well last night was the first night this week that Clive has come to bed, he stays awake all night and nods all day dont know why this is? Spoke to doc as Clive keeps urinating in his under wear, its like he knows he needs to go but to late, has any one else had experience of this?,He has had tests for wee infections and also a bladder scan but all that was ok, so not sure what is going on, could it be the AZ? thank you for any help.
never wants to go to bed
- Thread starter unicorn
- Start date
It could be the AZ, dear Unicorn, especially as he has been checked out by the doctor. Is he upset by this? Perhaps he would wear some protection, just to help him until he gets to the toilet. It`s not an easy weakness to come to terms with, but he might be glad if you suggest it.
As for being awake all night, I can`t imagine what it does to you. I hope that if he actually had a good night`s sleep in bed last night, it might break the cycle.
You have a lot to come to terms with.
Take care
Love xx
As for being awake all night, I can`t imagine what it does to you. I hope that if he actually had a good night`s sleep in bed last night, it might break the cycle.
You have a lot to come to terms with.
Take care
Love xx
dear GrannieG you are always here helping others , you seem a really nice lady and thank you for your help, clive wears protection we got from the district nurse about 4 months ago, and to be truthful it doesnt seem to bother him some times he just sits in it and doesnt tell me till i smell it, sorry not some times he does that all the time, he doesnt wash or shower unless i tell him and we fall out, he just seems so difficult all the time, he doesnt want any thing to eat every time i ask, but as soon as the family finish eating he makes himself something, usually weetabix! I feel like knocking my head against a brick wall nearly every day, i suppose it becomes harder not easier, so i better prepare myself if that is possible!!!!!!!!!
unicorn said:
Dear unicorn, yes, I'm afraid it does get harder, and I don't think there's any way to prepare yourself.
I find the sleepless nights the hardest to deal with, my patience wears very thin when I've been up every two hours all night.
Incontinence is also hard to come to terms with, especially at the stage wnen they're not totally incontinent, but have frequent accidents.
I found pull-up padded pants better at this stage, because men especially seem to find it difficult to cope with pads. It's worth asking if the nurse can supply them. They are available in some areas, but not others. I had to buy them for John, but they're available from any chemist -- I used Boots own brand.
It could be that you will have to take over supervising his shower, I'm afraid they just forget what to do.
You're right, it is all part of the disease, and is a normal stage that most of us have to go through at some stage. It's not easy, though, so please keep posting and we'll try to help you.
Have your read the AS factsheets? Just click the factsheet logo at the top left of the page, there are lots of them. You might find the one on incontinence helpful.
Love,
Dear unicorn.
I know it might be difficult for you, and I know most of his challenging behaviour is because of his AZ, but I would try not to let him see you are worrying about him.
Don`t ask him if he`s hungry. Just say `Your dinner is on the table.` and leave it there. If he doesn`t eat it, take it away, but try not to show it`s bothered you.
As far as the urinating goes, he really mustn`t realize what he`s doing, as I`m sure he wouldn`t do it, if he did. It doesn`t make it any easier for you though.
This AZ disease affects the carers, almost as much as the sufferers, not forgetting other family members, and I don`t think that is always taken into consideration. As carers, we have to try every strategy for coping we can, and they won`t always work, but at least we tried.
Love xx
I know it might be difficult for you, and I know most of his challenging behaviour is because of his AZ, but I would try not to let him see you are worrying about him.
Don`t ask him if he`s hungry. Just say `Your dinner is on the table.` and leave it there. If he doesn`t eat it, take it away, but try not to show it`s bothered you.
As far as the urinating goes, he really mustn`t realize what he`s doing, as I`m sure he wouldn`t do it, if he did. It doesn`t make it any easier for you though.
This AZ disease affects the carers, almost as much as the sufferers, not forgetting other family members, and I don`t think that is always taken into consideration. As carers, we have to try every strategy for coping we can, and they won`t always work, but at least we tried.
Love xx
Dear Unicorn
You are having a rough passage, but I am afraid that it is par for the course.
I don't know about sleeping problems that is one thing Margaret has never suffered from on a regualar basis, could you ask the GP to try a course of sleeping pills just to get him into a sleeping patern?
With regard to showering I found that showering at the same time each day, in our case on arising seemed to do the trick. I don't ask Margaret just say come on it's time for our showers, shower her first and have mine when I have got her dried and dressed.
Simarly with eating just put the meal out and tell her it is ready, I have to feed her now, but before if she didn't eat I just removed it and waited until next meal time before offering anything else.
We had a lot of trouble with incontinence (she is doulbly incontinent) as she refused to wear pads, but as the illness progressed she became more compliant, and now just accepts them. Regular changing seems to be the answer, again I don't ask just say come on it is time to go to the toilet.
I have found in general that offering a choice which involves them making a decision is fatal, as they can't make decisions and won't admit it therefore refuse to do anything.
I think what I am saying in effect is that you have to soldier on and in time most things become if not easier at least workable, and everyone finds what works best for themselves.
Cheers Frank
You are having a rough passage, but I am afraid that it is par for the course.
I don't know about sleeping problems that is one thing Margaret has never suffered from on a regualar basis, could you ask the GP to try a course of sleeping pills just to get him into a sleeping patern?
With regard to showering I found that showering at the same time each day, in our case on arising seemed to do the trick. I don't ask Margaret just say come on it's time for our showers, shower her first and have mine when I have got her dried and dressed.
Simarly with eating just put the meal out and tell her it is ready, I have to feed her now, but before if she didn't eat I just removed it and waited until next meal time before offering anything else.
We had a lot of trouble with incontinence (she is doulbly incontinent) as she refused to wear pads, but as the illness progressed she became more compliant, and now just accepts them. Regular changing seems to be the answer, again I don't ask just say come on it is time to go to the toilet.
I have found in general that offering a choice which involves them making a decision is fatal, as they can't make decisions and won't admit it therefore refuse to do anything.
I think what I am saying in effect is that you have to soldier on and in time most things become if not easier at least workable, and everyone finds what works best for themselves.
Cheers Frank
Last edited:
