• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Sundowning and next to no sleep

Brother47

Registered User
Jan 18, 2020
58
Me again, sorry. Since my recent post about my brother sleeping anywhere in his home, his symptoms have worsened to the extent that he only really gets about an hours sleep at any one time and in between, seems to be pacing around his home. Last week I bought him a comfortable chair for his kitchen diner, which he where he seems to be sleeping rather than in bed. He loves this chair apparently and says it's so comfortable. Prior to this he was falling asleep at the kitchen table on a dining chair. I'm wondering if buying this chair hasn't helped. His appetite is going too. Just a few weeks back he was enjoying the food his daily carer prepares for him but now he only takes a few mouthfuls. He used to eat the whole meal and a desert after with yoghurt too. I don't know how he manages to find the energy to keep pacing between the short sleeps. Since Sunday, in total he's only slept about 7 hours and the carer is reporting that he's falling asleep whilst eating his lunch. I ring him every day (I live three hours away and he hasn't got any other family) and these last few days it takes me two or three calls to get him to pick up. He is not struggling to recognise things such as the phone, the fridge etc I've spoken to the doctor about his sleep patterns. The doctor is reluctant to give him any sleep medication in case he falls over if he wakes up during the night. He lives alone by the way and is in the later stages of FTD.
 

lemonbalm

Registered User
May 21, 2018
419
Do you think it might be to do with the hot weather? It's difficult to sleep and he might be just getting up for a wander around if he's uncomfortably hot. It might explain the loss of appetite too. Is he drinking enough fluids, do you think?
 

Brother47

Registered User
Jan 18, 2020
58
I'm not sure but I don't think it's down to the hot weather. I started noticing his sleep disruption back in late May but just thought he was going through an odd patch as he has done before, but he was at least getting a couple of hours sleep at time and it was in bed. He would get up after a few hours, go to the bathroom, then downstairs for half an hour or so, (possibly make a drink?) and then back to bed throughout the night until about 8.30 am then he'd get dressed and go downstairs for the day. That went on for a week or so then he began to get active late evening, pacing around the house so the checking system showed and the length of time he slept since then has progressively got less and less. He was eating ok up until this weekend but I daresay his fatigue may have affected his appetite. We're fairly sure he's making himself hot drinks when the carer isn't there. She is there for a few hours daily and he usually drinks three or four hot drinks and a juice with his lunch. Even though he's eating very little he is still drinking the fluids she gives him which is good. She also leaves him some small fruit juices in cartons and some snacks (cereal bars which he likes) around the house for when she's not there. He doesn't drink many of the juices that she leaves, and lately only eats one or two of the cereal bars whereas before he'd eat the bars and the fruit she left along with his favourite crisps. For sure the heat won't help at the moment! Thank you for your input.
 

Cazzita

Registered User
May 12, 2018
579
My mum is the same, not sleeping at all at night these days and I see her on the kitchen camera in and out of the kitchen all night long, and finding something to eat every single time! I am now arranging for mum to go into care as she is not safe now. Good luck with finding a solution but for me, mum with FTD in mid-late stage now not sleeping I feel the dreaded time for care has come.
 

Brother47

Registered User
Jan 18, 2020
58
My mum is the same, not sleeping at all at night these days and I see her on the kitchen camera in and out of the kitchen all night long, and finding something to eat every single time! I am now arranging for mum to go into care as she is not safe now. Good luck with finding a solution but for me, mum with FTD in mid-late stage now not sleeping I feel the dreaded time for care has come.
Thank you for your response Cazzita. So sorry to hear your Mum is the same and yes, it does sound like the necessity for a care home is looming. We don't have cameras in my brothers home but the checking system we have in monitors any activity and shows what rooms so I'm sure he's pacing between his kitchen, hallway and front room. Yesterday he complained that his legs were aching. The carer checked his feet and legs but both appeared ok. However, as of the last couple of days he's lost interest in food. Today the carer made him his favourite meal of salmon, mash and veg, followed by rice pudding with fruit but he didn't want any of it and then he complained of stomach ache. The carer gave him a Fybrogel drink on the advice of the doctor who said the stomach ache could be constipation but then my brother apparently also said it hurt to pee so the doctor is also now given him course of antibiotics. The doctor is suggesting a meeting with myself, the care company and social services as he's saying my brothers condition is progressing rapidly. It seems like there's some medical problem with him almost every week and it's getting harder for my brother to explain what he's feeling as his speech is failing him. I suspect his immune system is failing him. Like your Mum, the constant pacing is taking a toll, however my brother doesn't recognise food anymore unless it's put on a plate in front of him, so he's losing weight. It's so awful to see and I'm sure you must feel quite helpless with your Mum being similar. I suspect the meeting will result in his going into some sort of care which I think is best all round but I'm dreading having to arrange it and put him through the stress. Me being so far away doesn't help and despite his condition, he will hate being moved out of his own home. I hope you get your mum sorted sooner and it hope it's not too distressing. Do take care of yourself. The worry that comes with caring for someone can take a toll. Best wishes.
 

Don T

Registered User
Jun 28, 2017
18
I having been going through the 10 minute sleeping cycle with my wife for quite a while, and as you live quite far away my comments on what has worked for me is probably not helpful for you, and she has LBD.
however, we sort have got into a bit a routine, with different sleep chunks. The first patch can last up to an hour, then she has chocolate ice cream. That will take her through for another hour or so, then a cup of decaf coffee and biscuit. Sometimes a couple of paracetamol helps calm her down. Normally between three and four we are settled, but it is up at anywhere around five or six.
 

Brother47

Registered User
Jan 18, 2020
58
I having been going through the 10 minute sleeping cycle with my wife for quite a while, and as you live quite far away my comments on what has worked for me is probably not helpful for you, and she has LBD.
however, we sort have got into a bit a routine, with different sleep chunks. The first patch can last up to an hour, then she has chocolate ice cream. That will take her through for another hour or so, then a cup of decaf coffee and biscuit. Sometimes a couple of paracetamol helps calm her down. Normally between three and four we are settled, but it is up at anywhere around five or six.
Thanks Don T. Gosh, that must be so hard for you. Yes, unfortunately I can't help him that way. He lives alone and it took ages for him to accept daily care. At the outset when we introduced daily care, he was adamant that he didn't need it and often told her to go but after a while he began to realise that it's quite nice to have lunch prepared and his cleaning and washing done but he is of the opinion that it's a luxury rather than a necessity. He had a bit of a routine of his own before he started to deteriorate but that got disrupted by this 'sundowning'. This week he's taken to going to bed right after the carer leaves around 2pm and just about manages some sleep in bed but rarely more than an hour and a half, then he goes downstairs and stays there apart from bathroom breaks (his bathroom is upstairs) until about 8am the following day, sleeping and pacing in regular intervals it seems. His tv is in his bedroom so we know he's not watching that any more other than maybe when he wakes up in the afternoon. I've offered to put a TV downstairs but he doesn't want that. Your comments on giving your wife decaff are useful. I hadn't thought about that. My brother only drinks Nescafe instant coffee (always hated tea) which can't help his restlessness. Maybe I'll ask the carer to buy some Nescafe decay and put it in the usual jar and hope he doesn't notice the difference. Thank you for your input.
 

Cazzita

Registered User
May 12, 2018
579
Thank you for your response Cazzita. So sorry to hear your Mum is the same and yes, it does sound like the necessity for a care home is looming. We don't have cameras in my brothers home but the checking system we have in monitors any activity and shows what rooms so I'm sure he's pacing between his kitchen, hallway and front room. Yesterday he complained that his legs were aching. The carer checked his feet and legs but both appeared ok. However, as of the last couple of days he's lost interest in food. Today the carer made him his favourite meal of salmon, mash and veg, followed by rice pudding with fruit but he didn't want any of it and then he complained of stomach ache. The carer gave him a Fybrogel drink on the advice of the doctor who said the stomach ache could be constipation but then my brother apparently also said it hurt to pee so the doctor is also now given him course of antibiotics. The doctor is suggesting a meeting with myself, the care company and social services as he's saying my brothers condition is progressing rapidly. It seems like there's some medical problem with him almost every week and it's getting harder for my brother to explain what he's feeling as his speech is failing him. I suspect his immune system is failing him. Like your Mum, the constant pacing is taking a toll, however my brother doesn't recognise food anymore unless it's put on a plate in front of him, so he's losing weight. It's so awful to see and I'm sure you must feel quite helpless with your Mum being similar. I suspect the meeting will result in his going into some sort of care which I think is best all round but I'm dreading having to arrange it and put him through the stress. Me being so far away doesn't help and despite his condition, he will hate being moved out of his own home. I hope you get your mum sorted sooner and it hope it's not too distressing. Do take care of yourself. The worry that comes with caring for someone can take a toll. Best wishes.
Thank you so much, and the same to you. Mum is going into a lovely local care home at the end of her street in the village, so she will still be local which helps. Surprisingly, she has agreed that she needs to be in a care home now, so that helps! Good luck, you will get there in the end but it's a terrible road for us all to be on. You take care of yourself too.
 

Brother47

Registered User
Jan 18, 2020
58
Thank you so much, and the same to you. Mum is going into a lovely local care home at the end of her street in the village, so she will still be local which helps. Surprisingly, she has agreed that she needs to be in a care home now, so that helps! Good luck, you will get there in the end but it's a terrible road for us all to be on. You take care of yourself too.
Ah, thank you Cazzita x