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Re: update from Marilyn

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Marilyn, so good to hear you are now in the driver's seat, but sad that it

depresses Bill. So good for you to be able to handle this experience while on

the road! Kudos!

My question is, is he on any meds to help him cognitviely, physically with the

rigidity in movement, or emotionally? One med at a time to reap its benefits

and start with a low dose, increase slowly if needed to determine success. So

many of our loved ones end up overmedicated and on the wrong meds leading to

severe complications.

He could go downhill with the anticipation of change, with the travel/change of

location at this time in his journey. Just remind him of the benefits he has

already expressed.

Another frequent cause of quick decline can be urinary tract infection, often

found to be a reality in our los. I'm so glad you have found us and are willing

to share.

Gibsons BC

Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD.

>

> Thanks for all of your information and help. As of several days ago I am doing

the driveing. I am 70 years old and learning how to drive the motor home was a

little intimidating. I drove from San , Ca to Lodi,Ca the 6th of August. The

traffic was crazy but I did it. My husband is a little unhappy with me doing all

of the driving but he will adjust. Today was a bad day for him. He said if he

can't drive any more he is useless. My comment to him was he is worth a lot more

than just driving a car. He has been depressed all day. I worried about him

having a stoke this AM because his walk was very slow and unsure footed. He

ackted like he was in slow motion today. He told me he didn't sleep much last

night and was thinking about the move. Today he said he is happy with the

move closer to family.

>

> In September we will look at mobile homes in parks in Oakhurst, Ca.. We will

get back to Yuma, Az in October and I will put the house up for sale.

>

> Again thank all of you for your input. It helps a lot. I am a little shocked

how fast Bill is going down hill.

>

> Marilyn

>

>

>

>

>

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Hi ; He is on aricept. The other meds are for diabetes. He has type 2.

That's another thing I have taken over is keeping track of his meds. I think a

lot of this is from depression. I do think the changes we have to make is a

problem for him although he said he is happy that we are going to move closer to

family. I believe part of the problem is feeling he isn't able to help a lot

with these changes. Since I've taken over driving has been hard for him. He's

made several comments of feeling useless if he can't drive. Monday we are going

to Oroville to see friends of ours and that should cheer him up. If I were in

his situation and realized what was happening I don't know how I would handle

it. I would be very depressed I'm sure. We just have to get through this. Today

was a tough day and thank God we were with good and understanding friends. We

have met so many good friends during out travels and this will be hard for both

of us to give up.

Tomorrow will be a better day.

Marilyn

________________________________

To: LBDcaregivers

Sent: Saturday, August 8, 2009 11:34:08 PM

Subject: Re: update from Marilyn

 

Marilyn, so good to hear you are now in the driver's seat, but sad that it

depresses Bill. So good for you to be able to handle this experience while on

the road! Kudos!

My question is, is he on any meds to help him cognitviely, physically with the

rigidity in movement, or emotionally? One med at a time to reap its benefits and

start with a low dose, increase slowly if needed to determine success. So many

of our loved ones end up overmedicated and on the wrong meds leading to severe

complications.

He could go downhill with the anticipation of change, with the travel/change of

location at this time in his journey. Just remind him of the benefits he has

already expressed.

Another frequent cause of quick decline can be urinary tract infection, often

found to be a reality in our los. I'm so glad you have found us and are willing

to share.

Gibsons BC

Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD.

>

> Thanks for all of your information and help. As of several days ago I am doing

the driveing. I am 70 years old and learning how to drive the motor home was a

little intimidating. I drove from San , Ca to Lodi,Ca the 6th of August. The

traffic was crazy but I did it. My husband is a little unhappy with me doing all

of the driving but he will adjust. Today was a bad day for him. He said if he

can't drive any more he is useless. My comment to him was he is worth a lot more

than just driving a car. He has been depressed all day. I worried about him

having a stoke this AM because his walk was very slow and unsure footed. He

ackted like he was in slow motion today. He told me he didn't sleep much last

night and was thinking about the move. Today he said he is happy with the

move closer to family.

>

> In September we will look at mobile homes in parks in Oakhurst, Ca.. We will

get back to Yuma, Az in October and I will put the house up for sale.

>

> Again thank all of you for your input. It helps a lot. I am a little shocked

how fast Bill is going down hill.

>

> Marilyn

>

>

>

>

>

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i see your mom had pdd my father inlaw has been told he has it to.was there a

lot of flucuations in the start.i am just curious because he will be real good

then for no reason be real bad till he is put in the nh then after awhile he

gets back to normal almost.is this normal

Subject: Re: update from Marilyn

To: LBDcaregivers

Date: Sunday, August 9, 2009, 1:34 AM

 

Marilyn, so good to hear you are now in the driver's seat, but sad that it

depresses Bill. So good for you to be able to handle this experience while on

the road! Kudos!

My question is, is he on any meds to help him cognitviely, physically with the

rigidity in movement, or emotionally? One med at a time to reap its benefits and

start with a low dose, increase slowly if needed to determine success. So many

of our loved ones end up overmedicated and on the wrong meds leading to severe

complications.

He could go downhill with the anticipation of change, with the travel/change of

location at this time in his journey. Just remind him of the benefits he has

already expressed.

Another frequent cause of quick decline can be urinary tract infection, often

found to be a reality in our los. I'm so glad you have found us and are willing

to share.

Gibsons BC

Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD.

>

> Thanks for all of your information and help. As of several days ago I am doing

the driveing. I am 70 years old and learning how to drive the motor home was a

little intimidating. I drove from San , Ca to Lodi,Ca the 6th of August. The

traffic was crazy but I did it. My husband is a little unhappy with me doing all

of the driving but he will adjust. Today was a bad day for him. He said if he

can't drive any more he is useless. My comment to him was he is worth a lot more

than just driving a car. He has been depressed all day. I worried about him

having a stoke this AM because his walk was very slow and unsure footed. He

ackted like he was in slow motion today. He told me he didn't sleep much last

night and was thinking about the move. Today he said he is happy with the

move closer to family.

>

> In September we will look at mobile homes in parks in Oakhurst, Ca.. We will

get back to Yuma, Az in October and I will put the house up for sale.

>

> Again thank all of you for your input. It helps a lot. I am a little shocked

how fast Bill is going down hill.

>

> Marilyn

>

>

>

>

>

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Dear Marilyn,

You may want to eventually add namenda to the aricept.... it does improve

cognition, but I have to say that it did make Mom a lot drowsier. Some days

will be wonderful, some will be awful... that's the roller coaster that defines

Lewy. Stay with the group - it has been a Godsend to me.

Sending you hugs as you embark on this new journey,

Helene

from NY (Mom 75)

> >

> > Thanks for all of your information and help. As of several days ago I am

doing the driveing. I am 70 years old and learning how to drive the motor home

was a little intimidating. I drove from San , Ca to Lodi,Ca the 6th of

August. The traffic was crazy but I did it. My husband is a little unhappy with

me doing all of the driving but he will adjust. Today was a bad day for him. He

said if he can't drive any more he is useless. My comment to him was he is worth

a lot more than just driving a car. He has been depressed all day. I worried

about him having a stoke this AM because his walk was very slow and unsure

footed. He ackted like he was in slow motion today. He told me he didn't sleep

much last night and was thinking about the move. Today he said he is happy with

the move closer to family.

> >

> > In September we will look at mobile homes in parks in Oakhurst, Ca.. We will

get back to Yuma, Az in October and I will put the house up for sale.

> >

> > Again thank all of you for your input. It helps a lot. I am a little shocked

how fast Bill is going down hill.

> >

> > Marilyn

> >

> >

> >

> >

> >

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My mom lived an hour from me, working and raising 3 children, 2 dogs. I am sure

now that she put on showtime for my weekly visits, which was about all I could

fit in. Thankfully I paced myself because it proved to be a 13 year journey of

decline needing more and more of my intervention as needs increased. I am sure

I missed much of the fluctuating. What I did find was confusion over the fact

that we would make decisions about what kind of assistance she would need, then

on the next visit she would have changed her mind or cancelled the care we had

in place. LBD was much more of an unknown then. I thought her confusion and

cognitive loss was more due to side effects of the Sinemet she was taking for

her then diagnosed " Parkinsons " , which is all we thought she suffered from. Her

boyfriend who spent time with her on a daily basis was the 1 who expressed

concern about her driving, overall condition. She had no one there 24/7 until

mid stage when we put her into assisted living. I'm sorry I can't answer your

question. Hindsight is everything on this journey but LBD wasn't even mentioned

to me until she was admitted to nh care in a wheelchair, very confused,

hallucinating, needing 2 person assists with care. The fluctuations were

obvious as she progressed, but while in the early stages, I am sure they were

there, just not witnessed by myself. It's part of the condition.

> >

> > Thanks for all of your information and help. As of several days ago I am

doing the driveing. I am 70 years old and learning how to drive the motor home

was a little intimidating. I drove from San , Ca to Lodi,Ca the 6th of

August. The traffic was crazy but I did it. My husband is a little unhappy with

me doing all of the driving but he will adjust. Today was a bad day for him. He

said if he can't drive any more he is useless. My comment to him was he is worth

a lot more than just driving a car. He has been depressed all day. I worried

about him having a stoke this AM because his walk was very slow and unsure

footed. He ackted like he was in slow motion today. He told me he didn't sleep

much last night and was thinking about the move. Today he said he is happy with

the move closer to family.

> >

> > In September we will look at mobile homes in parks in Oakhurst, Ca.. We will

get back to Yuma, Az in October and I will put the house up for sale.

> >

> > Again thank all of you for your input. It helps a lot. I am a little shocked

how fast Bill is going down hill.

> >

> > Marilyn

> >

> >

> >

> >

> >

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Marilyn, also, a little bit of Zoloft might help the depression, a bit of

Sinemet the physical rigidity. There are many meds our loved ones cannot

tolerate and again, any new ones started should be started on a low dose, raised

slowly if indicated and 1 at a time so benefits/side effects can be noted and

dealt with. The Namenda works differently within the brain than Aricept and

many find using both beneficial cognitively.

I cannot imagine how being aware of needing someone to slowly take over all

responsibility within a marriage is tolerated. Feelings of depression and

feeling useless are certainly understood. I hope today is a better day for you

both.

> > >

> > > Thanks for all of your information and help. As of several days ago I am

doing the driveing. I am 70 years old and learning how to drive the motor home

was a little intimidating. I drove from San , Ca to Lodi,Ca the 6th of

August. The traffic was crazy but I did it. My husband is a little unhappy with

me doing all of the driving but he will adjust. Today was a bad day for him. He

said if he can't drive any more he is useless. My comment to him was he is worth

a lot more than just driving a car. He has been depressed all day. I worried

about him having a stoke this AM because his walk was very slow and unsure

footed. He ackted like he was in slow motion today. He told me he didn't sleep

much last night and was thinking about the move. Today he said he is happy with

the move closer to family.

> > >

> > > In September we will look at mobile homes in parks in Oakhurst, Ca.. We

will get back to Yuma, Az in October and I will put the house up for sale.

> > >

> > > Again thank all of you for your input. It helps a lot. I am a little

shocked how fast Bill is going down hill.

> > >

> > > Marilyn

> > >

> > >

> > >

> > >

> > >

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Marilyn, congratulations on your succesful moving and on your courage to drive a

motor home! I'm glad you could do it without complications. I hope everyting

goes well with you and Bill. Surely, the depression must be due to new

surroundings -it's hard for LBD patients to adjust to a new place. Maybe after a

few days, when he's more familiar with his new enviroment, he'll come out of it.

You know that this illness has that characteristic of being like a roller

coaster -one day it's up in the clouds, the next (day, hour, minutes) it's down,

down, down.

I'll have you both in my prayers. Hugs,

Raquel

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Marilyn,

Glad you made it safely. It is hard for someone who has taken care of

themselves to suddenly be dependent. My mom went throught 2-3 years of feeling

like she was worthless because she could no longer work for a living, clean

house, cook, etc. She now has accepted it and is just thankful she can see me.

It takes a while. It is a major change, and a person has to redefine his sense

of worth from what he can do to the fact that he just is. In Christian terms it

is the difference between trying to earn your worth and receiving it by God's

grace just because you are his creation and he loves you.

Best wishes as you take one day at a time.

Gurganus

Wilmington NC

> >

> > Thanks for all of your information and help. As of several days ago I am

doing the driveing. I am 70 years old and learning how to drive the motor home

was a little intimidating. I drove from San , Ca to Lodi,Ca the 6th of

August. The traffic was crazy but I did it. My husband is a little unhappy with

me doing all of the driving but he will adjust. Today was a bad day for him. He

said if he can't drive any more he is useless. My comment to him was he is worth

a lot more than just driving a car. He has been depressed all day. I worried

about him having a stoke this AM because his walk was very slow and unsure

footed. He ackted like he was in slow motion today. He told me he didn't sleep

much last night and was thinking about the move. Today he said he is happy with

the move closer to family.

> >

> > In September we will look at mobile homes in parks in Oakhurst, Ca.. We will

get back to Yuma, Az in October and I will put the house up for sale.

> >

> > Again thank all of you for your input. It helps a lot. I am a little shocked

how fast Bill is going down hill.

> >

> > Marilyn

> >

> >

> >

> >

> >

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