Big deterioration in the last few days!
- Thread starter LadyA
- Start date
Sounds just like me! The love of my life had two chest infections, one after the other at the beginning of the year, again treated with antibiotics. After x-Ray was told there could be small amount of asbestos in lungs! Crickey, if they're going to throw it at you! Anyway, contacted council/occupational therapist who got us a rise and fall chair, big help! Also try a rollator, bit like a Zimmer frame but with wheels, brakes and a seat, so may help with being a bit more steady when out walking and can sit down when tired. Tried this, but my love was unable to get to grips with holding the handles and kept trying to sit down, not always on the seat! So that has gone, ticked off my list, tried that, doesn't work! So now looking to wheelchair with motor to save me pushing, attendant controlled is the term, so you get to control how it works. Also getting a lower shower base put in with seat, as difficulties in going up steps, impossible to come down steps! So, don't give up, there are no problems, only solutions! And yes, he does spend most of the day asleep, eats well, reaches out for things that aren't there and has lost power of speech - but he does have a winning smile (always has) and a great laugh!
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The night was relatively calm. He was up for a couple of hours from around 2 a.m. I managed to persuade him to the loo, and got his pad changed then. Didn't get him cleaned up though - but hopefully, he won't develop sores over a weekend, and frankly, if he does, then it ain't my fault - I can't get near him to clean him.
He slid down off his pillows though, and is back to choking a bit on phlegm. As he's over half-way through the second antibiotic, he really should be better than that by now. I think the GP's options are running out - liquid antibiotics are limited I think.
He's been having hallucinations for - oh, eight years or so anyway. Well before he was diagnosed. Just the odd little one, that he could easily laugh off, or explain away. But then they increased in both intensity and frequency, as did his paranoia, with the dementia and in 2011 he had a complete psychotic breakdown. So, since then, he's on as much Risperidone as they can give someone his age, and that does keep things under control, apart from occasional breakthroughs. Maybe at the moment, he's a bit in "the twilight zone" a lot - neither asleep nor awake, and that causes vivid dreams like seeing things?
All quiet for the moment as he hasn't got up yet. I'm reluctant to go wake him, to be honest!
He slid down off his pillows though, and is back to choking a bit on phlegm. As he's over half-way through the second antibiotic, he really should be better than that by now. I think the GP's options are running out - liquid antibiotics are limited I think.
He's been having hallucinations for - oh, eight years or so anyway. Well before he was diagnosed. Just the odd little one, that he could easily laugh off, or explain away. But then they increased in both intensity and frequency, as did his paranoia, with the dementia and in 2011 he had a complete psychotic breakdown. So, since then, he's on as much Risperidone as they can give someone his age, and that does keep things under control, apart from occasional breakthroughs. Maybe at the moment, he's a bit in "the twilight zone" a lot - neither asleep nor awake, and that causes vivid dreams like seeing things?
All quiet for the moment as he hasn't got up yet. I'm reluctant to go wake him, to be honest!
None of those would solve the problem of him attacking me, though! And he is very big and very heavy. We are just waiting on funding to come through for a nursing home place (he behaves like a perfect gentleman, I'm told, in the nursing home, when he's been in for respite!) And we don't have a shower, just a bath. I don't have the money to put a shower in. I got a bathlift for him, and a care assistant comes to bath him (a male care assistant. He won't have a woman). I don't think he would use a wheelchair - he paces around. It's a symptom. Best I can do is try and make sure he brings his walking stick. Unless he's in an aggressive mood, in which case the best I can do is hide his stick!
Oh, LadyA. Doesn't it always happen on a weekend I don't know how you are still upright. Just wish I knew what to say, but police and outside hours have been in the picture for me before. That's how my hubby was able to get into hospital when he had his TIA, so yes, call them if needs be.
When Monday comes, is there anyone other than the carer who you can report this to, to maybe get things moving in the right direction for you?
I don't know how you are still upright. Just wish I knew what to say, but police and outside hours have been in the picture for me before. That's how my hubby was able to get into hospital when he had his TIA, so yes, call them if needs be.When Monday comes, is there anyone other than the carer who you can report this to, to maybe get things moving in the right direction for you?
Lady A, I hate weekends for you!! I guess all I can hope for you today, is that a) William's antibiotics work to help his chest and b) that there are no major confrontations....stay at arms length !
I hope the rally isn't too noisy.....
Make sure tomorrow that there is no chance that what you are telling the consultant can be misunderstood....lay it well and truly on the line.!!!!: Tell him about the violence.D
Just another thought...how are you getting to see the consultant, will there be someone else in the car with you?Please try to get somone to accompany you.
I guess all I can hope for you today, is that a) William's antibiotics work to help his chest and b) that there are no major confrontations....stay at arms length ! I hope the rally isn't too noisy.....
Make sure tomorrow that there is no chance that what you are telling the consultant can be misunderstood....lay it well and truly on the line.!!!!: Tell him about the violence.D
Just another thought...how are you getting to see the consultant, will there be someone else in the car with you?Please try to get somone to accompany you.
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Poor you Lady A - I've just been through a similar situation with my husband even though he is in a NH but he has responded somewhat to the ABs and we have had a couple of peaceful days. Those ABs have a dreadful effect on their level of confusion and hallucination and coupled with the fact that they must feel dreadful too it is no wonder they lash out. But you have to be safe - so first thing tomorrow get cracking or crack up and insist on some help. I am thinking of you both and feeling your pain. Are you in the same tunnel as me - with seemingly no light at the end?
All the best.
All the best.
William has never reacted like this to antibiotics before. And he's had lots of them in recent years. This past Winter wasn't too bad, but before that, at one stage, he had nine infections in the space of about six months!
Glad last night wasn't too bad, hope the rest of today is as good as it can be.
When Mam was (supposedly) recovering from her chest infection, on abs and steroids with the react nurses coming out to administer the nebuliser, she had her only incident of terrifying thoughts.
She was adamant she had been abducted by some men, put into the boot of their car, she kept pointing them out of the congregation on Songs of Praise.
It was the saddest experience for me, not for Mam, she was furious because I had let it happen...
I was absolutely dumbfounded at this manifestation of dementia, it broke my heart to see her so totally taken over by her illness.
This was the Sunday, by the following Saturday she was back in hospital, on the Cardiac Care Unit with heart block and entrenched pneumonia, even after a week of care from NHS nurses.
I 100% believe it was the effect of the infection that caused such prolonged, abstract delusions.
I think the fact that William is still having problems with phlegm means the chest infection is not under control, I remember Sylvia telling me that there are drugs to thin the excretions and make a person more comfortable.
I think you need to get the GP out and William needs to go into hospital and from there he needs to be taken to a nursing home.
I have everything crossed that this will happen.
One can only hope. x
When Mam was (supposedly) recovering from her chest infection, on abs and steroids with the react nurses coming out to administer the nebuliser, she had her only incident of terrifying thoughts.
She was adamant she had been abducted by some men, put into the boot of their car, she kept pointing them out of the congregation on Songs of Praise.
It was the saddest experience for me, not for Mam, she was furious because I had let it happen...
I was absolutely dumbfounded at this manifestation of dementia, it broke my heart to see her so totally taken over by her illness.
This was the Sunday, by the following Saturday she was back in hospital, on the Cardiac Care Unit with heart block and entrenched pneumonia, even after a week of care from NHS nurses.
I 100% believe it was the effect of the infection that caused such prolonged, abstract delusions.
I think the fact that William is still having problems with phlegm means the chest infection is not under control, I remember Sylvia telling me that there are drugs to thin the excretions and make a person more comfortable.
I think you need to get the GP out and William needs to go into hospital and from there he needs to be taken to a nursing home.
I have everything crossed that this will happen.
One can only hope. x
Oddly, he has only coughed a couple of times today! But I only managed to get him on the nebuliser once today - he refused to countenance it at all after that. I did get most of his other meds into him though. He didn't get his Ebixa this morning, as he didn't finish the drink it was in - he has actually had hardly anything to drink all day. He has in fact slept almost all day, and I finally put him to bed at 8.30. He grumbled and objected to being undressed and put in his pj's, but wasn't aggressive. I think either he was too tired to be or it was the trazadone that he had tonight, and had refused last night!!
Tomorrow morning, the Care Assistant will be in in the morning to get him up and dressed - and then hopefully, I will be able to get him to the hospital to the Psych of Old Age Clinic. And I will leave a message for the GP too, I think, depending on what happens at the Clinic. Please God, maybe the funding will come through this week?? This is only the third week, and they said "approximately eight" - but when the PHN phoned them they said no, I should have it in about 4 weeks - but maybe, maybe?? Fingers crossed! Anyway, I've no doubt he will be up half the night again - sigh!
Tomorrow morning, the Care Assistant will be in in the morning to get him up and dressed - and then hopefully, I will be able to get him to the hospital to the Psych of Old Age Clinic. And I will leave a message for the GP too, I think, depending on what happens at the Clinic. Please God, maybe the funding will come through this week?? This is only the third week, and they said "approximately eight" - but when the PHN phoned them they said no, I should have it in about 4 weeks - but maybe, maybe?? Fingers crossed!
Anyway, I've no doubt he will be up half the night again - sigh!
My fingers are tightly crossed for you, LadyA, regarding everything medical, and, of course, William's funding. Will this be in full for his place, or will you have to contribute?
John's case is going in front of The Panel on Wednesday. I think he will be contributing an awful lot himself, but when we have the second Financial Assessment, I am hoping to convince "them" that I shall be living on gruel if they take so much.
John's case is going in front of The Panel on Wednesday. I think he will be contributing an awful lot himself, but when we have the second Financial Assessment, I am hoping to convince "them" that I shall be living on gruel if they take so much.
Sorry to hear how difficult things still are for you LadyA.
I hope you are able to obtain some help today, it does sound as though things have reached crisis point.
I hope you are able to obtain some help today, it does sound as though things have reached crisis point.
My fingers are tightly crossed for you, LadyA, regarding everything medical, and, of course, William's funding. Will this be in full for his place, or will you have to contribute?
John's case is going in front of The Panel on Wednesday. I think he will be contributing an awful lot himself, but when we have the second Financial Assessment, I am hoping to convince "them" that I shall be living on gruel if they take so much.
I've already been told how much I have to contribute Scarlett. 242 euro, which leaves me with 182 per week.
Yesterday he was very quiet and slept most of the day. He would just wake for half an hour or so at a time. Same during the night. Quite alert and cheerful (or trying to be) when awake, but before long, I would look and see his eyes had closed again and he was asleep. Inevitably, I didn't sleep well, even with the opportunity!
Oh LadyA, I cannot believe what I am reading and I am so sorry at what has happened in the days I have been away from TP. You have my loving sympathy - for all that helps. I do hope you will get the hearing you deserve this morning and that they finally see William must have long term care. You cannot be allowed to be in such jeopardy. Illness or no, you are in fear of your life and even they must see that if the heavy lifting doesn't get you, the stick over the head may do! I am so angry that this is the depth your wonderful care is sinking to and all because you cannot get the support you and William so badly need and deserve. My heart goes out to you. Love Shelagh X
XWe're home from the appointment. Got sympathy, and told that his experience is that once we've got to the stage we're at, just waiting for funding to be released, then it doesn't usually take long. We won't be going back to the clinic again, he said at this stage there isn't much point in bringing Wm in. He can be monitored by the CPN.
Still no letter about funding. Wm did get an appointment with the Medical/Age Related Clinic for two weeks time though. I think that's because they had to sign off on him for the fast-tracking of his application, and they now need to actually see him!
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Still no letter about funding. Wm did get an appointment with the Medical/Age Related Clinic for two weeks time though. I think that's because they had to sign off on him for the fast-tracking of his application, and they now need to actually see him!
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Think of you Lady A. It's a hard time and you have my sympathy.
Just sorry it can't be more. xxx
Just sorry it can't be more. xxx
LadyA I'm going to sound really thick so I apologise but what does "waiting for funding to be released" mean?
Mum's social worker, after their assessments and then deciding it was time for a care home, just told me to look at suitable homes. When things hit crisis point I rang a home (who took SS residents and self funding) and asked if they had a bed, they did and, after the care home assessment, mum was admitted the following day. Apart from the decision going to SS panel (which happened before the crisis) there was no waiting. Perhaps things work differently where you are? It sounds like you are at the crisis point (or close enough) so I don't understand the wait?
Mum's social worker, after their assessments and then deciding it was time for a care home, just told me to look at suitable homes. When things hit crisis point I rang a home (who took SS residents and self funding) and asked if they had a bed, they did and, after the care home assessment, mum was admitted the following day. Apart from the decision going to SS panel (which happened before the crisis) there was no waiting. Perhaps things work differently where you are? It sounds like you are at the crisis point (or close enough) so I don't understand the wait?
