1. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    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.
     
  2. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    #5962 RedLou, Aug 23, 2016
    Last edited: Aug 23, 2016
    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
     
  3. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    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.)
     
  4. Slugsta

    Slugsta Registered User

    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:
     
  5. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    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
     
  6. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,952
    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).
     
  7. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    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.
     
  8. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,952
    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!)
     
  9. Slugsta

    Slugsta Registered User

    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 :(
     
  10. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    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
     
  11. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,952
    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!
     
  12. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,069
    Female
    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.
     
  13. Slugsta

    Slugsta Registered User

    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:
     
  14. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    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
     
  15. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,952
    Suffolk
    Belated Happy Birthday, Slugsta, hope you enjoy your lunch today!

    Hope you have a good weekend, Ann. I've also got step son and family coming tomorrow, but I'm meant to be going to concert at 16:00! Hope they come early! It's lovely to see them, but it's such an effort these days, even buying everything from the supermarket! I fear today is not going to be a good day, it's very hot here already, and I'm quite breathless, even though all I've done is get and eat some cereal!

    Have a good day, everybody!
     
  16. Slugsta

    Slugsta Registered User

    Evening all,

    (((Spamar))) I do hope that today turns out better than you feared - and that you enjoy the concert tomorrow.

    Ann, I'm sorry that your daughter is not terribly happy with her results. However, as you say, this is not the end of the world and should be looked on as a wake-up call more than anything else.

    I left the carers a note asking them to cut Mum's fingernails. The note and clippers are gone - but the long nails are not! Nor is there any mention of nail cutting (or the request) in the care notes. I'm not sure whether this is something they are allowed to do, or not? The folder was not available when the first carer visited on Monday morning, so she wrote on the back of the letter giving the rota for the week. I added a note underneath in the evening - and was told I must not write in the care notes but leave messages on bits of paper for them. I pointed out that this was Mum's letter I had written on and asked whether there was not a section in the folder for our comments? I'm not keen on messages on bits of paper - there is no audit trail if it is needed later! I guess this is all part of the settling in process and hope things will improve as we all learn to trust each other.

    We took Mum shopping, as usual, this morning but did not go for a coffee afterwards. Unfortunately Mum was very wet, really didn't want her sitting around like that. When we got her back and stripped off, I had to be quite dogmatic in order for her to wash herself down (a shower was flatly refused!). "I've had a wash" she kept saying. I finally pointed out that she would become a smelly old lady if she didn't wash after an accident :( It appears it might be time for me to carry some spare knicks, trousers etc with me - didn't think I would have to do that again after my son was toilet trained! The bed was also wet, right down to the mattress. Good job it was a 'good drying day', things are ready to go back when we visit tomorrow. I've ordered a couple of mattress protectors for her and have put a 'puppy pad' under the bottom sheet - I bought some when Sky was first with us and having toilet incidents :rolleyes:

    I've had a nice day, thank you. I had 2 cards from Mum! Hubby had helped her do one, which obviously triggered a memory somewhere and she must have written another herself (that makes up for last year when I didn't get one from her). Hubby had also helped her buy a bracelet I had seen in one of her brochures, it will go with a lot of my clothes. Best friend bought me necklace and earrings in the same colour. Son is coming down for the day tomorrow, I will open his pressie and hubbies at that time. Thursday Man took me out for lunch, as promised - nothing elaborate but we spent a very pleasant couple of hours :)
     
  17. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    #5977 Ann Mac, Aug 27, 2016
    Last edited: Aug 27, 2016
    Hello all,

    Spamar, I hope that its cooler and you feel better today. And that the visit goes well and you are able to enjoy the concert. I really would follow CW's advice and see your GP - he or she might just be able to do something to help you with the breathlessness, which must be really distressing for you xxxxx

    Glad you had a nice birthday, Slugsta - lol at the two cards from your Mum:) OH and I share the same birthday, and about 4 or 5 years ago, when Mil was still living independently, she phoned me in a panic as she had only just realised what day it was. She asked me to pick up two birthday cards, one for OH and one for me. When we got to her house, she called me into the dining room so I could 'sneak' her the cards - she wrote out both, put money into OH's, nothing in mine, sealed both and gave us the respective envelopes - She really seemed oblivious to the fact that OH's was stuffed with £10 notes, and mine was empty! So not only was there no pressie for me, but I even ended up paying for my own birthday card :D I feel for you, having to be so blunt to get your Mum to wash - so many times I had to do that with Mil, and its an awful thing to have to do. Is there any chance your Mum will accept pull ups? They made keeping Mil fresh a lot easier, once she got used to them - and I was spared having to scrub seat covers and cushions, too.

    Re:The care plan notes - I honestly don't know why families are not encouraged to write in the care plans - it would make sense. However, it would also mean that, as you say, there is an audit trail - which (in my bad mind) might be the very reason its not encouraged. My only suggestion is that you used post it notes, dated, attached to the page that the carer has to write on that day, and photograph it in situ. I must admit that having worked for a care agency where occasionally care plans would go back to the office and parts sometimes got 'lost', when Mil had support workers and a care plan here, I would often photograph the sheets - 'just in case', you know! Is the care plan kept where your Mum can access it? Because there could be the possibility I guess, that she removed the note and the clippers?

    Not a lot to report. No promised phone call from new consultant (What a surprise - not!) and with it being a bank holiday weekend now, I doubt if he will get in touch, so I will have to wait for Wednesday's meeting. Oldest arrived last night, bubbling over with chat about all the 'bits and bobs' she has been getting for the new flat - I guess after living at home, and then in 'digs' for the last 5 years, its really nice for her to have a 'whole' flat to call her own :D If OH is up for it, after working nights last night, we may head to Mold market this afternoon, for a wander round. Sod's law, we were planning a day out somewhere tomorrow, but the forecast is now for all-day rain, so that looks unlikely :rolleyes:

    Hope you all have a good weekend xxxx
     
  18. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,069
    Female
    Chester
    #5978 jugglingmum, Aug 27, 2016
    Last edited: Aug 27, 2016
    slugsta - sounds like you had a good birthday. Happy birthday from me as well. Odd how some years cards get forgotten and then remembered. My mum forgets some years and not others, progression of the illness is so up and down.

    I do read my mum's care notes, but have not written in them. I must admit that I think she used to read them and it would upset her.

    Just part of the progression having to carry changes of clothes I guess, not much success with getting my mum to wash, but she is not at the 'accident' stage yet.

    Ann - they seem to move the goalposts all the time in terms of what care MIL needs, and communication is so annoyingly poor when you are there so much. As far as I know, hospitals don't observe bank holidays, ie they have full staffing on, as friends I know used to still have their clinics to run, and we had an appt in a N Wales clinic on a bank holiday once (was a consultant from Chester - on an outlying clinic, think boundary lines may be stricter now - from our point of view journey time including parking was the same). So if you can fit it in it may be worth trying on Monday.

    Spamar - enjoy family visits and concert, breathing being tight in hot weather does sound worth a GP visit, I have asthma and know this can happen.

    I found a small forestry plantation near here that runs backwoods/bushcraft days, so booked son on, son was in his element. They made bread and cooked it in a Dutch oven on an open fire, made nettle crisps, used paracord to make bracelets and foraged for damsons, raspberries(none made it home) and blackberries. We had spare bread dough sent home as well, and I made a crumble with the damsons. Dau on another sleep over.

    Tomorrow me OH and dau have a big bike ride in North Wales, called the wild wales. 97 very hilly miles, starting in Bala, I think we go out to Barmouth somehow, last few years the route has only been about 75 miles, so I'm hoping to get round.
     
  19. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,952
    Suffolk
    Just back from 'sing Grease'. 300 of us, plus lead singers, a choir, a 4 piece band, makes a pretty good row! Lots of T bird leather jackets, 50s style clothes, pink hair, pink clothes..... You get the picture. Covered all ages, 9 months to at least 80. And the lead singing Sandy did a quick change at the end, came back to massive applause!

    Now I've got to clear up the wreckage of step son and family coming for lunch!

    It's hot, but cloudy, feel a bit better, but with a headache for the past week or two. Roll on a lower air pressure and cooler weather!

    John Wilson tomorrow evening, yeah!
     
  20. Slugsta

    Slugsta Registered User

    Evening all,

    Spamar, that does sound tremendous fun! Sorry to hear about the breathing and the headaches, hope it is nothing other than the hot weather.

    JM, hope you have had a good day, got round without any problems and are not feeling too sore now. Do you have a pot of chamois butter in the fridge?? Glad to hear that son enjoyed his bushcraft, it's great to know there are still places where kids can do that kind of thing.

    Ann, how frustrating that you have not been able to speak to the consultant! I do hope you manage to get some useful answers. Also hope that the weather held off so that you were able to get to Mold as planned.

    My son came down for the afternoon yesterday. We went out for a cream tea, then popped in to see Grandma. Finally caught the last of the son whilst sitting on the quay and sharing a portion of chips :) Son has a lot of work to do before he goes back in to work on Tuesday, hence the flying visit.

    Yes, Mum can see the carer's folder but I don't know that she would think to read the notes. The slip I left asking them to cut her nails was left for me (with a note on the other side asking me to get porridge ) so I'm pretty sure it was seen. They are also saying that Mum has refused evening meals - which means she is not having a proper meal at all! I am going to keep count of the meals in the freezer and contact the office if she is not getting them. One of the things the SW said is that the carers must offer a snack if a main meal is refused.

    I don't know how often Mum is having 'accidents', it doesn't seem to be more than once a week on average (hard to say as I don't always find the evidence :( ), so I don't think she is ready for pull-ups yet? I spoke to DC just a few weeks ago and they said they had no concerns about her continence. It was interesting for me to witness - I had wondered whether Mum perhaps had a coughing fit and her pelvic floor couldn't cope, or if she simply couldn't get to the loo on time. However, this seemed to be simply a case that she didn't know what was happening :(

    It's nice to have another day to go (even though neither of us work now). In fact, Friday felt rather like a B/Hol too so it has been an extra-long one for me :) I promised that we will pop in to see Mum tomorrow, it is starting to feel rather too long to go from Friday to Wednesday without seeing her.
     

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