1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Madworld1

    Madworld1 Registered User

    Sep 6, 2016
    We are all in the same boat!

    You have all made me smile with your bazaar stories. Some days it is very hard to deal with these things indeed. Maybe misery loves company, or something like that. You have all made me smile while reading your similar experiences.

    My love one seems himself some days, talks non-stop, and angry for no reason other days. My mom likes to pretend it is not happening. That makes it more difficult.
  2. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    #6042 Ann Mac, Sep 7, 2016
    Last edited: Sep 7, 2016
    Morning all,

    Once I start earning Red, I think the idea to have a fewer, but good quality classic clothes is a good one. Lol, its the ability to chose those clothes that is my problem :D I never have been that fashion concious or aware (In my late teens/early 20's I was into punk - and I loved it for the ease of the clothes, as well as the music - you could wear literally anything, and as long as you ripped it a bit and hung a few safety pins from the outfit, that was you sorted - even I could manage that :D ) . I think H might find herself in the role of my personal shopper quite often over the next few months.

    Amy, the move for your Mum sounds extremely well planned and well thought out. I can understand you worrying, though - you can rarely predict the impact of changes with an illness as unpredictable as dementia is. You, your OH and the home seem to have done as much as anyone could possibly do to minimise any upset for your Mum, this move sounds the best thing for her in the long term and it is, sadly, its something that is inevitable - so if there are any difficulties or snags (and I have fingers firmly crossed that there won't be!), try and remember that you did everything in your power to make it run smoothly xxx

    I've heard of 'tailgating' - but I always thought that (over here at least) it refers to a bad driver, driving way too close to the car in front in heavy traffic ! Your version of 'tailgating' sounds a lot more fun!

    Your account of working out what your Mum was thinking when you visited strikes a chord - it can take both OH and I a while to work out where Mil thinks she is, why she thinks she is there and what she thinks is happening/about to happen, each time we visit. And even then, I'm not always sure we can work out what her reality is a lot of the time. It makes for egg-shell tip-toeing conversations as we try to go along with her, without having much of a clue if we are saying the right or the wrong thing, sometimes. Also striking a HUGE chord are your comments about the nasty remarks. They are now a regular feature of any visits to Mil and I really find them uncomfortable and unpleasant to listen to. I've left rather abruptly once or twice because Mil has been so vicious in her remarks about others on the ward, and I've felt that in sitting there, giving her an 'audience', its actually been making her worse! The comments can be random derogatory observations or accusations about someone who walks passed us as we are sitting, or they can be her pointing out one or two specific people that she seems to have taken an on-going dislike to, and going on and on and on about them. There is one lady in particular that Mil rarely fails to comment on. Its the lady that Mil has had a couple of run-ins with (remember the talk of 'POVA's' ?). She does seem to be quite a difficult lady, often banging on doors demanding to be let out, quite belligerant at times and she has a strong Essex (I think) accent that seems to really annoy Mil. This poor woman is accused of being a 'gangster', a 'thief', of 'always going after men - even the married ones!', of being 'two-faced', a 'back-stabber', 'not right in the head' and 'not fit to be around decent people!' - and Mil is neither subtle nor quiet in airing her views. The lady looks unhappy, always with a promounced frown, and that in particular riles Mil - not only does Mil comment frequently on her 'miserable face' and her having a 'face like a smack backside', she will actually mimic the poor womans expression, in a really exaggerated fashion and she takes a really gleeful delight in doing so. She has also several times threatened to 'deck' (hit) this woman - ask her why and she will tell you its because 'she gets on my nerves', and she seems to think that attitude is perfectly acceptable. before dementia, one of her favourite sayings was 'If you can't say anything nice, don't say anything at all' - I find it really difficult to reconcile and accept the very different attitude that we get now :(

    Thanks R-Anne - first day back went 'OK', daughter says. That's about as enthusiastic as she is able to get about anything to do with school at the moment - the last 12 months have caused her to regard the place so negatively :( She knows I am going to this meeting on Thursday - its been suggested by the chair that she attends, and I'm still not sure if that is a good idea or not! - but her attitude is that she doesn't for one minute think that they will deal with the issues. And given the last 12 months, I can't say that I don't understand how she feels. My heads bopping between the school, Mil and the new job at the moment, with all of those things vying for top of the list. Once I start work, I am hoping that it will give me something really positive to focus on, and I am sure that will help xxxx

    Hope you and your Mum enjoy the visit to the raptors today, Slugsta - I'd love that myself :D Its sad when you hit the stage where what should be a lovely day out actually becomes too much for a L.O. to cope with. I think we persisited with trying to provide 'nice days out' for Mil, long beyond the point when they had actually become more stressful than 'nice' for both her and us. Sky and Alfie sound as though they are doing really well - lets hope that a proper friendship develops between them soon xxx

    JM, can relate to the 'worrying all day' over your son's first day back - did the same with my girl. Glad (for both of us) that it didn't turn out too bad for them. Mil has really dry skin on her legs (where she would also often develop cellulitis), but I found that applying an aqueous cream twice a day really helped - stopped her scratching and stopped the recurrent infections too. Not sure what you can do about picking at scabs - that was an issue for us too, Mil couldn't/wouldn't leave dressings and cuts alone, always picking at and scratching and it meant that even minor injuries could take a while to heal. The suggestion that I got on hee, to use manuka honey really helped, because that stuff seems to speed up the healing process amazingly well! OH and I usually get out to watch the riders at some point during the tour, but his night shifts have put paid to that this year, sadly.

    Hi Madworld - definitely all in the same boat! Glad we broght you a smile or two - its a case of smile rather than cry, I often think! The huge variation in moods (and abilities) seems to be a common feature - and the sheer unpredictability adds another layer of stress to the caring. I'm lucky in that my husband and I have always been pretty much on the same page when it came to recognising how serious Mil's issues have been - but I've read so many posts from others where a close relative has been in denial about how much the illness has affected a loved one, and I can see how it makes things an awful lot harder. TP is a great place to come to for advice - and to let off a bit of steam when you are dealing with the issues you describe xxxx

    Had a stupidly 'stressy' day yesterday, which has resulted in a really bad night, last night - not helped by the awful 'muggyness' we are getting at the moment. Day started with an email telling me that I'm off to London next month, for an event to do with the new job. That was OK, I thought at the time. Then I had to go for physio and to visit Mil. And the physio clinic was running late. It was the 3rd and final session of the shock wave therapy on my hip, it hasn't been comfortable but already I can feel that its made a difference - I've been able to cut down on the pain killers, which is great. But being as it was the final session, the physio told me she was going to make sure that I 'got my money's worth' - which she did, and it was extremely uncomfortable. I limped off, to go to the car to pick up Mil's laundry before visiting, and discovered that 3 absolute numpties had parked side by side across the exit from the small car park I had parked in, effectively blocking me and several other cars in. Off to the ward, explained to the receptionist in the foyer about the cars - she said she would 'phone car parking' and sort it. In to visit Mil - who was really distressed and who had just been given prn meds. She had obviously been crying and seeing me set her off again. No gangsters or gunmen, but some sort of fixation about people having affairs, of all things. First it was that 'T**'s (her late husband) son (My OH, her son, in other words!) has found a girlfriend and his wife doesn't know!', followed by how T**'s dad had turned against her because she had had an affair, followed by how S*** (OH) would 'hate her' because she had 'gone with that other man', then how T** was leaving her because she was having an affair, followed by a mid-sentence U-turn where T** was carrying on with 'that other woman'. . . and she just looped around this theme and was, as always, completely immune to any distraction. It was very odd how she referred to OH as 'T**'s son', not her son throughout. After 20 minutes she started with the nasty remarks (about the same lady as it often is and how Mil was going to 'deck her' because of her sour face!) and the queries about wasn't it time that I went? And after another 10 minutes, she told me to go as she didn't want me 'missing that appointment' on her conscience!

    So I left and on my way out the receptionist told me that 'car parking won't do anything about' the cars that were blocking the car park exit. I asked what i was supposed to do? She didn't know. Got back to the car, still blocked in. So, I beeped my horn, hoping that the 'car park' staff would put in an appearance and deal with it - as i presume they are paid to do? There were no wards nearby, so I figured using my horn to signal that I needed assistance was the best option - didn't know what else I could do? A nurse came storming out of a near by building to tell me to stop. I asked her would she please do something to get the situation sorted. She told me that it couldn't be sorted because the car owners could be anywhere in the building - and she also told me that a clinic was being held in the building and that people might be getting bad news in there - I immediately apologised for beeping and asked her what on earth I was suppsed to do, as I had to get home?

    She told me to 'get a bl00dy bus' :eek:

    At which point I also got rude and gave her a dressing down for making such a ridiculous and unhelpful suggestion. She said she would go and see if she could sort it and into the building she went. I could see her through a widow, not on the phone or anything, simply watching me. After about 10 minutes, I got out of the car and started taking photographs of the offending cars - at which point this nurse vanished, but 2 minutes later another nurse came out, got into one of the legitimately parked cars around the perimeter and moved it, leaving me with just about enough space to squeeze through and leave.

    The physio, the visit to Mil and then the stupid situation with the car parking just knocked me sideways. I found myself spending the rest of the day (and a lot of last night) brooding over all the events of the day and becoming really negative and stressing about the job as well - the prospect of travelling to London seemed suddenly too daunting, I started worrying about the cost (so far no indication that they will cover the travel expenses, though common sense tells me that they probably will), doubting that I can actually do this job, stressing about the induction trip to South Wales - oh, you name it - I fretted and brooded and worried about it. By 9 I had worn myself out, was in bed for half-past - but then tossed and turned for hours, tying myself in knots even while I knew that I was being daft. this morning, wading through treacle about sums it up, not being helped by the fact that for the 3rd day running, dau is texting me to say that there are issues with the school bus - not big enough for all the kids who catch it, there have been arguments because the driver refused one kid admission because there is no room and his Mum kicked off, and the driver has now decided to let kids on although the bus is so packed that a lot are standing. The last thing I want is to complain about something else, but that isn't safe, so now I'm going to have to ring school transport.

    Would really like to do a Shirley Valentine at the moment!

    Grace and Dotty - I hope you are both recovering well, now and hopefully the pain has eased for you both xxxx

    Hope you all have a good day xxxxx
  3. angelface

    angelface Registered User

    Oct 8, 2011
    Do so hope you have better day today.

    Could you book your London ticket asap? It will probabley be a bit cheaper that way. Also, the Tfl site can help you with your travel route. Apologies if this is all old hat to you.

    Other than that,not to worry about London - us Londoners are not a bad lot, honest ! :)
  4. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Lol - thank you Angelface xxxx I lived in London - many, many years ago - for several years, so I know that there are some extremely lovely people there - it was just the thought of the whole process seemed like it would take more reserves of energy and capablity than I felt like I had, IYKWIM. Since I wrote this morning, I've had more info, and am waiting now for instructions/help in registering with a website that the company use to buy train tickets for staff for events like this - so all my worrying was for nothing, which is typical and which (if I could have found my sensible head) I would have realised last night, when I was tossing and turning!

    The school bus situation is also (supposedly) sorted - when I eventually got through, mine was one of many complaints, apparently, and for once the council have moved quickly to sort the situation - so again, more stressing for something that turned out not to be such a big issue afterall.

    Can somone deliver a swift kick up the backside, please? I need something to jolt me out of this stupid fretting and stressing!
  5. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    I think I'd be booking a ticket to London stat!!!!!!!! and not worrying about the return:eek::eek::rolleyes::rolleyes::rolleyes:

    Send a complaint to the Car Park Manager with a cc to the Trust's Director.....and one to the local paper for good measure.:mad:
  6. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    I also hope you're having a better day. I am so sorry it was such a lousy and stressful day for you yesterday, in every way.

    I can certainly relate to not being able to sleep, and ruminating/turning things over and over in my head. The most ridiculous stuff, seems to swim up out of my subconscious as soon as I turn off the light, no matter how tired/sleepy I am. I am not saying your concerns are ridiculous or unimportant, just that mine are, in the light of day--but not when I'm trying to sleep.

    This is going to sound uncomfortably new age-ish (to me, anyway), but there are some techniques I was taught in a meditation class, combined with some things my therapist has suggested, that can help me get to sleep at night, along the lines of breathing and visualization, which I'd be happy to detail further here or in a PM, if you or anyone else think it might be helpful?

    Ann, I also want to tell you that what you wrote about MIL and the nasty comments and the face were really helpful for me. My mother has been doing this more and more, but it was really noticeable at the visit over the weekend, probably because instead of taking her out, or sitting in her room with her, we were in a common area of her care home with quite a few other residents, and staff people in and out. To make it more uncomfortable for me, my mother was making comments not only about some of the residents, but also one of the staff (this is also not new but I hate it).

    But reading what you say about MIL, although I know you've told us before, is really extremely helpful. It sounds exactly what my mother does, right down to the face she makes. We were with her for about two hours, and she would do this over and over and over and over, but then be perfectly pleasant and appropriate with other staff, or people she likes. I am beginning to realise that there are precious few people she doesn't seem to have taken against. Unlike your MIL, my mother was always capable of being nasty pre-dementia, and wouldn't have hesitated to speak up, although she would have been discreet about it previously. Not any longer.

    I find myself at a loss to know how to respond. Fortunately, we were in a situation where distraction was at hand, in the form of the game on the television and staff bringing snacks and also the dog that someone's daughter had brought to visit. But I can see what the staff have been telling me, that she is doing this more and more, especially at meals in the dining room, and they are having a harder and harder time dealing with it.

    So thank you for the description, it really makes me feel better.

    Once again I was vague about American English, sorry. Here in the States, we also use "tailgating" to refer to someone who drives their car too close to the rear bumper of the car in front of them, as in "he is tailgating me." I am not sure when the term entered use for part of the pre-American football game ritual. I do know the derivation, as a tailgate (noun) is the part of a pickup truck that folds down so that items may be more easily loaded and unloaded from the bed of the vehicle. Hence, the party where you might fold that down and spread out food on it also became a tailgate, and then the noun got turned into a verb (as happens all too often in American English). I should add that these affairs are held in parking lots near the stadium where the game is being played, might have anything from very humble sandwiches to quite elaborate food, often involve a portable barbeque, and always involve vast amounts of alcohol. Not a snapshot of one of the finer points of American culture, but a very real and accurate one.
  7. Slugsta

    Slugsta Registered User


    Ann, I'm sorry that you had such a generally foul day! :( I think it's natural to brood about things, especially after a bad day. At least, I hope it is as I do it a lot too.

    I'm glad you have the travel thing clarified and hope that knowing arrangements are made will help you feel calmer.

    The parking situation would have infuriated me too, especially if I needed to be elsewhere. I don't know what else you could have done in the circumstances.

    Ann and JM, I do hope that your respective daughters will be able to get on with their education in peace this year!

    Thanks for the explanation of 'tailgating' Amy :)

    As planned, we (hubby and I) took Mum to the raptor place today. We arrived around 11.45 and saw a flying demonstration, involving 4 birds, at 12.00. Then we went for hot choccy + cake. After which Mum had had enough and wanted to go home. Which confirms that we did the right thing about Longleat!

    Mum smelled badly of urine today :( When we got back to her flat we found that her bed had been very wet this morning, the carer had stripped it and put the stuff on to wash. Hubby and I finished making the bed (carer had done what she could but didn't find the spare duvet etc) and then took a load of Mum's clothes home to wash - anything that looked (or smelled!) less than pristine went into the basket. I also got Mum to take off her trousers and knicks, wash with a flannel and put on fresh things - there was no way she was accepting a shower :( I have just ordered those duvet covers Ann! Have also ordered some pull-ups as Mum said she will try them. Although it might be a different matter when the time actually comes.

    It is apparent that Mum has had only 1 evening meal since Friday (and 1 meal at DC yesterday). After our drink and cake today she immediately said that she won't have any dinner. I pointed out that it was hours til dinner time but she remained adamant. I have phoned the care agency and told them that, contrary to what she says, Mum is not having something before they arrive, which means she has had nothing other than porridge all day (and sweeties etc). I reminded them that there is bread in freezer and Mum might agree to toast and honey if she won't eat a meal. What else can I do please? I'm not worried about Mum eating 'properly' but neither do I want her to go for days on end without a meal :(

    Yes, I'm happy with the way Sky and Alf are getting on, although there is still a long way to go :)

    Hope everyone gets a good sleep tonight!
  8. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Morning everyone,

    I'm feeling less of a 'Moaning Minnie' this morning, you'll all be pleased to hear :eek:

    Maureen, the idea of a one way ticket sounded extremely good yesterday! Yes, I should complain - but to be honest, at the moment I am just sick of complaining. One of the absolute worst things of the last few years has been the number of times I've felt I've had no choice but to 'raise concerns' about so many different things relating to so-called care, support and services for Mil. Respite beds, the agency and some of the staff they sent, the council over things like pad disposal and numerous other issues, Mil's diet at DC and respite, missing clothes at respite, pharmacists, medication, and (it feels) like dozens of other minor and occasionally major issues besides. Add in the problems with the hospital since Mils admission, and the problems with the school over the last several months, and I feel 'done'. I think 'battle weary' is an appropriate term, at this stage :(

    Oh, Amy - a lot of my 'toss and turn' worries are on the ridiculous side too. Its as you say, though - they just don't feel 'ridiculous' when you are desperate to sleep - and can't!

    Lol - I don't think that Americans are alone in evolving a culture of sporting events being associated with drinking, Amy, believe me! Football in particular over here seems to often go hand in hand with excessive drinking, for some fans!

    I struggle too with dealing with the nasty comments that Mil directs at others. Its awfully hard to know how to respond - everything inside you says that you just cannot go along with what is being said, ignoring it either has no effect or makes her persist in trying to get you to respond, distraction may work briefly but within moments she will go back to pulling someone to pieces/insulting them, and correcting her - no matter how gently or tactfully you try to do it - can make her worse or make her cross. The staff - when they overhear remarks she makes about them - have been brilliant, they just brush them off or even laugh them off, which helps. But the remarks about other patients are harder, especially if that patient is able to understand her or if they have visitors who may overhear Mil. As I've said, sometimes I've felt that in just being there and providing her with an 'audience' can make Mil a lot worse, and so a couple of times I've cut the visit short. I honestly have no suggestions to make about how best to react, Amy - other than walking away when she starts to get too bad :(

    What a shame you had to have such a short visit to the raptor place, Slugsta - though as you say, it does confirm you were right about her not being able to cope with a full day in Longleat.

    I honestly don't know if this will work for you, but when I felt that I had to make the decision about Mil going into pull ups both day and night, I removed all her ordinary knickers. I expected to get serious grief over it, but she wasn't that bad (thankfully) - I stuck to the story that it was just 'temporary', whilst she got over the 'infection that made you have those accidents, love' if she complained or objected, and once I stressed how they would prevent others knowing if she had had an accident, she mostly was OK about them - and gradually, she just stopped mentioning them and in fact thought that they were just ordinary undies (Which led to her objecting to me binning them, as she couldn't understand why I wouldn't put them in the washer :rolleyes: ).

    I was worried about almost the opposite situation to you as regards the food - Mil was being given excessive amounts of biscuits/cakes/sweets at DC and respite, and the weight gain was causing issues with her breathing and mobility, as well as potentially causing problems with her diabetes and putting more strain on my back when I helped with personal care. I asked, nicely and then firmly, for them to please cut back on allowing her so many 'treats', and got nowhere - time after time I walked in to collect Mil and either found her polishing off a plate of biscuits/cake or even tucking into a plate of chips (despite the fact that she had her evening meal here). I suspected that it was a way of keeping her quiet - agitation and the munchies seemed to often go hand in hand for Mil, and offering her anything sweet was a distraction that would sometimes work. I'm sure the suggestion came from someone on here, that I tell DC that I was going to be asking for a referral to a dietician, because of health concerns for Mil due to the weight gain, and asked them would they be able to keep a food diary where everything Mil ate was recorded in detail? And it worked - faced with having to record every morsel, for a dietician/GP to see, they stopped with the excess and combined with my efforts at home, she actually started to (very slowly) lose weight. I just wonder if there is some way this idea can be adapted to ensure that the carers give your Mum her evening meal, Slugsta? They may feel that they can ignore your concerns - but if you bring the potential involvement of a dietician or GP into the mix, then it might just make them take the issue more seriously and do as requested. Its the only suggestion I can think of, other than asking for an early review (which I know can take flipping ages to organise!) and airing your concerns in the presence of agency managers and a SW or CPN - having more 'official' figures as witness to your concerns might also prompt the agency to actually ensure that their staff make more of an effort too.

    A better sleep last night for me, though I did have trouble dropping off at first - last nights stupid 2 hour stressing session was because none of the 'equipment' that work have ordered for me has arrived yet and nor have my train tickets for next week appeared. Quite what worrying about that untill after midnight was supposed to acheive, I really don't know - if they don't show by this afternoon, I'll just have to alert my new boss. Also creeping in were worries about todays meeting at the school - daughter has declared she wants to be there, and I have no idea how she will react if we are fed more prevarication and ridiculous excuses. Come to that, not sure how I will react - I'm every bit as doubtful about their behaviour as she is!

    We have absolute bouncing rain this morning - though it still feels really warm! I should go and visit Mil today, but not sure if its going to be possible as i have a lot on today - I may try and head out an hour early for the meeting and - if there are any parking spaces where I can't be blocked in! - call in to see her then. We'll see. I'm still waiting to be sent the promised list of EMI nursing homes, so that we can start looking for a place for her - though so not looking forward to trying to fit that in, I must admit :(

    Dotty and Grace - hope you are both feeling better, and to all - hope you have a good day xxxxx
  9. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Slugsta, I am also sorry that you had such a short visit at the raptor centre, but the time you had there was clearly pleasant and yes, you were right about Longleat and longer outings not being a good option.

    I am distressed by your report about your mum not eating; I went through this with my mother (pre-diagnosis but not pre-dementia) when she was living on her own and couldn't make herself food and couldn't remember if she'd eaten and had no appetite. She lost an alarming amount of weight and did end up malnourished/with vitamin deficiencies, so I agree you are right to be worried. I think that you will have to be firm with the carers that they are to make her food, even if she verbally refuses.

    The only thing that would get my mother to eat, was if someone put food in front of her, and sat down across the table from her and also ate--she would eat a proper meal that way, despite saying two minutes earlier that she wasn't hungry. She needed that visual cue and the social setting as, for whatever reason, she couldn't "feel" hungry. Otherwise she didn't eat at all, except for ice cream and sweets. So I wonder if something similar could be going on with your mother? I don't feel as if I'm saying anything helpful, just worrying you more, and I'm sorry.
  10. Slugsta

    Slugsta Registered User

    Evening all,

    Thank you for your input Ann and Amy. All suggestions are welcome and taken in the spirit they are given :)

    Mum has been quite malleable since the dementia became apparent, much different from the dogmatic views she used to express. However, we do see flashes of temper/tantrum at times and she was going that way when we were talking about meals yesterday. It must be difficult for the carers if Mum is adamant that she doesn't want them to cook anything. I'll see what is in the care notes tomorrow.

    Mum doesn't have a SW. The woman who arranged the care package has said that it was her job only to get things started and, as she has done this, Mum's file has been closed. I need to contact 'Care Direct' if I have any problems and they will pass a message on to whoever they deem appropriate. This makes it very much harder as I cannot discuss problems informally.

    I have ordered a pack of pull-ups online ( I found a local chemist who has some at very good prices, but nothing in small sizes, which I think Mum will need) and, remembering your situation Ann, have decided that I will remove her 'normal' knicks. It might be different if the carers were there to supervise when Mum gets dressed/undressed, but they are not. Mum swears that she changes her knicks night and morning - so why were there none in the washing box yesterday? Last load of washing before this was last Friday so that suggests she had worn the same pair for 5 days and nights. No wonder she was less than fragrant! :eek:

    My friend's mum is very poorly in hospital at the moment. This evening the family was called in urgently - for the second time this week. Again, she had rallied somewhat by the time they got there - thankfully - but one wonders how long she can keep going like this, especially as they don't know what is really causing it :(

    Ann, I do hope that the school meeting today was more useful than you feared? I'm glad that you are feeling a bit more positive but please don't feel bad for being a 'moaning minnie'. Firstly, you are not. Secondly, even if you were, this would be a safe place to express those feelings. Sending you lots of (((hugs))

    And to the rest of you lovely people - (((hugs)))
  11. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    Ann - I hope school meeting went well, we had heavy rain yesterday morning as well, but it brightened up quickly, OH did get a soaking on his bike as he rode to work.

    Please try and relax, you are working for a reputable place and so you would expect all travel to be covered, it will all work itself out. I think a quick email about the equipment to them if it still hasn't come would be fine.

    slugsta - no help on meal situation I'm afraid - I know my mum wasn't eating properly when the crisis hit, and I realised how she had been living, she had lost a lot of weight, due partly to not preparing food and partly to stomach upsets with poor food storage, she then ate very small portions to start with with us but her appetite improved. She didn't like having to have her main meal at midday when she moved into sheltered extra care, but has got used to it, something she has hated all her life having been a city worker, commuting with sandwiches, but the restaurant is only open for lunch.

    Incontinence not reached me yet, hoping as mum has daily carers, they will be able to increase visits to deal with it, as I can only get there once a week with work. I can imagine my mum will be very resistant to help though, she has always been a private person, locking bathroom door for a wash, even if just my dad in the house.

    After first day crisis with son's friend, he caught up with this friend J on Wednesday, went back to his house, and then they both came here - so all seems well. He didn't see J after school yesterday as J was playing with O who is the one who doesn't like my son. First full day of lessons, think with his writing issues this is going to be a long first term. He has PE with cross country today, he has been looking forward to this since dau excelled at cross country, so hope it all goes well and he doesn't get an asthma attack.
  12. Spamar

    Spamar Registered User

    Oct 5, 2013
    JM, hope son survived today with cross country. Hoping everyone else slows down a bit, or juggling fast better?
    I dared to go out, and ended up sneezing again, with sore eyes and runny nose. This is getting a pain, I have to shop and feed birds!
    My car was on Tv the other night, but blink and you missed it, and didn't see how dirty it is! There was a serious fire at a local farm shop, which was completely destroyed,but the processing areas were saved. As they supply several shops and hotels, it was serious. The cameraman came and parked his car outside the coffee shop / farm shop where I was, and there was my car, on tv!
  13. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Hi everyone,

    The login gremlin got me again yesterday. Took ages for the login page to load, and then, after I was finally in and I'd typed out a reply to to you all, it logged me out and refused to load again, so I lost the lot and gave up!

    I've said before that I think, despite the potential problems with Mil's current big appetite, that I'd find worrying about not eating even worse. She lost a fair bit of weight in the 8 - 10 months before she moved in, a combination of her only being able to make toast or sandwiches (though we thought it was that she couldn't be bothered, afterwards we realised that she simply had lost the ability to manage to make anything else) and poor food hygiene that caused her to have an awful lot of upset stomachs, rather like JM's Mum. Her weight stabilized when she moved in - and once she started at her last DC, with all the biscuits/cakes on offer, it piled on again pretty quickly. But I'm very aware that not eating is an issue that will in all probability crop up again, so what you say, Amy, about how eating with your Mum gave her the visual clue and provided a setting that would encourage her to eat is interesting. That's one of those facts/tips that is helpful to know and file away in your head, as at a later date, it may prove to be something that works well if any of the rest of us are faced with that situation - thanks, Hun xxx

    Slugsta, I find this current approach of Social Workers 'closing files' to be completely stupid! How on earth does it make sense to 'close the file' on a person who is suffering from a degenerative illness, when their needs and issues are only likely to increase? It makes for such an ineffective service, especially when it seems to be the trend to allot a brand new person each time the file has to be re-opened, which means having to start from scratch to get to know someone and their situation, makes more work for carers as they try to bring each new face up to speed, and it increases the chances of information about the client being over-looked or missed. Now we have to find a home for Mil, she has been allocated a 'social worker' - she was allocated one for the section 2, then another for the section 3, a third attended a meeting after she returned to hospital and now we have another name of another social worker (though only her first name, mind!), who we have yet to meet, be given contact details for and who has yet to contact us - yet she is the person who we are mainly meant to 'liase' with in finding Mil an EMI nursing home - its ridiculous.

    I'm so sorry to read about your friends Mum, Slugsta - what a horrible, scary situation for her family :(

    Has your Mum been referred to a continece service? Its just that if she is, she may well be able to get the pulls up for free - worth looking into, although they are cheaper online, its still a big expense, especially combined with the cost of all the waterproof protection for the bed!

    Glad all seems well with your son and his friend now, JM - and hope he enjoyed the cross country after looking forward to it so much.

    Your hay fever sounds like an absolute misery to live with Spamar - the weather is so odd at the moment. We - over the last couple of days - have had some heavy showers, but in between its been still so muggy and warm. I hope it eases for you very quickly - must be so frustrating to suffer everytime you go outside.

    The meeting was a complete waste of time - the Chair only had the copies of correspondence that I had sent him and despite the covering letter I had sent providing all the details, he clearly wasn't clued in about the whole situation. He said it was all very 'difficult' because he 'didn't know' if the head had made or kept records (the head is now off on long term sick leave), and if these records existed he also didn't know if he could access them. He didn't know what I could expect to happen next or when I would next hear from him. He insisted that the complaint was only at 'stage two' of the schools complaints procedure - that stage is supposed to be reached within a short timeframe - its now been 7 months, besides which, to trigger stage 3 I had to write to the B.O.G. - which I have done twice. To add insult to injury, I got home to find a letter from the LEA Head of Education telling me that as the school have said that the complaint is only at stage 2, that he is 'not minded' to get involved until its reached 'stage 4'. ARRRGGGGHHHHHHH. Extremely fed up letter gone back to him in response.

    Same day as the meeting, I contacted my new employers to just let them know that neither the IT equipment, nor my train tickets had arrived. Told not to worry about the IT stuff - but that the tickets should have been sent next day delivery, so I should have had them the previous Monday at the latest. Multiple emails and phone calls followed, as Royal Mail insistd that they had tried to deliver on Tuesday but no one was in - either OH or I were here all day - and that I would need to take the failed delivery card to the sorting office - only, no failed delivery card had been put through the door and without it, I couldn't have the tickets! More calls, and in the end, managed to get a Royal Mail manager to sort it and I was able to go get the tickets. Turns out they had the wrong house number on them - hence no delivery card :rolleyes: That took up pretty much all to day to sort, which combined with the school nonsence left me totally wiped out and stressed off my head. Little sleep that night, and yesterday, OH ordered me back to bed at 11a.m., as I had a banging headache and was feeling rotten. I actually slept for about 4 hours and did feel a lot better afterwards, thankfully.

    Meanwhile, I've had masses of info through re the new job, and have been reading, organising, printing off agenda's, and bits of info that I need to take with me on Monday. I know now the names of the rest of my 'team' (there are 4 of us) and have a better idea of what to expect from this induction - its a very busy, jam packed two days. Slight hitch in that I had an email late last night saying I need to take my DBS certificate - and though on line DBS tracking tells me its been posted, it hasn't yet arrived - crossing fingers that I get it today. There's a massive amount of 'stuff' that I will have to set up once all the IT equipment is here, and I will only be able to sort the travel for London next month once thats all done - its all very hectic and I suspect that my first few weeks in the job are going to mean a lot of learning and long hours. But, I think it will be worth it - and I've warned the family that they are going to have to get use to Mum being otherwise occupied for the foreseeable future, and do an awful lot more for themselves. Its going to be something of a shock, I suspect!

    I'm going to sort and pack my case today - I've organised the paperwork as I've gone along, so just my clothes and toiletries to deal with. I will have to hit the shops to make sure that the family don't run short, and have bought frozen pizza's and so on, so that even son should be able to cobble together easy meals for himself and youngest (OH is working both Monday and Tuesday night, and will sort himself out for food for work). I've also arranged for dau to have school dinners for those two days, as otherwise I suspect her lunch box will consist of just cherry tomatoes and as much chocolate as she can cram in there! Will have to visit Mil (haven't been since Tuesday) and at some stage, I hope to get chance to deal with the grey 'mallen streak' in my hair! Dau is back to her theatre classes today, so the usual running her to and from also has to be done. OH - bless him - has tackled all the ironing, so that's one job I can cross off. I'm going to try and get everything done today, so that maybe we can have a chilled day tomorrow, and we might even fit in a zoo trip - we'll see. Slightly concerned that I may be landed with a load of laundry for Mil when we vist today (they said there wasn't any, when I went on Tuesday) - not worried about getting it done, but with OH on nights and the vast majority of her clothes at the hospital, worried about getting it back so she isn't left short of clothes.

    Hope you all have a good weekend - will try and pop in again before I go on Monday xxxxx
  14. angelface

    angelface Registered User

    Oct 8, 2011
    Very best of luck with this new job,so glad you dont mind going to London (lol).

    I know its not your inclination - but try to concentrate a bit more on you for a change. You work so hard caring for everyone else,but you need some of that help for you.

    Hope you are not offended,I never found out I was not indespensable till my health gave way. Please dont let it happen to you. Xx
  15. Grace L

    Grace L Registered User

    Jun 14, 2014
    NW UK
    Hello All, I've popped in to give you my update.
    Knee is going well, I'm having to learn to take lots of rests.
    Learning all the time what my limits are, and stopping before I am in pain.

    Physio assessment was OK. Working out what help I need (if at all) in the kitchen and bathroom.
    I'd done a lot of 'prep' myself. Chair in bathroom, kitchen so I can rest....

    She made sure I was able to get in and out of bed, the bath etc....
    Told me not to worry about things like making the bed every day, washing the floor.
    She is coming back next week and asked if a student can come too.
    I think I've been allocated 8 one hour visits.

    In a couple of weeks all being well, weather dry... 'we' are going for a walk around the garden (big).
    We have several paths, levels, steps, surfaces , so it will be very good practice for my new knee.
    Flat is on a corner plot, wrap around garden, ideal for physio to see just how well I'm doing.
    I'm still not sleeping well, so might ask GP Doc (or try herbal tabs) next week.

    Family Update ......
    SiL is/was still 'off' with me, as I didn't tell her about me having my knee op.
    Family in laws are in a bit of a 'fix' as they are having to step in and look after their own mum.

    Told (LWL) to SiL said I was called in for surgery with one days notice as someone else cancelled.
    For the new people on TP, I was concerned my in laws would 'invent a MiL/Mum emergency'
    .... and somehow stop me having my operation.
    They don't like / cope with MiL and her Alz.... and for the most part avoid her.
    Me being unavailable for the next few months has realllly set the cat amongst the pigeons.

    SiL came over to visit when my sister was still here, SiL shocked to see her, as she didn't realise I had company.

    I should of told her I had a visitor, as she has 'wasted a trip'.
    Eh?, soooo you have only come to see me if I was on my own?
    SiL did not really show a great deal of empathy, or concern...

    She did ask how long I thought I'd be 'out of sorts', and I replied a few months.
    I swear, she screeched :eek: .... What !!!, but what about Mum?
    She then left the room, went outside to make a phone call, and I watched her from the kitchen window.
    He phone 'free arm' was getting animated, waving it about, and I could see her watching me, watching her...
    I can only guess this call was to one of her bothers (live in same town as MiL) , to give them the 'bad news'.

    I had a call yesterday evening from my niece to see if I needed anything doing, or shopping?
    She said her mum had been over to see Granny/ Mum earlier, and was now sat at home in tears upset ...

    Her mum was OK for a while (this is MiL new normal), but then became agitated. I think she was switching between thinking her daughter was 'me', then her, then me.

    MiL asked her daughter how 'her' knee was :confused:, then asked when I was coming over to see her.
    When MiL thought her daughter was 'me' , was when she was at her most angry.

    Now SiL is angry with me because her Mum thought she was 'me', and kept repeating the knee questions....
    SiL cant cope with repetition in a calm manner. She cant hold her tongue.

    OMG ! SiL asked her daughter when she thought I was going to be 'up for a visit' to Mums?
    She thought it would 'do me good' to get out of the place, go for a drive, and visit Mum !!

    Only had 2 calls from my other in laws.
    Neither asked if I needed anything, more interested in when I was going to be back on duty.
    I told them ask me again after Christmas. (I was joking).
    I'm sure the air was blue after I put the phone down.

    Sorry about my long post.... xxxx
  16. Spamar

    Spamar Registered User

    Oct 5, 2013
    I bet you were chuckling!!
    Tell them it'll be at least 6 months. You needn't add before you get signed off. Are you still going to move? You could have moved and settled before then!
    Surprised the physio only just came. What would you have done if you hadn't been able to get into bed?!

    Take it easy and good luck!
  17. fredsnail

    fredsnail Registered User

    Dec 21, 2008
    Sorry - I usually only lurk as Grandad passed away Nov 14 I don't usually feel like I should post unless I can be of use (which isn't very often!) but Grace I agree with Spamar - tell them at least several months and yes move and be settled by then (and don't give them a forwarding address!!).
  18. Spamar

    Spamar Registered User

    Oct 5, 2013
    You're quite welcome to post, fredsnail. We often go off into little sidechats!
  19. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Morning all,

    Thank you Angelface - half nervous, half excited at the moment! Just want to get there tomorrow and get stuck in - I think once I've met everyone and start to know all the ins and outs, I'll feel a lot better :)

    GO GRACE! Oh - I would love to have been a fly on the wall and seen some of the in-laws reactions, especially Sil's! You stay strong, Hun, and Spamar and Fredsnail are right - tell them it will be several months, and if you can, get that move sorted and done before they can try and rope you back into caring for their Mother!

    Hi Fredsnail - Spamar is right, post away, lots of little sidechats on here :D

    A brief drop in this morning. DBS arrived yesterday, thankfully, so am all set now. Spent a lot of the day starting to properly sort out upstairs, as I really am going to need my 'office' (the box room, lol) back now. We had to turn it into a bedroom when Mil moved in, which poor oldest daughter got relegated to - always felt guilty about that! Now oldest has her old room back (when she comes home for a visit) and I can have my office - though at the moment, to be honest, its part office and part storage for Mils things!

    In between we visited Mil. With youngest with us, we couldn't go on the ward, but were offered the use of the 'activity room', rather than the 'family room' - a big difference - bigger, brighter, not at all cell like. We were warned that Mil has had a couple of 'bad days' this week - I know she was very agitated on Tuesday, but apparently on Thursday and also yesterday morning, she was agitated enough for the prn meds to be used too - once again, same pattern as we have had before with Mil, the need for prn is steadily increasing and it will no doubt hit the stage where the medication ceases to be effective before too long :(

    She was pretty calm when we saw her, but seemed a little more out of it than usual. Her hair was absolutely plastered to her head, not sure if it was grease or sweat that was responsible, but for once she was very aware that her hair was a mess, and fussed about it. Yesterdays 'theme' was all about college - she had 'visited a college this morning', 'this place' was a college, she was 'enrolling in a college'. . . we just went along with it as there was no upset or fretting attached to the fixation. Barely there 20 minutes and she started with 'Don't you have to go yet?', and moved quickly on to a firm 'You lot had better go now' - we managed to stay for just over half an hour, but that was it - us being there was clearly worrying her. I don't know if its she is struggling simply with having visitors, if even that small thing is too much 'excitement' for her - or if its a sort of fixation or loop that she has got into, where she really believes that we have to leave because she is worrying that we will be 'late' for a bus or somewhere else that she thinks we have to be?

    I asked about washing as we were leaving, and despite being assured on Tuesday that there was none, yesterday I was prsented with two large, very full bags. They each had another bag inside them, which were tied up tight with a strip of plastic, so I expected the worse :rolleyes: I asked did she have enough clothes to last to at least Wednesday or Thursday, explaining I was going away and OH was working nights?. The nurse ( a new chap, not seen him before) said he would go and check, came back to tell me she would be fine as she had one clean pair of trousers left! I said that in that case, I assumed that meant that the bags were crammed with trousers, because she should have had at least 12 or so pairs there ?. He said there 'might' be more clothes that had been put out of her reach!

    Got home, both bags filled mainly with absolutely soaked nightwear and both of Mils dressing gowns, along with one top, 2 pairs of trousers and 2 bra's. Oh yes - and once again, stuff that isn't Mils - a pair of pj bottoms this time. I wish I knew why, over the last 3 - 4 weeks, I've started to get so much wet nightwear? This is as bad now as it was before Mil finally accepted pull ups at night, and I had soaked nightclothes (and bedding) every single morning. I've politely and tactfully offered to bring in pull ups, and even taken some in after they have insisted that they have a supply there. We had occasional 'flooding' at home - but if thats the reason, it must be happening every single night at the moment in hospital :( I'm torn now, because I know she has no dressing gowns and possibly only 2 or 3 nighties at the hospital, and am wondering if I really should pop down today with the stuff I now have clean for her.

    Catching up with the rest of the families washing, now I have Mils done, about to go for a shower and get dressed, hoping to head off to the zoo at about 11a.m.. I'm all packed for tomorrow, ready for an early start (train is at just after 6.30a.m.) - still havent dealt with the mallen streak, and not sure if I will actually get chance now, lol. No idea if I will get chance to check in now until I'm back, so love to all, hope you all have a peaceful few days, and that Grace's new knee continues to improve and that Dotty is feeling much better. Amy - good luck with your Mum's move if it happens while I'm away. Take care all xxxxxx
  20. Spamar

    Spamar Registered User

    Oct 5, 2013
    Morning, Ann, hope you have a good day today and all kinds of good luck for tomorrow! Will be thinking of you!
    A mallen streak can look very distinguished, don't fret too much!

    I overslept this morning, 07:45 before eyes opened! I'm usually up about 06:30. Don't know why,I was early to bed!
    Blue skies, think it's going to be a fine day!
    Have a good day, everyone!

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