Underlying issues

[Lona]

My husband has had dementia since 2015 and was able to cope quite well as it really only affected his short term memory at first. After about 2 years he progressed a bit but I was well able to care for him. January of this year he had a bowel infection with acute diarhea. He got anti biotics and it cleared up but since that infection his condition went seriously downhill. He has always known he has dementia and was always self analyising himself. He now goes round the clock not sleeping. He will go to bed then up after an hours sleep and eats loads of cakes and chocolate biscuits. I lead him back to his bed and after another hour he is up again either eating ice cream or crisps. This goes on all night and I am going round the clock now myself trying to get him to sleep. The doctor prescribed sleeping pills but they just made him worse as he still got up but didn't know who he was or where he was.

Social services suggested respite for a week to allow me a break to catch up on my sleep. I had a really stress free week but when he came home he was worse than before he went in. His behaviour during the night was dreadful and I just could not cope so I phoned the GP who came to the house and examined him. He thinks there is an underlying physical problem and has arranged for a whole body and brain scan. He is concerned about the loss of weight and with the amount of food he is consuming he should be overweight. The doctor suspects there could be a tumour which might have gone to his brain. I am really worried and wonder when it is all going to get sorted.

His physichatrist said that after a serious illness a patient can be left with Delirium and with also having dementia it can be worse. She says it can take up to a year to settle but sometimes it never settles.

 

[Weasell]

So some ideas but I am not sure if any of them are any good.
Depending on the scan results they may be very bad, but they are ideas and when you are as tired as you must be it isn’t always easy to think of your own ideas.

Get them doctor to prescribe an antidepressant.

Get the doctor to prescribe medication to reduce appetite .

Only offer porridge or plain toast ( try gluten free ) ? as snacks through the night. It could be argued that you are rewarding his behaviour by giving him exactly what treats he wants.You can request a dietician referral from the GP.

Up his fluids in the morning/ day in case he is confusing thirst with hunger.

Arrange for a longer period of respite care. His body clock may have stopped working, but a team of people may be able to work on getting him back into more of a pattern ( not that it seems to work last time!)

The information about the delirium is correct, and telling where delirium stops and dementia starts is not always easy.

You must be so worried, a lot of people reading this will have known sleepless nights, but what you are going through is dreadful.
Wishing you well with the scan, I hope you get a speedy result.

 

[karaokePete]

Hello and welcome to the forum @Lona.

I used to be very familiar with the sleepless days/nights due to what I used to call my wife's 'night time antics'. I was just making light of what was a distressing time for both of us.

Several tweaks of separate medication for anxiety and depression, as well as her dementia meds helped the situation, for the most part.

I'm glad that, like me, you seem to have a proactive GP as many people don't get that and it's valuable support.

I hope you both get some rest tonight.

 

[Lona]

So some ideas but I am not sure if any of them are any good.
Depending on the scan results they may be very bad, but they are ideas and when you are as tired as you must be it isn’t always easy to think of your own ideas.

Get them doctor to prescribe an antidepressant.

Get the doctor to prescribe medication to reduce appetite .

Only offer porridge or plain toast ( try gluten free ) ? as snacks through the night. It could be argued that you are rewarding his behaviour by giving him exactly what treats he wants.You can request a dietician referral from the GP.

Up his fluids in the morning/ day in case he is confusing thirst with hunger.

Arrange for a longer period of respite care. His body clock may have stopped working, but a team of people may be able to work on getting him back into more of a pattern ( not that it seems to work last time!)

The information about the delirium is correct, and telling where delirium stops and dementia starts is not always easy.

You must be so worried, a lot of people reading this will have known sleepless nights, but what you are going through is dreadful.
Wishing you well with the scan, I hope you get a speedy result.

His appetite is fine during the day, it's during the night he gets up and eats cakes and biscuits. He has just been up and eaten a double decker and 2 cakes. He goes back to bed but will be up again in another hour and have more snacks. He doesn't remember next day all that he eats. It will be 3am before he goes into a more proper sleep then I go to bed but once I'm sleeping I don't know when he gets up. I got up this morning at 9am and he was sitting in his chair fully dressed but dozing )

 

[Lona]

So some ideas but I am not sure if any of them are any good.
Depending on the scan results they may be very bad, but they are ideas and when you are as tired as you must be it isn’t always easy to think of your own ideas.

Get them doctor to prescribe an antidepressant.

Get the doctor to prescribe medication to reduce appetite .

Only offer porridge or plain toast ( try gluten free ) ? as snacks through the night. It could be argued that you are rewarding his behaviour by giving him exactly what treats he wants.You can request a dietician referral from the GP.

Up his fluids in the morning/ day in case he is confusing thirst with hunger.

Arrange for a longer period of respite care. His body clock may have stopped working, but a team of people may be able to work on getting him back into more of a pattern ( not that it seems to work last time!)

The information about the delirium is correct, and telling where delirium stops and dementia starts is not always easy.

You must be so worried, a lot of people reading this will have known sleepless nights, but what you are going through is dreadful.
Wishing you well with the scan, I hope you get a speedy result.

His appetite is fine during the day, it's during the night he gets up and eats cakes and biscuits. He has just been up and eaten a double decker and 2 cakes. He goes back to bed but will be up again in another hour and have more snacks. He doesn't remember next day all that he eats. It will be 3am before he goes into a more proper sleep then I go to bed but once I'm sleeping I don't know when he gets up. I got up this morning at 9am and he was sitting in his chair fully dressed but dozing )

Hello and welcome to the forum @Lona.

I used to be very familiar with the sleepless days/nights due to what I used to call my wife's 'night time antics'. I was just making light of what was a distressing time for both of us.

Several tweaks of separate medication for anxiety and depression, as well as her dementia meds helped the situation, for the most part.

I'm glad that, like me, you seem to have a proactive GP as many people don't get that and it's valuable support.

I hope you both get some rest tonight.

This new GP who has just joined our practice was really concerned about my welfare as well and told me to call him if I think I can no longer cope. We have no family support as my son lives in NZ and my daughter doesn't want to know.

 

[Lona]

His appetite is fine during the day, it's during the night he gets up and eats cakes and biscuits. He has just been up and eaten a double decker and 2 cakes. He goes back to bed but will be up again in another hour and have more snacks. He doesn't remember next day all that he eats. It will be 3am before he goes into a more proper sleep then I go to bed but once I'm sleeping I don't know when he gets up. I got up this morning at 9am and he was sitting in his chair fully dressed but dozing )

This new GP who has just joined our practice was really concerned about my welfare as well and told me to call him if I think I can no longer cope. We have no family support as my son lives in NZ and my daughter doesn't want to know.

I would like to add that before the infection my hubby slept soundly with a sleeping pill but since the infection cleared his brain seems to reject all sleeping pills and his wanderings at night have got worse. Dr prescribed Trazdone, Temazepam Lorazapam and Diazapine plus zoplicone all to no avail. He takes 15ml mitrazapine at bedtime which used to work but I feel he is used to them now. He also takes Holoperidol twice daily. His system seems to fight all medication. I'm praying that the CT scan can get to the bottom of his rapid deterioation