Re: Back To Donna R Once More

[Guest guest]

Dear Donna, Thank you for this message. A rhetorical question - we know the

answer only too well I guess, but: Why is it WE are the ones who know about

these matters and often the MDs don't even try to investigate? I carefully

looked at the Internet and PDR about Augmentin: drowsiness is a side effect for

which one's MD should be contacted. But, oh no, I don't think that could be the

problem, said the doc. Even the pharmacologist I generally turn to said he'd

never encountered such a reaction. Seems to me that given our LOs extreme

sensitivity to meds, almost anything is possible.

We have been cutting back on some of Mom's meds - Seroquel, Lexapro and

Sinemet. She rarely hallucinates at any dosage, anyway. This was an earlier

suggestion from a forum friend, and a really good one, I think. Once the UTI is

cleared up, I would like to cut back also on the Razadyne. She is certainly not

as sharp as 6 months ago, so it seems to be losing effectiveness. However, I

worry what she might be like without it. Which raises another whole issue about

switching to another memory med.

Anyway, I'm very grateful for your insight. Please let me know anytime you

have thoughts about my posts - I have so much to learn and you and others here

are great teachers.

Peace, Lin

Donna Mido wrote:

Lin,

I will try this again. It is the third time tonight. My webtv is giving me

trouble.

I think antibiotics make anyone sleepy. But I also think all the " normal " doses

of med that MDs give LBD patients are to much.

I made them take Mom off them. She woke up and stopped sitting around with her

head down sleeping.

When I had her at home, her GP worked with me and if we tried something and she

didn't do well on it, (which she didn't even with Aricept) he would tell me to

stop the meds.

I think we as caregivers worry to much about hallucinations. We want them to go

away. The MDs cooperate and gives our LOs to many and to much meds.

You shouldn't have to be worried about your Mom's unresponsiveness. She should

be seen by a Doctor and he could start to remove the meds, one at a time and see

what happens. And if it were my Mom I would take her off all of them and then

reintroduce some veeerrry slowly after she has been off them for a month or so.

I never waited 6 weeks to see how Mom adjusted. I took her off or cut down by

half and would try that.

You need to understand this is my own opinion. I just believe to much medication

is used.

Hugs,

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.

Re: Advice Requested on Excessive

Sleepiness/Thirst/Meds From Lin/Cut

Dear June, Thank you so much. You and this whole forum keep me sane, I think.

Her last blood work was in late Sept. All the tests are in the " normal " range,

but at the very low end. Maybe I should request having them done again. My

thanks again - I know it's late and I'm not sure where any of you all are, but

just know I'm grateful! Lin

June Christensen wrote: Since the test for diabetes is easily done with blood

work, I don't know why they couldn't do it, especially

if they happen to be taking blood for something else.

It's not that expensive of a test either. They tested

my husband for it many times in the last few years,

also thyroid function. Have they checked that on her

as well. If she has a low thyroid reading, that could

account for the tiredness. They could run both those

tests from one blood speciman.

--- l pratt wrote:

> Dear June - Sure have experienced that " writing off "

> behavior many times, but I expect more and all of us

> should provide it and our LOs deserve it. I work

> (non-medical) in senior health and residential care,

> and we don't tolerate this behavior towards

> olderand/or sick people from any staff. But MDs seem

> to get away with it. I am so angry. Yes, I agree

> about the progression; nonetheless, should I just

> sit back and watch or be assertive? The latter is my

> usual style. I had just recently heard about the

> Seroquel/diabetes connection - not sure how I missed

> it. Was very focused on the Seroquel and other bad

> side effects - cataracts, NMS, etc. Yes, she was on

> 150 mg for several years. Then down to 75 a year

> ago, back to 125 during the summer, and in last

> several weeks back to 50. Hope we can go down a bit

> more once the UTI is resolved. So, June, do you

> think it's reasonable to ask for further tests to at

> least rule out diabetes? I'm so grateful for your

> response. Peace, Lin

>

> June Christensen wrote:

> Lin: I hate to tell you this, but I think the docs

> and the medical profession as a whole look at people

> who are older with dementia (and other terminal

> diseases), and they sort of write them off. I felt

> this way at the hospital with my husband and also

> the

> NH and even Hospice. If the person were younger, I

> think they would do more about it. I don't know how

> many times I was told that " it's part of the disease

> progression " and they don't seem to want to go to

> any

> lengths to prolong it. If you get a newspaper that

> has Dr. Gott's column in it, read it today, as it

> deals with end-of-life measures. If you don't get

> it,

> let me know, and I'll post what was said.

>

> Also, the thirst and fatigue do seem to indicate

> diabetes, especially if she didn't drink a lot of

> water before. Is she on Seroquel? There is some

> evidence that use of Seroquel can bring on diabetes,

> and I have a name of an attorney firm that is filing

> lawsuits against medical facilities that have used

> Seroquel on people who later develop diabetes.

> (Unless she may have had it before the use of

> Seroquel, if they are using it.) The doctor is

> probably correct about part of it being the

> progression of the disease, particularly the

> sleepiness. That seems to happen with lots of them.

> I hope she will get to feeling better after the UTI

> is

> taken care of.

>

>

> --- l pratt wrote:

>

> > Dear Friends, As always, many thanks for being

> here.

> > Had a frustrating day with MDs disagreeing about

> > what to do for mom. The latest: she's become

> > progressively more tired over last few weeks,

> > although has complained of " fatigue " for at leat 9

> > months. In last few weeks she can't keep her eyes

> > open for any length of time. By evening, she is

> > apologizing for being poor company but " must

> sleep. "

> > She doesn't sleep when she closes her eyes, just

> > says she can't keep them open. I have been reading

> > about Sudden Onset Sleepiness and Excessive

> Daytime

> > Sleeping as part of PD and LBD, and am trying to

> > research safety of Provigil in LBD. The PD docs do

> > seem to use it a lot, but I cannot find much re

> its

> > use in LBD (except for a brief mention at the

> > LBDAssn site by Dr. Boeve). She does have another

> > UTI - big time, and we've started antibiotics for

> > that. In the past, the eye closing was always a

> > symptom of infections, but for several months she

> > didn't have an infection, yet the closing

> > kept on. She is just exhausted and very aware of

> > it. And it's getting worse almost daily. Also in

> the

> > past few weeks she has become extremely thirsty.

> > This is a woman we used to have beg to get her to

> > drink. Now she is always thirsty, especially for

> > cold water.

> >

> > The MD today shrugged off my concerns about

> > pre-dabetes (she does have slightly elevated sugar

> > levels), renal trouble (she is pre-renal) and my

> > questions about medication for the sleepiness. He

> > says I'm just in denial and that excessive

> > sleepiness and thirst are often symptoms of

> > professing dementia. Well, I am with her all the

> > time - I know about the dementia. And I do read -

> I

> > know these can go along with the disease. But . .

> .

> > wouldn't a good MD want to explore a bit and rule

> > out other problems?

> >

> > Has anyone else had experience with these symptoms

> > in their loved ones? And what might be the next

> > steps I could take? I realize there's only so much

> > to do for the dementia, but our LOs deserve the

> best

> > quality of life possible - and just ascribing

> > everything to the dementia seems like poor

> judgement

> > - minimally - to me.

> >

> > Thank you for letting me vent and for any

> > suggestions you may have.

> >

> > Peace, Lin

> >

> >

> >

> > ---------------------------------

> > Any questions? Get answers on any topic at Yahoo!

> > Answers. Try it now.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

>

________________________________________________________________________________\

____

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.yahoo.com

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Lin,

I think part of the problem is that we are with them a lot of the time if not 24

hours. We see things that no MD has privy to. And these patients are so good

at making sure the MD doesn't see much.

Unless we have our people in a facility or nh, and even then, the MD pokes his

head in once a week.

And then we have EGO! The Med profession, (Not everyone!) really doesn't want

to admit we may have some information they don't. I found it so helpful that I

could my GP for Mom and he always took calls and trusted what I was telling him.

But they mostly don't have access to the whole picture as we do.

Hugs,

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.

Re: Advice Requested on Excessive

Sleepiness/Thirst/Meds From Lin/Cut

Dear June, Thank you so much. You and this whole forum keep me sane, I think.

Her last blood work was in late Sept. All the tests are in the " normal " range,

but at the very low end. Maybe I should request having them done again. My

thanks again - I know it's late and I'm not sure where any of you all are, but

just know I'm grateful! Lin

June Christensen wrote: Since the test for diabetes is easily done with blood

work, I don't know why they couldn't do it, especially

if they happen to be taking blood for something else.

It's not that expensive of a test either. They tested

my husband for it many times in the last few years,

also thyroid function. Have they checked that on her

as well. If she has a low thyroid reading, that could

account for the tiredness. They could run both those

tests from one blood speciman.

--- l pratt wrote:

> Dear June - Sure have experienced that " writing off "

> behavior many times, but I expect more and all of us

> should provide it and our LOs deserve it. I work

> (non-medical) in senior health and residential care,

> and we don't tolerate this behavior towards

> olderand/or sick people from any staff. But MDs seem

> to get away with it. I am so angry. Yes, I agree

> about the progression; nonetheless, should I just

> sit back and watch or be assertive? The latter is my

> usual style. I had just recently heard about the

> Seroquel/diabetes connection - not sure how I missed

> it. Was very focused on the Seroquel and other bad

> side effects - cataracts, NMS, etc. Yes, she was on

> 150 mg for several years. Then down to 75 a year

> ago, back to 125 during the summer, and in last

> several weeks back to 50. Hope we can go down a bit

> more once the UTI is resolved. So, June, do you

> think it's reasonable to ask for further tests to at

> least rule out diabetes? I'm so grateful for your

> response. Peace, Lin

>

> June Christensen wrote:

> Lin: I hate to tell you this, but I think the docs

> and the medical profession as a whole look at people

> who are older with dementia (and other terminal

> diseases), and they sort of write them off. I felt

> this way at the hospital with my husband and also

> the

> NH and even Hospice. If the person were younger, I

> think they would do more about it. I don't know how

> many times I was told that " it's part of the disease

> progression " and they don't seem to want to go to

> any

> lengths to prolong it. If you get a newspaper that

> has Dr. Gott's column in it, read it today, as it

> deals with end-of-life measures. If you don't get

> it,

> let me know, and I'll post what was said.

>

> Also, the thirst and fatigue do seem to indicate

> diabetes, especially if she didn't drink a lot of

> water before. Is she on Seroquel? There is some

> evidence that use of Seroquel can bring on diabetes,

> and I have a name of an attorney firm that is filing

> lawsuits against medical facilities that have used

> Seroquel on people who later develop diabetes.

> (Unless she may have had it before the use of

> Seroquel, if they are using it.) The doctor is

> probably correct about part of it being the

> progression of the disease, particularly the

> sleepiness. That seems to happen with lots of them.

> I hope she will get to feeling better after the UTI

> is

> taken care of.

>

>

> --- l pratt wrote:

>

> > Dear Friends, As always, many thanks for being

> here.

> > Had a frustrating day with MDs disagreeing about

> > what to do for mom. The latest: she's become

> > progressively more tired over last few weeks,

> > although has complained of " fatigue " for at leat 9

> > months. In last few weeks she can't keep her eyes

> > open for any length of time. By evening, she is

> > apologizing for being poor company but " must

> sleep. "

> > She doesn't sleep when she closes her eyes, just

> > says she can't keep them open. I have been reading

> > about Sudden Onset Sleepiness and Excessive

> Daytime

> > Sleeping as part of PD and LBD, and am trying to

> > research safety of Provigil in LBD. The PD docs do

> > seem to use it a lot, but I cannot find much re

> its

> > use in LBD (except for a brief mention at the

> > LBDAssn site by Dr. Boeve). She does have another

> > UTI - big time, and we've started antibiotics for

> > that. In the past, the eye closing was always a

> > symptom of infections, but for several months she

> > didn't have an infection, yet the closing

> > kept on. She is just exhausted and very aware of

> > it. And it's getting worse almost daily. Also in

> the

> > past few weeks she has become extremely thirsty.

> > This is a woman we used to have beg to get her to

> > drink. Now she is always thirsty, especially for

> > cold water.

> >

> > The MD today shrugged off my concerns about

> > pre-dabetes (she does have slightly elevated sugar

> > levels), renal trouble (she is pre-renal) and my

> > questions about medication for the sleepiness. He

> > says I'm just in denial and that excessive

> > sleepiness and thirst are often symptoms of

> > professing dementia. Well, I am with her all the

> > time - I know about the dementia. And I do read -

> I

> > know these can go along with the disease. But . .

> .

> > wouldn't a good MD want to explore a bit and rule

> > out other problems?

> >

> > Has anyone else had experience with these symptoms

> > in their loved ones? And what might be the next

> > steps I could take? I realize there's only so much

> > to do for the dementia, but our LOs deserve the

> best

> > quality of life possible - and just ascribing

> > everything to the dementia seems like poor

> judgement

> > - minimally - to me.

> >

> > Thank you for letting me vent and for any

> > suggestions you may have.

> >

> > Peace, Lin

> >

> >

> >

> > ---------------------------------

> > Any questions? Get answers on any topic at Yahoo!

> > Answers. Try it now.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

>

________________________________________________________________________________\

____

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.yahoo.com

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Doctors don't have the whole picture with a lot of things. They continue to

research because of it. How can anyone possibly know all there is to know

about medicine? They can't. They are only human. But, boy! Don't in any way

convey that thought to some of them. EGO! Whew!

Then the good Doctors are the ones that don't mind your sharing your

knowledge with them, and they do get an " A " on their report card as far as I am

concerned. They are the ones that use your information to check it against

research data, and then put their knowledge, and other research data, with it

to

come up with a diagnosis and treatment. I know because I have had several

health issues for many years, and have observed. I've had the good the bad and

the

ugly. A few cute ones too. (grin)

Imogene

In a message dated 12/17/2006 1:29:06 AM Central Standard Time,

twomido@... writes:

Lin,

I think part of the problem is that we are with them a lot of the time if

not 24 hours. We see things that no MD has privy to. And these patients are

so good at making sure the MD doesn't see much.

Unless we have our people in a facility or nh, and even then, the MD pokes

his head in once a week.

And then we have EGO! The Med profession, (Not everyone!) really doesn't

want to admit we may have some information they don't. I found it so helpful

that I could my GP for Mom and he always took calls and trusted what I was

telling him.

But they mostly don't have access to the whole picture as we do.

Hugs,

Donna R