FIL Can't Seem to Sit Still...And More!

[Guest guest]

Yesterday marked my in-laws' 46th wedding anniversary and it wasn't

a good one. First of all, it's no surprise that my FIL didn't

remember it was their anniversary. Secondly, my BIL called my

husband saying my FIL wanted to talk to him because my MIL and BIL

were being mean to him. A long story short, my FIL was upset

because he was put on some new asthma medication. So, my MIL and

BIL got him situated in the bed so that he could take his

treatment. Well, no sooner did they get him moved to the bed did he

decide he wanted to receive the med. in the sunroon. They simply

refused to move him again and he got mad. Moving my FIL is no easy

task, believe me. Needless to say, he felt put upon and wanted to

speak to my husband. Of course, with my husband not being around

him as often, he has a lot more patience with him. Each time he's

gotten mad at my BIL, who is there with him every single day, he

threatens to call my husband and tell him how badly he's being

treated. Oh, I could go on and on about this.

Anyway, I think the main reason my FIL wanted to be moved to the

sunroon yesterday is because, here lately, it's as though he suffers

from ADHD. He, literally, can't sit still for any given amount of

time. Since he's in a motorized scooter, he just drives off from

the dinner table or where have you on the turn of a dime. Or, he

asks my MIL or BIL to move him somewhere else, just like he did

yesterday. He can't seem to be satisfied staying in one spot. He

gets very ansy. Is this common with LBD? What could cause it? He

hasn't had any med. changes that I know of, other than his asthma

med., but the restlessness has been happening longer than he's been

on the med.

Also, each time my husband asks my FIL how he's doing, he'll

reply, " Not good. " We both find that incredibly frustrating because

we want him to have a fighting spirit. We believe that anytime you

lie back and kick up your heels, your battle will be over much

quicker than if you work at getting better. We're not fooling

ourselves here. Trust me, we know the reality of what we're

facing. At the rate my FIL is going, he won't be around in another

year. Would it not help, at least somewhat, for him to at least try

and walk a little bit everyday, even if it's only to the front

door? My FIL has become completely dependent on that darned

motorized scooter and, therefore, isn't using his muscles much, at

all. I often wonder if, perhaps, he should be working with a

physical/occupational therapist. I really don't know if he's

capable of doing more than he is now, so maybe I'm asking too much.

It's just so painful to see someone wither away and give up. I

witnessed that in my brother three years ago when he was diagnosed

with terminal stomach cancer and there's nothing like it.

Another question is how does my husband deal with the fact that each

time he speaks to my FIL, he asks my husband, " When are you coming

to see me? " We live 3 hours away from my in-laws and my husband goes

to see them about twice a month. He, of course, has a family of his

own and a very demanding job, so driving over there sometimes isn't

easy to work in, but he does what he can. Still, my FIL makes him

feel very guilty that he isn't doing more for him. Whenever my

husband does go to see him, my FIL stays holed up in the sunroom

away from everyone else. So, it isn't like my husband is getting any

quality time with him. Also, whenever my in-laws come here, my

husband bends over backwards to make my FIL feel extra special. For

instance, my FIL loves shrimp, so we went out and bought a huge bag

of shrimp so that we can have it when he comes tomorrow. I

understand why he does those sort of things, but at the same time, I

think it can also set my FIL up to expect the red carpet treatment

from us and he'll come to resent my MIL and BIL for not doing the

same for him when they're home. Does that make any sense? So sorry

for rambling on about everything, but things are going from bad to

worse at a remarkable rate of speed. I know my husband is both

scared and frustrated and that hurts me. He said he could barely

understand my FIL when they spoke on the phone yesterday. His voice

is a low mumble now.

Well, I think that's enough said for now. I will post again after

his neuropsych. testing this Thursday. I know it's going to be a

long and tiring day. Does anyone know if the tester generally

breaks for lunch? I can't imagine my FIL starting the testing at

9:30 a.m. and working right through lunchtime. Are family members

allowed to be present during the testing? I know my MIL tends to

try and coach my FIL to give the right answers. Just wondering.

Hope all of you have a happy and safe Fourth of July!!

Take care,

April

[Guest guest]

April-

I am so sorry that your FIL keeps everyone on pins and needles. I just wanted

to comment on the asthma medication. Many asthma meds can make the person using

them feel figity (sp), feel nervous and have increased heart rate, but usually

these symtpoms calm down after awhile. Perhaps, the new med your FIL is on

aggravates his current hyperactivity. You may want to do a little research and

check the side affects with your pharmacist or physician.

XOXOXO

Gerry

Wilmington, De.

Daughter and Caregiver of Dick Deverell, who died 9/11/05 after more than a 4

yr. battle with LBD.

FIL Can't Seem to Sit Still...And More!

Yesterday marked my in-laws' 46th wedding anniversary and it wasn't

a good one. First of all, it's no surprise that my FIL didn't

remember it was their anniversary. Secondly, my BIL called my

husband saying my FIL wanted to talk to him because my MIL and BIL

were being mean to him. A long story short, my FIL was upset

because he was put on some new asthma medication. So, my MIL and

BIL got him situated in the bed so that he could take his

treatment. Well, no sooner did they get him moved to the bed did he

decide he wanted to receive the med. in the sunroon. They simply

refused to move him again and he got mad. Moving my FIL is no easy

task, believe me. Needless to say, he felt put upon and wanted to

speak to my husband. Of course, with my husband not being around

him as often, he has a lot more patience with him. Each time he's

gotten mad at my BIL, who is there with him every single day, he

threatens to call my husband and tell him how badly he's being

treated. Oh, I could go on and on about this.

Anyway, I think the main reason my FIL wanted to be moved to the

sunroon yesterday is because, here lately, it's as though he suffers

from ADHD. He, literally, can't sit still for any given amount of

time. Since he's in a motorized scooter, he just drives off from

the dinner table or where have you on the turn of a dime. Or, he

asks my MIL or BIL to move him somewhere else, just like he did

yesterday. He can't seem to be satisfied staying in one spot. He

gets very ansy. Is this common with LBD? What could cause it? He

hasn't had any med. changes that I know of, other than his asthma

med., but the restlessness has been happening longer than he's been

on the med.

Also, each time my husband asks my FIL how he's doing, he'll

reply, " Not good. " We both find that incredibly frustrating because

we want him to have a fighting spirit. We believe that anytime you

lie back and kick up your heels, your battle will be over much

quicker than if you work at getting better. We're not fooling

ourselves here. Trust me, we know the reality of what we're

facing. At the rate my FIL is going, he won't be around in another

year. Would it not help, at least somewhat, for him to at least try

and walk a little bit everyday, even if it's only to the front

door? My FIL has become completely dependent on that darned

motorized scooter and, therefore, isn't using his muscles much, at

all. I often wonder if, perhaps, he should be working with a

physical/occupational therapist. I really don't know if he's

capable of doing more than he is now, so maybe I'm asking too much.

It's just so painful to see someone wither away and give up. I

witnessed that in my brother three years ago when he was diagnosed

with terminal stomach cancer and there's nothing like it.

Another question is how does my husband deal with the fact that each

time he speaks to my FIL, he asks my husband, " When are you coming

to see me? " We live 3 hours away from my in-laws and my husband goes

to see them about twice a month. He, of course, has a family of his

own and a very demanding job, so driving over there sometimes isn't

easy to work in, but he does what he can. Still, my FIL makes him

feel very guilty that he isn't doing more for him. Whenever my

husband does go to see him, my FIL stays holed up in the sunroom

away from everyone else. So, it isn't like my husband is getting any

quality time with him. Also, whenever my in-laws come here, my

husband bends over backwards to make my FIL feel extra special. For

instance, my FIL loves shrimp, so we went out and bought a huge bag

of shrimp so that we can have it when he comes tomorrow. I

understand why he does those sort of things, but at the same time, I

think it can also set my FIL up to expect the red carpet treatment

from us and he'll come to resent my MIL and BIL for not doing the

same for him when they're home. Does that make any sense? So sorry

for rambling on about everything, but things are going from bad to

worse at a remarkable rate of speed. I know my husband is both

scared and frustrated and that hurts me. He said he could barely

understand my FIL when they spoke on the phone yesterday. His voice

is a low mumble now.

Well, I think that's enough said for now. I will post again after

his neuropsych. testing this Thursday. I know it's going to be a

long and tiring day. Does anyone know if the tester generally

breaks for lunch? I can't imagine my FIL starting the testing at

9:30 a.m. and working right through lunchtime. Are family members

allowed to be present during the testing? I know my MIL tends to

try and coach my FIL to give the right answers. Just wondering.

Hope all of you have a happy and safe Fourth of July!!

Take care,

April

[Guest guest]

<snip> He can't seem to be satisfied staying in one spot. He

gets very ansy. Is this common with LBD? What could cause it? He

hasn't had any med. changes that I know of, other than his asthma

med., but the restlessness has been happening longer than he's been

on the med.<snip>

Yes - I noticed the same thing with my mother in the beginning. Very

antsy. Can't sit still. Constantly moving once sitting... I think

it's part of the symptoms of LBD - some of the earlier symptoms...

<snip> I often wonder if, perhaps, he should be working with a

physical/occupational therapist. <snip>

I'd try it out - it doesn't hurt. If anything, it'll be good for him.

<snip> Also, whenever my in-laws come here, my husband bends over

backwards to make my FIL feel extra special. For instance, my FIL

loves shrimp, so we went out and bought a huge bag of shrimp so that

we can have it when he comes tomorrow. I understand why he does

those sort of things, but at the same time, I think it can also set

my FIL up to expect the red carpet treatment from us and he'll come

to resent my MIL and BIL for not doing the same for him when they're

home. Does that make any sense? <snip>

Let your husband spoil your dad. In his circumstances, he can't do as

much as his brother - allow him the opportunity to do what he knows

will make your FIL happy. Spoil away.

<snip>Does anyone know if the tester generally breaks for lunch?

<snip>

Not that I know of - a break for lunch didn't happen for my mother.

<snip>Are family members allowed to be present during the testing? I

know my MIL tends to try and coach my FIL to give the right answers.

Just wondering.<snip>

No. Your FIL will be tested alone - your MIL will have to wait in a

waiting room.

[Guest guest]

April -

Your FIL has (at least) two common non-motor dysfunctions prevalent with

those with Atypical Parkinsonism disorders: akathisia (restlessness; can't

sit still) and apathy (difficulty sustaining an activity, diminished

motivation, and indifference). An anti-depressant might work but it seems

like your FIL is already taking lots of medication.

I've recommend this before: I think it would be beneficial if your MIL and

BIL could take some classes in caregiving for people with dementia (or read

" The 36-Hour Day " book mentioned lately on the list). This would be

beneficial to not only them but also your FIL.

At whatever appt where the results of the neuropsych testing will be

discussed, is everyone (including your husband and BIL) attending and has

the neurologist been primed to discuss moving your FIL into a

facility? Discuss w/the neurologist: how do you determine when someone

needs to go to a facility; is your FIL eligible for Assisted Living or must

he go to a Skilled Nursing Facility; and does the doctor know of any

dementia-capable places? It seems like you are placing lots of hopes on

this doctor and it would be best if you all tell him/her in advance what

you want so that your hopes can be met.

I agree with you that attitude is very important. But it is your FIL's

life and if he wants to sit around thinking he's not doing well (and dies

" earlier " because of it), you gotta let him.

There may be a time soon when your husband cannot understand anything your

father says - on the phone or otherwise. And there may come a time when

your FIL has no interest in talking to your husband on the phone. At that

point, the only choice left for your husband will be to make a 3-hour drive

to see his father. And they will likely be very frustrating visits. None

of this is any fun, that's for sure.

Robin

>________________________________________________________________________

>________________________________________________________________________

>

>15a. FIL Can't Seem to Sit Still...And More! Digest

>Number 3113

> Posted by: " aswest1021 " aswest1021@... aswest1021

> Date: Tue Jul 4, 2006 6:30 am (PDT)

>

>Yesterday marked my in-laws' 46th wedding anniversary and it wasn't

>a good one. First of all, it's no surprise that my FIL didn't

>remember it was their anniversary. Secondly, my BIL called my

>husband saying my FIL wanted to talk to him because my MIL and BIL

>were being mean to him. A long story short, my FIL was upset

>because he was put on some new asthma medication. So, my MIL and

>BIL got him situated in the bed so that he could take his

>treatment. Well, no sooner did they get him moved to the bed did he

>decide he wanted to receive the med. in the sunroon. They simply

>refused to move him again and he got mad. Moving my FIL is no easy

>task, believe me. Needless to say, he felt put upon and wanted to

>speak to my husband. Of course, with my husband not being around

>him as often, he has a lot more patience with him. Each time he's

>gotten mad at my BIL, who is there with him every single day, he

>threatens to call my husband and tell him how badly he's being

>treated. Oh, I could go on and on about this.

>

>Anyway, I think the main reason my FIL wanted to be moved to the

>sunroon yesterday is because, here lately, it's as though he suffers

>from ADHD. He, literally, can't sit still for any given amount of

>time. Since he's in a motorized scooter, he just drives off from

>the dinner table or where have you on the turn of a dime. Or, he

>asks my MIL or BIL to move him somewhere else, just like he did

>yesterday. He can't seem to be satisfied staying in one spot. He

>gets very ansy. Is this common with LBD? What could cause it? He

>hasn't had any med. changes that I know of, other than his asthma

>med., but the restlessness has been happening longer than he's been

>on the med.

>

>Also, each time my husband asks my FIL how he's doing, he'll

>reply, " Not good. " We both find that incredibly frustrating because

>we want him to have a fighting spirit. We believe that anytime you

>lie back and kick up your heels, your battle will be over much

>quicker than if you work at getting better. We're not fooling

>ourselves here. Trust me, we know the reality of what we're

>facing. At the rate my FIL is going, he won't be around in another

>year. Would it not help, at least somewhat, for him to at least try

>and walk a little bit everyday, even if it's only to the front

>door? My FIL has become completely dependent on that darned

>motorized scooter and, therefore, isn't using his muscles much, at

>all. I often wonder if, perhaps, he should be working with a

>physical/occupational therapist. I really don't know if he's

>capable of doing more than he is now, so maybe I'm asking too much.

>It's just so painful to see someone wither away and give up. I

>witnessed that in my brother three years ago when he was diagnosed

>with terminal stomach cancer and there's nothing like it.

>

>Another question is how does my husband deal with the fact that each

>time he speaks to my FIL, he asks my husband, " When are you coming

>to see me? " We live 3 hours away from my in-laws and my husband goes

>to see them about twice a month. He, of course, has a family of his

>own and a very demanding job, so driving over there sometimes isn't

>easy to work in, but he does what he can. Still, my FIL makes him

>feel very guilty that he isn't doing more for him. Whenever my

>husband does go to see him, my FIL stays holed up in the sunroom

>away from everyone else. So, it isn't like my husband is getting any

>quality time with him. Also, whenever my in-laws come here, my

>husband bends over backwards to make my FIL feel extra special. For

>instance, my FIL loves shrimp, so we went out and bought a huge bag

>of shrimp so that we can have it when he comes tomorrow. I

>understand why he does those sort of things, but at the same time, I

>think it can also set my FIL up to expect the red carpet treatment

>from us and he'll come to resent my MIL and BIL for not doing the

>same for him when they're home. Does that make any sense? So sorry

>for rambling on about everything, but things are going from bad to

>worse at a remarkable rate of speed. I know my husband is both

>scared and frustrated and that hurts me. He said he could barely

>understand my FIL when they spoke on the phone yesterday. His voice

>is a low mumble now.

>

>Well, I think that's enough said for now. I will post again after

>his neuropsych. testing this Thursday. I know it's going to be a

>long and tiring day. Does anyone know if the tester generally

>breaks for lunch? I can't imagine my FIL starting the testing at

>9:30 a.m. and working right through lunchtime. Are family members

>allowed to be present during the testing? I know my MIL tends to

>try and coach my FIL to give the right answers. Just wondering.

>

>Hope all of you have a happy and safe Fourth of July!!

>

>Take care,

>April

>

>________________________________________________________________________

>

>15b. Re: FIL Can't Seem to Sit Still...And More!

> Posted by: " Gerry Deverell " gdev8@... gdev8

> Date: Tue Jul 4, 2006 7:38 am (PDT)

>

>April-

>I am so sorry that your FIL keeps everyone on pins and needles. I just

>wanted to comment on the asthma medication. Many asthma meds can make the

>person using them feel figity (sp), feel nervous and have increased heart

>rate, but usually these symtpoms calm down after awhile. Perhaps, the new

>med your FIL is on aggravates his current hyperactivity. You may want to

>do a little research and check the side affects with your pharmacist or

>physician.

>XOXOXO

>Gerry

[Guest guest]

My DIL vigoriously shook her head no when my Gent said he had taken a bath.

I said,

" Well honey she was with you until ten-thirty last night. " She said, " I

watched you, and you didn't take a shower. You were out of it./ " -- Well, to

make

a long story short, My LO got hot under the collar, and I was quick to calm

the situation down. He said, " I am not crazy yet! "

How to care for them is of utmost importance. LBD can flip into a rage in a

blink of an eye. Caregivers can keep the patients and their own lives

peaceful with a little knowhow.

Imogene

In a message dated 7/4/2006 6:59:29 PM Central Daylight Time,

rriddle@... writes:

April -

Your FIL has (at least) two common non-motor dysfunctions prevalent with

those with Atypical Parkinsonism disorders: akathisia (restlessness; can't

sit still) and apathy (difficulty sustaining an activity, diminished

motivation, and indifference). An anti-depressant might work but it seems

like your FIL is already taking lots of medication.

I've recommend this before: I think it would be beneficial if your MIL and

BIL could take some classes in caregiving for people with dementia (or read

" The 36-Hour Day " book mentioned lately on the list). This would be

beneficial to not only them but also your FIL.

At whatever appt where the results of the neuropsych testing will be

discussed, is everyone (including your husband and BIL) attending and has

the neurologist been primed to discuss moving your FIL into a

facility? Discuss w/the neurologist: how do you determine when someone

needs to go to a facility; is your FIL eligible for Assisted Living or must

he go to a Skilled Nursing Facility; and does the doctor know of any

dementia-capable places? It seems like you are placing lots of hopes on

this doctor and it would be best if you all tell him/her in advance what

you want so that your hopes can be met.

I agree with you that attitude is very important. But it is your FIL's

life and if he wants to sit around thinking he's not doing well (and dies

" earlier " because of it), you gotta let him.

There may be a time soon when your husband cannot understand anything your

father says - on the phone or otherwise. And there may come a time when

your FIL has no interest in talking to your husband on the phone. At that

point, the only choice left for your husband will be to make a 3-hour drive

to see his father. And they will likely be very frustrating visits. None

of this is any fun, that's for sure.

Robin

>________________________________________________________________________

>________________________________________________________________________

>

>15a. FIL Can't Seem to Sit Still...And More! Digest

>Number 3113

> Posted by: " aswest1021 " aswest1021@... aswest1021

> Date: Tue Jul 4, 2006 6:30 am (PDT)

>

>Yesterday marked my in-laws' 46th wedding anniversary and it wasn't

>a good one. First of all, it's no surprise that my FIL didn't

>remember it was their anniversary. Secondly, my BIL called my

>husband saying my FIL wanted to talk to him because my MIL and BIL

>were being mean to him. A long story short, my FIL was upset

>because he was put on some new asthma medication. So, my MIL and

>BIL got him situated in the bed so that he could take his

>treatment. Well, no sooner did they get him moved to the bed did he

>decide he wanted to receive the med. in the sunroon. They simply

>refused to move him again and he got mad. Moving my FIL is no easy

>task, believe me. Needless to say, he felt put upon and wanted to

>speak to my husband. Of course, with my husband not being around

>him as often, he has a lot more patience with him. Each time he's

>gotten mad at my BIL, who is there with him every single day, he

>threatens to call my husband and tell him how badly he's being

>treated. Oh, I could go on and on about this.

>

>Anyway, I think the main reason my FIL wanted to be moved to the

>sunroon yesterday is because, here lately, it's as though he suffers

>from ADHD. He, literally, can't sit still for any given amount of

>time. Since he's in a motorized scooter, he just drives off from

>the dinner table or where have you on the turn of a dime. Or, he

>asks my MIL or BIL to move him somewhere else, just like he did

>yesterday. He can't seem to be satisfied staying in one spot. He

>gets very ansy. Is this common with LBD? What could cause it? He

>hasn't had any med. changes that I know of, other than his asthma

>med., but the restlessness has been happening longer than he's been

>on the med.

>

>Also, each time my husband asks my FIL how he's doing, he'll

>reply, " Not good. " We both find that incredibly frustrating because

>we want him to have a fighting spirit. We believe that anytime you

>lie back and kick up your heels, your battle will be over much

>quicker than if you work at getting better. We're not fooling

>ourselves here. Trust me, we know the reality of what we're

>facing. At the rate my FIL is going, he won't be around in another

>year. Would it not help, at least somewhat, for him to at least try

>and walk a little bit everyday, even if it's only to the front

>door? My FIL has become completely dependent on that darned

>motorized scooter and, therefore, isn't using his muscles much, at

>all. I often wonder if, perhaps, he should be working with a

>physical/occupational therapist. I really don't know if he's

>capable of doing more than he is now, so maybe I'm asking too much.

>It's just so painful to see someone wither away and give up. I

>witnessed that in my brother three years ago when he was diagnosed

>with terminal stomach cancer and there's nothing like it.

>

>Another question is how does my husband deal with the fact that each

>time he speaks to my FIL, he asks my husband, " When are you coming

>to see me? " We live 3 hours away from my in-laws and my husband goes

>to see them about twice a month. He, of course, has a family of his

>own and a very demanding job, so driving over there sometimes isn't

>easy to work in, but he does what he can. Still, my FIL makes him

>feel very guilty that he isn't doing more for him. Whenever my

>husband does go to see him, my FIL stays holed up in the sunroom

>away from everyone else. So, it isn't like my husband is getting any

>quality time with him. Also, whenever my in-laws come here, my

>husband bends over backwards to make my FIL feel extra special. For

>instance, my FIL loves shrimp, so we went out and bought a huge bag

>of shrimp so that we can have it when he comes tomorrow. I

>understand why he does those sort of things, but at the same time, I

>think it can also set my FIL up to expect the red carpet treatment

>from us and he'll come to resent my MIL and BIL for not doing the

>same for him when they're home. Does that make any sense? So sorry

>for rambling on about everything, but things are going from bad to

>worse at a remarkable rate of speed. I know my husband is both

>scared and frustrated and that hurts me. He said he could barely

>understand my FIL when they spoke on the phone yesterday. His voice

>is a low mumble now.

>

>Well, I think that's enough said for now. I will post again after

>his neuropsych. testing this Thursday. I know it's going to be a

>long and tiring day. Does anyone know if the tester generally

>breaks for lunch? I can't imagine my FIL starting the testing at

>9:30 a.m. and working right through lunchtime. Are family members

>allowed to be present during the testing? I know my MIL tends to

>try and coach my FIL to give the right answers. Just wondering.

>

>Hope all of you have a happy and safe Fourth of July!!

>

>Take care,

>April

>

>________________________________________________________________________

>

>15b. Re: FIL Can't Seem to Sit Still...And More!

> Posted by: " Gerry Deverell " gdev8@... gdev8

> Date: Tue Jul 4, 2006 7:38 am (PDT)

>

>April-

>I am so sorry that your FIL keeps everyone on pins and needles. I just

>wanted to comment on the asthma medication. Many asthma meds can make the

>person using them feel figity (sp), feel nervous and have increased heart

>rate, but usually these symtpoms calm down after awhile. Perhaps, the new

>med your FIL is on aggravates his current hyperactivity. You may want to

>do a little research and check the side affects with your pharmacist or

>physician.

>XOXOXO

>Gerry

------------------------

[Guest guest]

April,

I laughed as I read your email. Mom complained about how awful everything was

for 4 years! I think that is suppose to produce guilt in all that sit and

listens. The day care people use to tell me that she was fine until I showed up

and then things got " bad. " So, while you are wondering if he'll make the years

end, as I did, be assured he will probably see more than one year.

If Mom could have used the phone, she would have called my daughter every day to

tell her how awful I was.

At the end of 4 years, and as her eating diminished somewhat, I missed a day of

feeding her at the nh. When I went the following noon, she looked at me and

asked why I didn't come yesterday.! Actually I think it was the same evening.

And she hadn't been walking for over a year.

So take it a day at a time. Your husband is doing the best he can and 3 hours

is a long drive. That is just the way it is for now. And it sounds like your

FIL is being well taken care of at the moment.

Some of it is learning to be patient for your MIL and BIL when they are doing

all they are doing. I remember working so hard only to hear she wanted something

else and sometimes I got frustrated which never helped anything.

I remember one women in a support group I went to tell everyone, " I quit my job,

moved half way across the US, have taken care of my Mom for over 10 years, and

there really is no reward for that. " And there isn't any thank you, or I

appreciate that, as they just aren't able to do that, for the most part.

It is just hard.

Hugs and lots of encouragement across the miles.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02

No dx other than mine.

FIL Can't Seem to Sit Still...And More!

Yesterday marked my in-laws' 46th wedding anniversary and it wasn't

a good one. First of all, it's no surprise that my FIL didn't

remember it was their anniversary. Secondly, my BIL called my

husband saying my FIL wanted to talk to him because my MIL and BIL

were being mean to him. A long story short, my FIL was upset

because he was put on some new asthma medication. So, my MIL and

BIL got him situated in the bed so that he could take his

treatment. Well, no sooner did they get him moved to the bed did he

decide he wanted to receive the med. in the sunroon. They simply

refused to move him again and he got mad. Moving my FIL is no easy

task, believe me. Needless to say, he felt put upon and wanted to

speak to my husband. Of course, with my husband not being around

him as often, he has a lot more patience with him. Each time he's

gotten mad at my BIL, who is there with him every single day, he

threatens to call my husband and tell him how badly he's being

treated. Oh, I could go on and on about this.

Anyway, I think the main reason my FIL wanted to be moved to the

sunroon yesterday is because, here lately, it's as though he suffers

from ADHD. He, literally, can't sit still for any given amount of

time. Since he's in a motorized scooter, he just drives off from

the dinner table or where have you on the turn of a dime. Or, he

asks my MIL or BIL to move him somewhere else, just like he did

yesterday. He can't seem to be satisfied staying in one spot. He

gets very ansy. Is this common with LBD? What could cause it? He

hasn't had any med. changes that I know of, other than his asthma

med., but the restlessness has been happening longer than he's been

on the med.

Also, each time my husband asks my FIL how he's doing, he'll

reply, " Not good. " We both find that incredibly frustrating because

we want him to have a fighting spirit. We believe that anytime you

lie back and kick up your heels, your battle will be over much

quicker than if you work at getting better. We're not fooling

ourselves here. Trust me, we know the reality of what we're

facing. At the rate my FIL is going, he won't be around in another

year. Would it not help, at least somewhat, for him to at least try

and walk a little bit everyday, even if it's only to the front

door? My FIL has become completely dependent on that darned

motorized scooter and, therefore, isn't using his muscles much, at

all. I often wonder if, perhaps, he should be working with a

physical/occupational therapist. I really don't know if he's

capable of doing more than he is now, so maybe I'm asking too much.

It's just so painful to see someone wither away and give up. I

witnessed that in my brother three years ago when he was diagnosed

with terminal stomach cancer and there's nothing like it.

Another question is how does my husband deal with the fact that each

time he speaks to my FIL, he asks my husband, " When are you coming

to see me? " We live 3 hours away from my in-laws and my husband goes

to see them about twice a month. He, of course, has a family of his

own and a very demanding job, so driving over there sometimes isn't

easy to work in, but he does what he can. Still, my FIL makes him

feel very guilty that he isn't doing more for him. Whenever my

husband does go to see him, my FIL stays holed up in the sunroom

away from everyone else. So, it isn't like my husband is getting any

quality time with him. Also, whenever my in-laws come here, my

husband bends over backwards to make my FIL feel extra special. For

instance, my FIL loves shrimp, so we went out and bought a huge bag

of shrimp so that we can have it when he comes tomorrow. I

understand why he does those sort of things, but at the same time, I

think it can also set my FIL up to expect the red carpet treatment

from us and he'll come to resent my MIL and BIL for not doing the

same for him when they're home. Does that make any sense? So sorry

for rambling on about everything, but things are going from bad to

worse at a remarkable rate of speed. I know my husband is both

scared and frustrated and that hurts me. He said he could barely

understand my FIL when they spoke on the phone yesterday. His voice

is a low mumble now.

Well, I think that's enough said for now. I will post again after

his neuropsych. testing this Thursday. I know it's going to be a

long and tiring day. Does anyone know if the tester generally

breaks for lunch? I can't imagine my FIL starting the testing at

9:30 a.m. and working right through lunchtime. Are family members

allowed to be present during the testing? I know my MIL tends to

try and coach my FIL to give the right answers. Just wondering.

Hope all of you have a happy and safe Fourth of July!!

Take care,

April

[Guest guest]

Donna, this makes me wonder if that is why my mother cries for me and no one

else? She

can't talk anymore but she can still cry!

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Eltroxin, Tylenol 1g 3 times a day

Off Aricept since Feb./06

On " gentle care " June 30/06, spoon-fed pureed foods, thickened fluids

>

> April,

>

> I laughed as I read your email. Mom complained about how awful everything was

for 4

years! I think that is suppose to produce guilt in all that sit and listens.

The day care

people use to tell me that she was fine until I showed up and then things got

" bad. " So,

while you are wondering if he'll make the years end, as I did, be assured he

will probably

see more than one year.

>

> If Mom could have used the phone, she would have called my daughter every day

to tell

her how awful I was.

>

> At the end of 4 years, and as her eating diminished somewhat, I missed a day

of feeding

her at the nh. When I went the following noon, she looked at me and asked why I

didn't

come yesterday.! Actually I think it was the same evening. And she hadn't been

walking

for over a year.

>

> So take it a day at a time. Your husband is doing the best he can and 3 hours

is a long

drive. That is just the way it is for now. And it sounds like your FIL is being

well taken care

of at the moment.

>

> Some of it is learning to be patient for your MIL and BIL when they are doing

all they are

doing. I remember working so hard only to hear she wanted something else and

sometimes I got frustrated which never helped anything.

>

> I remember one women in a support group I went to tell everyone, " I quit my

job, moved

half way across the US, have taken care of my Mom for over 10 years, and there

really is

no reward for that. " And there isn't any thank you, or I appreciate that, as

they just aren't

able to do that, for the most part.

>

> It is just hard.

>

> Hugs and lots of encouragement across the miles.

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year

in a nh.

>

> She was almost 89 when she died in '02

>

> No dx other than mine.

>

>

[Guest guest]

Hi April,

I can relate to some of what you say. Some asthma meds can make you " jumpie. "

Is that a possibility? Just my 2-cents.

Also, my FIL says the same thing when asked how he's doing. I ask what can I

do to help you? He usually has an idea and I try to fill it, then he seems

better for a time. You just never know what's going through their minds, which

makes it hard to comfort them. I believe that my FIL can " sense " the frustration

in my MIL and I think that really bothers him. When she is in the downy dumps he

seems more so too!

Not sure if this helps at all, but maybe it just reassures you, somehow.

Tori

FIL dx 1/06, saw signs from 2004, kidney failure 2-06, NH 3/06, kicked out by

insurance, diabetes, hx of prostate cancer, artificial sphinxter implanted

(device to pinch in order to empty bladder), currently driving MIL crazy at

their home.

---------------------------------

Want to be your own boss? Learn how on Yahoo! Small Business.

[Guest guest]

Hi April and others,

I am new to the list, still figuring out how all this works. Its a

bit overwhelming but also reassuring that there are others dealing

with this.

Re: the comment that FIL cannot sit still, I wanted to say my father

is like that. The other people in his care home have Alz. and seem

different. He is so restless that he wants to be wherever he is

not. He sees me, wants to go " out. " I drag him out on his seated

walker, he pulls himself into the car, we go to Starbucks, I drag

him in (we are quite a sight) and then he is full after one bite of

a treat and wants to " go to his room. " On our way back he wants a

treat, or a ride, or......its constant and his attention span and

memory are only seconds long. Even in his room, he is up, he is

hungry, he is full, he is tired, each thing a second or two apart.

Blessings,

[Guest guest]

Donna,

My mother is so aware of what is going on. Yes, perhaps if I mention how

frustrating it

must be for her to not be able to communicate it might make her feel like I

understand her

frustration. I do try to understand what she says but recently the words are

too mumbled.

Today was a good day. The bedrest she has been on seems to be agreeing with her

in that

her eyes are open every day now and today they stayed open a long time. She

even smiled

a few times and I haven't seen that in years. She was able to say no, that she

does not

want to go back into her wheelchair, yes she is comfortable in bed, so the nh is

going to

go with that for a while longer, will even get her an air mattress that changes

pressure

points if it goes on for any length of time. I told Mom that they agreed to her

wishes on

the subject for now to let her know that she had some input that was heard. I

do realize

the risks of bedrest, pressure sores, aspiration with her choking, pneumonia,

but for now

it seems to be best for her.

However, her swallowing is very compromised and she had to be cued to swallow

while I

was there for every sip of every drink she had. Some choking but drinking well,

eating

little.

Today she starts on a new pain med, Dilotid, which may take her down

cognitively. She is

comfortable while in bed but needs pain management for when she is gotten up. I

am

torn about which route to go.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Eltroxin, Tylenol 1g 3 times a day

Off Aricept since Feb./06

On " gentle care " since June 30/06

> >

> > April,

> >

> > I laughed as I read your email. Mom complained about how awful everything

was for

4

> years! I think that is suppose to produce guilt in all that sit and listens.

The day care

> people use to tell me that she was fine until I showed up and then things got

" bad. " So,

> while you are wondering if he'll make the years end, as I did, be assured he

will probably

> see more than one year.

> >

> > If Mom could have used the phone, she would have called my daughter every

day to

tell

> her how awful I was.

> >

> > At the end of 4 years, and as her eating diminished somewhat, I missed a day

of

feeding

> her at the nh. When I went the following noon, she looked at me and asked why

I didn't

> come yesterday.! Actually I think it was the same evening. And she hadn't

been walking

> for over a year.

> >

> > So take it a day at a time. Your husband is doing the best he can and 3

hours is a

long

> drive. That is just the way it is for now. And it sounds like your FIL is

being well taken

care

> of at the moment.

> >

> > Some of it is learning to be patient for your MIL and BIL when they are

doing all they

are

> doing. I remember working so hard only to hear she wanted something else and

> sometimes I got frustrated which never helped anything.

> >

> > I remember one women in a support group I went to tell everyone, " I quit my

job,

moved

> half way across the US, have taken care of my Mom for over 10 years, and there

really is

> no reward for that. " And there isn't any thank you, or I appreciate that, as

they just

aren't

> able to do that, for the most part.

> >

> > It is just hard.

> >

> > Hugs and lots of encouragement across the miles.

> >

> > Donna R

> >

> > Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th

year in a nh.

> >

> > She was almost 89 when she died in '02

> >

> > No dx other than mine.

> >

> >

>

>

>

>

>

>

>

>