Re: Back To Donna R Re Excess Sleepiness

[Guest guest]

Dear Donna, Many thanks for your message. I'm not sure I understand about

antibiotics - do you mean making you groggy and unreponsive? And if after a

while the meds are just to much, is that a signal to cut back on them? As you

can tell, this overwhelming sleepiness to the point of being hard to rouse is

scaring me - mostly because it came on in just hours. Thank you so much. Peace,

Lin

Donna Mido wrote: Lin,

I think one of the other things that happens is our LOs get just so much meds

and while they help, after while it can get to be to much. And sometimes Mom got

an extra dose for some reason. I know that antibotics can do it, even to me.

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 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,

One of the other things that happen was that I went in to see Mom one day and

she sort of unresponsive. I asked the Nurses what was going on and about meds.

They assured me she was fine. I disagreed and they took her down and checked

her blood pressure. You should have seen them run to get her into bed and get

fluid into her.

It was dangerously low. I just thought of that after I wrote the last email to

you.

Hugs.

Donna R

[Guest guest]

Donna Mido wrote:

> 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.

Actually, having experienced Dad having hallucinations (which often came

when he had been on chronic Sinemet, so tweaking his dosage of that

would help for a while), I find the hallucinations less bothersome than

perhaps some others do...but Mom's hallucinations are of things which

are frightening to her and about angry things. It is the effect they

have on her that predicates how I seek to have the either resolved or

diminished. As we have discussed on the list before, some of our LOs

have hallucinations which are very benign and the caregiver rolls with

it. It doesn't sound like that's the case for 's mom and I know it

wasn't for mine.

> 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.

I agree that it's important to not overmedicate our LOs, but I would

research every medication she was taking (if it were me) to see what the

side effects can be as a means of identifying just which of them might

be the culprit (or more than one, even) before stopping her medications.

My favorite place for getting this kind of information is

www.rxlist.com. I have been able to get very detailed information there

about drug interactions, contraindications, side effects and precautions

which should be taken, as well as dosage amounts.

Mom falls asleep easily when she is sitting and doing nothing, but I am

confident that it is part of the dementia and how it affects her sleep.

I also think that is part why she feels fatigued, not to mention the

fact that she is far less active than she used to be. I know that if I

sit or lay around too much, it leaves me with a feeling of

malaise/fatigue...tired from not doing enough, rather than doing too much.

jacqui (in Puget Sound)