Re: Increased urge to urinate at night

[Guest guest]

Hi

Thank you for your suggestion and the link.

I have discussed these condom catheters with our doctor but at this stage we

do not think they are appropriate for Jim yet.

There seems to be something happening in his brain that gives him the urge

to go to the bathroom and nothing can divert him from this. He is like a

robot that won't stop until he has completed the " set of instructions " .

At this stage, even if he were wearing the condom catheter, he would still

be driven by this strong urge to make the trip to the bathroom and my sleep

would still be disturbed as I need to accompany him on this 'journey'.

As we walk to the bathroom, he pulls at his penis and his Depends pants and

we are concerned that he would just pull the condom catheter until it came

off and then I would have a worse mess to clean up J

He used to be on 25 mg of Seroquel at night but the urge to urinate was

stronger than the sedating effect of the Seroquel.

I withdrew the Seroquel because it made him like a sack of potatoes and that

made the trip to the bathroom so much more difficult, even with a

wheelchair.

I am reluctant to increase the Seroquel dose because even the 25 mg made him

groggy in the daylight as well.

At least without the Seroquel, he walks quite readily with me and we can be

back in bed within 10 minutes.

I am amazed at the one-eyed determination of the brain to drive him through

this 'programmed sequence' - nothing seems to be able to deter him from

doing it. Jim has no recollection the next day that he has had so many trips

to the bathroom.

Desmopressin worked for a couple of nights (on the maximum dose of 400 mcg)

but it seems to have stopped working now.

I am hoping that this will be a stage that soon passes and that these strong

urges will stop.

I cannot think of any ways to stop him wanting to get out of bed and go to

the loo.

Has anyone else had this experience? Is there any way to stop this strong

urge?

Elaine (61) from Sydney Australia caring for Jim (82)

Offically diagnosed LBD Oct 2009, but symptoms began at least 5 years

before.

[Guest guest]

Hi Sharon

Thanks for your great lateral thinking.

It sounds like it was a good solution for your dad.

At the moment, Jim is really unsteady on his feet and cannot stand for long

because of the blood pressure drop that makes him fall over.

However, good on you for finding a great solution that met your dad's needs!

Like all other aspects of this Lewy condition, things do change and who

knows - one day I may well be taking up all these great suggestions that

people are making because Jim's condition has changed.

Many thanks.

Elaine

[Guest guest]

I'll share the links of Anticholinergic Bladder Control Drugs b/c some are bad

for those w/ LBD so you want to choose wisely...

Anticholinergic Bladder Control Drugs: A List

Link to message from re: Anticholinergic Bladder Control Drugs: A List

http://health.groups.yahoo.com/group/LBDcaregivers/message/62093

Anticholinergic Bladder Control Drugs: A List -- Continue

Just a brief followup about the list:

http://health.groups.yahoo.com/group/LBDcaregivers/message/62320

>

> Hi

>

> Thank you for your suggestion and the link.

>

> I have discussed these condom catheters with our doctor but at this stage we

> do not think they are appropriate for Jim yet.

>

> There seems to be something happening in his brain that gives him the urge

> to go to the bathroom and nothing can divert him from this. He is like a

> robot that won't stop until he has completed the " set of instructions " .

>

> At this stage, even if he were wearing the condom catheter, he would still

> be driven by this strong urge to make the trip to the bathroom and my sleep

> would still be disturbed as I need to accompany him on this 'journey'.

>

> As we walk to the bathroom, he pulls at his penis and his Depends pants and

> we are concerned that he would just pull the condom catheter until it came

> off and then I would have a worse mess to clean up J

>

> He used to be on 25 mg of Seroquel at night but the urge to urinate was

> stronger than the sedating effect of the Seroquel.

>

> I withdrew the Seroquel because it made him like a sack of potatoes and that

> made the trip to the bathroom so much more difficult, even with a

> wheelchair.

>

> I am reluctant to increase the Seroquel dose because even the 25 mg made him

> groggy in the daylight as well.

>

> At least without the Seroquel, he walks quite readily with me and we can be

> back in bed within 10 minutes.

>

> I am amazed at the one-eyed determination of the brain to drive him through

> this 'programmed sequence' - nothing seems to be able to deter him from

> doing it. Jim has no recollection the next day that he has had so many trips

> to the bathroom.

>

> Desmopressin worked for a couple of nights (on the maximum dose of 400 mcg)

> but it seems to have stopped working now.

>

> I am hoping that this will be a stage that soon passes and that these strong

> urges will stop.

>

> I cannot think of any ways to stop him wanting to get out of bed and go to

> the loo.

>

> Has anyone else had this experience? Is there any way to stop this strong

> urge?

>

>

>

> Elaine (61) from Sydney Australia caring for Jim (82)

>

> Offically diagnosed LBD Oct 2009, but symptoms began at least 5 years

> before.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

Thanks so much for these links. They were very well timed. Tomorrow I'm off

to the doctor to discuss drugs and the PTNS (posterior tibial nerve

stimulation) that have been recommended by the group, as well as to discuss

a possible referral to a urologist and/or neurologist.

Incidentally, the doctor who does acupuncture has told me that she cannot do

anything that would really help the situation.

Thank you everyone for all your suggestions.

Elaine, in wet Sydney, Australia

[Guest guest]

An interesting development took place last night.

Just as the television news was finishing, Jim started to talk. I turned the

TV off and sat with him while he talked for at least one hour.

He was unexpectedly lucid and shared many things that were obviously on his

mind. For a man who is not normally given to " deep and meaningful "

conversation, this was very " deep and meaningful " . Some of it was from his

childhood, some about friends (some of whom have already died); some about

family; some about me and I was able to reassure him that I was here for the

long haul and that I had promised to love and to cherish " for better for

worse, in sickness and in health, ... "

I was also able to ask him questions such as " are you worried about me after

you die " and he said " no " ...

But what was amazing after this was - he slept right through the night and

didn't wake up until 9 am!

In my visit to the doctor this afternoon we discussed this new development

and wondered if Jim felt an awareness that he was dying.

We have decided to try a different approach and use melatonin and also the

" talk therapy " .

So tonight I have sat with him on the bed and just let him talk. He has

fallen asleep - now to see what happens tonight and whether we will have

multiple trips to the bathroom?

Elaine, in Sydney Australia