Morning everyone,
It's not a bad idea to take the decs down a bit at a time, Slugsta - but I'm one of those people that once I start, I like to finish, lol. Dau and I tackled the decs on Friday - what a job! Took us 4 and a half hours to get 'em down, pack 'em away and put everything else back in place! I am determined to get a new tree for next year - ours looks great when up, but its covered in fake snow 'bits', lots of which transfer themselves to whoever is handling it, and then spread throughout the house - takes forever to hoover up every bit of it! By the time I'd done that, faced the supermarket, and did other bits and bobs, I was aching like fury
We've had really cold weather here, and mostly windy, grey and rainy to boot. Not nice at all. The next few days are forecast to be very cold, with warnings of black ice - but no snow (apparently) so not complaining.
I don't think son was as bad as the daughters, Spamar - mostly, he just tended to speak in grunts and spend a lot of time in his room! Youngest was what we would call 'very pass-remarkable' over Christmas, which cause a few rows - commenting (not to politely and sometimes very personally) about both of her siblings, and a couple of times about me or her Dad. Flew off the handle for no real reason several times, somehow finding something to offend her in the most innocent of remarks and as I said, her big sister, who she is really close too, even lost it with her a few times.
I went to see Mil yesterday, first time I've been solo to see her for quite a while, but OH has a run of 6 shifts and I wanted to check on her, after her not seeming too well to me on the last visit. She didn't have a clue who I was, calling me 'Christine' several times, though she still seemed pleased to see me, and spent a lot of the visit gripping one or both of my hands tightly. Amazingly, she had her bottom set of teeth in - staff had found her wearing them when they went to get her up - where they have been all this time is anyones guess. Another staff had found a set of upper dentures, in a male residents room and wondered if they were Mils - they seemed to match, but if you remember, I'd taken Mil to the dentist where both uppers and lowers had been altered and filled to deal with her receeding gums - and there was no sign of any filler on this upper set, so they can't be hers. Not that she wanted to put them in and try them anyway - she half heartedly attempted a couple of times in response to encouragement, then flat out refused.
There were a few things worried me during the visit. Her breathing still doesn't sound right - it wasn't constant, but frequent 'raspy' sounds, and quite a few times she did this odd thing of opening and closing her mouth, almost like a fish does, as though taking gulps of air. She does have COPD, as well as asthma, and I am wondering if after years of the COPD being very well controlled, if its now starting to have more of an impact?
At one point, there was an amazing flash of Mil's old humour, which blew me away! For no apparent reason, she crossed herself several time and when I asked what she was doing, she looked me straight in the face, sort of cackled with glee and as she crossed herself again, said "I'm doing 'spectacles, testicles, wallet and watch'" - she heard this in a film, years and years ago, and found it extremely funny at the time. I haven't thought of it in years myself - but she managed to pull it out from somewhere in her memory, leaving both me and near by staff laughing our socks off.
The palilalia that Slugsta identified for me, was very evident, as well - even more so than I have heard before. And sadly, a lot of instances of sudden and awful agitation. I lost count of how many times she suddenly clenched her fists, screwed her eyes closed and went almost rigid, and made this horrible, loud but gutteral 'Oohhhhhhhhhhh' noise, sometimes two or three times, usually followed by an agitated repetiton of a random sentence. 'It doesn't matter if I don't know her, no it doesn't matter if I don't know her, it doesn't matter, it doesn't matter if I don't know her'. I don't know if she was referring to me, or someone else. A few minutes later, another similar incident, but this time she was saying 'The eggs are in the kitchen, its alright, they are in the kitchen, the eggs are in the kitchen. I put the eggs in the kitchen'. And as I said, this happened quite a few times, and each time she added a repeated comment it was different and not connected to anything that had been said previously, as far as I could tell. Really, really odd. She also complained maybe 4 or 5 times that her back was sore - before I left, I asked if she could have some pain meds, just in case, and I also mentioned my concerns about her breathing.
One thing happened that has actually really annoyed me. One of the nurses came over to give MIl meds whilst I was there, and I found out that the GP has prescribed lorazepam along with the quetiapine. This hasn't been mentioned to us before. Mil was taken off lorazepam, about 2 years ago, after it was clear that it was actually making her agitation worse. A few months before she went in hospital, it was tried again - with the same result, and she was again taken off it. While she was in hospital, despite both OH and I warning them that it didn't agree with Mil, that it actually increased her agitation, they tried it again - and stopped it pretty damn quickly, when they realised that OH and I were right. Now all this should be in her notes, and yet once again she has been given this medication that - for whatever reason - not only doesn't help, but in fact makes her worse. I know that it's been presribed along with the quetiapine because the outbursts were worsening anyway, but what are the chances that its once again adding to the issue, rather than helping it? Apparently, it is known that in some instances it can have this effect on patients, so it's not a case of it being completely unheard of, it's not as though it's just Mil who has this response to the drug. I was so cross - I asked the nurse if the GP actually bothered reading Mil's notes, before writing a prescription? Or if anyone else did? I've made it clear that I want her taken off the damn stuff, asap. The nurse had said that they had also thought her breathing was 'off' and were planning on calling out the GP anyway, and she would speak to him then - lets hope he deals with the lorazepam at the same time. I'll be at the CHC review on Thursday, and I will be following it up then. Maybe the quetiapine - and the dosage of that has been increased, btw - will have a chance of working, if the lorazepam is removed.
I stayed with Mil for about an hour. Each time I see her at the moment, there seems to be something new, more deterioration, more difficulty for her with agitation and more 'distance' in terms of her having a clue as to who we are. In addition, her speech is getting more erratic, her mobility worse, issues with her being able to feed herself are increasing and some evidence of problems with swallowing are now being noted. And all of this is combining and clearly adding to the upset, frustration and unhappiness for her. Her life is so hard for her - and getting harder. So sad and so cruel. I am half hoping that the COPD is responsible for the issues with her breathing, rather than an infection, because if it is maybe that means the end is in sight for the poor thing. As long as she can be kept pain free and comfortable, it has to be kinder than this constant awful deterioration that is clearly giving her so much misery. I have hoped that her deteriorating might bring her some respite from the upset, but that's not turning out to be the case, and its just heartbreaking.
Sorry - seeing all this with Mil is playing on my mind an awful lot. I feel so useless because I know thre is nothing I can do.
Amy, JM, 2Jays, Amethyst and everyone else - hope you are all OK. Sending love to all xxxx
It's not a bad idea to take the decs down a bit at a time, Slugsta - but I'm one of those people that once I start, I like to finish, lol. Dau and I tackled the decs on Friday - what a job! Took us 4 and a half hours to get 'em down, pack 'em away and put everything else back in place! I am determined to get a new tree for next year - ours looks great when up, but its covered in fake snow 'bits', lots of which transfer themselves to whoever is handling it, and then spread throughout the house - takes forever to hoover up every bit of it! By the time I'd done that, faced the supermarket, and did other bits and bobs, I was aching like fury
We've had really cold weather here, and mostly windy, grey and rainy to boot. Not nice at all. The next few days are forecast to be very cold, with warnings of black ice - but no snow (apparently) so not complaining.
I don't think son was as bad as the daughters, Spamar - mostly, he just tended to speak in grunts and spend a lot of time in his room! Youngest was what we would call 'very pass-remarkable' over Christmas, which cause a few rows - commenting (not to politely and sometimes very personally) about both of her siblings, and a couple of times about me or her Dad. Flew off the handle for no real reason several times, somehow finding something to offend her in the most innocent of remarks and as I said, her big sister, who she is really close too, even lost it with her a few times.
I went to see Mil yesterday, first time I've been solo to see her for quite a while, but OH has a run of 6 shifts and I wanted to check on her, after her not seeming too well to me on the last visit. She didn't have a clue who I was, calling me 'Christine' several times, though she still seemed pleased to see me, and spent a lot of the visit gripping one or both of my hands tightly. Amazingly, she had her bottom set of teeth in - staff had found her wearing them when they went to get her up - where they have been all this time is anyones guess. Another staff had found a set of upper dentures, in a male residents room and wondered if they were Mils - they seemed to match, but if you remember, I'd taken Mil to the dentist where both uppers and lowers had been altered and filled to deal with her receeding gums - and there was no sign of any filler on this upper set, so they can't be hers. Not that she wanted to put them in and try them anyway - she half heartedly attempted a couple of times in response to encouragement, then flat out refused.
There were a few things worried me during the visit. Her breathing still doesn't sound right - it wasn't constant, but frequent 'raspy' sounds, and quite a few times she did this odd thing of opening and closing her mouth, almost like a fish does, as though taking gulps of air. She does have COPD, as well as asthma, and I am wondering if after years of the COPD being very well controlled, if its now starting to have more of an impact?
At one point, there was an amazing flash of Mil's old humour, which blew me away! For no apparent reason, she crossed herself several time and when I asked what she was doing, she looked me straight in the face, sort of cackled with glee and as she crossed herself again, said "I'm doing 'spectacles, testicles, wallet and watch'" - she heard this in a film, years and years ago, and found it extremely funny at the time. I haven't thought of it in years myself - but she managed to pull it out from somewhere in her memory, leaving both me and near by staff laughing our socks off.
The palilalia that Slugsta identified for me, was very evident, as well - even more so than I have heard before. And sadly, a lot of instances of sudden and awful agitation. I lost count of how many times she suddenly clenched her fists, screwed her eyes closed and went almost rigid, and made this horrible, loud but gutteral 'Oohhhhhhhhhhh' noise, sometimes two or three times, usually followed by an agitated repetiton of a random sentence. 'It doesn't matter if I don't know her, no it doesn't matter if I don't know her, it doesn't matter, it doesn't matter if I don't know her'. I don't know if she was referring to me, or someone else. A few minutes later, another similar incident, but this time she was saying 'The eggs are in the kitchen, its alright, they are in the kitchen, the eggs are in the kitchen. I put the eggs in the kitchen'. And as I said, this happened quite a few times, and each time she added a repeated comment it was different and not connected to anything that had been said previously, as far as I could tell. Really, really odd. She also complained maybe 4 or 5 times that her back was sore - before I left, I asked if she could have some pain meds, just in case, and I also mentioned my concerns about her breathing.
One thing happened that has actually really annoyed me. One of the nurses came over to give MIl meds whilst I was there, and I found out that the GP has prescribed lorazepam along with the quetiapine. This hasn't been mentioned to us before. Mil was taken off lorazepam, about 2 years ago, after it was clear that it was actually making her agitation worse. A few months before she went in hospital, it was tried again - with the same result, and she was again taken off it. While she was in hospital, despite both OH and I warning them that it didn't agree with Mil, that it actually increased her agitation, they tried it again - and stopped it pretty damn quickly, when they realised that OH and I were right. Now all this should be in her notes, and yet once again she has been given this medication that - for whatever reason - not only doesn't help, but in fact makes her worse. I know that it's been presribed along with the quetiapine because the outbursts were worsening anyway, but what are the chances that its once again adding to the issue, rather than helping it? Apparently, it is known that in some instances it can have this effect on patients, so it's not a case of it being completely unheard of, it's not as though it's just Mil who has this response to the drug. I was so cross - I asked the nurse if the GP actually bothered reading Mil's notes, before writing a prescription? Or if anyone else did? I've made it clear that I want her taken off the damn stuff, asap. The nurse had said that they had also thought her breathing was 'off' and were planning on calling out the GP anyway, and she would speak to him then - lets hope he deals with the lorazepam at the same time. I'll be at the CHC review on Thursday, and I will be following it up then. Maybe the quetiapine - and the dosage of that has been increased, btw - will have a chance of working, if the lorazepam is removed.
I stayed with Mil for about an hour. Each time I see her at the moment, there seems to be something new, more deterioration, more difficulty for her with agitation and more 'distance' in terms of her having a clue as to who we are. In addition, her speech is getting more erratic, her mobility worse, issues with her being able to feed herself are increasing and some evidence of problems with swallowing are now being noted. And all of this is combining and clearly adding to the upset, frustration and unhappiness for her. Her life is so hard for her - and getting harder. So sad and so cruel. I am half hoping that the COPD is responsible for the issues with her breathing, rather than an infection, because if it is maybe that means the end is in sight for the poor thing. As long as she can be kept pain free and comfortable, it has to be kinder than this constant awful deterioration that is clearly giving her so much misery. I have hoped that her deteriorating might bring her some respite from the upset, but that's not turning out to be the case, and its just heartbreaking.
Sorry - seeing all this with Mil is playing on my mind an awful lot. I feel so useless because I know thre is nothing I can do.
Amy, JM, 2Jays, Amethyst and everyone else - hope you are all OK. Sending love to all xxxx