/2009 5:08:38 P.M. Central Daylight Time,

> joan_croft@... writes:

>

> Hi Wittielady & Imogene,

> I think that the heart of how we react to LOs with LBD comes down to

> realizing that we need to interact with them at their current cognitive age.

We

> have a hard time adjusting to that because we have had so many years with

> them being cognitively their chronological age. I think that if a person

> reacted upset everytime that a child had a problem or need, that child would

> just get frustrated and agitated, too. They are still the spouses,

> parents, siblings that they always were, but their minds have gone back to an

> earlier time and while they are not able to always interact the way that we

> do, we can alter the way that we interact to make the journey a little easier

> on them.

>

> It is OK to cry and scream or whatever when you are not right beside them,

> because this diseases is horrible on the caregivers as well. During Mom's

> LBD, I found this group very helpful and even after she passed away it is a

> way of releasing some of the pent-up stress that comes from being a

> caregiver of a LO with LBD.

>

> Hugs and prayers,

> Joan

>

>

>

>

>

>

>

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AMEN!!!!

Hugs from Helene in NY.

> >

> > Joan, you are so very right. I had six children so I know how they act,

> > and have told myself many times that Don is acting just like they did.

> >

> >

> > For the second night in a row Don has asked me if it's far to the other

> > building or, tonight, If it was far away, or if I knew where. ( I quickly

> > think, what is he asking for, when he can't express himself, and knowing

the

> > time of night, I pretty well figure it out). I asked, " Darling do you want

> > to go to bed? " He answered, " Yes. " He is confused where the bedroom is, and

> > he always has a hard time going to bed alone. I tuck him in with a kiss,

> > just like I used to do with the kids, and he smiles real big. I can tell he

> > feels secure, and then sleeps good.

> >

> > Yes, in many ways they are like children, but then, when you least expect

> > it they are normal. So, we have to be careful when dealing with them. That

> > is why I care from the heart.

> >

> >

> > Love with a smile,

> > Imogene

> >

> > Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

> > And then, with LBD 2006.

> > A happy personality is contagious. Infect someone today.

> > Yours Truly

> >

> >

> > In a message dated 9/29/2009 5:08:38 P.M. Central Daylight Time,

> > joan_croft@ writes:

> >

> > Hi Wittielady & Imogene,

> > I think that the heart of how we react to LOs with LBD comes down to

> > realizing that we need to interact with them at their current cognitive

age. We

> > have a hard time adjusting to that because we have had so many years with

> > them being cognitively their chronological age. I think that if a person

> > reacted upset everytime that a child had a problem or need, that child

would

> > just get frustrated and agitated, too. They are still the spouses,

> > parents, siblings that they always were, but their minds have gone back to

an

> > earlier time and while they are not able to always interact the way that we

> > do, we can alter the way that we interact to make the journey a little

easier

> > on them.

> >

> > It is OK to cry and scream or whatever when you are not right beside them,

> > because this diseases is horrible on the caregivers as well. During Mom's

> > LBD, I found this group very helpful and even after she passed away it is a

> > way of releasing some of the pent-up stress that comes from being a

> > caregiver of a LO with LBD.

> >

> > Hugs and prayers,

> > Joan

> >

> >

> >

> >

> >

> >

> >

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