on duty 24 hours a day!
- Thread starter elaine n
- Start date
Hi Elaine, your post took me back 12 months ago and I was experiencing exactly the same. After posting I took the advice from TP that I had been given and it resulted in John being put into respite for two weeks and placed on quetiapine and then I got a night sitter. It was difficult to begin with, as he still kept wandering, searching for me, and then one night set off the burglar alarm and the sitter just didn't know what to do. However the light at the end of the tunnel was, the quetiapine kicked in after a couple of weeks and also a slow release antibiotic and this gave us both some much needed sleep and much less night time confusion. I no longer need a night sitter at the moment.
Since then, I hate to say, other different levels of confusion and phases have occurred but for me well I learn the hard way; my pride and me thinking I can cope on my own nearly led to another crisis, but then I admitted to myself I needed help and Elaine, help is out there so do make that phone call and do talk to the professionals, they can help. Sleep deprivation is the worst thing ever and leads you to crisis point far sooner than anything else I reckon, but thinking you can go it alone doesn't always work. Don't leave it too late for it to affect your own well being. [I[/I] I'll get off my soap box now ....
I'm sending you the biggest virtual hug and hope that things improve for you very soon.
June x
Since then, I hate to say, other different levels of confusion and phases have occurred but for me well I learn the hard way; my pride and me thinking I can cope on my own nearly led to another crisis, but then I admitted to myself I needed help and Elaine, help is out there so do make that phone call and do talk to the professionals, they can help. Sleep deprivation is the worst thing ever and leads you to crisis point far sooner than anything else I reckon, but thinking you can go it alone doesn't always work. Don't leave it too late for it to affect your own well being. [I[/I] I'll get off my soap box now ....
I'm sending you the biggest virtual hug and hope that things improve for you very soon.
June x
Hi Elaine. Glad you enjoyed your break and got some much needed sleep, also that Gary's children now realise what you're going through. Hopefully they'll help out more but you still need to push the powers that be for more help.
Sermon over
. We're off to Yorkshire this morning for my son's wedding, MIL in respite so looking forward to a couple of days of "freedom"!!
Love & Hugs to you. XXX
Sermon over
. We're off to Yorkshire this morning for my son's wedding, MIL in respite so looking forward to a couple of days of "freedom"!!Love & Hugs to you. XXX
Well.....my care support worker cancelled our appointment today, there was a road closed in the village and she thought she couldn't get here - she could - the sign wasn't clear but never mind, I'll speak to her on Monday
Gary's CPN has managed to speak to his consultant about the sleep issue, he agrees he's at risk at night but unfortunately he can't be prescribed anything because of the risk of further seizures I'm going to have to get waking night sitters in by the looks of things. i was offered one over the weekend but feel strong enough to manage the next few days so we'll review it on Monday. Gary's sister is here til Sunday so I'll be able to get some rest during the day if I need to. A magic wand would be good failing any medication help1
Gary's CPN has managed to speak to his consultant about the sleep issue, he agrees he's at risk at night but unfortunately he can't be prescribed anything because of the risk of further seizures
I'm going to have to get waking night sitters in by the looks of things. i was offered one over the weekend but feel strong enough to manage the next few days so we'll review it on Monday. Gary's sister is here til Sunday so I'll be able to get some rest during the day if I need to. A magic wand would be good failing any medication help1 
I'm not sure if sooty and sweep are still alive I'll google them and if they are I'll put in a special request
Elaine
If all else fails 'turn some water into wine'
I am glad really that you have someone else in the house, it makes such a difference.
If all else fails 'turn some water into wine'
I am glad really that you have someone else in the house, it makes such a difference.
Hi Helen!
My water has indeedy turned to wine - has yours?
Trying a new tack tonight - gary's sleeping pills are designed to get him off to sleep but don't last all night so tonight I didn't give them to him before he went to bed cos he always, well, nearly always gets off to sleep easily. This time I've given them to him after he woke up and came downstairs and when he said he was tired and wanted to go back up to bed so maybe they'll work for a bit longer, if you see what I mean!
Hope you and Tom are ok xxxxxe
My water has indeedy turned to wine - has yours?
Trying a new tack tonight - gary's sleeping pills are designed to get him off to sleep but don't last all night so tonight I didn't give them to him before he went to bed cos he always, well, nearly always gets off to sleep easily. This time I've given them to him after he woke up and came downstairs and when he said he was tired and wanted to go back up to bed so maybe they'll work for a bit longer, if you see what I mean!
Hope you and Tom are ok xxxxxe
Night night I should have gone to bed ages ago if I was sensible! I like to pretend i can have a normal evening like other people though! I'll regret it in the morning if it's a really bad night
Hi Elaine, glad you are home safe and sound, and that the family are going to help you more. How was last night? x
Hi Debora
Last night was manageable. Gary didn't wake again until 4 am but then we were up until 5 - although he was wandering and wanting to go outside he wasn't too agitated. He went straight back to sleep, I lay awake for ages and he was up another two times but I did doze on and off so I don't feel too bad this morning
Last night was manageable. Gary didn't wake again until 4 am but then we were up until 5 - although he was wandering and wanting to go outside he wasn't too agitated. He went straight back to sleep, I lay awake for ages and he was up another two times but I did doze on and off so I don't feel too bad this morning
Hi Elaine, so pleased that the retreat was beneficial and pleased too that now there is more understanding in the family!
You are rested and refreshed now, but remember to get all the help you can for the future so that things don't become unbearable again. You deserve the best! Look after yourself, xxxxxxxxxx
What else did you do on the retreat besides the talking and crying? Oh and where did you stay and who was there? Sorry, being too nosey, I know! Just ignore me
You are rested and refreshed now, but remember to get all the help you can for the future so that things don't become unbearable again. You deserve the best! Look after yourself, xxxxxxxxxx
What else did you do on the retreat besides the talking and crying? Oh and where did you stay and who was there? Sorry, being too nosey, I know!
Just ignore me
I should image you did sleeping and a spot of imbibing too ! Spa water of course!
glad you had a better night
glad you had a better night
...so it was YOU! And there was me thinking that my wet shoulders had something to do with a torrential downpour!!!The English always blame the weather...
I'll be thinking of you on Monday. Before you can even start to think about what you WANT, you have to receive some of what you NEED.
Lots of love and a big squeeezy hug - Kathy
I'll be thinking of you on Monday. Before you can even start to think about what you WANT, you have to receive some of what you NEED.
Lots of love and a big squeeezy hug - Kathy
Didn't hear from my support worker today but it doesn't really matter because gary's new cpn is very good and on the ball - if she says she'll do something she does thank god! I don't have the energy to keep chasing people up!
I've noticed a huge change in Gary since i went away, he's much less able now. I think the familly were so intent on caring for him that they've disabled him. I left copious notes on what he could/should do for himself but now he can do almost nothing. He seems so switched off....if I leave him standing in the kitchen staring at nothing I swear I could go back an hour later and he'd be in the same position. I'm now trying to enable him again but it's a slow process.
He's become fixated on the car so I seem to be driving him around for hours when he's sundowning because that's all that will calm him, at least it works.
His moods are extreme, he often laughs uncontrollably at nothing or he's sobbing for no apparent reason, between which he's completely confused or just switched off. We're still having broken nights, 4 times last night 5 the night before but no real night time terrors thank heavens, I think this is definitely a downturn - that's 3 of us who've been away - is this a curse?
I've noticed a huge change in Gary since i went away, he's much less able now. I think the familly were so intent on caring for him that they've disabled him. I left copious notes on what he could/should do for himself but now he can do almost nothing. He seems so switched off....if I leave him standing in the kitchen staring at nothing I swear I could go back an hour later and he'd be in the same position. I'm now trying to enable him again but it's a slow process.
He's become fixated on the car so I seem to be driving him around for hours when he's sundowning because that's all that will calm him, at least it works.
His moods are extreme, he often laughs uncontrollably at nothing or he's sobbing for no apparent reason, between which he's completely confused or just switched off. We're still having broken nights, 4 times last night 5 the night before but no real night time terrors thank heavens, I think this is definitely a downturn - that's 3 of us who've been away - is this a curse?
