Re: Introduction from Calif. (sorry about the length)

[Guest guest]

Jan I just realized the PS on my post did not post, I asked where at in

California do you live, I live in the Bay Area in ez. Actually I heard

of people here with the same last name as yours.

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: Introduction from Calif. (sorry about the

>length)

>Date: Fri, 08 Nov 2002 10:03:55 -0800

>

>oops I meant 4 hours a day help and 2 hours a night, 6 would have been

>awesome!

>

>

>

>

>

>

> >

> >Reply-To: LBDcaregivers

> >To: LBDcaregivers

> >Subject: Re: Introduction from Calif. (sorry about the

> >length)

> >Date: Fri, 08 Nov 2002 10:01:30 -0800

> >

> >Jan,

> >Welcome and don't feel guilty. My mom fell about 6 times in a two week

> >period breaking ribs etc. She was diaganosed last January. Her falls came

>a

> >few months later. She was living with my dad then had a bad fall

>resulting

> >in Hip replacement surgery on Sept 13. She was in a NH for 2 weeks and

>then

> >they decided thats all they can do for her( Kaiser did) so she is now

> >living

> >with my family for about a month now. She has good days and bad. Good

> >meaning she sits up straight is alert and talkative, almost like old

>times.

> >She is incontinant and can't walk or wheel herself around. She needs

> >constant help with arrangeing her pillow all night. She is constantly

> >getting constipated. THen it's enemas and poop all day long. On bad days

> >she

> >is in pain all day, wakes up 4 times and hour etc. It is taking it's toll

> >on

> >me, I have to be here at all times because she can't get around without

>my

> >help. Occasionly my brother will come to help out but he can only do so

> >much. My dad comes daily but can't not move her without risk of injury. I

> >run a daycare out of my home and have between 3 to 6 little ones at all

> >times during the day. It's hard because times like today she is doing so

> >well. But it changes daily some days great some days you would think

>there

> >is no tomorrow. Anyway we are in the process to try to get Medi-cal to

>kick

> >in so she can go to a nursing home. SHe thinks once there she will get

>well

> >enough to go home to dad and drive again etc. SHe says she will feel

>better

> >being around other people like her. If not for the daycare it may; not be

> >too bad. Actually it would still suck because we can not afford help.

>Right

> >now I just ended 4 hours a day and 6 hours a night help that was paid

>for.

> >Now I talked the lady into an hour a morning the next two weeks just to

>get

> >her up and about for $10 a day. So even though it will be so very hard to

> >do, she has to go. Everyone I talk with that has been there done that

>says

> >to do what is right for me. I feel that I have to do what is right for

>mom.

> >THen I remember I have a husband and four kids and I am only 50. I guess

>a

> >NH with a daughter that is well is better than having mom here with me

> >going

> >balistic. Good luck, and if Dad feels it is for the best you better go

>with

> >it now because later you will be so worn out and torn up and angry it

>will

> >be all the more harder. Good luck, you came to a great place for

> >understanding and support, we have all said that without this group we

> >would

> >be totally lost. I know it has helped me in ways I cannot even begin to

> >explain. Take care, you and yours will be in my prayers. Shirley

> >

> >

> >

> >

> >

> >

> > >

> > >Reply-To: LBDcaregivers

> > >To: LBDcaregivers

> > >Subject: Introduction from Calif. (sorry about the

> >length)

> > >Date: Fri, 08 Nov 2002 17:42:30 -0000

> > >

> > >I'm 57, husband 59 retired, married 39 years, kids out of house

> > >forever, father is 84 and moved in with us Aug 7 of this year...or

> > >was it last year...no it's only been 3 months. My brother stays with

> > >him so we get breaks to escape to our place in the hills when we want

> > >to. First symptoms evident 2 years ago, moved from apartment to

> > >assisted living in April 02, was given 30 days notice for leaving

> > >facility, with recommendation of a locked facility. Hubby and I

> > >agreed that wasn't an option at that point, so he moved in with us. I

> > >took him to U.C. Alzheimer's Center(UCD)for diagnosis which we

> > >received yesterday as LBD. My Dad is on Exelon for the dementia and

> > >hallucinations, and Paxel for his life long battle with anxiety. We

> > >will be going to a neurologist soon since his regular doctor had

> > >never heard of LBD and didn't bother to look it up before he called

> > >us with the UCD diagnosis. My Dad falls (no injuries yet) every few

> > >weeks then starts being careful, he can fix his breakfast using a $35

> > >microwave with a dial (no buttons) he can fix oatmeal (if he

> > >remembers the water), instant coffee, heat up a roll, cut-up fruit,

> > >sets the table, does dishes, exercises 30 min on recumbant stationary

> > >bike, and still tries to do anagrams. My husband and I have worked

> > >through our own depression caused by our loss of our life as it was

> > >before my father moved in and I have delt with the emotions of living

> > >with my eternally negative father and reliving my first 18 years of

> > >my life when I was always being either wrong or...no that was

> > >it...always being wrong! I'm in the process of selling my tax

> > >practice so all the burden won't fall on my husband during tax

> > >season. Ok that's about it. Compared to all the posts I've read here

> > >and elsewhere, we are very fortunate....but you know what...this

> > >still sucks...both for my Dad and us. Right now I'm curious about the

> > >prognosis and questions like how long will he be able to stay with

> > >us? My Dad said that if he needs daily nursing care he wants (or

> > >feels he should) to go to a facility. I've read 4-7 years from onset.

> > >Any opinions based on what I've said so far? Thanks...Jan

> > >PS where at in Calif, I live in the Bay Area in ez.

> >

> >

> >_________________________________________________________________

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>

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[Guest guest]

Jan,

Yup! It sucks.... I did the same with a Mother who was " eternally "

negative. And I also was wrong all my life, lost my life for the next

4 years and continued to be wrong. And I don't know the answers even at

this time as she passed away last month. I am still spinning. Maybe I

will have more good answers next year after I get 4 years of work done

that hasn't been done. But I didn't have a " house in the hills " and I

wouldn't have had the time to go there. Didn't have a husband. My

young daughter gave up her next 4 years too. ANd that was to help me so

I didn't go crazy.

Keep your chin up and just do the best you can do for you. I did it a

day at a time!! And 4 years of a day at a time is a long time.

Donna

To learn more about LBD Disease, please visit the Lewy Body Disease

Association site at:

http://www.lewybodydisease.org

[Guest guest]

Jan,

Yup! It sucks.... I did the same with a Mother who was " eternally "

negative. And I also was wrong all my life, lost my life for the next

4 years and continued to be wrong. And I don't know the answers even at

this time as she passed away last month. I am still spinning. Maybe I

will have more good answers next year after I get 4 years of work done

that hasn't been done. But I didn't have a " house in the hills " and I

wouldn't have had the time to go there. Didn't have a husband. My

young daughter gave up her next 4 years too. ANd that was to help me so

I didn't go crazy.

Keep your chin up and just do the best you can do for you. I did it a

day at a time!! And 4 years of a day at a time is a long time.

Donna

To learn more about LBD Disease, please visit the Lewy Body Disease

Association site at:

http://www.lewybodydisease.org

[Guest guest]

Shirley

You mentioned constipation in your post. Has anybody any tips for our latest

problem. While we've only lately heard that this is quite a common problem,

dad has been having this problem for a while, but it's just this week it's

become worse. This morning, he actually asked to go and see the doctor! Mum

bought him a bottle of something(sorry can't remember name off hand) over the

counter this morning in the chemist. Eventually managed to get some into

him, but now he won't eat. I went round to make his lunch today and he said

he didn't want any, nor would he have anything to drink. I didn't push it

and went back an hour later but still no go. He seems to think he has to

wait for this stuff to work before he can eat or drink anything. Tried

explaining slowly and calmly that this would probably have the opposite

effect, but to no avail. Any ideas?

Siobhan

[Guest guest]

Shirley

You mentioned constipation in your post. Has anybody any tips for our latest

problem. While we've only lately heard that this is quite a common problem,

dad has been having this problem for a while, but it's just this week it's

become worse. This morning, he actually asked to go and see the doctor! Mum

bought him a bottle of something(sorry can't remember name off hand) over the

counter this morning in the chemist. Eventually managed to get some into

him, but now he won't eat. I went round to make his lunch today and he said

he didn't want any, nor would he have anything to drink. I didn't push it

and went back an hour later but still no go. He seems to think he has to

wait for this stuff to work before he can eat or drink anything. Tried

explaining slowly and calmly that this would probably have the opposite

effect, but to no avail. Any ideas?

Siobhan

[Guest guest]

I talked to someone in the group last night and she said Sorbatol, it's an

over the counter medication that her ummm, I think sister who is a nurse

recommended. Worth a shot. Also I hear that Apricot Nectar is very good. My

mom got so bad she was impacted and the home nurse had to umm ahhh, kind of

dig around a bit. We have had to give her enemas which become very messy,

she is incontinent and I have to change her. With an enema she can go for

hours on end. Lately I have tried glycerin suppositories. She takes Vicodin

which makes the constipation worse. Make sure he is going because they say

it is important. Although I tell my mom every day is not necessary. Good

Luck, Shirley

>From: Sbogue9@...

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: Introduction from Calif. (sorry about the

>length)

>Date: Tue, 12 Nov 2002 09:01:07 EST

>

>Shirley

>

>You mentioned constipation in your post. Has anybody any tips for our

>latest

>problem. While we've only lately heard that this is quite a common

>problem,

>dad has been having this problem for a while, but it's just this week it's

>become worse. This morning, he actually asked to go and see the doctor!

>Mum

>bought him a bottle of something(sorry can't remember name off hand) over

>the

>counter this morning in the chemist. Eventually managed to get some into

>him, but now he won't eat. I went round to make his lunch today and he

>said

>he didn't want any, nor would he have anything to drink. I didn't push it

>and went back an hour later but still no go. He seems to think he has to

>wait for this stuff to work before he can eat or drink anything. Tried

>explaining slowly and calmly that this would probably have the opposite

>effect, but to no avail. Any ideas?

>

>Siobhan

>

>

>

[Guest guest]

>He seems to think he has to wait for this stuff to work before he

>can eat or drink anything. Tried explaining slowly and calmly that

>this would probably have the opposite effect, but to no avail. Any

>ideas?

Siobhan if what you gave your dad was a laxitive it may take up to 12

hours to work and they are fine once in awhile but are rough on the

body. My client and now my husband are both on 9 different

prescriptions a month most of them can cause constipation. My client

takes 3 doses of metamucil 1 day and the next day she takes 2 doses

and drinks a Senna tea before she goes to bed. The metamucil

directions are for 1 to 2 teaspoons in a glass of water we use a

whole tablespoon for her. She has had this problem for years and at

times will go up to 5 days with out a BM, if she goes that long we

kick in the Senna tea the next night also which usually does the

trick. We will use an enema only when she gets uncomfortable and is

asking to go into the bathroom every half hour which doesn't happen

very often. My husband takes 2 Fibercon a day and that seems to do

the trick for him, if he has a problem I will give him a cup of the

Senna tea and by the next morning he is able to go. With both of them

I try to make sure that they drink plenty of fluids. The reason I

don't just give both of them the Senna tea every night is because we

tried it with my client and it made her too loose and caused some

embarresing problems. If your father isn't already taking a fiber

medicine everyday perhaps you should talk to him about starting. My

client is an extreme case but she has been battling it for years

whereas my husband has just had the problem for a few years.

Hopefully by the time you read this the the stuff you gave your dad

will have worked, but it will probably keep happening until he starts

taking something everyday to help things along. Barb

[Guest guest]

>He seems to think he has to wait for this stuff to work before he

>can eat or drink anything. Tried explaining slowly and calmly that

>this would probably have the opposite effect, but to no avail. Any

>ideas?

Siobhan if what you gave your dad was a laxitive it may take up to 12

hours to work and they are fine once in awhile but are rough on the

body. My client and now my husband are both on 9 different

prescriptions a month most of them can cause constipation. My client

takes 3 doses of metamucil 1 day and the next day she takes 2 doses

and drinks a Senna tea before she goes to bed. The metamucil

directions are for 1 to 2 teaspoons in a glass of water we use a

whole tablespoon for her. She has had this problem for years and at

times will go up to 5 days with out a BM, if she goes that long we

kick in the Senna tea the next night also which usually does the

trick. We will use an enema only when she gets uncomfortable and is

asking to go into the bathroom every half hour which doesn't happen

very often. My husband takes 2 Fibercon a day and that seems to do

the trick for him, if he has a problem I will give him a cup of the

Senna tea and by the next morning he is able to go. With both of them

I try to make sure that they drink plenty of fluids. The reason I

don't just give both of them the Senna tea every night is because we

tried it with my client and it made her too loose and caused some

embarresing problems. If your father isn't already taking a fiber

medicine everyday perhaps you should talk to him about starting. My

client is an extreme case but she has been battling it for years

whereas my husband has just had the problem for a few years.

Hopefully by the time you read this the the stuff you gave your dad

will have worked, but it will probably keep happening until he starts

taking something everyday to help things along. Barb