• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

So bizarre !

Ann Mac

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

I don't get the washing issues, either, Lady A. They have, as I think I've said before, a small laundry room on the ward, and as far as I can make out, that is for washing patients clothes - sheets, towels, etc, all go to the hospitals main laundry. I thought that there was less chance of Mils things going missing if I washed them - they give families that option when the pwd is first admitted - and simply because I can see for myself that the staff are usually pretty busy and I would imagine that washing clothes is a chore that they can do without. Plus, Mil also has some pretty clothes that I was a little worried might get the old 'boil wash' treatment in error. With me opting to sort her laundry, as I understand it, Mils' dirty clothes should go into one of the carrier-type bags that are provided by the hospital, then be stored in the laundry room till I collect them. Quite where this system can go wrong is a puzzle. I ask for her laundry virtually every visit, but it always seems to work out that I take in far more than I bring home. And I've gone in to find her wearing the same stained and sweaty top 2 or 3 days running, I've found her 'bra-less' on a couple of occasions - and even on one occasion, her wearing a PJ top with her day clothes! It just annoys me because there is no need for it. Put the soiled clothes in a bag, hand them to me, I'll return them cleaned and ironed - it doesn't require a lot of effort, surely! With the 'mega-load' I brought home the other day, I have 2 pairs of her trousers here (she started with about 14 - 15 pairs!), both her 'light' dressing gowns, 4 bra's (she started with about 18), 2 nighties (she has about 8), 1 pair of 'light' PJ's (she has about 5- I haven't sent in the 3 or 4 warmer, winter sets), 2 cardi's (she has about 5) - the only thing I have quite a few of are her tops, and that's only because she quite literally had dozens and dozens of tops to start with. Even so, I reckon there must be 12 or 14 of them, at the hospital :(

Sorry you missed out on the airshow, Slugsta - but as you say, better that than risking a life.

A quiet day yesterday - which was really nice, actually! - and maybe a run out to the coast today, after visiting Mil later this morning. Weather is so unsettled though, that I'm not banking on the coast trip - according to the BBC is dry and cloudy here at the moment - in reality, its chucking it down!

Have a good day, everyone xxx
 

Ann Mac

Registered User
Oct 17, 2013
3,693
Can't believe I forgot to say this - I think I've solved the mystery of the 'gunmen', who upset Mil so much!

I had always assumed it was sparked by a TV programme or perhaps a news report - but, much to my amazement, it turns out that this delusion could actually be based on a real life event that she experienced!

Mils friend Shirl rang yesterday, to see how she was, and I told her about the last visit, where Mil was so upset about these blooming 'gunmen' again - and out of the blue, Shirl announced that she knew where that notion had come from. Apparently, about 6 years or so ago, a gentleman in the flats at the end of Mils street had had some sort of breakdown and had been seen, in the wee small hours, waving a gun around! The police arrived and there were apparently armed officers in the street, Mil had been woken by the commotion, looked out the window, and phoned Shirl, in hysterics. Shirl had opened a window, spoken to an officer outside the house and explained about Mil - and the officer had escorted Mil to Shirls house (two doors away) under armed guard. Poor Mil was apparently terrified, convinced they were all going to be shot.

I had never, ever heard this tale before, had no idea that this had happened - though it wasn't surprising that Mil hadn't thought to mention it (and even if she had, I doubt we would have believed it, TBH - by that time, we were already hearing so many strange confabulations that the chances are we would have listened and sympathised but privately dismissed it as invention). If there was any mention of it in the local news, we must have missed it - but now knowing that this event happened, it surely must be the foundation of this awful recurring delusion for Mil, mustn't it?

It just goes to show that you can never assume, can you?
 

canary

Registered User
Feb 25, 2014
12,196
South coast
Wow Ann it really does go to show. I had always wondered whether it came from something she had witnessed in Ireland during the troubles (I had a friend who lived in Belfast in the 70s and she had seen gunmen on the street several times), but this would certainly make sense.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
I'm getting caught up here, but wanted to say to Ann that I was relieved to hear the GP was kind and understanding and I'm so glad you went. I can understand your reluctance about the medication but perhaps it will provide some relief. I like my doctor well enough but yours sounds excellent!

Everything else I was going to say, has gone clean out of my head. I'll go review the thread, and come back and try again.

Editing to say: oh my goodness, Ann, the gunmen WERE real. I agree that this is likely the foundation for her delusion. I do think if she sees something on the television it could trigger it (far too many photos these days of people with guns and armed police and soldiers) but now you know. The question is, is there anything about this information, that can help with calming her? I fear the answer is "no," but it's worth asking.

I wish I could explain the laundry situation for MIL, Ann. I cannot understand it at all. Come to think of it, I wish I knew how the laundry worked at my mother's care home. Why must we all suffer so much, over washing?

Slugsta, I do hope a care package has been sorted and that your meeting went well. Please do let us know.

Is it safe to assume that your "acqugym" is the same as my "water aerobics" class? Exercises done in the pool? Or do you do proper swimming?

Greetings and best wishes to everyone!
 
Last edited:

Slugsta

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

Ann, I'm glad that you seem to have got to the bottom of the gunman delusion. As Amy says, it won't change anything but at least you won't continue wondering where it came from!

There must be quite a lot of money involved due to the missing clothes. I know that is not the main thing you are worried about, but it is still not acceptable.

I do hope you got decent weather for your run out. It has been warm and dry here all day.

Mum's care visits started today. The first one was due at 7.45 so, although I expected them to be a bit late, I was there at 7.30 just in case. I wanted to let the carer in, show her the door code and have a quick chat before introducing her to Mum. What actually happened was that she arrived at 8.15 when I was in Mum's flat helping her change out of a dirty blouse. Mum had already got up and dressed and had her breakfast. And her meds, all of them, including the ones that should have been taken this evening :(

So I had a quick chat with the carer, showed her where things were and gave her the door codes. She said that the person due to visit this evening was also an assessor and would probably do both things while she was here. Yes please, she said, it would be useful if I was there.

Back I went at 6.30 this evening to find Mum eating her dinner. 'Someone' had done it for her, she said, but she didn't know who it was. Carer arrived just after 7.00 as I was getting ready to leave. She did a bit of paperwork but said that she will be back in the morning to do the assessment. Early,because it is DC day. And yes, I need to be there, so if I can turn up at 7.45 please.

I will be very tetchy if I get there and have to wait 30 minutes again!

Early afternoon hubby and I are going to the bank with a view to getting cards for us to use on Mum's behalf. We were previously told that Mum would no longer be able to use her card if we were given one and we didn't think the time was right. As Mum has not used her card independently for some time, we have now got to the stage where it will be easier for us to have a card that we can legitimately use.

Hope everyone has a peaceful night, followed by a day that runs smoothly.
 

jugglingmum

Registered User
Jan 5, 2014
5,738
Chester
Everything else I was going to say, has gone clean out of my head. I'll go review the thread, and come back and try again.
I know that feeling Amy. sometimes can't remember what I was going to say.

Ann - I'm so glad that GP was understanding, took you seriously, and very supportive. I presume when you are working you will visit MIL alot less, is it worth cutting back now, to give yourself a much needed break so that you can recharge before you start new job. I'm just wondering if visiting her and seeing her so distressed still is bringing you down a bit. I know you keep going to sort washing etc, can you just remove the nice clothes (if you can find them) and let the ward wash her clothes? That would save you work and maybe if things were following their system less stuff will get lost, although I suspect that is wishful thinking. A bit scary where the gun issues have come from, can understand how scared she is/was. Is it worth mentioning to medical staff?

Slugsta - glad care visits have started, can you lock your mum's tablets away? My mums are locked away in her bathroom cabinet with key safe in her kitchen. This way only carers can give them to her. there were some issues when we got my mum taking her tablets regularly as it was like starting some from scratch eg blood pressure ones.

Grace - hope all is going to plan.

Red/Amy and everyone else I've enjoyed reading your updates, will try and read back.

Well life has been hectic, got dau home on wed eve, and took her to Porthmadog on Thur am, she was exhausted and not sure she wanted to go but once she got there she was fine.

The iron tablets have worked wonders for her, in 3 weeks she went from not being well enough for school every day to riding 200 miles in 3 days. She is coming on in leaps and bounds cycling wise and with not being permanently exhausted the non stop teenage strops have subsided massively as well.

Trying to catch up with ironing, bought a stem generator iron yesterday and as old one was fairly worn it is getting there.

so more hol snippets. for the cycling event, we often camp in a farmer's field, 5 campsites this year, with about 4,000 pitches. Fields aren't designed to be driven on when wet, so returning from a day out, in the rain, which was why we hadn't cycled, we sort of skidded to a halt in the middle of field, trying to get to our pitch. We were towed out by a tractor the next day, son was beside himself with excitement. we then had to park up on grass verge next to campsite for rest of week, kids slept in their tents some distance from us, and we made sure all our French neighbours knew in case of issues, although kids had phones in the tent.

Shower queues are always long, I was often about 20th in queue, but with 40 showers, moves quickly. Everyone is showering at same time as get back from rides at same time. Live music on campsite a couple of nights. Whole week cost £85 for campsite and £125 for sign up to cycling event.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
JM, I am SO glad your daughter is responding to the iron pills. DH and I have no children of our own, but lots of nieces and nephews (ten who are actually related, plus children of friends) and I know all too well how teenagers can be. Stroppy doesn't have a real equivalent in American English but I know what it means, and it describes teenage angst perfectly! It's (much) worse when they are tired/ill/hungry so I can image that's a relief for all of you that she is feeling better. I hope she'll be feeling fully recovered before school begins; I think you go back later in the UK than most places in the States (many schools here started last week, others this week, and they will all be in session, all over the States I should think, by no later than the first week of September)?

Your holiday was full of adventures! And £85 for a campsite for the week is surely dirt cheap. (Let me go do the conversion. Yes, dirt cheap, I was right.) Was that for all of you? For that price I'd happily stand in line for the showers!

Slugsta, hope tomorrow goes better with the carer visit and the paperwork and their timing (perhaps especially their timing!). I like JM's suggestion to lock up the meds. My mother regularly over- and under-dosed herself on her prescription and over-the-counter meds and it was a massive source of worry. Also best wishes on getting the bank issue sorted.

I started to write an update, but deleted it, because it didn't seem to say anything. I will try again.

My DH is doing a bit better, just a bit, but a noticeable bit, and that's encouraging. I don't know if it's because things have settled down at work for him, or if he's finally physically recovered from our time with his family, or if he's starting to get some closure on his father's death (he talked to some friends about it quite openly this past weekend, which was a first), or what. Whatever it is, I'm grateful.

I am status quo, which is to say, I still feel physically and emotionally drained to the point where I do not want to do anything and am still slogging through treacle most of the time. I am starting to wonder how long this will last, and if I should go see my doctor, or if this is just still emotional aftermath. Suggestions/comments gratefully received, if you care to offer any, and do allow me to proffer thanks in advance, but please do not feel obligated by any means.

Hello to everyone and hope you're all as well as possible.
 

RedLou

Registered User
Jul 30, 2014
1,162
I am status quo, which is to say, I still feel physically and emotionally drained to the point where I do not want to do anything and am still slogging through treacle most of the time. I am starting to wonder how long this will last, and if I should go see my doctor, or if this is just still emotional aftermath. Suggestions/comments gratefully received, if you care to offer any, and do allow me to proffer thanks in advance, but please do not feel obligated by any means.

Hello to everyone and hope you're all as well as possible.
Amy, what you are describing sounds like depression -- totally amateur diagnosis so take with pinch of salt - but --
depression is supposed to respond to exercise. So if you can bear to start doing something active, in small doses, preferably that you really enjoy or used to enjoy, it might be worth it?
if you go to the doctor, which is doubtless a good idea, and he wants to place you on pills, just make sure he/she has an exit plan to smooth you off them. Ann, meant to ask you about this, too -- also, to say that there are people I've known (think I mentioned the mother who lost her teenaged son at Hillsborough) who found they only got through thanks to pills. She knew when the time was right to come off them -- so it seems one doesn't lose the ability to make a judgement call on them.
JM, so pleased your daughter has responded to the iron boost. Slugsta, argh! Unnecessary stress!! :mad:

Life here good. Making plans to go to New York next year. During the worst of the last few years, it used to upset me that I would never go back there (as I thought.) I love the place having gone quite a lot for work. We were planning our holidays around seeing my siblings next year, but now they have suddenly announced plans to come here this autumn and also my OH said it would be nice if we didn't have to plan our lives round my family for once and I could quite see his point of view! It's not that he's not fond of my siblings - he is - but we spent decades jumping to my parents' wishes, especially my mother's, even before the dementia period. It is quite odd to get used to the fact that we don't actually have to put anyone else first. Indeed, I feel quite strongly about trying to pack in as much as possible for ourselves, while we are fit enough to thoroughly enjoy it. Being both self-employed we rarely took/take long holidays anyway - our last fortnight off before Zambia was in 2003!! I actually think one of the difficult transitions after caring is to allow yourself to be you again. To not feel obliged. To not feel selfish if you look to your own wishes. & I think that is especially hard if you've been made to validate yourself by being a 'good selfless daughter' by a manipulative mother. But I want to have fun and have fun wholeheartedly, in the reckless joy of a moment in my life, partly because if I don't I might become introspective and bitter, if that makes sense.
*hugs to you all* There is light at the end of the tunnel. xx
 
Last edited:

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
RedLou, as always, thank you for your kind comments. I know it sounds like depression, but I've been depressed before, and it doesn't feel like how I've felt in the past. I'm physically tired to a degree I've never before experienced. It's like killer jet lag or recovering from influenza (the nasty kind, where you're sick for weeks). This is not to say it couldn't be depression and there were questions about if I was suffering from that, before my FIL got diagnosed. I haven't been in a while, but I do have a therapist, and I could go and see her. I might also see my OB/GYN; I know she's not my GP, but she knows me better (I've only been seeing the new GP for the past few months) and was amazingly supportive when I saw earlier this year. The exercise suggestion is scarily spot on. I did go to an exercise class last night and have another one tonight. I also have a twice a week general exercise class I faithfully attended for a long time, but haven't been to at all since my mother's hospitalization. I do feel better when I exercise. I would feel better, if I were in better condition. I know what you will tell me to do!

I'm quite pleased to hear about you planning your trip to New York and hope you have much pleasure, not only on the trip, but also with the planning in advance (if you enjoy that sort of thing, as I do). Having been in the position, at various times in my life, of only scheduling holidays around family, I sympathise entirely. I do love New York (to visit) and so can understand you wanting to return. Do you have some favourite places there you plan to visit, if you don't mind me asking?

(And yes, I completely understand about not wanting to turn bitter. My mother chose bitter and resentful, many years ago, and I've seen where that goes--unrelated to the dementia, of course, but still not pleasant.)
 

Slugsta

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

JM, I'm so glad that your daughter is much better. apart from anything else, relief from teenage angst is well worth celebrating!

Red, your holiday plans sound very exciting! It is high time you were able to please yourself, for a change.

I agree with Amy, bitterness and resentment are optional, a state of mind that can be easy to slip into but ultimately corrosive.

Amy, what you are describing does sound like depression but I accept your prior experience with the condition. Talking to someone you trust sounds like a good first step - whether that person be a true friend, a paid therapist or your Ob/gyn. Meanwhile, eat well, rest well, exercise gently and try to laugh every day (((hugs)))

The assessors (2 of them as 1 was training) were parking their car just as I was this morning. The carer arrived shortly afterwards. Mum had already got her porridge - I had to chip the burn stuff off the bowl!

I have ordered a lockable cash-box to put Mum's meds in so that she cannot help herself to them. I have asked the carers to try and help Mum with a shower at least once a week - but more often if she smells! I have also asked if they can try to direct dirty clothes into the washing basket. Mum tends to wear things for a few days, then put on something different. But the dirties don't reach the laundry and she starts the cycle again a few days later :rolleyes:

We (hubby and I) also sorted out the bank this afternoon. Mum's card will be de-activated and I will get one to use. I will probably let Mum keep the old one as I think she will panic without it at the moment.

I'm shattered today, several early starts and broken nights have not helped. I need to leave for choir in about half an hour - if I am going. Or would I rather stay here for a snooze?? :confused:
 

Ann Mac

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

Canary, I had often wondered if the 'gunmen' came from things Mil may have experienced in Ireland, though there was never any mention of anything like that when she had talked about growing up there to me, in the past. I asked OH if he knew about this incident in Mil's street and he actually can remember it, saying he saw something on the news at the time, though he had forgotten all about it till I asked - quite how I managed to avoid knowing about it, I have no idea - its not like where Mil lived was known for having issues like that, so you would think I would have picked up on it!

Amy, yes - our GP is lovely, very down to earth, very straight talking, but very kind and with a lovely manner. Sadly, we are supposed to be losing him - and all the other GP's from the practice - at the end of this year:( Not sure of exactly what happened, but all have declined to renew their contract at the surgery, and so it will be all new GP's - dreading it, he was so fantastic with Mil and is just generally such a good doctor - we've been lucky to have him. The way you describe yourself as feeling is pretty much how I feel. The 'slogging through treacle' - oh yes! And so, so tired - sleeping really badly I know, but even so, the physical tiredness when I don't feel like I'm doing as much as usual is ridiculous. And I can add that I'm getting way too easily frustrated and cross about stupid little things, minor annoyances that I'd previously brush off - the check out girl in the supermarket yesterday was extemely lucky not to get a real mouthful from me, after firstly spending more time chatting to, rather than actually serving, the customer in front of me, despite the long lines at the till - and then she slung my stuff through, quickly and very carelessly, as if to make up for lost time - I'm surprised that the half dozen eggs remained whole! Annoying, yes - but hardly enough to make me as angry as I felt at the time. I really had to bite my tongue, and I swore under my breath all the way back to the car. My lovely GP said he didn't think I was 'depressed' - but he did think that, amongst other things that I'd been dealing with, I was emotionally wrung out from grieving, and that I most definitely was grieving because the Mil I used to know and love has gone, as surely as if she had died. He told me not to under-estimate just how powerful grief can be, particularly when combined with incredibly stressful circumstances - which is a situation you certainly had to deal with when you were trying so hard to support your Fil, Amy. He pointed out that if I'd broken my leg, I'd accept pain relief whilst I recovered physically - the medication he has given me is just similar 'pain relief' whilst I recover emotionally and mentally. I can't say that its made much of a difference yet - he did warn me it would be 2 - 4 weeks till I felt a difference - and there have been some expected side effects (headaches and some feelings of nausea) which are 'normal' and should stop after about 7 - 10 days. But he convinced me to stick with them, saying that it was pointless to struggle though these feelings without help, when help was actually available. So, if your Ob/gyn or therapist is supportive, I would go and see either one and get their take on how you feel, they may be able to reassure you to the point where you are able to approach your GP - I actually felt better, less of a wimp for feeling like this, after I'd been xxx

JM, its great to read that your daughter is so much better with the iron tablets - so pleased for her, and for you, because it must have been such a worry for you. And any lessening of the teenage 'strops' has to be a good thing - maybe I should get some for my girl, as she has been a real 'Kevin' over the last few weeks! Even asking her to put her flipping shoes away brings forth huffs and eye rolls and sighs and moans - you'd swear I'd asked her to scrub the house from top to bottom rather than just pick up a pair of shoes :mad: The holiday sounds eventful - but an awful lot of fun too! And very reasonable! We tend to pay between £20 and £30 a night for up to 4 of us at campsites when we go off in Old Red, which is considerably more than your week cost! I am cutting back on the visits to Mil - I haven't been since Sunday (though I am going today), but I don't think I would be able to avoid stress if I left the washing to the hospital. I know this is my 'problem' and probably not a biggie in the grand scheme, but fairly often we go in and see patients wandering round in their own tops but also wearing these awful PJ bottoms that the hospital supply - from a distance, when I first saw someonw wearing them, they looked like convict trousers! They are awful, baggy and shapeless and often they tend to hang down at the back, revealing the incontinence pants and netties that a lot of the patients I guess have to wear :( I saw one chaps had fallen right down one day, and as a nurse 'hitched' them up, a comment was made about how behind they were with the patients laundry - the frequency with which I see patients wearing these awful things indicates that they must be behind with the laundry on a fairly regular basis! I am not knocking the staff - there are days when they are flat out, and even when its fairly calm there, you don't see the staff hanging round the desk chatting, they are always engageing with the patients, talking to them, doing activities, etc, so I can understand that the laundry isn't exactly at the top of their priorities - but I would just feel dreadful if I walked in and found Mil dressed like that. Its so completely undignified, and just knowing how mortified the 'Old' Mil would have been is enough for me to know that I would be upset if I found her like that.

Red, NY is one of the (many) places I want to visit - its a photographers paradise, I'm told :D I hope you have a fabulous time. And you are right - grab your chances now! One of the first things that we plan to do, once we get ourselves 'straight' and a little more financially stable, is to save for holidays - a week somewhere sunny and restful to start, then save for a 'bigger' trip.

Slugsta, not impressed that you are having to make so many visits to accompany the new carers - in home care sometimes family would be there for the first visit - but not after that, for goodness sake, part of our role was to relieve the strain on families! As for the late arrival - not impressed there either, though I understand how it happens. As far as I am aware, its generally the case that agreements with care agencies tend to have the provision that the carers must arrive within 15 minutes of the agreed call time - however, with few care companies actually allowing for travel time in between visits, its often an impossible goal for the carers :( The only way round it is to get the call listed as 'time critical' - but they generally don't tell people about that! Mil was at one stage, picked up from her first DC by support workers and taken out on activities. They were supposed to collect her at 3pm, but we later found out, after a series of incidents where Mil was behaving dreadfully for her support workers, that actually they weren't turning up until as late as 3.30 - by which time, Mil (who always wanted to leave anyway) had seen everyone else go and was understandably agitated. The manager at that day care also complained and that helped to get Mils call marked as 'time critical' - they had to turn up on time, which meant that the agency couldn't overload the call list, they had to allow time for the carer to get to Mil. If the lateness is causing issues and even risks for your Mum, then getting the call classed as 'time critical' may be the only way to ensure that they arrive within a reasonable time frame - might mean some shouting though, which I am darn sure you can do without :( The lockable cash box is a great idea - we have one we used for Mil (provided by the OT's, at their suggestion!). Mil objected, but as she was helping herself to her meds willy nilly, adamant that she knew what she was doing, and was giving us serious grief for hiding them (to try and keep her safe), it proved to be really useful - we spun her a tale about how it was 'the law' that medication must be 'locked away' and kept safe, which she reluctantly accepted and it saved us a lot of angst. She tried a few times to get into the box, but obviously she could never remember the code - so she would either have to ask (at which time we could point out it was the wrong time for meds) or give up. She did throw it in temper once or twice though - I still have a cracked/chipped tile on my kitchen floor, which was the result of one outburst :rolleyes:

Grace and Spamar and everyone else - hope you are all OK? xxxx

Visited Mil on Sunday, as I said - she was less agitated while we were there, but clear signs that she hadn't had the best of days - sweaty, dishevelled, stained clothes, a little breathless. One staff told us that she had been 'cleaning' all day, insisting it was her job and fretting over 'getting finished on time' (She used to clean in a nursing home, over 20 years ago!). She and 'Little V' (another paitient) had been persuaded to sit and have a drink just before we arrived, and we landed in the middle of a rather bizarre conversation where Little V was insisting that Mil had told her that 'that man over there' (pointing at another paitient, who must be in his late 70's at least) was Mil's son, and Mil was insisting that no he wasn't - he was her brother! Or at least, that semed to be the gist of it - both ladies were mis-hearing each other, which sent the conversation off into all sorts of convoluted directions - however, neither seemed to even notice how jumbled and disjointed the chat was. OH and I more or less sat back and let them get on with it. At one point, a nurse came and checked Mils blood pressure and temperature. As the nurse walked away, Mil turned to us and in a rather sarky tone said "Bless - I think she wants to be a nurse - when she grows up!, which set OH, myself and a couple of nearby nurses off laughing. This was followed by her suddenly asking about my Mum. Now, I've avoided telling her that Mum had died - just didn't see the point and was worried that it might play into Mils agitation. But OH had no such qulams and told her that my Mum had passed away. Mil said she was sorry to hear that, thought for a minute, then rather surprisingly asked me was Mum alone when she died? I told her no, that my step Dad had been at the hospital with her. Another pause, then in a really snipey voice Mil said "Huh - so he actually turned out to have some use in the end then, did he?". I honestly have no idea what that comment was about, but just the tone and the expression on her face struck me as incredibly (and probably inappropriately) funny - and it did OH too - the pair of us just collapsed laughing again. Mil glared and told me that "YOU know what I mean, Ann" - but I honestly don't have a clue. Thankfully, the imminent arrival of lunch meant we could escape with no problems a couple of minutes later - but I do wonder what on earth she had confabulated about my S-dad that made her so scathing!

I should hear in the next few days when I start work - references have all been given, all paperwork done, DBS going through (I've had so many of these done with my past history of care work, that it shouldn't take too long). I'm still really nervous about the prospect, but telling myself that once I start, I'll be fine - so I just want to get going now. At the moment, I have no idea how big the team will be, and though I know what my job is, I don't know exactly what my 'place' is in the team, or even where exactly we will be based - all this will be revealed at the induction, I guess. I'm telling myself that I'll feel better when I know!

Right - once again, I have ironing and housework awaiting, so I'd better get cracking. Have a good day, everyone xxxxx
 

Spamar

Registered User
Oct 5, 2013
7,101
Suffolk
Thanks, Ann.
I shouldn't worry about the tablets, am sure the doc will look after you! I've been there a few times and am still surviving.

Hi JM, Red, Grace, Slugsta and anybody I've forgotten, hope life is treating you as well as life can!

I say that,Ann, then think what a load of rubbish!! Walking awful, though physio going well and he's happy with increased joint movements. Things that didn't hurt now do, things that did hurt still do! Though maybe not quite so much. My mind, well, all of a scramble, the only way to describe it. Can't concentrate on anything. Headachy, hate the hot weather, and it is hot here. Breathing awful, exercise as little as walking from bedroom to en suite, makes me gasp! I can sleep for England even this weather. Must be the only one in this weather! I even lay on the bed yesterday pm and slept. It's such a struggle.

CW ( cousins wife, the one I went to NZ with) thinks I ought to go to doc, but I can't really be bothered. I know it'll take at least 2 weeks for appt, and hopefully at least the weather will have broken by then!

Sorry for the moan, just shattered, and I really ought to go shopping. Last weekend stepdau, her OH and her mil came for the day. I coped by raiding the supermarket for salad stuff, and made a trifle. Fortunately she takes over coffee and tea making duties! This weekend her brother is coming, with wife and 2children. I'm going to a concert at 16:00, so they will have to be away early!

Usually when kids come we go out for a meal, but it's heaving around here at the moment! ( holiday area).
 

Ann Mac

Registered User
Oct 17, 2013
3,693
Hi Spamar - I'm so sorry that you are feeling so under-par at the moment. Is it just the weather? Or is it still trying to recover from the caring and the grief, combined with the pain? I love the heat, but I must admit that I am soooooo glad that we fitted a ceiling fan in our bedroom - we put one in when we first moved in, over 20 years ago, and it was so useful when we got the odd really hot spells that when it finally broke, we got another. I think my sleep would have been even worse without it on several recent nights! Its a Godsend for OH who has to try and sleep during the day, too - yesterday, it hit 28 degree's here, without the fan (and the blackout blind) I doubt if he would have got any rest at all. Its awful that you have to wait up to 2 weeks for a GP appointment - its another area where we are really lucky - the longest I've been asked to wait is 5 days, and I admit, I wasn't impressed with that! Usually its no more than 2 days, and often, you can see the GP the same day. Mil was always, always seen on the day I rang - with the GP usually insisting on coming out to her, as he knew how agitated she got over appointments. Unless you are certain that its just the weather, I would try for an appointment anyway - better to make sure xxxxx

I've actually managed to get downstairs done 'properly' - as in generally tidied, kitchen and downstairs loo cleaned, floors hoovered and mopped and dusting done. The last load of washing is in - oldest is planning on coming down this weekend, so I've put her bedding through - and the only thing left is the ironing (which I'll tackle after I go to see Mil in just over an hour). Its a while since I've accomplished so much in one morning, so maybe things are on the up. If I can power throgh the ironing, maybe I'll be able to stir myself to get through my backlog of editing - not paid editing, as in a wedding, but just shots from the last two trips in Old Red and to the Zoo - I usually love getting stuck into them, but I haven't been able to summon up the interest lately. I have a load of on-line photoshop tutorials I've been trying to work through, and I did actually manage to complete 2 of them yesterday, though - first time in months I've even looked at the, so that's an improvement too.
 

Spamar

Registered User
Oct 5, 2013
7,101
Suffolk
Thanks, Ann. I can sleep OK, often in the day as well at the moment! Housework?. Well I don't know what I'd do without cleaner and gardener!!
It's about 26 here. I should be in Cornwall, 16 there!! ( not that I would choose to go in August!)
 

Slugsta

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

(((Ann))) I do you think that you are bone tired, on top of all the emotional stuff. I do hope that you don't pay for today's extra activity by being even more exhausted afterwards!

It's natural to feel nervous before starting a new job, especially when you have been out of the job market for a while. I am absolutely sure that you will be find once you get there. Mind you, I would find it very hard to cope with all the uncertainty. Are you sure you won't be working for MI5 (in which case, you would have to kill me if you told me :D )??

(((Spamar))) I'm sorry that you are feeling so low. I hope it does improve when the temperature drops a bit - if not, it might be worth seeing your doc, as your CW suggested?

Mum's carer turned up in good time yesterday, so I hope the problem was simply down to new people not knowing the way. I do understand the problem with them not being given enough time between visits - my TM works as a carer, although he is now seeing just one client on a private basis. I've left a note asking them if they will cut Mum's fingernails, there's not much else for them to do at the moment. It seems that Mum is enjoying their company though, so that's a good start! I will bear in mind your comment about the 'time critical' visits though Ann, especially on DC days.

We took Mum out, as usual, this morning but she spent much of the time mithering about not being able to find her bank card. We found it when we got her home, it was in the pocket of the mac she wore on Friday. It made me feel that I would be doing the right thing by letting her keep the card when mine arrives. She doesn't ever need to know that hers won't work!

Mum has 8 pairs of shoes lined up in her bedroom. I decided to put the heavier ones away and leave her with a choice of some more appropriate for the weather. When I put the others away I found 12 more pairs in the wardrobe! This from someone who has no interest in clothes or fashion, she certainly hasn't been buying things just because they are 'in' this season :rolleyes: I think it shows that she might have been having some kind of problem for more years than I realised :(
 

Ann Mac

Registered User
Oct 17, 2013
3,693
Hi everyone,

It wasn't as hot here yesterday, Spamar - we were down to 22 - but it is muggy, rather than sunny, which isn't as pleasant. A couple of times yesterday, late afternoon, it went quite dark and I thought we might be in for a downpour, but the clouds blew over.

Slugsta, it seems to me that an awful lot of carers, once their loved one is diagnosed and they are well on the journey, can look back and suddenly realise that actually there were signs there and things going on, that pre-date not only the diagnosis, but that even pre-date the point at which the carer starts to notice that their loved one is having problems that might be some form of dementia. I can now look back and realise that the personality changes that we put down to depression in Mil, going back 3 or 4 years before we started to worry about her memory and got a diagnosis, were more than likely actually the early signs of this illness - we just didn't realise at the time. Or like you with your Mum's shoes, its that some 'evidence' suddenly comes to light that indicates that the issues have been going on for a lot longer than the carer or family member had realised. This awful disease and its many varients can manifest, right from the very early stages, in such a strange and diverse number of ways, that its incredibly hard to spot - and the fact that the general information out there is so limited and often 'whitewashed' doesn't help.

Glad the timing issue with the carers has improved - I hope you are now able to let them get on with it, and not having to be there for any more visits? Its good that your Mum is at least enjoying the company - thinking back to how Mil resented the home carers, and difficult it made it for them to help her, that's a real blessing - long may it continue!

I now have a start date for my job - 12th of September. But I'm still not sure of a lot of other details. Its nearly 3 weeks away, so I'm sure that everything will be made clear by then (I hope - stressing slightly over it, not good at not knowing!). The specific part of the organisation that I'll be working for has branches across the UK, but its a new venture in this particular area, so I'm guessing that 'things' are still being put in place. I'll just have to hold my impatience to get started and wait, lol!

I visited Mil yesterday, just after lunch. She was a lot more chilled than the previous two visits, greeted me warmly - but for once, she didn't ask at all after OH, or mention the kids names. Nor did she mention 'home' or 'guns', thankfully. I found myself wondering where she thinks she is, from some of the comments she did make - there was a remark about how the 'council look after the gardens here - they do it for all the houses', and then a brief mention of 'staying in the landlady's good books', followed by 'We can go to bed in the afternoon here if we want, 'they' don't mind - but I only do it on Sunday's'. Whatever she thought, for once she seemed quite content in the moment, and it was nice to see. Once again, I actually got a big bag of washing - but once again, heavily soaked (and soiled) nightwear was mixed in with her every day clothes, and the smell on opening it was eye-wateringly bad. I need to ask what's going on, if they are using pull ups at night for her - or if she has started to take them off again. At home, as long as the pull ups stayed on, they stopped the soaked nighties and pjs - yesterday, 3 of the nighties I sent in clean on Sunday, were returned, absolutely dripping.

A couple of hours after I got home, I got a phone call from the 'junior consultant' at the hospital. Just to let me know, he said, that there were more changes to Mils meds. After taking the memantine off her, then re-introducing it, it was now being taken away again. The orlanzapine - which I had been told she would stay on, as it can be used as a 'mild anti-depressant' - is also being stopped. And she is now on 1mg of resperidone, as a prn. I pointed out (again) that resperidone had been stopped when her diagnosis was changed to LBD - and was told that the new consultant (who we have yet to meet!) has decided that Mil doesn't have LBD. Or VasD. She now has just AZ. My response was 'Oh for Gods sake!', to which 'junior' responded with 'You know, different Consultants have different opinions, and Dr M's opinion is that it isn't LBD' I pointed out that since dementia was identified, Mils diagnosis had gone from AZ, to mixed vas D and AZ, to LBD, and now back to AZ and was then told, as though it was no big deal, that with 'different consultants involved, that's what happens'. As though that was quite the norm and completely acceptable. And I know that its often felt that putting a label on the type of dementia doesn't particularly help in the long run, but when constant changes in diagnosis bring about the constant changes in medication that poor Mil has been through in the last 12 - 14 months, its a whole different ball game. There is - as far as I can see - no more reason to suppose that this consultants opinion is right, any more than there was for the opinions of the previous 4 or 5 locum consultants' to be right. If this guy is wrong, and the respiredone continues to be increased, then her mobility, her behaviour and the incontinence may well worsen. If he's right, then the deterioration in Mils behaviour might have been contributed to by the previous medication changes. The poor woman can't win - and whatever type of dementia she has, I can't believe that the continually changing opinions and treatment are in any way helping her - and worry that they may actually be causing her more misery :( I've been asked to attend a meeting, next Wednesday (to finally 'meet' this new Dr M) and so they can 'explain' and 'discus'. OH will be in the middle of a run of 4 night shifts at that point, so it will be an issue for him to attend - and we haven't seen Mils 'allocated advocate' since way back when she was first admitted. I think I'll give the CPN a ring and ask if I can have a chat with her, because this business of not one of the so-called medically qualified specialists being able to agree on a diagnosis, let alone the right medication, is just not acceptable to me, at all :(

Taking youngest to collect the first of her GCSE results today - she is very unsure about how she has done, swinging from confident to despondent at the drop of a hat. I know she tried her best, so whatever the result, I'll be proud of her :)

Hope you all have a good day xxxxx
 

Spamar

Registered User
Oct 5, 2013
7,101
Suffolk
Just a quickie, weather cooler here today, thank goodness!
Step grand dau 1, 2 As, 2 Bs, 5 Cs. Step grand dau 2, 5 A*, 2 A, 5 B. All parents very pleased, they did as well as expected,and it's enough for whatever A levels they want to do. Good day all round!
 

jugglingmum

Registered User
Jan 5, 2014
5,738
Chester
Well done Spamar step grandchildren, and Ann hope your dau did OK in hers. No early taking of exams at daus school, although a friend has posted her dau of the same age did some early.
 

Slugsta

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

Well done to Spamar's stepgrands! :)

Ann, I hope that daughter's results reflect her intelligence, knowledge and work.

It must be terribly hard when successive consultants change MIL's diagnosis and management. I know that reflects the fact that psychiatry is not an exact science but it certainly has not been helpful in MIL's case. I do hope that this change of medication brings only positive results.

I would get very 'hot under the collar' with being told that I am expected to attend a meeting that has been arranged without any consultation or respect for my own life and schedule :mad: However, I hope that the meeting, whenever it does happen, is productive.

I have not been in to Mum when the carers are due in since Tuesday morning (when I was asked to go in for the assessment). I am finding it hard, not knowing how things are going. I will have a read of the carer's notes when I am there tomorrow, I hope they are detailed enough for me to get a good idea of how things are going. I know I have to back off and let them get on with things - otherwise there would be no point in pushing so hard for their input!

It's a quiet day for me as TM has to work. He's taking me out for a birthday lunch tomorrow instead :) Still very warm here but also quite humid today. I'm not even going to get dressed until I am preparing to go out this evening :eek:
 

Ann Mac

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

A huge well done to the S-grandkids, Spamar - they are great results :) Dau only had 3 early results to come back (her final GCSE year is next year) and though she passed all 3, in the case of 2 it was 'only just passed' and she was gutted. However, she can pull both those grades up with either module work or with a second set of exams next year (though she intends to take the first chemistry exam, in her science set again, she tells me - it was only the chemistry mark pulled her down there), and so it could be worse. I know she tried hard, and will try even harder now, and as I told her - she did pass, and she needs to think of it as these exams are just a stepping stone to the next stage.

Happy Birthday Slugsta :D (I presume its today, from your post). I hope you have a really lovely day xxx I think you are right in saying that unless you back off, there is no point in having the care package, so fingers crossed that its going well.

I phoned the CPN yesterday - the info about Mils diagnosis change was news to her, which I don't think she was happy with because as she explained, she either phones the ward or visits Mil every week, and it hadn't been mentioned to her. News to me was that she had been told that there would be no more visits to DC for Mil, as prep for her moving in, because at the moment even if a place becomes available, they are not prepared to take her whilst managing her behaviour is being done by using prn meds - again, that stumbling block of EMI homes cannot give prn medication :( That little nugget hadn't been passed on to me or OH, so obviously, I'm not happy, either. I have wondered - several times - if the decision that EMI care is the right place for Mil is correct, and I think I mentioned that a few of the staff there have said that they have their doubts too, with one or two going so far as to state quite firmly that they believe she needs an EMI nursing placement. Again, call me cynical, but I'm wondering if the claim that EMI will be adequate is more to do with saving costs (EMI nursing is so much more expensive) than with providing the best place for Mil? Or is that just my bad mind?

On the CPN's advice, I phoned the new consultants secretary, explained my concerns and asked for an urgent meeting with the new consultant. The best she could do (as he had just returned from AL, she told me, and was extremely busy) was a promise to ask him to call me. Didn't happen yesterday, we'll see if it happens today.

Meanwhile, I went to visit Mil, taking in all her washed and ironed clothes as I won't be visiting now till Sunday (with oldest coming home). I also took in another pack of pull ups - in amongst her washing, I've come across 'netties', which suggests that they are using pads for Mil. That would posibly explain why all of a sudden I'm getting so many urine soaked and soiled sets of nightwear home to wash - she has always removed pads when I tried them in the past, and I presume thats still the case now. (I'm also wondering if the re-introduction of resperidone has had an impact - day time accidents and bowel incontinence actually improved once the resperidone was stopped). In any case, I was very tactful and handed the pull ups over, explaining (again) that she always removed pads and that I guessed that they might have run out of pull ups on the ward (I'd been told not to supply them for MIl, as the hospital has its own supply!) and I though if I brought them in, Mil would stay dryer and there would be less chance of infection, plus I hoped it would save them the job of having to strip a wet bed every morning. I told them that Mil still had several packs at our house, so if they ran out, I could always bring some in.

Mil was reasonably calm, she actually asked about OH - but it was a case of 'I don't suppose you've seen my S***, have you?. Became clear pretty quickly that she had me pegged as a workmate/friend, and when I gently tried to remind her that I was her daughter in law, she looked at me like I was talking a foreign language and told me she didn't understand - so I just changed the subject and went along with her. I noticed pretty quickly that her chest sounded 'off', so after about 30 minutes, I spoke to the ward manager, saying I was worried she was heading for a chest infection - I was told 'well done' for noticing ( :rolleyes: ) and assured that they had spotted it and she had been on the nebuliser to try and prevent infection. I then asked about the new diagnosis, and about DC, and the likelihood now of Mil getting a residential place there because of the prn meds? There was a bit of chat, he said that he could understand my concerns about the new diagnosis and the medication changes, but his main response was to start looking up the nearest EMI nursing placements - which I guess tells me a lot! There are hardly any in the area, and the waiting list for those beds is extremely long, he told me - he said that there were a few more places in a couple of neighbouring counties, and he would get me a list - I asked him to also include the Chester area, which might be in England, but is also very close. I guess I am going to have to pin down this new consultant and try and see if there is a reasonable chance of an EMI unit being the right place for her, and if not, get him to change the recommendation to EMI nursing, irrespective of any increased cost! I just don't see the point of getting her settled in an EMI home, even if its our home of choice, if there is a good chance that they won't be able to manage her and we end up having to move her yet again - and if that has to be done in a hurry, then choice is again limited.

Paperwork for the new job has arrived - contract, and a mass of other stuff, so that's first on the agenda today. Followed by shopping, and general tidying up, then oldest arriving for the weekend this evening.

Hope you all have a good day xxxx