So sorry about the sad loss of your Mum. You probably have very mixed/conflicting emotions, just make sure you look after YOU as well as everyone else at this time. You have more than enough to worry about as it is.
Evening all,
Slugsta, I hope that whatever help is on offer materialises soon, so you can at least have chance to sort out your Mum's meds, hun - I used to worry like mad, more about il taking too many pills (she had a trick of 'borrowing' the next nights sleeping tablet at one stage, which obviously led to all sorts of confusion) than I di about her missing the odd dose
R-Anne - a very bizarrer confabulation! Its still completely throws me when the tiniest bit of 'fact' (as in your OH flying in the RAF) can be built upon to create such fantastical tales. At the moment, a lot of Mils stories revolve around why she is in hospital (on the occasions when she accepts that she is in hospital, that is!) - she fell over chasing a lorry; the man with the stick knocked her legs from under her and left her unconcious; she fell over on the boat coming over - the 10 past 4 ferry, it was; She must have been allergic to that wasp-thing that stung her; he Doctor (naming an old GP who passed away many years ago) sent her in for a rest because she was exhausted looking after all the children. We can get several different 'reasons' for her admission in the space of an hours visit. I hope the medication changes are or will be worth all the stress and effort that they take, hun xxxx
Maureeen, yep, the stairs are Ok for a stair lift - we actually did a lot of research on this several months ago. We can alos have ceiling hoists fitted if needed. DC taking her - hmmmmmm, sort of yes, but almost certainly only a short term measure as they are not geared to EMI nursing, which is what the consultant, CPN and the like are saying she would need. No room downstairs - we are semi 'open-plan' with one room leading off another. If DC can't take her for day care, then there is one alternative in the area - but for a lot of reasons, its not an alternative that either OH or I are particularly keen on - however, we accept that if push comes to shove, then it might be the only option Mil has had 'social care' support staff before, so I assume that something similar would be on offer. And - if needed - there could be up to 4 carer visits a day. We think that if we get to that stage and she is still here, then we would have to pay (or rather Mil would) for extra visits in order to save my back. I have never heard of any sort of a sitting service being on offer
dotty, if she qualified for CHC then yep, I guess we could get more care in at home - however, CPN and Consultant, as well as at least 1 social worker and a 'senior' from adult services have all told me that getting CHC is so near to being impossible that its unlikely, despite the consultant and others backing the need, that she would get it
News about meeting. According to OH an almost complete about face on the part of the hospital. It seems that the gunmen and gangsta's (or something very similar) have caught up with Mil in hospital. The meeting today was all about how paranoid and distressed she gets. I guess they had to see it for themselves, our word and the word of DC evidently wasn't enough - but it seems that seeing it for themselves has finally got the message across. Its now 'No way' is she ready for discharge and they have at last started to do something with the meds. Its taken nearly 6 weeks and repeatedly being told (not just by us and DC, but hands on nurses from the ward) to convince them that we are right about diazepam, and they have finally stopped it. Memantine is now down to half its previous dose, and will be halved again before withdrawing completely - they are saying that already she is sleeping better, and that they think the memantine was possibly causing the issues before. Orlanzapine has also been massively decreased. Whislt the withdrawal hasn't helped with the behaviours, they are saying now that the way is clear to try other meds that might help - they named a medication that OH can't for the life of him remember - chlora-something? - an old med which used to be used to treat alcoholism but which sometimes works well fro dementia induced delusions and hallucinations? Anyway, they are trying that. It will be at least anothe 2 weeks till they consider discharge. They sent OH home with a bag of laundry that was absolutely stinking from urine soaked clothing, all piled in together, so I have no idea if it was the pj's or trousers. I have provided them with pull ups (though they insisted they had some on the ward for patients use) but I'll send in more tonight, along with the 2 new sets of PJ's and the nighty I've just bought her. So many of her things seem to have been lost
At least now I feel that they are actually doing something for her - I just wish it hadn't been such a stress filled, exhausting, miserable battle to get this far!
Good grief RA - you have just described exactly what my late husband was like back in 2011! It had been building up gradually for years, the increasing paranoia, the occasional hallucination but suddenly "exploded" into full blown psychosis. He would spend all night running around the house pushing the furniture up against the walls to bolster them, because "they" were in the attic sawing the roof off and were then going to push the walls in on us, among other things. One night he "saw" several fire engines & police cars with lights & sirens going out in our back garden, because there was a huge fight going on - but our neighbour (who is actually disabled) came and fought off the bad guys! William phoned him in the morning and thanked him, describing the whole scene to him! Evil men were, every night, torturing my daughter to death - pouring acid in her eyes. (not sure what he thought when, every morning, she bounced out of her room and went off to work!). We couldn't go outside the door, because evil children lived in the trees and screamed abuse at us and threw things. (yet, he worried about these children, and would take food out, because he was afraid no-one was feeding them, bless him!).Thankfully, William's GP was a friend of the Psych of Old Age Consultant and got him an emergency appointment - otherwise, we'd have been waiting months if not longer, with our Health Service in such a shambles over here! After several tries, he was finally, reluctantly, tried on Risperidone & trazadone, and we were lucky - it worked as if someone had flipped a switch and turned off the whole nightmare for him! And he was even more fortunate in that from then until he died (they tried a few times to reduce his dose, but the psychosis broke through immediately, so he was on it until he died last August), he never had any side effects from it.Hopefully some progress, but so much torment for MIL and you. So sorry..
As soon as Diazepam was stopped here husband slept better at night. Then we got something called mirtazepam, or similar, and things had seemed a bit better. But then the worrying started again in earnest...to see a grown man cowering in fear is something I wouldn't wish on anyone... But he still slept better at night. Day times have got worse and he clings to me like a toddler desperate for his mum. On Saturday he was intent on walking home if I wasnt willing to go with him( can't walk far with my arthritic legs), but he insisted he would wear his pyjama trousers. Got him into proper clothes but had to get the car out and drive about. Usually that works quite quickly, but that day I must have driven about fifty miles randomly before daring to stop for a cup of tea in a tea shop. Even there, he was the victim of a plot, the village were all out to get us, and we had to leave rapidly. At last I remembered a lovely old fashioned plant nursery in an old walled kitchen garden, and he relaxed.
After several different people chasing the CPN on our behalf, at last she's coming next week for an assessment..but if she really sees what he's like( and he can pull out all the stops to appear just a teeny bit confused in a sweet old man sort of way), what can she offer? I'm trying again to get him into some respite, but I bet it doesn't happen...the Care Home is dragging its feet, and who wouldn't? No one wants their calm Care home disrupted.And last night he was awake for hours again, begging to know what exactly was going on, and what had happened to him? Plus asking " where's Anne?" at intervals of about 30 seconds....for hours and hours.
Ann, I hope things improve for you.....sending a big hug.....
I'm going to the funeral, simply because my step dad has asked me to and so for his sake only - OH will come to support me, I've been very open with my kids and made it clear that its their choice as to whether or not they go. All of them are old enough that they had realised for themselves what their Gran was like, even my youngest. So far, all have said they will go, though like me, they are going out of respect and for the sake of Step dad, who they feel was more of a grandparent to them than my Mum was. I'm proud of them.
Huge thanks to all of you for all your sympathy and kind wishes xxxx
R-Anne - mirtazepine had only a short term affect on Mil too - initially seeming to calm her, then slowly but surely, back to the delusions. Its a horrible merry-go-round, new medication, inital high hopes then the realisation that no, the new med has had limited sucess at best and you are back to square one . My heart breaks for you at the description of what you are both going through, I have fingers, toes and everything else crossed tightly, hoping that the CPN simply does her job properly, and gets you the help and respite that you so desperately need xxxx
Its all quite surreal here, at the moment. I have regret that the relationship I had with mum was as it was, but know that I honestly did my best for a lot of years before I had to give up. The hardest thing has been dealing with my siblings, my 3 sisters, who broke off all contact with Mum years before I did. After speaking to my step dad, I took on the job of telling 2 of them the news, though I flatly refused to deal with the so called Christian sister and strongly advised step dad not to go down that road either! Youngest sister was quite matter of fact and pragmatic, she too had sadness that she hadn't had a better relationship with her Mum, but was very clear that it was down to Mum that things were the way they were between them. She won't go to the funeral, and was very vocal about me not letting our brother or step dad 'guilt trip' me into going if I don't want too - she was very blunt, saying that I'd done my 'share' where Mum (and step dad and brother) were concerned, and that I owed none of them anything!
Telling the next sister was awful. Her response was basically 'Good Riddance' - not totally unexpected but still awfully disturbing to hear. Followed by an out-pouring of all the bitterness and anger she has towards Mum. Their relationship was always poor, even when my sister was a child and I always knew that Mum had especially targetted her, God knows I'd stepped in and been the buffer between them so many times - but I didn't know of all the incidents and unpleasantness that had happened, and hearing my sister basically rant about all that our Mum had put her through and done to her over the years, was horrific. That is playing on my mind more than anything else. It can't be glossed over, the way Mum treated her from when she was a small child was abusive, physically on occasion, but mostly mentally and emotionally. I'd resented my sister many times, for the way she just bowed out and (it felt) left me to be the one coping with Mum - now I have the full story, I am only surprised that she tried to maintain contact for as many years as she did. Like me, it was when our Mum started to aim her nastiness at my sisters children (again, something I didn't know the full story about) that my sister said enough. She told me that it was the 'best thing' she ever did, she wished she had done it a lot sooner and no - she won't go to the funeral, and whilst she appreciated me letting her know, actually, she would prefer never to hear about or talk about her mother ever again. In all honesty I can't blame her. I keep going over in my head what she said, upset that I had no idea about the extent of what she was put through, and oddly troubled by her firm statement that the only reason that I wasn't treated the same way was because Mum knew that she needed 'someone capable' on side, to run around after her and get things done. That echo's something the other sister said, when I spoke to her - they both seemed to think that Mum pulled the wool over my eyes in order to use me, and that it was quite calculated on her part. They both felt that when I was around, Mum very deliberately toned down her worst behaviour. I feel so stupid that I hadn't realised this for myself.
Then I had to break the news to Step-dad (who, despite him and Mum being separated, had remained her husband and stayed very close to her) that no, they would not come to the funeral. He was so sad, but said he understood the youngest sisters response as he knew that Mum hadn't 'been nice' to her after she made the decision to move a huge distance away. He said Mum had 'never forgiven' her for that. But he insisted, on and on, that he didn't understand why the second sister was so 'down' on her Mother. In the end, as he was (I felt) trying to push me into agreeing to persuade her to come to the funeral, I gave just one brief example of one of the things Mum had done (referred to my sisters son as 'the stupid one', in front of my sisters then quite young daughters - her son is severely autistic) and he sort of got it - though, as he always has, he excused the comment by saying that 'Oh - that's just what your Mum was like, Ann'. I was also quite shocked at his acceptance of why I had kept my distance - he was extremely aware that Mum had 'turned very unpleasant' with me - more so than she had ever been - and quite matter of factly told me that Mum was furiously angry that I had taken Mil in to my home to look after her. That she had not - and never would have, in his opinion - ever forgiven me for 'putting Mil before her'. That she had openly and repeatedly said that I should have put Mil in a home - not because, it seems, that she was concerned about it being too much for me, but simply because she felt that if I was to look after anyone, it should be her - not 'someone elses Mum'. She was basically jealous. I knew that she resented me looking after Mil, but step dad made it clear just how much. I got the impression that he feels that she left him, went to the lengths she did to try and persuade me that she had dementia, lied to me about her financial state and other illnesses, all to try and 'force' me to put Mil in a home and have Mum come to live with me instead. And when it didn't work, she started on my kids by way of a punishment.
I'm not taking responsibilty for her reaction to me having Mil come to live with us - even without Mil, I know that I would never, ever have allowed Mum to live with me and my family, because even if I was stupidly oblivious to the real extent of her behaviour, I saw enough to know that I couldn't and wouldn't have her live here. I've just been left feeling absolute pity for her sad life and the way that despite all her manipulations, she ended up with all but one of her 5 kids turning their backs on her, and that she had no one but herself to blame. If anything - and I dread to think how this sounds - I am relieved that she has died. She must have been so twisted and bitter, that I can only think that death has been a release for her. I also hope that now my sisters can move on and begin to come to terms with how she treated them - especially my second sister. Going over what she told me when I broke the news is the aspect that I have found more upsetting than anything else.
I'm going to the funeral, simply because my step dad has asked me to and so for his sake only - OH will come to support me, I've been very open with my kids and made it clear that its their choice as to whether or not they go. All of them are old enough that they had realised for themselves what their Gran was like, even my youngest. So far, all have said they will go, though like me, they are going out of respect and for the sake of Step dad, who they feel was more of a grandparent to them than my Mum was. I'm proud of them. We intend to leave as quickly as we can after the service though - alcohol played a big part in Mum's life, and Step dad and brother are also quite alcohol dependent - and neither of them are 'nice' drunks, once they have had a certain amount. From the sound of it, my brother, despite having had a triple by-pass 18 months ago, has been pretty much drunk since Mum died. I will not put me, OH or the kids at any risk of having to deal with what I feel will be almost certain 'fall out' once they have had a few down them, as (of course) it will be a case of 'all to the pub' after the service.
I rang the hospital and explained about Mum dying to the staff there - though obviously, no mention of how complicated the actual situation is - and said that we wouldn't be visiting Mil for a few days whilst things 'got sorted'. I need a few days of a break from Mil's issues at least, whilst I deal with Mum's death - I think the hospital understood, but in all honestly, don't much care if they dont!
Thanks again for all the support - at present I have no idea when the funeral is, just hope that its soon. I think the sooner that Mum is actually 'resting in peace', and my sisters can move on, the better. Dreadfully sad, but true.
Take care, all xxxx
I am still knackered (please tell me that means "tired" and not something rude!)