Re: hope for the best, but plan on the worst

[Guest guest]

,

You’ll have to forgive me if you’ve answered this question already but is

there no one who can come in and help you at all? I know in-home care if very

expensive so how about any church groups in your area who are willing to help?

Are there any senior services/mental health services that serve your area? Give

these agencies/churches/community centers a call and if they can’t help you

ask them who they think might be able to. Don’t hesitate to reach out for

help and I hope that you and your wife find some good people to help you

both soon. Sending you both strength.

Courage

From: gary.s.dale@...

Sent: Saturday, August 20, 2011 11:13 PM

To: LBDcaregivers

Subject: hope for the best, but plan on the worst

didn't have a very good day today- worn out with the frustration of the reality

of LBD. spent lot of day putting together the medical alert info. sheet for the

E.R. on the refrigerator.i enlarged the wallet size to 8 1/2 x 11 to fit those

plastic sheet holders. it shows my wife's illness, drugs NOT to give and drugs

OK to give. they have the info on this web site somewhere. it shows her current

meds and current drs. my goal is to keep her out of the #$%>!! hospital- they

will mess up your LO because you know more than they do. my wife (59 years

young) couldn't walk worth anything today and was off by 2' where ever i had to

take her- sofa, toilet , bed. i was even getting upset because kids were outside

playing and laughing like kids are suppose to do on sat. my wife is crying now

as i write this . seems like i can't have 10 minutes to myself. anyway, its'

been only 2 years since she had delusions and i see this just downhill. some

people out there have LOs 80 or so and hope they make it to 100. i don't get

that. this is a torture for everybody. i can't imagine going 30 more years of

this. we don't have what i call a happy fun marriage. she knows she is " not the

same " . i pray we don't suffer much longer- it is progressive, degenerative, and

irreversable. LBD is " the worst " also, my wife does have choking and hiccups-

probably LBD. i worry the most about falls. thanks for listening. gary

[Guest guest]

Dear ,

You really tell it like it is. It it helps, I feel for you.

Regards,

Helene in NY

>

> didn't have a very good day today- worn out with the frustration of the

reality of LBD. spent lot of day putting together the medical alert info. sheet

for the E.R. on the refrigerator.i enlarged the wallet size to 8 1/2 x 11 to fit

those plastic sheet holders. it shows my wife's illness, drugs NOT to give and

drugs OK to give. they have the info on this web site somewhere. it shows her

current meds and current drs. my goal is to keep her out of the #$%>!!

hospital- they will mess up your LO because you know more than they do. my wife

(59 years young) couldn't walk worth anything today and was off by 2' where ever

i had to take her- sofa, toilet , bed. i was even getting upset because kids

were outside playing and laughing like kids are suppose to do on sat. my wife is

crying now as i write this . seems like i can't have 10 minutes to myself.

anyway, its' been only 2 years since she had delusions and i see this just

downhill. some people out there have LOs 80 or so and hope they make it to 100.

i don't get that. this is a torture for everybody. i can't imagine going 30 more

years of this. we don't have what i call a happy fun marriage. she knows she

is " not the same " . i pray we don't suffer much longer- it is progressive,

degenerative, and irreversable. LBD is " the worst " also, my wife does have

choking and hiccups- probably LBD. i worry the most about falls. thanks for

listening. gary

>

[Guest guest]

said:

didn't have a very good day today- worn out with the frustration of the reality

of LBD

 

Hi ,

I have been in your place. Don't look at the big picture and how long you will

have to deal with this. No one knows their time with their LO. See the best in

each day and take it a step at a time or it is too overwhelming.  There were

days I was so hemmed in I couldn't go grocery shopping, my husband could no

longer figure out how to drive the electric cart at the grocery store and was

running into people and shelves. He would confuse reverse with forward and it

became a danger. I couldn't wheel him in a wheelchair and push a grocery cart

too to shop. I had to call in a caregiver for a limit of 4 hours, even though I

didn't need 4 hours and it was another expense. At times I called the church and

they sent a companion to sit with him while I went grocery shopping, but

they didn't do toileting and had to call me  home once in awhile, but they were

free for the time that I needed them. There are so many stresses dealing with

this disease. I found an

agency that would pay for half the time I needed a caregiver and I would pay

the other half. The agency had a deal with the Parkinson's Support Group in my

area and maybe there is something like that in your area too. It cost me only

$5.00 annually to join the Parkinson's Support Group and I never had to attend a

meeting, I didn't have the time, but got their deal with the care agency. It

saved me some dollars. I put the dollars I saved aside and after awhile I put my

husband in respite and took a week vacation while he was in Assisted Living for

a week in their dementia unit.  AL does not have doctors on staff  like a

nursing home and can not give them any medication other than what they are

already taking. So you do not have to worry about any changes in that regard

while your LO is there.  It gave me some free time and I was renewed to face LBD

for the rest of the year. Every now and then you have to give yourself a break

for your own sanity and

health. Sure, the first time my husband argued about going into AL, but I had

to think of my own health too and when I returned to pick him up after a week,

he had made friends with the staff and was hugging and kissing them good-bye. My

husband was a people person, so he made friends easily. It made it a little

easier to leave him places.  I also put him into an Adult Day Program for half a

day, until he got his stamina up, and then went to a full day for three days a

week, it kept him stimulated and gave me some free time. They pick them up by

bus and return them, but my husband had anxiety on the bus, because he knew the

way to the Day Program and when the bus turned off the route to pick another

person up,  it scared him on where they were taking him, so I drove him there

and picked him up each time. Sometimes even this amount of time that I gave

myself didn't relieve me from the stress I was feeling, which did my husband or

I no good. I was so

stressed at times that my husband could feel it and that would throw him off

for the day and give us both a bad day and the cycle continued. I had to get

creative to give myself breaks. Some things cost me, but it was worth the price

to give myself some free time. I would also pack a few items and check my

husband and I into the local Hilton for a weekend  (7 minutes away from home)

and easy to get home if needed. I was working full time at that time, and

working and dealing with LBD when I returned home gave me very little free

time.  I had a caregiver at the house, but when I returned home he was released

to go home. So, every 6 months I would check us into the Hilton and request a

handicap room, so it was equipped for my husband. My husband was happy, he had a

TV and I could relax and read a book, that I never had time to do at home.

My husband was safe in the room and I was never out of his sight.  I could

relax, I didn't have to cook or leave Jim's sight to do other things around the

house. There were reasonably priced restaurants near by and sometimes I ordered

room service or we were close to home to go home and eat, and I would swim laps

in their pool, which also released stress and gave me some exercise. My husband

would sit in his wheelchair under an umbrella and be safe.  It was the best for

both of us. I am not saying you need to do this, but it is some suggestions, you

need to give yourself a break somehow, so you are not feeling so stressed and

trapped. It is not good for your health and you need to think of yourself too.

It is not selfish to think of you, you have your own health to think about. You

deserve to have a life too, your wife once had a life and by no fault of either

of you, you have no life. 

I finally had to put my husband into a nursing home, because he got aggressive

and tried to kill me a few times in his confusion and delusions. After he got

into the nursing home, he was a kinder, gentler man toward me and I could enjoy

his company. Maybe my stress caused him to be aggressive, I don't know. You have

to feel your own way and what is best for both of you, but you do need to take

some time for you too somehow. Today, I have no health issues. I am 63 going on

64 in a few months. I am lucky that I never really had major health issues, but

I really tried to make sure I never did and take care of myself too. My husband

is deceased, it was a long battle from 2000-2011 and living with Parkinson's

symptoms before the dementia, delusions, and hallucinations began in 2000.

I am back at Square One, but I am living and free to enjoy life now and someday

you will too if you take care of your own health.

I miss my husband and wish I could have him back as he was when we first met,

but that is not the case, so I must move forward. It is my time now.

Take Care , I know it is not an easy road. There is more information now

than when my husband first began this journey and I hope you can find the help

and time that you need for yourself, it is a must to take care of yourself too.

Jan Colello

San Francisco Bay Area

Husband, Jim, deceased January 22, 2011

dx w/LBD Oct. 2003

 

 

 

 

 

 

 

 

To: LBDcaregivers

Sent: Saturday, August 20, 2011 8:13 PM

Subject: hope for the best, but plan on the worst

didn't have a very good day today- worn out with the frustration of the reality

of LBD. spent lot of day putting together the medical alert info. sheet for the

E.R. on the refrigerator.i enlarged the wallet size to 8 1/2 x 11 to fit those

plastic sheet holders. it shows my wife's illness, drugs NOT to give and drugs

OK to give. they have the info on this web site somewhere. it shows her current

meds and current drs.  my goal is to keep her out of the #$%>!! hospital- they

will mess up your LO because you know more than they do. my wife (59 years

young) couldn't walk worth anything today and was off by 2' where ever i had to

take her- sofa, toilet , bed. i was even  getting upset because kids were

outside playing and laughing like kids are suppose to do on sat. my wife is

crying now as i write this . seems like i can't have 10 minutes to myself.

anyway, its' been only 2 years since she had delusions and i see this just

downhill.  some people out there

have LOs 80 or so and hope they make it to 100. i don't get that. this is a

torture for everybody. i can't imagine going 30 more years of this.  we don't

have what i call a happy fun marriage.  she knows she is " not the same " . i pray

we don't suffer much longer- it is progressive, degenerative, and irreversable. 

LBD is " the worst "   also, my wife does have choking and hiccups- probably LBD. i

worry the most about falls.  thanks for listening.    gary

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

Welcome to LBDcaregivers. 

[Guest guest]

thanks janet for the words of encourgement. i am going to get out a little

today  (sun) and look at some new model homes and then buy a large plant at the

nursery.  my daughter is here and will hopefully look after her mom while i go.

A week ago , my wife's (kay) doctor took her off donzepil (aricept) because she

complained of upset stomach.  5 days later she is cognitively impaired so i put

her back on the low dose today. Her feet would freeze in place and not walk.

had to go back to the walker. i will call the dr. tomorrow and tell him what i

did.  have to make decisions myself sometimes.  walking is more important than

stomach ache. i think that is what upset me yesterday, plus i was very tired. 

thanks again,  

Subject: Re: hope for the best, but plan on the worst

To: " LBDcaregivers " <LBDcaregivers >

Date: Sunday, August 21, 2011, 11:41 AM

 

said:

didn't have a very good day today- worn out with the frustration of the reality

of LBD

 

Hi ,

I have been in your place. Don't look at the big picture and how long you will

have to deal with this. No one knows their time with their LO. See the best in

each day and take it a step at a time or it is too overwhelming.  There were

days I was so hemmed in I couldn't go grocery shopping, my husband could no

longer figure out how to drive the electric cart at the grocery store and was

running into people and shelves. He would confuse reverse with forward and it

became a danger. I couldn't wheel him in a wheelchair and push a grocery cart

too to shop. I had to call in a caregiver for a limit of 4 hours, even though I

didn't need 4 hours and it was another expense. At times I called the church and

they sent a companion to sit with him while I went grocery shopping, but

they didn't do toileting and had to call me  home once in awhile, but they

were free for the time that I needed them. There are so many stresses dealing

with this disease. I found an

agency that would pay for half the time I needed a caregiver and I would pay the

other half. The agency had a deal with the Parkinson's Support Group in my area

and maybe there is something like that in your area too. It cost me only $5.00

annually to join the Parkinson's Support Group and I never had to attend a

meeting, I didn't have the time, but got their deal with the care agency. It

saved me some dollars. I put the dollars I saved aside and after awhile I put my

husband in respite and took a week vacation while he was in Assisted Living for

a week in their dementia unit.  AL does not have doctors on staff  like a

nursing home and can not give them any medication other than what they are

already taking. So you do not have to worry about any changes in that regard

while your LO is there.  It gave me some free time and I was renewed to face

LBD for the rest of the year. Every now and then you have to give yourself a

break for your own sanity and

health. Sure, the first time my husband argued about going into AL, but I had to

think of my own health too and when I returned to pick him up after a week, he

had made friends with the staff and was hugging and kissing them good-bye. My

husband was a people person, so he made friends easily. It made it a little

easier to leave him places.  I also put him into an Adult Day Program for half

a day, until he got his stamina up, and then went to a full

day for three days a week, it kept him stimulated and gave me some free time.

They pick them up by bus and return them, but my husband had anxiety on the bus,

because he knew the way to the Day Program and when the bus turned off the route

to pick another person up,  it scared him on where they were taking him, so I

drove him there and picked him up each time. Sometimes even this amount of time

that I gave myself didn't relieve me from the stress I was feeling, which did my

husband or I no good. I was so

stressed at times that my husband could feel it and that would throw him off for

the day and give us both a bad day and the cycle continued. I had to get

creative to give myself breaks. Some things cost me, but it was worth the price

to give myself some free time. I would also pack a few items and check my

husband and I into the local Hilton for a weekend  (7 minutes away from home)

and easy to get home if needed. I was working full time at that time, and

working and dealing with LBD when I returned home gave me very little free

time.  I had a caregiver at the house, but when I returned home he was released

to go home. So, every 6 months I would check us into the Hilton and request a

handicap room, so it was equipped for my husband. My husband was happy, he had a

TV and I could relax and read a book, that I never had time to do at home.

My husband was safe in the room and I was never out of his sight.  I could

relax, I didn't have to cook or leave Jim's sight to do other things around the

house. There were reasonably priced restaurants near by and sometimes I ordered

room service or we were close to home to go home and eat, and I would swim laps

in their pool, which also released stress and gave me some exercise. My husband

would sit in his wheelchair under an umbrella and be safe.  It was the best for

both of us. I am not saying you need to do this, but it is some suggestions, you

need to give yourself a break somehow, so you are not feeling so stressed and

trapped. It is not good for your health and you need to think of yourself too.

It is not selfish to think of you, you have your own health to think about. You

deserve to have a life too, your wife once had a life and by no fault of either

of you, you have no life. 

I finally had to put my husband into a nursing home, because he got aggressive

and tried to kill me a few times in his confusion and delusions. After he got

into the nursing home, he was a kinder, gentler man toward me and I could enjoy

his company. Maybe my stress caused him to be aggressive, I don't know. You have

to feel your own way and what is best for both of you, but you do need to take

some time for you too somehow. Today, I have no health issues. I am 63 going on

64 in a few months. I am lucky that I never really had major health issues, but

I really tried to make sure I never did and take care of myself too. My husband

is deceased, it was a long battle from 2000-2011 and living with Parkinson's

symptoms before the dementia, delusions, and hallucinations began in 2000.

I am back at Square One, but I am living and free to enjoy life now and someday

you will too if you take care of your own health.

I miss my husband and wish I could have him back as he was when we first met,

but that is not the case, so I must move forward. It is my time now.

Take Care , I know it is not an easy road. There is more information now

than when my husband first began this journey and I hope you can find the help

and time that you need for yourself, it is a must to take care of yourself too.

Jan Colello

San Francisco Bay Area

Husband, Jim, deceased January 22, 2011

dx w/LBD Oct. 2003

 

 

 

 

 

 

 

 

To: LBDcaregivers

Sent: Saturday, August 20, 2011 8:13 PM

Subject: hope for the best, but plan on the worst

didn't have a very good day today- worn out with the frustration of the reality

of LBD. spent lot of day putting together the medical alert info. sheet for the

E.R. on the refrigerator.i enlarged the wallet size to 8 1/2 x 11 to fit those

plastic sheet holders. it shows my wife's illness, drugs NOT to give and drugs

OK to give. they have the info on this web site somewhere. it shows her current

meds and current drs.  my goal is to keep her out of the #$%>!! hospital- they

will mess up your LO because you know more than they do. my wife (59 years

young) couldn't walk worth anything today and was off by 2' where ever i had to

take her- sofa, toilet , bed. i was even  getting upset because kids were

outside playing and laughing like kids are suppose to do on sat. my wife is

crying now as i write this . seems like i can't have 10 minutes to myself.

anyway, its' been only 2 years since she had delusions and i see this just

downhill.  some people out there

have LOs 80 or so and hope they make it to 100. i don't get that. this is a

torture for everybody. i can't imagine going 30 more years of this.  we don't

have what i call a happy fun marriage.  she knows she is " not the same " . i pray

we don't suffer much longer- it is progressive, degenerative, and

irreversable.  LBD is " the worst "   also, my wife does have choking and

hiccups- probably LBD. i worry the most about falls.  thanks for listening. 

  gary

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

Welcome to LBDcaregivers.