Begging to GO HOME.
- Thread starter Rageddy Anne
- Start date
We had a few nights with only one awakening, and I was getting optimistic, still putting off adding the new tablets, Pregabalin, to the Aricept and Memantine.
On Friday hubs had a flu jab at the GP's instigation, and later went off with his usual reluctance in the car with our wonderful helper, and returned in quite a good mood, but the minute the friend left he descended into the depths of despair, which continued until bedtime, and a wakeful night. The theme was " I don't know what the hell is going on" and " please explain it to me properly". I'd tell him each time that he and I were safely at home, with nothing to worry about, but the questions were relentless. I took to counting the seconds between them, and the longest interval was fifty seconds, the shortest was three.
On Saturday we had a slow start, with our usual shopping trip to a supermarket where he kept ramming me with the trolley, always my fault, obstructing people in the aisles and getting belligerent if they said " excuse me please", and everything I said and did annoyed him. We'd missed breakfast, except his cream cracker with his meds, as we usually have coffee and a bacon roll at the supermarket, but I couldn't risk his behaviour in the cafe there, so we came home. He grabbed a pack of hot cross buns....( too much sugar?) and then behaved badly for the rest of the day. Nothing was right for him, he hated everything on TV, and he hated his dinner, didn't want to go to bed until we'd " thrashed this out...our future together and that of all those people who live here... We must monitor everything and start organising a new start".
Eventually he very reluctantly got into bed determined that he would NOT feel better in the morning and that he would be returning to the subject.
After plucking at my nightdress or grabbing my hand several times in the night, he woke me urgently at about 4am, worried about "all the water that's here...I don't know what to do about it." At first I thought he meant flood waters that he'd seen on TV, but it wasn't, it was that he needed the loo and didn't know what he should do about it! He was puzzled when I showed him the toilet, asking if that was really what that thing was for. But he managed, and is back in bed, sleeping.
Goodness knows what today will be like. He gets cabin fever if we don't go out, but I'm probably too tired to drive far...and we're not expecting any visitors today for him to play host with.
I saw Melatonin on Ann Mac's So Bizarre thread, and am wondering if that would help if it's obtainable. Meanwhile, I'll try to keep going with only Aricept and Memantine.
On Friday hubs had a flu jab at the GP's instigation, and later went off with his usual reluctance in the car with our wonderful helper, and returned in quite a good mood, but the minute the friend left he descended into the depths of despair, which continued until bedtime, and a wakeful night. The theme was " I don't know what the hell is going on" and " please explain it to me properly". I'd tell him each time that he and I were safely at home, with nothing to worry about, but the questions were relentless. I took to counting the seconds between them, and the longest interval was fifty seconds, the shortest was three.
On Saturday we had a slow start, with our usual shopping trip to a supermarket where he kept ramming me with the trolley, always my fault, obstructing people in the aisles and getting belligerent if they said " excuse me please", and everything I said and did annoyed him. We'd missed breakfast, except his cream cracker with his meds, as we usually have coffee and a bacon roll at the supermarket, but I couldn't risk his behaviour in the cafe there, so we came home. He grabbed a pack of hot cross buns....( too much sugar?) and then behaved badly for the rest of the day. Nothing was right for him, he hated everything on TV, and he hated his dinner, didn't want to go to bed until we'd " thrashed this out...our future together and that of all those people who live here... We must monitor everything and start organising a new start".
Eventually he very reluctantly got into bed determined that he would NOT feel better in the morning and that he would be returning to the subject.
After plucking at my nightdress or grabbing my hand several times in the night, he woke me urgently at about 4am, worried about "all the water that's here...I don't know what to do about it." At first I thought he meant flood waters that he'd seen on TV, but it wasn't, it was that he needed the loo and didn't know what he should do about it! He was puzzled when I showed him the toilet, asking if that was really what that thing was for. But he managed, and is back in bed, sleeping.
Goodness knows what today will be like. He gets cabin fever if we don't go out, but I'm probably too tired to drive far...and we're not expecting any visitors today for him to play host with.
I saw Melatonin on Ann Mac's So Bizarre thread, and am wondering if that would help if it's obtainable. Meanwhile, I'll try to keep going with only Aricept and Memantine.
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Poor you Anne - its sounds like you have also had one of those awful, relentless days that are so hard to cope with - I'm beginning to wonder if the 'waning' moon doesn't have as bad an impact as you and I suspect the full moon has 
I'm pinning a lot of hope on the melatonin helping - if we get sleep, and if the fixations become less upsetting, I feel that would be a massive help. The continual worrying and fretting is so hard to deal with, especially given the reluctance to accept any reassurance at all. It will be at least a month, and possibly two before it can be prescribed for Mil here in Wales - so if you are able to try it first, do let me know how you get on, hun.
Got fingers crossed for a better day for you and your OH xxxx
I'm pinning a lot of hope on the melatonin helping - if we get sleep, and if the fixations become less upsetting, I feel that would be a massive help. The continual worrying and fretting is so hard to deal with, especially given the reluctance to accept any reassurance at all. It will be at least a month, and possibly two before it can be prescribed for Mil here in Wales - so if you are able to try it first, do let me know how you get on, hun.
Got fingers crossed for a better day for you and your OH xxxx
Morning Anne. I know how tiring it gets repeating everything, five times yesterday going through what I bought in Waitrose. The day you had sounds ten times worse, no wonder you are too tired for anything more than a bit of gardening. Good luck with the melatonin if you can try it and best wishes for a better day. Rob
Oh Anne , it's like reading my mums days at the moment.
Constantly shouting at the tv, losing to difference between reality and tv, the ranting, repeated questions, constantly needs to go out to meeting at work , multiple layers of clothing, sleeping in them if she doesn't get him into pjs early enough (depending on his mood) . This is currently alternate days. But even then it's so draining.
We are trying to see what we can change regarding meds, he was offered another at his last assessment in January but side effect being stroke which concerned mum as had a stroke originally in 05. Trying to find some respite too but proving impossible to find round here!
Thinking of you Anne and sending you some strength over xx
Constantly shouting at the tv, losing to difference between reality and tv, the ranting, repeated questions, constantly needs to go out to meeting at work , multiple layers of clothing, sleeping in them if she doesn't get him into pjs early enough (depending on his mood) . This is currently alternate days. But even then it's so draining.
We are trying to see what we can change regarding meds, he was offered another at his last assessment in January but side effect being stroke which concerned mum as had a stroke originally in 05. Trying to find some respite too but proving impossible to find round here!
Thinking of you Anne and sending you some strength over xx
Tried having a look into the newly de cluttered shed this morning, but working together out there obviously wasn't going to be easy, so we drove to that nice garden centre we know.Back home and the blues started to creep in, so he had one Paracetamol and I found a book of WH Davies poetry, and reading aloud did the trick." What is this life if full of care, we have no time to stand and stare?" After supper, which he didn't like, ( he's always loved his food) we listened to some very early Frank Sinatra, which helped a bit, but then despair set in again, big time, and went on and on, no matter what. He had some milk and two Paracetamol, but it just got worse, so I decided to try the PREGABALIN. Got him reluctantly to bed but it was ages before he fell asleep, and he was wide awake again after an hour, raging because all his belongings had gone, everything he owned, stolen! What the hell had happened? No, of course it wasn't a dream! Where was everything? The wallet went into his pyjama pocket, and finding his watch was a surprise because it had been stolen, so how did it get back onto the dressing table? We were in the midst of a disaster, and who had taken his stuff?( meaningful glare at me).
It took a lot of coercion and a couple of glasses of water but he's asleep again,and I've just found an email from our lovely helper, who needs a break, and would like to miss all but four hours the week after next. Of course, he's quite wonderful, and I don't mind at all, but oh, however will I get through that week? I keep reading about some statutory right to respite, but it doesn't seem to be available here. I was told by the Local Authority that if we were self funding there was no respite.
Well, at least he's asleep now.
It took a lot of coercion and a couple of glasses of water but he's asleep again,and I've just found an email from our lovely helper, who needs a break, and would like to miss all but four hours the week after next. Of course, he's quite wonderful, and I don't mind at all, but oh, however will I get through that week? I keep reading about some statutory right to respite, but it doesn't seem to be available here. I was told by the Local Authority that if we were self funding there was no respite.
Well, at least he's asleep now.
Wondering what I did wrong.
My husband's frame of mind is becoming excessively worried and frightened, every afternoon, through to bed time and beyond, he's so afraid that he won't be able to cope with some job he imagines he must do. No amount of reassuring will calm him, he says I don't understand the problem.
Last evening he suddenly decided I was "opposing" him and he couldn't trust me not to do something drastic that would cause a major problem for us both. He got so angry and frustrated that I was actually frightened.
He refused to get undressed and into his pyjamas, but lay down on the bed in his clothes, rigid with tension. I think he must have fallen asleep briefly because eventually he seemed to have forgotten that he couldn't trust me, and wanted to go searching the house for those people in charge. I was able gradually to persuade him the people in charge had gone home and had told him to get a good nights sleep. Then he asked who I was, and what authority did I have? I said I was Anne, his wife, and he was shocked and amazed, and I don't think he really believed me, but eventually he became sleepy. I lay awake for ages, trying to work out what I might have done differently.
It had been his birthday on Friday, and we'd had a pub lunch with three of the people he most trusts. Afterwards at home our lovely former daughter in law came over with our teenage granddaughters, and we had cake, and candles for him to blow out, and I wondered if it had all been too much. But yesterday we only went to the supermarket, with a very brief halt on the way home to look at the view, but the icy cold wind prevented the short walk we'd planned. Back home, a quiet lunch with his brother and wife shouldn't have been too taxing, but by the time they left, mid afternoon, he was Sundowning increasingly, culminating in the drama that has me lying awake while he sleeps....
My husband's frame of mind is becoming excessively worried and frightened, every afternoon, through to bed time and beyond, he's so afraid that he won't be able to cope with some job he imagines he must do. No amount of reassuring will calm him, he says I don't understand the problem.
Last evening he suddenly decided I was "opposing" him and he couldn't trust me not to do something drastic that would cause a major problem for us both. He got so angry and frustrated that I was actually frightened.
He refused to get undressed and into his pyjamas, but lay down on the bed in his clothes, rigid with tension. I think he must have fallen asleep briefly because eventually he seemed to have forgotten that he couldn't trust me, and wanted to go searching the house for those people in charge. I was able gradually to persuade him the people in charge had gone home and had told him to get a good nights sleep. Then he asked who I was, and what authority did I have? I said I was Anne, his wife, and he was shocked and amazed, and I don't think he really believed me, but eventually he became sleepy. I lay awake for ages, trying to work out what I might have done differently.
It had been his birthday on Friday, and we'd had a pub lunch with three of the people he most trusts. Afterwards at home our lovely former daughter in law came over with our teenage granddaughters, and we had cake, and candles for him to blow out, and I wondered if it had all been too much. But yesterday we only went to the supermarket, with a very brief halt on the way home to look at the view, but the icy cold wind prevented the short walk we'd planned. Back home, a quiet lunch with his brother and wife shouldn't have been too taxing, but by the time they left, mid afternoon, he was Sundowning increasingly, culminating in the drama that has me lying awake while he sleeps....
Oh Ann, you have so much to cope with . Sundowning is so hard . My John has a bit of that too but not to that extreme. So hoping you will find some respite soon . Big hugs xxxx
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Thanks so much Kjn, i hope you and your mum find some answers too.
I very recently had a chance to look over a lovely purpose built Care home not far away, and everything looked perfect, but it seemed evident that the one to one attention my husband currently needs would be unlikely to be available after an initial period.
They're so coy about discussing finances, but I got a basic price, which we could manage occasionally for respite, but only for a few weeks if it became permanent. Then he would have to be moved somewhere else, probably much less like our home, and I wouldn't have any say in what would be decided for him, as he could never be persuaded to have a Health and Welfare Power of Attorney.
He lasted an hour and a half at a nice Care Home when we tried for a weeks respite before Christmas, so I'm beginning to think he's unplaceable.
And then I read I terrible story, from The Mail last year, about a man in his eighties who's wife, with Dementia, has been sent home from the Respite he'd arranged while he went.into hospital for an operation. He tried phoning round but failed to find anywhere else to take her, and so he killed her, and after being charged with her murder, then took his own life.
What grim reading.
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Hello Chick, what are we doing on here when we need our sleep?...
I'll pop back to Positives with something more cheerful...
Its so heartbreaking, reading about what you are your OH are going through, Anne - I wish I could come up with something constructive, that would help, but the only thing I've found that occasionally works to draw in the support needed, is to scream and shout. And when you are dealing with what you are dealing with, who on earth has the energy?
Sending you much love and a big {{{{{{{{{{hug}}}}}}}}} xxxxxxx
Sending you much love and a big {{{{{{{{{{hug}}}}}}}}} xxxxxxx
Dear Ann - I have so much sympathy for you. It is so much like what I went through with my husband. You say you were frightened - was that the first time you felt like that? I was very frightened of my husband during his angry aggressive episodes - mostly all due to his sundowning. He could never remember being that angry and aggressive afterwards, which is what frightened me, as when he was in that state, he didnt know who I was, and I felt he was capable of doing me harm. He is a lovely sweet, kind polite man when he is "normal" which made it all the more frightening, and he is very strong. I agree with the other advice here - scream and shout for help until you get it - it helps to have a good sympathetic social worker. Keep a diary of his behaviour as it will help others realise the extent of his delusions. It may mean that your husband is sectioned, but it would mean that he would be properly assessed, and the right medication found. If you are not getting any sleep, and having to cope with such behaviour all the while, your own health will suffer.
Sending you much love xxx
It does help such a lot just to have a hug from you who understand....hugs back.
Because I can so rarely have phone calls, due to husband closely monitoring my every action, I had an email this morning, with some suggestions of Care Homes that might be able to help. They're all known round here as not having a good record with the Care Quality Commission.
Need to wait in this morning for someone to come and mend something, so can't take husband out, and he's sighing and planning how the only answer is to end it all. We just decided it wouldn't be nice to jump into a river as it would be so cold....you have to make a joke out of it, I find, as that's the only thing that works here!
Because I can so rarely have phone calls, due to husband closely monitoring my every action, I had an email this morning, with some suggestions of Care Homes that might be able to help. They're all known round here as not having a good record with the Care Quality Commission.
Need to wait in this morning for someone to come and mend something, so can't take husband out, and he's sighing and planning how the only answer is to end it all. We just decided it wouldn't be nice to jump into a river as it would be so cold....you have to make a joke out of it, I find, as that's the only thing that works here!
