1. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Morning everyone,

    Cream tea then sitting in the evening sun sounds lovely - especially with the addition of chips, Slugsta :) Mil would sometimes read the care notes at her old house, too and it would always infuriate her - I don't think she remembered the notes were there a lot of the time, but if she came across them, she would look (amazed she never threw them out or tore them up, tbh) and the usual result would be her phoning here and screaming at me down the phone to get rid of 'those' girls, saying they were liars and I'd only arranged for them to come in so I could convince people that she was mad :( Do the notes say that the carers are offering a snack, Slugsta - or just that Mum is refusing her main meal? Good idea to keep count of the ready meals, because if she isn't being offered a snack either, that's a situation that needs sorting pretty quickly.

    'Grease' sounds as though it was brilliant, Spamar - I loved that film, and my 3 kids also loved it when they were growing up. I can imagine that a concert like that was really great fun :D Hope that it didn't take too much effort to clear up the 'wreckage' from s-son and families visit xxx

    Hi JM - no, when I spoke to the hospital, I was told that the consultant was only just back from leave and so would be 'very busy', and between that and it being a BH weekend he might not be able to ring me - so I took that to mean that he wouldn't be around at the weekend? I like the sound of the backwoods/bushcraft days - a few months ago, I would have said youngest would have enjoyed that - but after her experience with the DoE overnighters, she is not as keen as she once was about 'getting back to nature' :rolleyes: I hope you are not too sore after 'the Wild Wales' ride, and that you got round it OK. I love Barmouth, fab beach, rock pools that the kids used to spend hours fishing in and the town is (to me) a typical old fashioned seaside town, and so pretty. Mind you - after the cycling, I would imagine that you would be too shattered to enjoy any of its charms!

    Haven't seen Mil this weekend - OH did an extra shift last week, plus on two consecutive days, his 'day time sleep' was disturbed by having to go to training courses - only short courses, but still meant that heis sleep was very interrupted. He has really struggled this weekend, overtired and not able to get into any sort of sleep pattern that has given him a 'good' sleep, IYKWIM. If he isn't stirring by about 11-ish, I'll go by myself to see Mil. As I'm sure you will have realised, there was no call from the consultant. I need to sit down and make some notes to keep me on track for the meeting - I've never met this guy, have no idea if he is going to be approachable and will listen, or if he won't - met both types over the last year or so, with the ever-changing line of consultants Mil has seen :rolleyes: We managed a trip to Mold on Saturday, and also went to Ellesmere Port for a wander round - but yesterday we ended up having a quite day. Oldest's best and oldest friend (mates since primary) who now has a career in marine science, and who works all over the world, was by chance back in the area, so dau and she were able to meet up - over the last 2 or 3 years, they have seen each other only at Christmas, so that was lovely for them both :) I cooked a huge roast dinner for them all (and I still can't believe that they ate so much - I was counting on leftovers for bubble and squeak and an easy tea for tonight!) and then we just veggied out in front of the box last night. Oldest goes back this afternoon and we won't see her now until Oct half term :( Son goes back in just over 2 weeks too - going to be awful quiet here, but hopefully the new job will mean I won't have time to fret over missing them all.

    Hope you all enjoy whats left of the BH weekend xxxx
     
  2. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,951
    Suffolk
    Hi everybody, no, not too long to clear, but lots longer than it would have taken when I was fit!!

    Another concert last night, John Wilson, wonderful as ever! That's our local Prom season ended. However, short (4) series of Christmas concerts, I've booked for 2 of them, though one is just a 'sing Christmas '. I do love Christmas songs and carols! The other is the BBC Big Band, both on the same day!

    Still, months to go before then!

    Hope mil is as well as can be!

    It's lots cooler here today and I'm feeling better than I have for weeks, so maybe it was just the weather after all. It never used to affect me like this!

    Have a good day!
     
  3. Slugsta

    Slugsta Registered User

    Afternoon,

    Spamar, I'm very glad that you are feeling better :) The concerts sound great fun, especially the ones where you get to sing too! I love Christmas songs, have said I would like to join my old choir for their carol singing stint in a local arcade. They have been doing it for many years and collect a good bit of money for the local homeless shelter.

    Ann, I'm very happy to hear that you were able to get to Mold as planned :) Sorry that OH is struggling to sleep though. Shift work can be very difficult to adjust to, especially if daytime sleep is also interrupted :(

    I think things are changing somewhat in some hospitals but many consultants see it as one of the perks of seniority that they do not have to work weekends or B/Hols. Frustrating when this means you are not able to get hold of anyone with real authority. I do hope that this one is approachable and willing to work with you. You have so much experience of MIL's moods, preferences etc, he would be foolish indeed if he doesn't value that!

    Hubby and I took Mum out for drink/cake this morning. She met me with the words 'It was your birthday yesterday and I have a card here for you'. I reassured her that she had given me a card and showed her the bracelet she bought for me. The card she had wasn't written on, so I helped her to do it for her friend's birthday (tomorrow).

    We went to put the new mattress protector on the bed when we got back and found that the sheet had been wet again. Maybe it is time to encourage use of pull-ups at night!

    Meals have been counted, there has been only 1 used since Friday morning :( Some carers note that Mum has refused food, others don't even mention it in the evening :mad: I am going to count again on Wednesday and then phone their office if needed (Mum is at DC tomorrow so I know she will have a meal there).

    I have also left a note asking, again, that Mum's hair should be brushed if it is sticking up in the mornings. She's never been fashion conscious but hates her hair sticking up.

    On a positive note - since Mum's meds have been locked away, the carers have given them at each visit :)

    It's another hot, humid day here. I'm upstairs on our bed, Sky is alongside me. Alf is out in the sunshine, although he did come in to say Hello when we got home at lunchtime :)
     
  4. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Morning all,

    Spamar, so glad you enjoyed the second concert, and especially glad that you are feeling better. As I've said, I love the heat and the sun, but even I've found that over the last couple of weeks, its sometimes been so muggy that I've found it uncomfortable - I was really glad of the ceiling fan in the bedroom last night, that's for sure.

    Slugsta, Its not good that your Mum isn't getting her evening meal regularly. Have you any idea why she would refuse it? If I remember rightly, she was quite happy for her friends carer's to prepare her meal at one stage, wasn't she? So have you any idea what the issue is now? It might help if you knew, and could let the carer's know - if they know the reason for the refusal, then it might be quite easy to persuade or reassure your Mum and encourage her to accept their help and have the meal? Maybe your Mum is regarding them as 'visitors' and doesn't want to put them to the trouble of making food for her? Though having said that, they really should be noting each and every occasion she refuses in the care plan - that's one of the things its there for, to have a record so any issues can be flagged up quickly!

    The incontinence problems are so hard to make a call on :( Mil becomming incontinent nearly every night happened really suddenly - from being dry, 99% of the time, to the bed being soaked virtually every morning, wasn't a gradual thing at all. Fitting mattress covers and adding kylies and so on to protect the bedding was done fairly easily (and I would reccommend a waterproof duvet cover, btw) - though it took me a while to find the best products to use, because of Mil's habit of stripping off the protection. But getting her to accept pull ups was so much harder - Mil would never accept that she had had an accident. At best, she would insist that the bed was 'only damp' because she had been sweating in the night (and then would object to me stripping the bed, insisting it was only sweat and I should just leave it to 'air out'). At worst, she would accuse me or 'somebody' of sneaking into her room in the night and pouring water over her bed to 'get her into trouble' . In the face of such denial, it was flipping hard to get her to accept the pull ups. In the end, I sent a pack with her, into respite, and they managed to persuade her to first try them at night - I just kept on with it when she came home, despite sometimes furious argument from Mil that they were not needed. I wish that at that point I'd also introduced them during the day - there was only an occasional day time accident at that time, though there were issues with stress incontinence and not using loo paper which could leave her less than fresh. But bowel incontinence during the day started as abruptly as the night time incontinence did and it would have been so much easier if she had been using them during the day at that point. The bowel issues were intermittent, for a week or so there would be fairly regular accidents, then perhaps a period of 2 weeks or so, where there were none, then back to frequent accidents for several days. But it couldn't be predicted, so it was far better to have her using the pull ups all the time. I guess what I am trying to say is that in my experience, once incontinence starts to happen, I really think that the sooner incontinence pads or pull ups are in place, the better, simply because the progression is so unpredictable and things can get worse very quickly and with very little warning :(

    OH, youngest and I visited Mil yesterday, after we had dropped oldest at the train station for her journey back to Coventry. With youngest there, we had to use the 'visitors room' and you know, if I could ever afford it, I'd donate cash to do something with that area - its a longish, cream, cell like room, just outside the final set of doors into the ward. Its always stuffy, with one window (that barely opens) facing a fence thats only a couple of feet away, one picture on the wall, and 4 plastic chairs around a wonky formica-topped table. Its so flipping dismal and uncomfortable! No wonder that there have been several occasions when Mil has been convinced that she is in a prison when we have had to use that room. We found Mil to be almost 'dopey' for want of a better word. Rambling, several references to having bet on a horse (?) and then some strange tale of 'pulling letters from a bag' - she got 'J' and 'B', I got 'C' and 'G', she named oldest dau and son, and said they got some too - but quite where the tale was going, we have no idea, as though she mentioned it a few times, each time she trailed off, completely losing the thread of whatever it was she was trying to tell us. There were also several references to'the big fellow' (who she said was her bosses brother at one point) and how she was 'in trouble' with him. There was also a query about what had I done with the 'babby', which had my heart dropping like a stone, though she didn't linger on that one, thank goodness. She had trouble keeping her eyes open and her speech was defintiely a bit slurry. There was some odd awareness though, which was awfully sad - she said to me that she wished she could remember things better, that everything was 'foggy', and a few minutes later, she looked straight at me and said she was worried, because she kept forgetting words that she wanted to say. We didn't stay long - she really wasn't with it at all, and seemed terribly sleepy - we assumed that she had been given a hefty dose of prn meds, tbh, though when I asked as we were leaving, we were told no - she had only had her usual meds, she was just 'very chilled' . I would have said 'totally spaced out' was a better discription!

    Once again, there was a biggish bag of washing for me - which is fine, I'm glad to be getting more than the odd item here and there - however, once again, there were absolutely sodden night clothes. They were in a separate bag within the main laundry, but the bag wasn't sealed, just the top folded over, and the smell of pee was starting to seep into the car before we got home - not nice. Worse when I opened the bag fully to put the stuff in the machine - really acrid and strong. I really don't know whats going on, why I am suddenly getting so much urine soaked stuff - they have pull ups there (I took some in) so I can only assume that Mil is again going through a phase where she must be removing them in the night because they are wet, and then having more accidents after she has taken them off. Not a lot anyone can do about that, I guess - just hope that she doesn't end up with any infections as a result :(

    We went to a couple of car booties yesterday morning, before oldest left - ages since we have done that, but on a really lovely sunny day, they are good fun - and you never know when you will find a bargain or something 'special'. Yesterday, we stumbled across a rather nice but fed up looking chap, who had various boxes of second hand odds and end - amongst which was a large box, stuffed full of camera's. Youngest and I stopped to have a nosy, and found vintage kodak brownies, Ilfords, and various other old film camera's. Daughter instantly picked up a couple and the guy asked for £2 for both. I asked the price on another, and the guy said why didn't we take the whole box - for £10!!! We asked repeatedly was he sure, and clearly glad to be rid of them, he said he was. We bit his hand off - I have a couple of vintage camera's on display at home, but some of these were obviously older. Back home, we sorted through - I thought about 30 camera's, looking into the box, but I'd really underestimated - maybe 65 or more in total! About 30 of them date from late 1980's to '90's, but the rest are all a lot older, with some dating back to the early 1940's. A lot in original boxes and cases too. Plus some really old flash units and filters. Old camera's (unless they date back to the very first days of photography) aren't particularly valuable - most were so sturdy that there are still a lot of them around, and the cost of film photography these days is so expensive as to make them not particularly desireable - but even so. Youngest and I catalogued about 30 - 40 of them, and worked out that taking off the cost of buying them, and basing the value on the assumption that many probably wouldn't work (though actually, I think a lot do!) and so far the value is up to about £150! Not a fortune, and not that we will sell them - they are just too cool and too gorgeous to part with, for the most part :D OH has said he will make me a display wall unit to put the oldest and nicest on, the rest will be packed carefully away and stored - because you never know and because its almost like we have around a 70 to 80 year history of the camera now, and the idea of that has both me and youngest really delighted. OH thinks that they will look 'nice' on display - but he really didn't get mine and youngests fascination with them, lol.

    Not expecting to hear from Mil's consultant today, as the meeting is tomorrow. I'm not going in today, I've decided that every other day/3 times a week is probably enough - its not that I don't want to go, but more and more she seems to have difficulties coping with visits - for the most part, they seem to unsettle her and she is indicating that she wants us gone or that she is becomming agitated after just 20 - 30 minutes at the most. And if she is agitated when I get there, there is no doubt that seeing me (or OH) actually makes her worse :( I don't know why she is like this at the moment, but lately, I feel like I've not done her any good at all by being there. OH has been encouraging me to cut back too - he is only going once a week, twice at the most, due to his shifts, and says he actually feels better for having more of a break, and he wants me to do the same. Once I start work, I may find even 3 or 4 times a week impossible, anyway :(

    No idea what I'm up to today - pootling and sorting camera's, probably :)

    Amy, Grace, Red, Izzy and everyone else - hope you guys are all OK?

    Have a good day, everyone xxxx
     
  5. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,503
    Ireland
    Ann, is your MIL Irish? If so, "The Big Fellow" (actually, colloquially, "The Big Fellah") could be referring to Michael Collins, the Revolutionary & Civil War leader. He would still be very highly thought of by elderly - and a lot of younger - people. I found with William that sometimes his seemingly random ramblings, especially if he was agitated about something, I was sometimes better able to reassure him if I was able to figure out some connection in his thoughts. He used to go on about Michael Collins too - even though William was actually Irish/American. I remember one day, as we drove past a Civil War Memorial, which we drove past several times a week, on a very narrow, winding back road, I almost crashed the car, when William suddenly shouted out "Those b*****ds! They shot the king of Ireland!" and started sobbing! - It was Michael Collins he was referring to! :eek:
     
  6. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Mil is Limerick born and bred, Lady A - so yes, very Irish :) And she did say 'The Big Fellah', so you could well be right! Thank you - food for thought, especially as I agree that sometimes, knowing where the worries/notions spring from can help to reassure and calm. She wasn't overly agitated, but the 'Big fellah' did crop up about 3 times along with a bit of concern that she was 'in trouble' with him - though she couldn't say how, other than at one point she said 'I put him right and he didn't like it!'

    Unravelling where some of what she says comes from is so hard - especially when Mil often thinks that she is talking about something that we are familar with - like the 'letters' yesterday - she was groping for words and clearly frustrated that we didn't automatically know what it was all about. We try so hard to 'go along with' what she says, but when we are so often completely in the dark, it can feel almost impossible to say the right thing or to be able to fill in the blanks in the way she expects us to :(
     
  7. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    I'm laughing, because I know a lot of Americans of Irish descent who make rather a big deal out of what is likely a very small amount of Irish genetic material in their make-up (Exhibit A: one side of my family: guilty as charged)! Certainly this happens with other nationalities as well (exhibit B: the other side of my family) but I've always thought the Irish-Americans could take one freckle and stretch it for miles, if that makes any sense.

    I hope nobody mis-interprets my meaning or I'll probably be pilloried for saying something seen as "non-PC." Please understand that no offense is meant to anybody, other possibly than to Americans, who quite possibly deserve it, and as I am an American, I feel confident insulting myself. (And my maybe 12.5% [generous estimate and likely lower] Irish heritage.)

    Enough of that blarney. Lady A, your anecdote made me laugh, although I'm glad you didn't crash the car.
     
  8. Slugsta

    Slugsta Registered User

    Afternoon,

    Amy, I have noticed the tendency you speak of. I have always assumed it was born of a desire to find some 'roots' as US history is all so recent. Mind you, the same thing also happens to Brits who find a thread of aristocracy in their family history!

    Ann, I'm glad your OH is feeling more rested due to not visiting his mum so often. Please don't knock yourself out trying to go in when you are also getting used to working full time again (mind you, caring for MIL was a real full time job!). As to the bag of letters - do you think the staff might have tried to get her playing Scrabble? :confused: The family room sounds dreary, I'm not surprised MIL sometimes thinks she is in prison when you have to see her there!

    Ann, thanks for your input re Mum's continence. She used to happily wear paper knickers when she went on holiday (she persuaded me to try them, I hated the things!) so I wonder whether that might help her accept pull-ups. Mind you, she seems to have zero memory of any holidays or trips that we took when I was a kid :(

    I don't know what is going on with Mum and her meals. She has said that she sometimes didn't feel hungry at 4.45, which was the latest the housing association staff could do it, because she had 'too many sweets' during the day. I thought it might be better with the carers as they don't visit til 6.30, but it seems not. I showed the assessor, and the first carer, that there is a loaf of sliced bread in the freezer, butter in the fridge and a jar of honey, tin of baked beans and one of salmon in the cupboard, so the makings of a snack are there, even if a full meal is not wanted. No-one has commented that they offered a snack (which was something the SW was adamant would be done if a meal was refused).

    Mum says that the carers 'do what she wants them to'. I said it was time she 'wanted' them to do a bit more! Despite me asking several times, Mum's hair is sticking up when I see her (she has always hated it sticking up!), it doesn't look as if any attempt has been made to brush it for her. Nor has any mention been made of applying cream to her feet and legs, which is on her care plan. So, all in all, I'm not too happy at the moment!

    It's another lovely day here - but there is a distinct hint of autumn too. Even if that is only in the shape of the large spider who has taken up residence in our smallest room!
     
  9. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,951
    Suffolk
    Scrabble Ann? Either remembering playing at home or the care home. Can't think of anything else likely.
    Set back today. Mainly, I think, cos I was moving around so much yesterday. This morning I was fine, bit stiff and sore, but that's par for the course (ie normal, Amy!)
    Went outside to chat with gardener for 10 mins. Came in, started off with such sneezing, runny nose, sore eyes. Eventually worked out that I could hear a combine in the distance, so it was probably dust in the brisk wind we have at the moment! I'm still feeling it! I went to pick up post at front door, and everything immediately got worse, so now dare not move out of this room!! And I take 2 meds daily for this type of thing! Heaven only knows what I would have been like without them! Might be sleeping in the spare room tonight!

    I thought most of the harvesting had been done! There was half a field of beans last week, probably finished last week, and some carrots, but they're pulled, not combined to dust!
     
  10. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,503
    Ireland
    Not at all Amy- when we lived in the US (for all of 2 years or so, over 20 years ago!) we went to a St Patricks Day parade in Tuscon Arizona - a 4 hour drive from us. Dau and I were giggling at listening to people in the onlookers explaining to others that they were Irish "Yeah. My family came over during the potato famine in Ireland. " - which was in the 1840s!! William, however, was more recent! His grandparents had emigrated to the US. He himself held dual US/Irish citizenship.
     
  11. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,503
    Ireland
    Spamar your comments about sneezing etc, reminded me that this would have been a really bad time of year for William's asthma. The harvest is going on all around here, and trailer loads of grain and straw being hauled. He would wheeze really badly!
     
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    I was fairly sure everyone here is sensible and knew I meant nothing derogatory.

    Lady A, that's really funny, because a certain member of my family maintains that our Irish ancestors DIDN'T come to the States during the potato famine, which somehow...makes us better than those other immigrant Irish? And of course, we are descended from Irish royalty. :rolleyes: Yeah, whatever. I can't imagine, but people get really worked up about this stuff. To be fair, I had a relative on the other side of my family who maintained that, yes, you guessed it, descended from royalty again. Sure thing, and I have a nice bridge I can sell you!
     
  13. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Morning all,

    Well, Amy - The Irish are a nation of wonderful story tellers - so the 'taking one freckle and stretching it for miles' (I LOVE that phrase :D) could well be proof of the ancestry :D (BTW - hope you are feeling at least a little better, now, hunx)


    This made me laugh - Mil has told me so many times over the years that her family are directly descended from the 'Last High King of Ireland' - her maiden name was O'Connor - and very proud of it she was too, though the only 'evidence' she had was the name - so definitely true about the thread of aristocracy :D Fil's side of the family can go one better, however - the surname there, though the spelling has been slightly corrupted, means 'Son of Grain' - and Grain was the Corn Goddess, the betrothed of Finn MacColl, the giant who supposedly created The Giants Causeway, in Irish Mythology - now if he has a part in OH's ancestry, I guess it would explain why OH is 6ft 4", and all my kids tower above me :rolleyes: :D

    Spamar and Slugsta - you could well be right over the scrabble - now why didn't I think of that! I haven't see it on the wards (sadly, I doubt any of the patients could play it now) but its a game we have often played here in the past, and Mil has certainly played with us. She did indicate that the 'letters' she was referring too were quite large - she measured a good 6 inches or more with her hands - but even so, scrabble really does make sense!

    Spamar, hope the hay fever eases for you soon. I'm lucky that it doesn't affect me, but all 3 of the kids, especially the girls, can suffer from it on occasion - It's miserable for them when it does flare up, so I feel for you x

    Slugsta, I hope the meal situation can be sorted - not good if you are worrying about her eating, and obviously not fair on your Mum either. I so get your annoyance with your Mum's hair not being combed. I have a 'thing' about Mil looking presentable, and have bitten my tongue several times about seeing Mil with greasy/not combed hair (different if she is agitated and her hair is a mess because she is sweaty) and I've also been annoyed by seeing her either bra-less or, on a couple of occasions, wearing a pj top with her day clothes, as if it was a t-shirt top (it has matching bottoms, obviously, so how it can be mistaken as day wear is beyond me). I know that there is a valid argument that in the grand scale of things, little details like that are not worth fussing over, but I am sort of 'old school' - when I began care work, little touches like seeing someone was as well groomed as was possible were considered important, it was a matter of dignity and respect, I guess, and that's still lodged firmly in my head. Knowing Mil of old would be ashamed of not looking 'tidy' also plays a part. Dementia robs a person of so much dignity, often in ways that carers can do little about, because there are times when safety, health, the need for calm and sometimes just practical issues mean that dignity does end up pushed well down the list of priorities. But in my head, in a way, that means that seemingly 'little things', like hair being combed, like appropriate clothing, that you can do something about, almost become more important - if that makes sense?

    The cream on the legs too strikes a chord - Mil is prone to cellulitus and the DN suggested that applying an aqueous cream to her lower legs, where her skin is quite dry and where the infection would often flare up, would help - and it defintely did help. I would always send some in when she went into respite, but most of the time she would come home and it would be very obvious that it hadn't been used at all. Cellulitus is so uncomfortable and can be serious - it used to madden me that it wasn't done, it only took about 2 minutes and Mil never objected in my experience, so there was no excuse.

    As expected, no call from the consultant yesterday, so I'll have to gird my loins for todays meeting, I guess. Trying to put into words my concerns, without being rude - I guess basically its a case of although this new guy will, I'm sure, make a convincing argument for the change in diagnosis, so did the consultant who said she had LBD, and as a lay person, how the heck am I supposed to be able to tell who out of the two is right? And that I don't 'need to know' what sort of dementia she has just for the sake of knowing - its the medication angle that is my main concern, because meds prescribed for one type of dementia can be incredibly detrimental to the pwds health and well being if they actually have a different type. Over the last few months, I've come to certain conclusions where Mil is concerned. I'm sure that just prior to her admittance, that there was a TIA, small stoke or some similar type of 'event' that was the cause of both the bruising she had on her head when we picked her up from respite, and the massive deterioration in her mobility that was so apparent at that point. She had been off resperidone for approximately 6 weeks, I think by then? Since that time, though, despite an initial further deterioration which was I think due to the UTI's and chest infections, her mobility has, I've noticed, improved massively. The tremor in her hand is still there, but even that seems 'better' than it was. And its hard not to suspect that the resperidone being withdrawn hasn't had something to do with the improvements, because its noted for worsening mobility issues and parkinsonisms in pwd's. Up to the time it was re-introduced by the hospital as a prn, I never got wet night clothes sent home - now, all of a sudden, its a very regular happening and again - resperidne is considered likely to increase problems with incontinence. And finally, I've been told that its been given when she has been agitated, but that it hasn't seemed to have any effect at all.

    Plus, the use of prn's, with new ones seemingly being introduced every 6 or 7 weeks, seems to preclude the previous consultants declaration that an EMI home would be suitable for Mil - if they are going to continue with prn meds, then they are going to have to change that in her care plan, and state that she needs EMI nursing care - and then maybe we can start to look for somewhere permenent for her, and get her out of the hospital. I worry that the longer she is there, then the less chance there is of her settling elsewhere, particularly if it is a completely 'new' place, rather than the home she was so used to, for DC.

    Does that sound reasonable to you guys? I don't want to get off on the wrong foot with this new consultant - especially as he is supposedly now permenent - but I also don't want to just keep quiet, if there is any merit in my concerns.

    I'll update when I get back - hope you guys all have a good day xxxxxx
     
  14. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,951
    Suffolk
    Hope your meeting goes OK. I guess I'm a bit late to add any advice!
    Went shopping early, in case I had another dust strike! Today there is no wind, which helps. Eyes still sore, throat a bit sore, bit wheezy and ribs sore, guess that's all the coughing. I noticed several things I react to recently, I think the removal of the 'background' triggers ( like pipe smoke) make these other things more obvious. I had a bad reaction to the oak pollen as well. While I was shopping one of the guys who works there asked how I was, so I told him and he agreed with my conclusions. It was only when I got back to the car that I realised he was a first responder, so if he was happy, I'm happy. He came once when OH had a Tia and was slurring his speech. Didn't recognise him til he was about to go! Why is it do difficult to recognise people 'out of context'?

    Ann, I used to have a thing about OH being correctly dressed as well. I could cope with no cravat in the summer, but he's never worn a T shirt in our life together, don't see why that should change. He would happily take a shirt off over his head, so what's the difference.
    He had one 2 week respite when half his clothes disappeared, when he went back for another respite, I said I'll do the washing, but still things went! The next respite ( the one he stayed on in) was in a different place, I let them do the washing. Still things disappeared.
    I think these things are a lot to do with the manager. Unfortunately they don't seem to stay very long!
    Have a good day all!
     
  15. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Not gone yet, Spamar - meeting at just after 1.30 :)

    The disappearing clothes is a real pain in the backside :( I don't think Mil had even one respite where I didn't have to chase up missing items after she came home - some of the items stayed missing, too, despite my best efforts! I've replaced all of Mil's wardrobe over the time she lived us, mainly to try and continue to allow her to dress herself for as long as possible, so blouses were replaced by pretty tops when buttons got beyond her, I chose fabrics that were 'stretchy' and easy for her to get over her head, made sure all her trousers were elasticated waist trousers (after she developed a tendency to 'zip' the skin on her tummy up, as well as the trousers - ouch!) - but I also tried to keep in mind how Mil liked to look and the style of clothes that she prefered. It always mattered to her that she looked 'tidy', that her hair was clean and brushed, that her clothes were appropriate and 'nice' for whatever occasion - and somehow, even if at times she didn't seem to care much or even be that aware of how she looked, the fact that it used to be important to her meant that I felt I should at least try and help her stay that way. I really hate seeing her looked unkempt, especially when I know that with a bit of time and effort, it doesn't have to be that way :(
     
  16. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,063
    Female
    Chester
    Ann - hope meeting went well and you get to the bottom of different changing diagnosis :eek::mad: changing PRN meds - again :eek::mad: and what sort of home is suitable for MIL. Soooo frustrating.

    Glad OH is finding it better cutting back on the visits, if they don't help MIL then just popping into make sure she is OK is what is needed, and not a sit down with her. Things may all change when she is in a home, but it maybe that for now keeping an eye on her without interacting with her for 2 long is the way forward. It is can be such an out of routine situation to visit and chat, for most of us, as we would normally be doing something.

    If I go to my mum's and she is taking part in an activity I will observe her and then pop her food in her flat, if she comes out of the lounge she is unlikely to go back so I leave her there to enjoy whatever she is doing.

    Spamar - son has been sneezing on waking up recently, we have windows open, maybe it is the dust from harvest, we know his hayfever is triggered by grass. Not much to be done about it.
     
  17. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Ye Gods!

    Where to start! Excuse any rambling, I've walked out of the hospital not sure if I'm feeling furious, relieved - or simply just vindicated on an awful lot of issues.

    Went in and spent a little while with Mil before the meeting. Found her in a really lovely mood, though rather formal at times - she asked me how my 'husband was keeping these days', so I don't think she had a clue who I am to her, but as long as she was fairly cheery and chilled, no problem.

    Then called through to the meeting - Dr R, the junior consultant (who I've met several times), staff nurse M (again, spoken to her a lot), the CPN and the new consultant, Dr M. Initial impression - Dr M seemed, I felt, quite defensive, as though he was expecting me to be difficult (moi???). He started by explaining very firmly why Orlanzepine was being removed - because it can impact quite badly on diabetes, apparently! (I had previously been told that orlanzepine was staying because it is a mild anti-depressent - first I've heard of it presenting issues with Mil's diabetes!). I got the impression that I was expected to argue with that - but I merely pointed out that I have repeatedly said that I have never felt it made any difference to Mils behaviour, anyway, and this was confirmed by the CPN.

    The next bit floored me. He said that he believed that somewhere along the way, 'someone' had 'mentioned' LBD to me as a possible diagnosis. I told him that no - it hadn't been merely 'mentioned' - that actually, 2 or 3 consultants back, a consultant had told me very definitely that Mil has LBD and that all her meds were changed as a result.

    He didn't really respond to that, merely saying that after Dr G had 'expressed that opinion', that a Dr A (and I can't decide if the name he gave is familiar or not, tbh) had reviewed all the information and notes and decided that no, Mil has 'AZ dementia of the mixed type'. Again, I interrrupted - because this was news to me - I pointed out that absolutely nobody had ever told either myself or OH this. He said something about how all psychiatrists have different opinions (no s**t, Sherlock!) and then went on to say that at the point Mil was admitted, she was on a cocktail of drugs that was quite probably making her worse. He gave a specific name for the practise of 'over-medicating', but I'll be blowed if I can remember the term he used at this point.

    He then said to me that he had spent a full day going over all Mil's notes, right from diagnosis, and that he was as sure as it was possible to be that Mils diagnosis of Mixed AZ and VaD was the correct diagnosis. But that the frequent medication changes and the high doses had probably caused more issues and not helped her particular presentation. He told me that guidelines advise that minimal use of anti-psychotics should be used with dementia of that type, so he intended to follow those guidelines and minimise the drugs given. He added that he couldn't be 100% sure that it wasn't LBD - just that he assured me he had gone over and over Mil's notes, and that AZ, mixed with VaD was by far the most likely correct diagnosis.

    I expressed concern about the re-introduction of resperidone, explaining my concerns about its impact on her mobility and the parkinsonisms, and how I felt she had improved (mobility wise) since it had been stopped - and the staff nurse confirmed that Mil's mobility at the moment is really, really good by comparison to when she was admitted. He told me that actually, the problems had probably been caused by Mil being on a high dose of resperidone for too long. At which point I came close to losing it. Because as I pointed out, about 18 months ago, I raised this as a concern, that a consultant had come out to the house and catagorically stated that the resperidone had absolutely nothing to do with either the gait Mil had developed or the tremor - and now this Dr M was telling me that yes, it was responsible. The CPN confirmed all I said. Dr M went on to say that he had been very careful to follow guidelines, and that such a small dose was being used as a prn, that it would not exaccerbate mobility issues, the parkinsonisms, at all - but would help when her behaviour became difficult. He said his main aim was to reduce the medication, that the resperidone would now be very carefully monitored. He said that - for the moment - he felt that Mil was at the optimum level that could be acheived, given the diagnosis and her particular presentation, adding that this could only have been achieved in hospital as you just can't change these drugs quickly with any safety. Through gritted teeth I said that was exactly why I kicked up such a fuss when they tried to discharge her - that I'd even asked for the admission in the first place because I was concerned that all these different drugs were not helping and that I didn't feel it was safe for me to continue deal with the constant changes at home. I didn't get much of a response to that, and Dr M moved quickly on to say that he felt that Mil was now at the point where she could be discharged.

    So, I asked, in the light of all Dr M had said, if an EMI home was really the right place for Mil to be discharged to?

    M, the staff nurse took over. In their 'professional opinion' she said, Mil needs an EMI nursing home, not just an EMI unit. She said that most afternoons, Mil became 'distressed' to the point that for 'long periods of time' she required one to one support from the ward staff - which couldn't be provided in an EMI unit - in order to prevent her becoming aggressive. And once again, I got the impression that they expected me to argue with this - I told her that I was actually relieved, because I had been so worried that Mil would go to the home of our choice, that they wouldn't be able to cope, and we would have to uproot her again, possibly with an inadequate time allowed for us to find the correct place for her. I said that the aggression I witnessed had convinced me that it had to be specialist care. The CPN said that she thought that I was 'starting to struggle' with Mil anyway - I said quite flatly that I thought I coped pretty well with everything else, but when it came to physical violence, there was no way I could cope - that Mil flipped so quickly and that it was so unpredictable, that I didn't think anyone could in a home situation - Dr M interrupted to say he had read everything and he felt that we had dealt with more than most families possibly could. The staff nurse agreed and said that they felt the same - that Mil was so unpredictable, going from nice and jolly to furious and aggressive temper with little or no warning, that they would almost have to insist on professional care for her and that OH and I had done amazingly well to keep her at home as long as we could.

    So that's it. I was right to be worried about the resperidone causing the mobility problems. I was right to be worried that the drugs, and the constant changes in medication, were making her worse. I was right to say that I couldn't continue to oversee the changes in medication at home because I didn't feel it was the appropriate place to deal with such serious drugs and the possible side-effects. I was right to insist on Mil being admitted and to push for it so hard, to get the meds sorted. I was right to kick off about them trying to discharge her when all they had done was stop sleeping tablets. I was right to be worried about the reccommendation for an EMI home, rather than nursing EMI. I'm cross because of all the times when I've been left feeling as though I was being a pain in the backside and over-reacting - suddenly (although there wasn't a hint of an apology) all the concerns I had expressed feel totally justified, the ever changing meds and succession of consultants did make things worse. I'm relieved that now at least we have a clear direction to move forward into.

    I was told that Mils care will be fully funded under the 117 still, and that I didn't need to worry about or do anything about that. The staff nurse said she would go through everything in detail with me, about what happens next. I was given the name of Mil's social worker - news to me, we have seen about 3 whilst she has been in so far, had no idea that there is a specific named one still - and she will liase with us to find a suitable place for Mil - it's doubtful it will be in this county, there just isn't adequate provision here - but two neighbouring counties may be possibilities. OH and I now I guess (going on past experience) have to stand firm and see that whereever she goes is where we think is the best place for her - not just the first available option that arises.

    Reeling from all that, I went to se Mil again before I left, and found that old unpredictability had reared its head again. Back to the pretty nasty, pass-remarkable persona. Comments about the staff and fellow patients - none of them at all flattering - and a fixation on the female patient that Mil has already had several run-ins with. Mil kept going on about how she was a 'gangster' and that Mil 'hates her' - because she always has a face like a smacked ar$e, apparently - and 3 times Mil said that she was going to 'deck her if she doesn't take that look off her face'. She also pointed out the consultant as a 'gangster' - she said he only pretends to be a doctor! When I tried to remonstrate with Mil, she informed me that she 'knew she could wind me up if she tried" - so I decided to leave. I did tip off the staff about the aggressive threats before going though. Waiting now for the list of homes that the CPN said she would get to me and to hear from this SW.

    Sorry for the long ramble - still a bit gobsmacked, I think!
     
  18. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Oh, Ann, I don't really know what to say, other than to reassure you that you have always been a good advocate for MIL and have always, without fail, acted in her best interests.

    I'll have to have another read of your post and think a little more, to address some of the specifics. I'll be back.
     
  19. Slugsta

    Slugsta Registered User

    Afternoon all,

    (((Ann))) I'm glad the meeting is over. I'm glad that your thoughts and concerns have been vindicated. I'm glad there is a clear plan for MIL's next step. I am not glad of all the carp you and MIL have gone through to get to this place!

    Spamar, I'm glad that you are feeling a bit better. I usually get my hayfever very early, when the tree pollens are around, but am suffering from sore eyes and scratchy throat too at the moment.

    Yes, it can be difficult to recognise people out of context, can't it? I'm particularly bad at working out how and where I know someone - were they parents of our son's cohort? People I have nursed? Worked with? Met socially (if so, where)? Often I end up making very general comments 'how is everyone?' in the hp[e that the other person will give me clue!

    It looks as if Mum was given a meal on Monday, so I'm going to keep an eye on things for the time being. I had a call from the carer at 8am today - Mum had no meds! Ah yes, they were still in my car :eek: Now that they are locked away, I can leave a new pack before the old one is finished, so I will have to get into a routine for that.

    Our outing was fairly uneventful, although we did have a problem with Mum's bank card being declined. We went into to the bank (luckily, there was a branch almost next door) and it appears that Mum's card has been stopped as I have activated the PoA. Which would be fine if my card had arrived. So currently we have no legitimate way of accessing her funds or paying bills! :mad: Then hubby handed over the old card for the bank to destroy - even though he knew I wanted Mum to keep it to help stop her mithering. Just an example of me having to bite my lip because he was being 'helpful'! :rolleyes:

    It's been quite mild today and humid at times. Lots of cloud though and certainly not as nice as it has been. It was also getting dark when I finished choir just before 8pm yesterday :(
     
  20. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    It's like a too-late vindication, really, and I guess he can't apologise because otherwise he'll look as if he's criticising his colleagues. But going forward it should give you every confidence in your own judgement, Ann.
    Hope you are all okay. Anyone heard from Grace?
     

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