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  2. Q&A: Dementia Together Magazine - Wed 25 April, 4-5pm

    Do you have any questions about Dementia together, previously known as Living with dementia magazine? Maybe you'd like to know how they worked with people affected by dementia to come up with the magazine's new name, or how they decide on the articles to publish each issue? Danny and Gareth from the magazine team will be on hand to answer your questions in this thread on Wednesday 25 April between 4-5pm.

    Feel free to post any questions between now and then, and we'll answer them next Wednesday.

So bizarre !

Discussion in 'I care for a person with dementia' started by Ann Mac, Jul 31, 2014.

  1. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,511
    Sending you massive Hugs JM - I can't begin to imagine the emotions you went through yesterday, because as you say, the 18th birthday is a big milestone in our childrens lives. I don't know what to say, other than I'm sending you lots of love and thinking of you xxxxx

    Also, nice to see you back, hun xxxx

    Slugsta, glad you are feeling a little better - and hoping that 2jays, Spamar and CarolynP are also on the mend xxxx Spamar, if you still feel ill, I'd be back to the doctors - just to check that the cough is only the tail end of the lurgy, and not an indication that more AB's are needed xxxx

    And please don't talk about ice cream - I am really trying to lose weight, hoping it will help the aches and pains, and along with such lovely delights as cheese, crusty bread and curries with rice and naan bread, ice cream is currently on my 'must not eat' list, lol!

    Have a good weekend, everyone xxxxx
     
  2. Slugsta

    Slugsta Registered User

    Jm, it is good to see you, but I am sorry something has occurred that you don't feel able to 'publicise' at the moment :( It doesn't take much imagination to understand that the day your child should have been 18 would be very emotionally challenging (((hugs)))

    Spamar, I'm sorry you are not feeling better :(

    My tum is still rather sensitive but certainly better than it was. OH and I are going out for a meal this evening, to celebrate our wedding anniversary, so I am hoping I will actually feel like eating a proper meal!
     
  3. Spamar

    Spamar Registered User

    Oct 5, 2013
    5,873
    Suffolk
    Congrats on wedding anniversary, Slugsta. Hope you enjoy your meal, every scrap!
    Breakfast this morning, half a piece of toast, with butter! I got up all bright and early, had toast, went back to bed! Woke up 09:50,coughed a lot, well, I am dressed now, but I meant to have been out for coffee or something and done shopping by now!

    Grey sky, but sunshine!!!
     
  4. Slugsta

    Slugsta Registered User

    We have a bright blue sky here! :)
     
  5. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,511
    I hope you had a lovely anniversary meal Slugsta, and that you were able to fully enjoy every bit of it xxx

    Are you still losing weight, Spamar? Good for you if you are, but not sure I would chose being ill as the easiest way to lose it, bless you! I've lost 2lbs in the last 5 days, so feeling very pleased with myself. I have to stick at it - but its pretty hard at the moment. Apparently, craving carbs is a symptom of fibro, the gabapentine can cause weight gain (and I have gained since starting taking it) and of course, excercise isn't easy when you have pain in a lot of your joints. I'm going to try going swimming - I figured just moving through the water will count for something and be better than nothing. I'm also thinking of asking GP to stop the gabapentine - I just can't say that I have seen any benefit to taking it, tbh, so if that's even partially responsible for additional weight, or going to make it harder to lose it, there doesn't seem much point. I'm not crash dieting, btw - trying to stick to around 1300 calories a day (recommended at my current weight, in order to lose) and just trying to eat a healthy diet, increasing fruit, fibre and veg - and, of course - cutting back on all the nice things. I can say no to biscuits, chocolate, cakes and sweets quite easily, its the bread, cheese and potatoes I miss!

    Dau and I have been talking, and she is really reluctant to return to college, just as I feared :( However, after many discussions (several of which have ended in strops, not because I've tried to force her in any direction, but just because she does the 'taking offence at anything said to her' behaviour) she thinks she has come up with a plan - doing a 4 year uni course, involving a foundation year. As long as she turnss 18 at some point during the foundation year, that's doable. And she has decided to go for sports training and rehabilitation, like her big brother! Just hoping now that she sticks to it!

    A little ironing, sorting out a few bits and bobs, and a visit to Mil on the cards today. Next week, I am having to work on Saturday, so am taking tomorrow off - however, I have 3 or 4 admin tasks that I really need to get done, and I have no idea how I am going to fit them in, as I am out and about for most of next week, so I may end up having to work a couple of hours tomorrow morning, with no idea how I am going to claim the time back! The weather is supposed to be really nice today, so maybe I'll take a wander with the dogs and the camera - we'll see.

    Have a good day, everyone xxxx
     
  6. Spamar

    Spamar Registered User

    Oct 5, 2013
    5,873
    Suffolk
    Morning Ann! Glad about your weight loss. I managed 1.76 lbs this week. Unfortunately the ABs I’ve been taking make most things taste horrible! Though ice cream is OK, also a raspberry and sherry trifle. Fortunately in small containers, so cant go mad! Fresh pineapple OK, very refreshing, anyhow.

    I had gabapentene, it didn’t suit me and it didn’t work!
    Sorry dau hasn’t yet learn the art of discussion, it’ll come! Is the course doable for her?

    Hmm, our weather was meant to be nice as well! Haven’t seen the mist so thick for some time, and we’ve had mist for days and days.

    Have a good day!
     
  7. Slugsta

    Slugsta Registered User

    Morning all,

    Well done on the weight loss Ann! Gabapentin didn't suit me at all, nor did pregabalin, so at least I don't have that issue. The gaba made me really muddled, I panicked and stopped taking it when I couldn't just look at a clock and tell the time (had to talk myself through it 'the big hand is on the 8 . . .') :(

    Hmmmm, you did suspect that Miss Mac would not want to return to education but it sounds as if she has a reasonable plan. Are you happy with what she is suggesting?

    Spamar, I'm glad you are finding something you can enjoy to eat and really hope the bad taste wears off now that you have finished the antib's.

    We had a lovely evening yesterday, the meal was very good. Mind you, my tum is a bit unhappy again this morning :( I suspect that the bug I had has resurrected my dairy intolerance and am hoping it is only temporary.

    We were warned that it would be cooler today - and they were right. Temperatures supposed to rise into the mid 20s over the next few days :)
     
  8. Spamar

    Spamar Registered User

    Oct 5, 2013
    5,873
    Suffolk
    As thick a mist as I’ve seen recently here.
     
  9. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,511
    Good to read that I'm not the only one who hasn't found gabapentine much use! Though sorry too, that if failed to help both of you.

    I actually think that the uni plan is a great idea for dau. She didn't enjoy her brief stint in college - this sounds horrible, but (perhaps) because she is diagnosed with ADHD, she was placed into a class with students with actual learning disabilities, and some with behavioural problems due to the indviduals having assisted learning needs. She felt stigmatised - which we argued about - but to be fair, she also had the (it seemed) quite legitimate point that with lessons geared to others in the class, who had more difficulty learning than she did, she found herself bored and feeing like she wasn't learning anything, that she was wasting her time. She lost faith in the college very quickly - and I think that was also partially down to the awful experience she had in secondary school. Uni is a very different experience to college, a completey different environment, and I think that will be good for her. The plan of what to study is right, too, I think - she has excelled at the leisure centres where she works, is often given a lot of responsibility for a kid her age, and does well with it. And she enjoys it. Seems to me that if you are good at something and enjoy it, when it comes to studying, that's half the battle won. And - of course - she will have 4 days free per week to fit in work. She has just been given a permenant P/T contract, which boosts her wages quite a bit for all the additional hours she typically does (she brought home only a little less than I do, last month!), so even if she has to do slightly less hours, she will still be on an amazing wage for her age

    The trouble is with her, though, is that if everything isn't smooth, if one bit of a plan fails to match up to expectations of what she wants, it's total drama queen territory, and she loses inclination to work through any issues! If we can get through the application and planning process without that happening, I will give a huge sigh of relief!

    Day here is turning out to be quite grey and cool - was hoping for just a little sunshine!
     
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    5,873
    Suffolk
    Yes, so was I. Can now see beyond the end of the garden but only just!
    Sure, uni very different to college. Would her bro help her if things got sticky? She’s getting older, might be able to deal with things in a better way.
    My oldest grand dau has nearly finished her makeup course. Job hunting looms. Next one down has A levels, her sis GCSEs, it’s all happening! I know the A level student has offers to IC and York. She’s working very hard. Younger sister suddenly decided that work might pay! So is doing her best!

    Hope you have a good day, what’s left of it. My plans disappeared in the mist!
     
  11. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,511
    Morning all,

    We didn't get the fog or mist here, Spamar - just grey skies and some rain, and chilly. Re Uni - For the first year of the course at least, dau will attend the local uni, which I hope will help. Brother is on the end of the phone, and I know he will help her if she needs it - so all good, hopefully. Sounds like all your granddaughters are working hard at their education - good luck to all of them, I think from GCSE through to college and beyond is a tough time for kids, a lot of pressure, so well done to all of them for putting in the effort x

    OK - I'm bouncing with the CH - again. Visited yesterday, found Mil sleeping in the sensory room. She was on a deep-ish sofa, had once again slid so far down in the seat that her bottom was only half on the edge of the seat cushion, and her neck was bent forward at what looked to be a pretty uncomfortable angle. No cushions. I could hear her wheezing as I walked through the door. What on earth do I have to do here, folks? Its a really simple request, and one that's been made purely on the basis of Mil's comfort and safety. And its become a major issue only because the staff just don't give the cushions to her. I didn't even trust myself to speak or complain, I was just so angry, but what I did do is take out my phone and take a photograph. And I decided there and then that in future, when I visit if she doesn't have the cushions, I will take a photograph each time, to document how often they are being used. The next complaint - if I have to make one - will be in writing, with photographic evidence. I also noted that although she had her own trousers on, the top she was wearing was (a) not hers, and (b) a pyjama top - that's maybe not major, but on top of the lack of cushions, it really irked me.

    The message has obviously been given to the staff, because within a few minutes of me arriving, one came rushing in, gabbling about how Mil had 'had her cushions all day, and wouldn't you know it, the first time she doesn't have them, you turn up!' Yeah - right! What a coincidence. I didn't even answer her, just sat whilst she prattled on. She went and got the wedge cushion - no sign of the smaller one that goes under Mil's thighs. Whilst she was off getting the cushion, another staff came in and I asked him could he hear how bad Mil's breathing was? Yes - it sounded pretty bad, he agreed. I said I'd mentioned she sounded wheezy on my last visit, and asked had she seen the GP? He didn't know. He would go and fetch the nurse.

    Off he went, and once the wedge cushion at least was place, and MIl sat upright, there was an immediate improvement in her breathing, though it still wasn't right. The nurse came in, then hurried off to get Mil's inhaler. Using that made a further improvement. Chances are, its the COPD or her heart causing the wheeziness. And if that's the case, it provides another reason why the cushions matter - sitting upright, her breathing is easier for her, and she definitely has less difficulty talking, she doesn't have to stop to catch her breath. So it matters. And if I hadn't visited would she have been sat upright, much less been given the inhaler? I'm not sure that either of those things would have happened, without me being there. That is really worrying. And no, the GP hadn't been called, so also there is a chance that she has another chest infection, it hasn't been ruled out. Calling the GP when there is the possibility of an infection is more about making sure she is comfortable, in my books. And I've made that very clear, as has OH - any treatment is to primarily ensure her comfort and lessen agitation. The GP should have been consulted for those reasons alone.

    The staff who had fetched the wedge then proceded to tell me that Mil had had a 'bad' morning. Another meltdown. Banging on doors, tables and windows, screaming and swearing. She had slapped/scratched 2 or 3 staff, and thrown a cup of tea at another. (Yet another reason why the GP should have been consulted - if she has an infection, it will impact on her behaviour). I guess that explains why she was alone in the sensory room - would have been perhaps a good idea if, however, they had actually turned on the pretty, calming lights and music in there too? Once that staff left, 2 more popped their heads in in the following 10 minutes or so, each one with a tale of how much better it was now that they are 'using the cushions all the time'. It was a little OTT, and all the more unbelievable for that.

    Mil herself was really calm and in a pretty good mood, very chatty. She stunned me (again) after several minutes of the usual disjointed conversation, by suddenly calling me by my name. A lot of her speech was impeded by the odd repitition mid sentence, and by some sentences that were just gobbly-de-gook, though. At one point she turned to me and said 'Oh - me tangled is may'. She must have taken in the confused look on my face, because she then used her hand to gesture in a circle around her own face, repeating the same phrase. I have no idea what that - and several other phrases she used - meant, but she was satisfied with my response of 'Oh - really?', thankfully. Other things she said were crystal clear, however. She pointed to the light tree in the room (not switched on) and told me that it was 'very expensive'. She also mentioned her grandson and was at pains to tell me that 'His little lad is very, very little you know' (?). For some reason, she was also very keen to know how much eggs, chicken and bread cost. When she said something about how she had been singing, I got out my phone again, and started playing her some songs that I knew she used to like. We started with 'Paddy McGinty's Goat', and moved on through the Dubliners, then songs from the 1950's. And she made a darn good attempt to sing along with them, gripping my hand and bouncing it up and down in time to the music. It was really nice, because she was showing such pleasure in it. She even commented - with a wicked twinkle - that Bobby Vee was 'very hansome', whilst listening and singing to 'take good care of my baby' :D

    After about an hour, there was another annoyance, I'm afraid. There is a new-ish staff there, who neither OH nor I can take too. She makes a bee-line for Mil, when we visit and she is on-duty, and goes on and on about, basically, how good she is to Mil and how much she does with her. She doesn't stop for breath whilst telling us how Mil has said this to her, or done that with her - and some of the tales are quite frankly, not one bit believable. She also really gets into Mil's space, leaning in for hugs and kisses, all the time. Affection shown to Mil is lovely - but not when its just for show. Yesterday, she asked Mil repeatedly for a kiss - Mil told her NO each time, and still she eventually grabbed Mil in a hug, pulling her up close and demanding a 'little kiss, come on' - I nearly howled when Mil 'gobbled' at her cheek, in an obvious attempt to bite her! The staff then started on an unbelievable tale about how Mil had 'put the wedge round her neck and chased me all up and down the corridors, pretending she had a snake and hissing at me and we had to kill it and turn it back into a cushion' . Yep - Mil, particularly with her current breathing problems, is more than capable of chasing staff for a prolonged period of time, and of engaging in a joke for that same period - NOT. In the end I cut across her and asked her to fetch Mil a drink, to get rid of her. I think I may have been less than subtle - we didn't see her again. Mil didn't get the drink I'd asked for, either.

    I stayed for about an hour and a half. Good to have such a nice visit with Mil, but I was really angry over the lack of cushions, her breathing, the pj top - and the stupid, attention-seeking staff.

    I think maybe that OH and I will visit again today. I'm not looking for a row, but this has gone on long enough and I think I need to be keeping a much closer eye on things for a while, at least.

    Any and all suggestions about how to finally sort this issue with the cushions will be gratefully received - other than escalating it with a written complaint, I honestly don't know what else I can do!

    Love to all, as always xxxx
     
  12. Slugsta

    Slugsta Registered User

    Morning all,

    Oh Ann! I share your absolute frustration at the fact that the cushions are still not being used and really can't see any way forward other than a formal complaint :mad: Maybe someone wiser (and less hot-headed :oops:) than me will be able to suggest something.

    The new staff member sounds a liability! Forcing someone into physical contact, as she did, is actually abusive, so I'm rather afraid I would probably be having a word about that too.

    I know we have spoken about how reluctant we always are to 'make waves' especially when you know that MIL's behaviour could result in you having to move her, so I really understand your reluctance :(
     
  13. Spamar

    Spamar Registered User

    Oct 5, 2013
    5,873
    Suffolk
    Well! I’ve never come across a staff member like that, thank goodness! Need to have words about her training, at the very least.
    So, when they see you, the staff remember the cushions! How convienient! As it’s impacting on her breathing, everywhere mil is, the cushions should be as well! Good idea to visit more frequently.

    Well, I think I’m a little better. I guess solid food helped yesterday, though breakfast today was pineapple and pills! Now back on my normal hanful of pills rather than ABs.
    We had a bit of sun this morning, now it’s gone again☹️☹️

    Have as good a day as possible, folks!
     
  14. carolynp

    carolynp Registered User

    Mar 4, 2018
    247
    Western Australia
    Oh Ann this is all just so awful, awful, awful!!!! The staff sound like something out of a comedy series: a black comedy. Especially them all coming in talking about the cushions - and then the new one, who HAS to be crazy surely? Sorry I know that is rude, and politically incorrect, of me. I find it so hard that someone who offers so much help to others, on TP and in life, is forced to go through all this. And as for the calming room, no lights no music! Forgive me but isn’t it then just a room? No calming about it!

    I’m watching a Monty Python doco on Netflix and this whole narrative reminded me so much of that style of behaviour, except the odds in real (CH) life are so much more serious.

    I think you are doing all you can. I think your approach, if I were to try and sum it up, is three pronged. It is: (1) to do all you can to alleviate the inadequacies of the CH staff in caring for your mother in law, (2) to try and minimise the effects of those inadequacies on her wellbeing - and (3) to stay calm and reasonable for her sake - despite overwhelming odds against doing so.

    I think what you are doing is right, and wise. I don’t think there’s anything more you COULD be doing.

    It’s worth noting, though I don’t want to do a Pollyanna here - that your approach has worked insofar as the staff are now REALLY REALLY AWARE about the cushions and what they should be doing regarding them. No, this awareness hasn’t yet translated into actually DOING what they are supposed to. But their awareness, thanks to your gentle pressure, is FAR more than it was even as recently as a week ago.

    And you can’t risk alienating them, as Slugsta says, so your hands are tied. From the perspective of someone far, far away, as I unfortunately am, they sort of sound bumbling but well meaning. Inadequately supervised, no follow-through - but not nasty or wicked. They don’t quite sound hopeless to me, or venal, despite the whopping lies. I think you are approaching them in exactly the right way and you are being respectful of them and their duties.

    Love and hugs from Carolyn. xxxxx
     
  15. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    3,777
    USA
    I am so not caught up, so please, everyone forgive me if I don't respond to you.

    Ann, I wanted to say I'm sorry to hear about the cushion situation, the annoying carer, and your reaction to all of it. It has got to be hugely upsetting and I am so, so sorry.

    First of all, you are right to be concerned about her breathing, and to ask them to get that sorted ASAP. Given MIL's health history, it is nothing to take lightly and if she is working on another chest infection, it's going to make everything worse, as you noted. I wouldn't hesitate to ring and keep after them about that.

    As far as the cushions go, well, I wish I had brilliant advice. I have loads of sympathy for you because the feelings of uncertainty and not knowing how to bring things up, is exactly how I feel when there is an issue I might want to raise at my mother's care home. (In the main, they are great, but there are times, and I never know what to let go and what to do something about, if that makes sense.)

    I received some very good advice from two nurses at an Alzheimer's Society workshop I attended recently. (One is a younger nurse who works for the AS and is also a hospice nurse, and has worked exclusively with a geriatric/dementia population, and has also been a carer for several family members with dementia. The other is a more mature nurse who has always worked, again, in geriatric nursing. She was the carer for her mum with dementia, is a teacher at a nursing college locally, and works for the AS. They have a wealth of experience between them.) There is a member of staff at my mother's care home, who absolutely rubs me the wrong way. It is as if she has no dementia training and no common sense! I have seen three incidents, none of them putting anyone in physical danger, but with which I am uncomfortable, and one which made my mother agitated.

    I told the AL nurses about the incidents I had witnessed with this member of staff and they both immediately and unhesitatingly told me to raise my concerns with the care home. They specifically suggested that I document as much as I could, in writing, but that I didn't need to supply that to the care home--more to have it for my reference. They suggested a private meeting in person, with the care home manager. They also praised me for caring enough to raise concerns, and encouraged me that is is okay to speak up, and also reassured me that my mother won't suffer any negative consequences, and that this won't damage my relationship with the care home. I have to say this was all very helpful and encouraging. I am sorry to witter on so much about my own situation, but hope it will give you some reassurance that you are not crazy or in the wrong, to be so concerned.

    If I remember correctly, you had a good interaction with the manager or head of staff, when you raised the cushion issue, yes? I find that encouraging. I am also encouraged that the staff are now more aware of MIL's cushions and the need to use them. It's not the result she needs (cushions used all the time without fail), but it is a positive step in the right direction.

    I think it might be useful for you to document your concerns, for two reasons. One is to keep things straight and to have a record, and the other is that it might make you feel better. You don't have to do anything with that letter/email/piece of paper other than to have it where you can access it. So that is my first suggestion.

    My next suggestion is to schedule a brief follow-up meeting with the manager/person you talked to before, say in a couple weeks' time, to discuss how implementing the cushions as part of MIL's care plan (or whatever jargon they use) has been going. That way you have something on the calendar, the care home know you are watching the situation, and you will feel you are "doing" something.

    The cushions are important for so many reasons, and I would add those to your document as well.

    You are well within the bounds of reasonable response to be concerned about the care home using the cushions as consistently as possible. There is nothing wrong with you getting upset, when they do not, and bringing it to their attention.

    I also think it cannot hurt to step up visits by you and/or Mister Mac. They don't have to be long in duration, just popping by is fine, and make it as irregular as you can, to get the most information about different times of day and so on. I'd add all your visits and your findings to your document as well.

    I wish I had a lot of other brilliant ideas for you, but I don't. I am sure this is very worrying for both you and Mister Mac, and I am sorry.

    As an aside, I think that part of the feelings of unhappiness/anger/frustration/whatever, at least for me, are about letting go and having the care home be in charge of certain things. As ridiculous as it is for me to think this, because I was never the live in carer for my mother and never managed to manage things for her from a distance, there is sometimes a feeling of "if I were here I could make sure this happened" or "if I brought her home to live with me I would be certain that that never happened" or similar. It's not realistic, because her living with me and me caring for her 24/7 is not feasible, but there is still that little jolt of thought that "I could do better" or "I would get this right." Realistically, I know my mother has overall very good to excellent care, the staff are mostly great, they really care about her, she is safe and as content as the dementia will allow, and so what if she is wearing her friend's sweater? I think that I often mistake/confuse/conflate the indignities of the dementia, with the care home. If my mother lived in a different care home, she would probably be wearing someone else's clothes there, too. If my mother lived in my house, she would probably be wearing my husband's clothes, or mine, or both at the same time! Even a one to one carer can't stop dementia from doing dementia things, and I know that, but....there can be that unhappy feeling when I walk in and something is not right. I mainly limit my comments and complaints to health and safety issues and try to let everything else go, but IT IS NOT EASY, and, dear Ann, I expect you feel the same way.

    Sending loads of ((((hugs)))) and wishing we could all organise a rota to go and check on MIL's cushions!!
     
  16. Slugsta

    Slugsta Registered User

    Amy, you always speak so much sense, always tempered with compassion! The only thing I can think of to add to what you have said is for Ann to make a note of staff on duty when she visits. Not to start a 'Witch hunt' but to see whether there is any pattern to when the cushions are/are not in situ. This might add to information to be used at a 'follow up' meeting.
     
  17. Spamar

    Spamar Registered User

    Oct 5, 2013
    5,873
    Suffolk
    That’s a brilliant idea, Slugsta!
     
  18. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,511
    Morning all,

    Thank you all so much!

    Slugsta, I thought I might be over-reacting to the OTT staff who insisted on getting a 'kiss' from Mil, but you said what I felt - that forcing her attention on Mil in that way was absuive and totally unacceptable. I thought maybe that I was being a bit 'off' because of my annoyance over the darn cushions (got to the stage where I even hate typing that word, I am so fed up of the whole saga!) but you have reassured me that I was right to find her behaviour out of order. Actually - and I should have mentioned this before - she is the staff who suffered a broken wrist as a result of Mil having a meltdown. It's so bad, but after now encountering her 3 or 4 times, I've come to the conclusion that she maybe got off lightly ! Because I have to agree with Carolynp - her behaviour is crazy! It's extremely uncomfortable to witness, and judging by Mil's reaction on Sunday, it's also uncomfortable to experience. She speaks to Mil as though she were a little kid, repeats things Mil has supposedly said about her or to her (a lot of which just don't ring true), encouraging Mil to agree (when Mil clearly hasn't a flipping clue about what she is blathering about) and relates incident after incident about 'what a laugh' or 'what fun' she and Mil have had. Its just too much, IYKWIM. And all accompanied by demands for hugs and kisses and getting into Mil's space. It feels all geared to try and impress us, not guenuine at all - and I would imagine if she puts on the same behaviour in front of other 'audiences', especially where Mil is concerned, she is going to end up being injured again, because - as Mil's attempt to bite her clearly showed - Mil found her as irritating as I did. Her response to the 'bite' by the way, was to abruptly pull away, then turn to me and tell me that Mil 'always does that - she says its because I'm so sweet, she wants to eat me up!'. I mean - really?

    Amy - thank you, too - as Slugsta says, you always speak so much sense! The comment about never knowing what to bring up and what to let go - yep. Get that, totally. Overall, the care Mil receives is really good - when I read of others experiences of some of what they have had to deal with, with care homes, I usually find myself feeling incredibly lucky where Mil's care is concerned. Yes, the wearing of other peoples clothes really annoys me, but I constantly tell myself that actually, it doesn't bother her, it doesn't cause her discomfort, so its something that I need to get over. It's not important, in the big overall picture. And - unless the clothes they have on her are too tight, or hanging off her - I don't ever say anything, even if I am most definately thinking - as you say - that if Mil was still with me , that wouldn't happen! It really isn't easy, beause in an idea world, dressing someone in somebody elses clothes would be seen as undignified and unacceptable. But the CH world is not an ideal world, and I have to keep telling myself that.

    I have documented, I guess, all the incidents - on here, mainly. But, it would be a good idea to have everything listed properly, all in one place in a document that I can refer to, if necessary, for if I need to speak to the manager again. For example, Mil's breathing hasn't been right the last two visits, and on both occasions, I've suggestd that consulting the GP might be a good idea. I wasn't able to get to Mil yesterday (hoping to squeeze in a visit today) but if there is no improvement on my next visit, and the GP still hasn't been contacted, having a record of me raising the issue twice already, along with a note of who I spoke to, would be helpful.

    The idea of a follow up meeting is good. When I go today (work permitting) I think I will try and arrange that. As you say, it won't do any harm for the home (and staff) to know that I am still keeping an eye on the situation. I also think Slugsta's idea of noting what staff are about is a good one - not that I know all their names, though - none wear name tags (for H&S reasons, I guess - the residents would find them a handy item to get hold of!) so even now, with some, although I see them regularly, I don't always know what they are called! Thats something I need to rectify.

    Its difficult to put into words why its so hard to deal with issues like this, when they occur. You worry that you are over-reacting, or being unfair. If what you are concerned about is petty. You worry about damaging your relationship with the CH and it's staff, if you complain. You do worry - though I take on board the reassurances given by the experienced people that Amy spoke to - that it will impact on your loved ones care. I also worry - as again, Amy put into wise words - if maybe it's me, having trouble 'letting go'. You don't want to be one of those relatives who is 'always' finding fault. When you find a good CH, you end up feeling so grateful that you then feel guilty for complaining - it's wrong, because whether your loved one is self funding or not, the CH's are being paid a huge ammount to provide care, and if it falls short, then you shouldn't feel bad about voicing concerns. Gratitude for basic, decent care shouldn't be a factor. And - of course - you also have the responsibility of doing what is really best for your loved one, and if you don't speak out, then the GM steps in.

    Reading your responses, I am reassured that I am right to continue to push for the cushions to be used for Mil. For the sake of her physical comfort, for her safety, to allow her to eat - and as Spamar says, Sunday demonstrated to me that whether caused by infection or her existing health issues - because using them helps her breathing, which by itself is reason enough. I'm hoping that - as Carolyn and Amy point out - because the issue now clearly is on the staffs radar, that using them will become automatic. But if not, then I will just have to keep pushing. As for the OTT staff - I think I'll start there by asking her politely and firmly to back off if she starts with Mil again. If that doesn't work, I'll have a word with a senior. I thik thats the right thing to do - Mil's agitation and meltdowns are a major concern, any behaviour from staff that could potentially exaccerbate the liklihood of Mil blowing is an issue that also needs to be dealt with.

    Whew. Thank you - I ahve things so much straighter in my mind now!

    Spamar, Carolyn and 2 jays, hoping that you are all on the mend, and that, Slugsta, your tummy has settled too. JM - hoping that you are feeling better about posting soon, hun - and that all is otherwise OK with you. Red, hows your gorgeous granddaughter doing?

    I'll let you all know what the cushion situation is after the next visit - fingers crossed everyone, please - it would be lovely to walk in there and find Mil sitting upright and comfortable!
     
  19. annebythesea

    annebythesea Registered User

    Ann, I think your last sentence speaks volumes. How long is it since you bought the cushions (in consultation with the CH no less) and you have not yet ONCE 'walked in and found MIL sitting upright and comfortable'. Absolutely disgraceful. Keep up the good work, they are messing with the wrong relative! Which always reminds us how many people do not have someone like you on their side.
     
  20. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,036
    Female
    Greater London
    Hi @Ann Mac
    Sorry for crashing in.
    A suggestion re the cushions, it does make me cross, when you’ve asked so many times. I recently visited a home and saw a whiteboard in one of the residents rooms which had a written reminder to the carers, ‘Dear Carer please give me a bath on Monday and Thursday. Thank you Gladys’ it struck me when I walked by the room, so stood out well.
    A whiteboard may not be possible but a laminate or picture frame with paper inserted to remind them about the cushions, it’s not like you are asking the impossible.
    This idea may have already been posted, sorry.
    I so agree with keep reminding them. I’d have to say something about the weird carer. It’s not being rude just assertive and caring, probably in the carers best interest to be warned to back off!
    Have a good day. X
     

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