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So bizarre !

Ann Mac

Registered User
Oct 17, 2013
3,693
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 :(
 

jugglingmum

Registered User
Jan 5, 2014
5,613
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.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
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!
 

Amy in the US

Registered User
Feb 28, 2015
4,617
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.
 

Slugsta

Registered User
Aug 25, 2015
2,761
South coast of England
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 :(
 

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?
 

Slugsta

Registered User
Aug 25, 2015
2,761
South coast of England
Sorry, I meant to say -

I have done a quick internet search and the first mention I can find of hyperglycaemia caused, or worsened, by olanzepine was in 2002. So it seems that this has been known about for a considerable time. Maybe previous consultants have believed that the benefit outweighs the risk - but I would have expected that to be discussed with the NoK!
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
RedLou, nice to see you and hope you are well. I haven't seen Grace lately and wonder if she's gone for her op?

Slugsta, sorry about the trouble with the bank. I agree it would have been more helpful for you to get the new card, before they deactivated the old one. I hope you can figure out what is going on with your mum and meals, as well as notes for the carers. I wondered about you getting some sort of notebook or binder (with those clear plastic "envelope" type things that will hold a sheet of paper or bits and pieces) that you could keep your notes in, after they've been given to the carers, as part of your paper trail. I also think it's a good idea to take a photo of the sheet, with your sticky note on it (or note taped to it), with your mobile, again as part of your paper trail. I don't understand why they can't follow directions. Very confusing.

Ann, I just don't really know what to see about your meeting. I can understand if they were refining a diagnosis, or if an earlier assessment had missed out certain behaviours or problems, but I can't understand all the changes in her diagnosis.

Regardless of that, I am certain that you were right to raise your concerns about the medication, absolutely, so please don't doubt yourself.

I hope there is some progress with finding an appropriate home for MIL. It must feel like a terrible waiting game at this point.

JM, hope your daughter continues to feel better.

Everyone with seasonal allergies: gesundheit! And please pass the Kleenex/tissues/whatever you say where you live!

Spamar, hope you continue to feel better.

Anyone I've missed out: apologies!

I have some news on the dementia front. Let me preface this with: my mother is okay. I got a call today (it is still before my bedtime here in the States-but only just) from the lovely nurse manager at my mother's care home. It seems it is time for a move from the assisted living unit, where my mother has been, to the memory care unit.

I am unsure of the exact equivalent in UK terms, but my mother is currently in a small studio apartment in an open wing of a building, where the other residents might have dementia or might have purely physical problems or both. It's not full nursing and there are no bedbound patients. There is some assistance available if a person needs help with bathing, dressing, et cetera, and medication is administered and monitored.

The memory care unit is a locked ward and is only for residents with dementia who are deemed to need more care than what can be provided in the assisted living section. I have a meeting with the staff on Friday morning to get more information, see the unit (I've not been there; I was putting it off thinking we weren't there yet-foolish, I know), start paperwork, et cetera.

You know it's coming, but you're never ready to hear it.

The possible good news is that one of the other residents (Miss T) in the assisted living section and my mother are very close and spend a lot of time together. Well, this isn't exactly good news, because Miss T also has some sort of dementia and also likely needs more care. If Miss T's family are amenable, the staff would like to move them both at the same time, and into adjoining rooms. The nurse manager thinks this will make it less distressing for them both, if they have each other. I am all for this plan but of course Miss T's family must decide.

My mother has been harder for the staff to redirect, and I gather there have been some issues in the dining room. Apparently my mother responds better to some members of staff, than others. There has been some aggression and while I think they do a good job of redirecting her, I also know there is sometimes not enough staff (especially at night) to really provide her the reassurance she likely needs. I know there are other declines; I am not sure my mother has any reading comprehension left, she frequently cannot work her television, and I think she can no longer work the telephone at all (she hasn't made any calls, at all, for several months, according to her telephone bill). She is completely disoriented to time and place. She is also just generally a little more tired and frail.

Apparently the deciding factor was an incident today; my mother and Miss T were upset about not being able to go on an outing (some issue with transport). They both threw a tantrum and then my mother took off down the street, ignoring the frantic staff member who tried to redirect her and then followed her. The nurse manager had to go running down the street and somehow persuaded my mother to come back, and to go for a walk with a staff member in the (enclosed) garden. I heard them loud and clear that this is a safeguarding issue and of course safety is paramount.

I was surprisingly (well, probably not to anyone here on TP!) upset by this today. I wandered around in a daze most of the afternoon and was glad it was a "free" day today. I just feel sad. I hate this stupid disease.

As therapy, DH and I tried baking pound cakes tonight and they fell in the middle; they taste all right but look horrible. They were for our family gathering this weekend (it's a holiday weekend, Labor Day, sort of like an end-of-summer Bank Holiday weekend). We will either eat them anyway or they will go in the freezer and be reborn as trifle, it's not important, but it sort of felt like the universe was telling me I couldn't do anything right. (I know that's not true, but really, you stupid cakes? You couldn't just turn out for me?)

I'll know more after my meeting on Monday and will let you know what's happening; I'm sorry to ramble on but thought you would want to know. I haven't told anyone other than DH and my very supportive auntie, so you're the first to know, outside the family. Thank you and best wishes to everyone.
 

RedLou

Registered User
Jul 30, 2014
1,162
Amy - just wanted to send you a virtual hug. The deterioration never loses its power to shock and depress.
Slugsta - I think Amy's suggestions about a paper trail make a lot of sense. I do remember reading my father's care notes whenever I went out to see him, and they never told me much. I think they are designed to tick a box but not to be too informative -- one of the things that struck me from the whole experience was how today's litigious society had impacted on the way care is delivered (out there anywhere.) So the carers are as concerned about an over-emotional relative suing them as anything else. One tried to encourage her car-ee to exercise and was accused of bullying, so the edict went out that they were to stop, and one tried to stop her car-ee from falling and was accused of bruising caree's arm in the process, so they were then all told not to intervene in such cases. The doctor told me all this explaining why someone without family in the same country could not continue to live independently at a (relatively) early stage. Anyway, I transgress.
Spamar - glad to read about your concerts.
Ann - hoping you are feeling less discombobulated by events today.
 

Spamar

Registered User
Oct 5, 2013
7,067
Suffolk
Red, so good to see you!
Amy, I, well we, feel privileged that you think so much of us by sharing you news.

Must go and dress!
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
RedLou and Spamar, nice to see you, and thank you both. As usual, RedLou has pithily hit the nail on the head. Shocked and depressed is exactly right. Thank you.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
Afternoon all,

Late in today, but I had a ruck of stuff that I had to sort this morning so I decided to be good and get the 'jobs' out of the way before I caught up with TP. And I've also heard from my new employers - I'm off to Bridgend on the 12th of this month, for induction and to meet my 'team' . I feel so much happier and settled now I have some definite info - I'll be able to get all the other details I want to know on this induction, no doubt :)

How annoying (and silly) for the bank to cancel your Mum's card before the card for you arrived, Slugsta. Common sense is in such short supply with some organisations. Glad the meal was sorted OK on Monday and I hope that there are no further problems on that front. Mil had some meds that had to be taken after food, so if any of your Mums meds are like that, the missing meals becomes even more of a worry :( It never occured to me to look up if orlanzepine could specifically cause issues with Mils diabetes, at the time it was prescribed :( With most of the meds, I did tend to do a brief check, but I often found that I was faced with realms of medical terms and would end up spending hours going from one link to another, trying to work out what (if anything) there was that might cause concern. So I kept it to brief checks - stupidly, I thought if there were any 'big' problems likely to arise, the consultant would warn me - but then, wouldn't most of us? As you say, you would expect something like that to be at least discused with NoK!

Nice to 'see' you, Red :) Yep, a 'too-late' validation. Annoyed me that throughout the meeting, a lot of the comments I made weren't really acknowledged - like when I pointed out that no, LBD wasn't just 'mentioned' as a possibility, we were given it as a definite diagnosis. The Consultant merely nodded and then carried on with what he was saying, without any comment in response. As you say, I was left with the impression that the lack of explanations, acknowledgement and apologies were a simply a way to avoid any definite admittance of mistakes.

{{{{{{{{hugs}}}}}}}}} Amy - it really doesn't matter that you think you have prepared yourself for things to deteriorate. When you actually have to face it happening, when you suddenly see that things have got worse, its still a shock and a complete body blow. Its not the same thing, I know, but when Mil's CPN told me that Mil had now got 'too difficult' for her first day care unit to cope with, and she would have to go to secure unit, it did knock me for six. And after I visited the place I felt worse - the staff seemed lovely, but the patients there seemed so much more impaired than Mil was at that stage (to me) and I just couldn't see her feeling anything but uncomfortable there. Then I saw Mil actually in situ - and it hit me that she wasn't out of place there at all - she was just as far down the road as a lot of the others. I had just been oblivious to it, perhaps in denial, and so that was another big, sad, depressing shock. I really hope that Miss T's family will agree to her moving too - I think (hope) that might make you feel a little easier (if not better), and it will help your Mum too xxxx

Obviously the latest with Mil has been on my mind, but I'm feeling sort of OK. I have decided that I can do nothing about whats gone on - and even if I could, at the moment I have neither the time nor the energy to pursue it - plus, what will it change? So I'm trying to concentrate on positives. Firstly, that if this new consultant is as reluctant as he says to over-medicate, at least we can be sure that the likliehood of Mil encountering dreadful side effects has been minimised. The last thing we would want, or she would need, is for her to suffer pain or misery as a result of some existing medical condition being made worse, or a new illness developing as a result of messed up medication. And secondly, that we now don't have the worry that the recommended placement for Mil won't be able to cope with her and that at some point in the future, we might have to face moving her, perhaps with no time to find the best place. Whatever the diagnosis, both OH and I have talked and being honest, much as we wanted her to go to the home where she went to DC, both of us were becoming more and more concerned that it wasn't right for Mil. Now we know that wherever we find, it will be somewhere where she can settle, without the threat (please God) of more upheaval - and that has to be best for her.

One thing I forgot to ask was about the impact of resperidone on incontinence - I did mean to, but it wasn't until I opened the bag of laundry they gave me, once I got home, and I was once again bowled over by the smell, that I remembered :rolleyes: Mind you - not sure that the wet laundry was all down to Mil. Everything got bundled into the washing machine without me checking it, because it was all mixed together and all soaked and smelly - it was only when I took the washing out of the machine that I found a nightie and two pairs of knickers which most definitely are not Mils, mixed in with her clothes. Oh well - perhaps they belong to the person who owns the rather fetching pair of sandals Mil was wearing yesterday - because they are not her's either! All Mils clothes and shoes are marked with her name - how can it be so hard to make sure that she wears her own bloody things? I havent visited today - will go tomorrow with her (and the mystery persons) clean washing. OH has been asked to work OT at the weekend, so I'm not sure if he will get to see her - if he doesn't get there on Sat, I'll go again on Sunday.

Hope you are all having a good day - Grace, if you are having/ have had your op, wishing you a swift and easy recovery, hun xxxxx
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Ann, I know it's not funny about clothes going missing, but the phrase "rather fetching pair of sandals MIL was wearing yesterday" made me laugh out loud. Thank you!

I do think the clothing is a mystery. When my mother was sectioned in hospital, I would often turn up and find her wearing someone else's clothes. I don't know if the patients were taking things from each other's rooms, or swapping them on purpose, and there weren't many who were female, mobile, and the correct size anyway.

The current care home doesn't seem to lose many things, other than towels (she always has someone else's towels!), although I'm not convinced my mother is parting with any of her clothing for the laundry. I think she takes the dirty laundry back out of the laundry basket, and wears it again. I also think she is having some continence problems, and hiding or throwing away the soiled knickers. Just more reasons that the extra care is needed and will, I hope, be a good thing.

Ann, I appreciate the story about visiting a place and finding the residents more impaired than how you thought MIL was. I have been thinking for some time that my mother is more impaired than my husband and I think she is. I am not sure she knows who we are at times. I think when we see her, she is often in "hostess mode," as when I observe her when she doesn't know I am there, she has a very different affect indeed. And sometimes when we take her out, I will catch out a very blank look on her face--I think she can no longer follow a conversation. She puts up such a good front, though, that it is difficult for me to really assess the situation.

So while I am not sure what I will find in the memory unit tomorrow, I am trying to brace myself for a shock. All your kind words and good wishes are very much appreciated.

And before I forget, Ann, well done you for trying to focus less on what has happened and more on what's next with MIL. If it were as easy to do as it is to say, I, for one, wouldn't be here, so I don't mean that lightly.

I'm also glad to hear that you have some definitive dates for the new job. I don't know about you, but I hate not knowing!
 

arielsmelody

Registered User
Jul 16, 2015
516
Hi Ann - it's hard to credit that it has taken so long for the doctors to recognise all the things you've been trying to tell them, but I hope for all your family's sake that they are finally seeing your MIL's problems more clearly.

I was surprised that they are sending soiled clothes back as regular laundry - when I've had family members in hospital, they sent dirty clothes back in a plastic bag with a special tie that dissolves, so you could put the sealed bag into the washing machine for it to open during the wash cycle. Couldn't they do that for you? Surely there's a potential health risk if you are handling dirty clothes that have been sitting around for several days.
 

RedLou

Registered User
Jul 30, 2014
1,162
Popped in quickly -- and very quickly want to say I'm so proud, if that's the right word, of all of you as I read the latest posts -- Ann with your positive attitude, Amy always so resilient, Spamar making the most of the moment, Slugsta calmly getting on with it all, JM, too -- too many to mention -- please all of you always remember you are brilliant, intelligent, kind women. :)
& if you don't I'll come and hit you with a stick! ;)
 

Ann Mac

Registered User
Oct 17, 2013
3,693
Glad I made you laugh, Amy :D I don't understand the clothes situation, tbh - they can't get into each others rooms, because the doors can only be opened, with a pass from the outside - so I have no idea where these 'other clothes' come from, other than it must be staff putting them into Mils collection - though as I do all her washing (so its not as though they can accidentally find their way into her room from the patients laundry that they do do), and as all her stuff is labelled, it still doesn't make sense.

Its a constant sort of guessing game, trying to work out if you are right about whether a loved one really is declining or is perhaps not as bad others may think they are, hun. Yesterday was a reversal almost of the situation with Mil changing day centres. Then I didn't think she was as bad as she turned out to be - this time, both OH and I were thinking that she probably far worse than what an EMI home could cope with. The hostess mode is dreadfully misleading, though, I agree - as time has gone on, Mil is less effective at playing the hostess, but even now she can still come across so well that its easy to assume that she is following what you are saying, that she understands. The almost day to day variation in abilities can also leave you confused - occasionally, Mil will read a short headline from a newspaper (they are delivered to the ward daily) - at other times she will tell me that she 'needs her glasses' to read it - and I know that its one of those days when the ability to read has switched off for her.

At the moment, I am making myself focus on moving forward instead of looking back - the wee pills the GP gave me have yet to kick in, and I know if I dont concentrate on that, instead of the anger and frustration of yesterday, I will end up wallowing and miserable.

Good luck with the visit to the memory unit - I hope that you leave there feeling reassured that it is the right time for your Mum to move there, and that she will settle xxx

Arielsmelody (such a pretty username :) ) mostly, the soiled stuff is in a separate (but not sealed) bag, within the main bag of laundry. Its just every now and again that the wet/soiled stuff is just dumped in the same bag as the rest. I like the sound of the machine washable bag for the soiled stuff, though - they don't supply them at the hospital, but you can, I would imagine, buy them, online if not in the shops. It might be worth me getting a couple and asking the staff to separate soiled stuff into it - particularly if they are including other peoples' washing in the mix! Thank you xxx
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
I don't know that feeling as though I've been run over by a truck/lorry counts as resilient, but I appreciate the vote of confidence, RedLou! (I don't mind the first time it knocks me down, it's the part where it reverses and repeats, that gets to me.)

Arielsmelody, I think that's a brilliant suggestion regarding the laundry. I'm filing that one for future reference.
 

Spamar

Registered User
Oct 5, 2013
7,067
Suffolk
Red, these days I'm in bumbling mode! Toss in the odd comment here and there. But thank you for kind comment!
Chest still sore after dust reaction on Tuesday, and eyes bad ( still feel like they're rolling in sand!). Just relieved I only had to drive about 2 miles today!
 

Slugsta

Registered User
Aug 25, 2015
2,761
South coast of England
Evening all,

I read back some hours but didn't get round to posting - so please forgive me for forgetting things that have been said :eek:

(((Amy))) I'm sorry to hear about your mum. It can be easy to bury our heads in the sand and pretend that things are not really so bad - then something like this comes along and reality smacks us in the face! :( I hope your mum's friend is able to move at the same time, it might give your mum a sense of security to have someone she recognises nearby.

Red, it's good to see you again, thanks for your input.

(((Ann))), it's difficult to know when tears would be healing or would make things worse. I know you are a very strong person, but that doesn't mean that you can't cry sometimes, nor that you don't deserve to look after yourself.

I looked up 'respiradone' and incontinence and it seems that the connection is known. Although it is a while since I practiced, I should still be able to explain medical terms for you if ever you are stuck.

I think I'm going to get a notebook to keep alongside the carers' folder. Nothing loose-leaf, I want something that would be difficult to tamper with so that I can keep a record.

In the post today was a letter from the bank - telling me that the new card for Mum's account should arrive within 10-14 days :rolleyes: So we will have to pay for her shopping tomorrow, and possibly next week too. It's not the end of the world, but the bank weren't to know that!

It's been quite a bit cooler here today, although still bright and dry. Definitely darker in the mornings and evenings, it's feeling much more autumnal now. Hope we all have a few more decent days yet though.