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  1. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,596
    Hampshire
    Good to hear from you JP, but sorry you are finding things so tough. I really hope you are doing some nice things for yourself, maybe in time some focus on treats or things that you enjoy will start to ease your pain. Mums are precious, it's hard when they are no longer with us.

    Amy - good idea about the hairdresser, but no other hairdresser will do - only the one back where I used to live, and that means an hour's drive!

    Based on what happened today, I think it will be possible to get mum into the car. The physio brought a walking frame with her today and we had mum walking with it! She was a bit 'clumsy' and unsteady with it as it's the first time she has ever used one, but she did well. I really can't quite believe how she has bounced back after the stroke. Maybe part of it is that she has no idea she was incapacitated by a stroke, so still thinks she can do everything as before? Maybe that helps somehow? The physio says that the fact she wants to do things, and can follow instructions, helps a lot. Amazingly, mum's toileting situation is improving too. I can get her onto a commode now. She seems to have some control back, though she is just being treated for an infection. I don't know exactly what kind of bladder infection it is, but the antibiotics seem to be working very quickly.

    The last three months have been horrendous, so much bad stuff - the stroke, the pressure sore (which has nearly healed as well!), no mobility, really awful toileting problems, the world and his wife coming and going. It's a surprise I didn't go totally mad with it all, but somehow I didn't. I've cut the carer calls this week as well, weeks and weeks of having my life dictated by all these calls has been really hard. It means I have to do a bit more myself, but it's worth it!

    All the best to everyone.
     
  2. Harrys daughter

    Harrys daughter Registered User

    Jul 12, 2016
    385
    I carnt put my feelings any better than jp you have written this like it was dictated from me marine I feel counciling isn't for me what this is I'm going through is only grief......i say only to try to bring it into context if that makes sense but when the end comes it's so final and the guilt is emence it was 1yr on sun 26th and I filled my day with my kittens as CAESAR arived late on the sat tea time I will try to post a few photos

    Please keep posting marnie it's good to read your mumsgreat progress
    Lavender your battle continues my heart is with you also rosy hope to meet up in the new year xxx
    Love to all new and old had enoughers xxx
     
  3. Harrys daughter

    Harrys daughter Registered User

    Jul 12, 2016
    385
  4. Harrys daughter

    Harrys daughter Registered User

    Jul 12, 2016
    385
    20171203_181138.jpg butter wouldn't melt
     
  5. Harrys daughter

    Harrys daughter Registered User

    Jul 12, 2016
    385
    photo_editor_1512297718324.jpg beautiful lalaa not impressed with kits
     
  6. Harrys daughter

    Harrys daughter Registered User

    Jul 12, 2016
    385
    20171203_105154.jpg Tyrion has turned into a Kevin the teenager
     
  7. Pollytickle

    Pollytickle Registered User

    Nov 15, 2015
    760
    Evening ...

    Hope you're keeping warm & well; it's flippin ' freezing here :confused: but only wet at the moment...

    Thankfully Mum has settled in to her new surroundings - or should that be appears to be comfortable with her lot. To be fair her CH doesn't come across like those you see in the scary 'tell all' TV programmes, rather the residents can move around freely & are treated with respect & dignity. Visitors are welcomed & encouraged to join in the various activities - tomorrow they're decorating at least 8 'lounges' with a mix of fresh & artificial trees - while other delights involve school, church & amateur choirs visiting to perform carols & festive songs, & one afternoon they have a magician :)

    The way her face lights up, her eyes sparkle & beautiful smile, when I visit melts a tiny edge of the guilt I still feel for not being in a position to look after Mum myself :( but in trying to fathom a plan to have her here to share Christmas lunch has reminded me of the pure logistical nightmare that would be. Front door & porch were bad enough with a pushchair & there's barely room in the downstairs loo for an able person to do what has to be done. If we managed to get Mum & her wheelchair inside, the narrow doorways would mean having to eat in the hall, & spend our time moving around like the pieces in one of those square puzzles where one tile is missing. This house was built in the 70s so goodness knows how people cope in newer constructions cuz all the ones I've seen are even smaller :eek:

    Right-o...I've got an early start so gunna head up the wooden hill to Bedfordshire:oops: If I don't get back before the 25th, my Wish to you All is for Peace & strength of character, for you & your families x
     
  8. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Good morning one and all!

    It seems like ages since I posted on Had Enough, I just didn't feel like it some how, no really good reason, just a bit blah.

    Mum is doing OK. The consultant finally did her medication review yesterday and she is taking away one of mum's 4 doses of respiridone and will carry out a telephone review with the home early in the new year to see what if any difference it makes.

    I said mum is OK, she made progress actually. Last Thursday when I was there with my cousin and his wife mum was sitting really upright after weeks of slouching and dramatic leaning. The vacant look was missing from her eyes and it was a lovely visit. She'd also seemed really contented. We seemed to have it cracked!

    Over the weekend I went and picked up a cold and I deliberately didn't go in. Mum doesn't need a cold whilst she's still recovering from pneumonia. I called and got the usual she's fine reassurances. I did go in yesterday for the medication review quite selfishly it was my opportunity to quizz the consultant over diazapamgate! (there's my new made up word for the day). More about that in a bit. Mum wasn't OK over the weekend and continues in the same vein. She's found some of her aggression. She's been lashing out, accusing staff of harming her and verbally abusing other residents. She's also been trying to slide off her chair with a view to putting herself to the floor. All behaviours we haven't seen since the pneumonia took its grip. The home say she's less of a risk now simply because she cannot run after people to attack them.

    Talking to mum's one to one I suggested that as mum has recovered from the pneumonia she's found some energy allowing her "usual behaviours" to reappear. The one to one thought this unlikely, she said they'd been checking for a Uti or a chest infection, but there's no evidence. Funny thing is the consultant told the one to one the same thing as me. In all likelihood as she's now got some energy she's become a bit aggressive again (nothing like as bad as she was though). Time will tell. In a very twisted way I'm happy to feel mum's become a bit feisty again. It's normal for her. The passive old lady she's been for weeks had its upside, but it meant a progression in the illness at least it looks like it was just having zero energy and with her strength slowly returning following on from the pneumonia her character and traits are returning. The consultant suggested that even her mobility could improve in time.

    So those are what I consider to be the good bits. Now for some of the less positive stuff. The physio visited the home around 10 days ago. I have been petitioning the home to try to get mum even a little mobile. If she could manage to get to the bathroom with her walker it would be fantastic rather than requiring a standing aid and 2 staff to operate it. The home claim the physio saw mum, but cannot tell me what she said and no notes were written up so we have to wait for her next visit. Staff thought this acceptable, I didn't and I've complained. No write up whatsoever, who's to say the physio so much as put her head around mum's door.

    I'd heard nothing from the social worker in 6 weeks regarding the safeguarding investigation so I called the contact centre (the social worker doesn't give out her direct line). The investigation has been partially upheld and has been closed as complete at the council's end though the incident has been reported to the CQC who will decide if they want to take any follow-up action. The home has had a tap on its knuckles and has been told to improve it's record keeping. I'm not sure what I think about that, I'm still mulling it over.

    Now the diazapam situation. I made absolutely certain I spoke to mum's consultant yesterday and I asked her about when and how she'd prescribed diazapam. She told me she prescribed 2mg of diazepam starting from mum's move to the home. As mum's behaviour was appalling the home had the consultant in 2 days after she moved to the home and she added a further 2mg to be available as a PRN. The home has lied. The home have told the social worker, the safeguarding nurse and myself that mum was admitted to the home with diazapam as two standard doses a day and that this became one 2mg dose and a further 2mg as a PRN only after the consultant visited. The home has claimed that their error was in not updating their records quickly enough to reflect the change meaning that mum continued to have the second dose daily rather than as PRN. I questioned why if mum's behaviour was so bad the consultant would effectly reduce medication and got poo poo'd from all sides, but I was right. To me this is a cover up. Mum started on 2mg and the consultant made a further 2mg available, it was an increase and perfectly understandable. There was no mistake in changing a frictional second dose from standard to PRN. The 2nd dose didn't initially exist. The issue is as I suspected the fact that the home popped the second dose in daily for weeks with no record of why they were doing it. Their own record charts require them to state why a PRN was used and sign off on it. They failed to do this and were administering the second dose daily even after the pneumonia when mum could barely hold her head up. It's just wrong. I don't think for a minute that mum's come to harm, but I'm meant to put my trust in these people. I'm going to struggle there.

    This leaves we with a dilemma. The social worker has always been eager to reduce costs and place mum in a cheaper setting. 117 funding is fantastic, but a duel edged sword as the social worker has made it plain all along that she's in control not me. For a control freak like me that's not a natural state of affairs. When I spoke to her on Monday I asked her outright if she intended to move mum as she is now immobile. Her criteria for moving her was if she's bedbound and not aggressive. She said mum would only be moved if I want it. She said if I wanted her moved she'd put mum out to tender and that I would then have to decide which of the homes I wanted based in who bid for her. If I want her to remain where she is she can. The home and the consultant agreed yesterday that it's my decision where mum resides. What do I do? When the home is great it's great, but they were over medicating mum and continued to do so even after I complained. They only stopped when I made a heck of a fuss. The beauty of the one to one is that they have to complete an hourly behaviour chart so it's evident that the 2nd does wasn't necessary 99% of the time in question. Even now reporting is poor with nothing recorded from the physio as I've said. I don't trust them, but if the social worker put mum out to bid I'm imagining that the only homes which will bid are those with vacancies. From my trawling of homes I know the vacancies exist in some pretty ropey homes. The good ones have waiting lists. In particular vacancies seem to be in homes which are part of a very large chain. I've even heard two ladies sitting on a bus discussing how bad one of these homes was and believe you me the CQC reports both current and historic bare those out in my area. They are very familiar with the words inadequate and special measures. There are 2 really fabulous homes on Liverpool which I would quite literally kill to get mum into, but they have substantial waiting lists. I'm clearly not the only one who likes them. I cannot see why these homes would bid for mum when they have lists of people already waiting. I'm my eyes only those people aren't so keen on have vacancies and surely they would be the bidders. Would I be creating an out of the frying pan into the fire situation? Possibly if not probably. Should I leave mum in a home 5 miles from me (requiring 2 buses) and continue to be very vigilant, which is exhausting to be frank, or trust that I could get her closer to home and be able to keep an eye on things easier and that things would be OK? Talk about Hobson's choice. I have to get this right. If I don't it's mum's safety and her health on the line.

    To finish on a more positive note I got a thank you from the home for intervening and making the consultant visit earlier than she wanted to and a compliment from the consultant who said no one could do more for mum than I've done.
     
  9. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,279
    Female
    Blackpool
    How right the consultant was Lavender nobody could have possibly done any more than what you have. Big decisions again for you to make but I'm sure whatever you decide you will make it work for your Mum. Xx

    Marnie your Mum is doing fantastic all down to your caring I'm sure.

    PT good to hear from you and read that your Mum has settled in to her new home. Get rid of that guilt monster you did what was best for your Mum and are still continuing to care for her just in a different way.

    Jorgie and Harry'sD thinking of you both as Christmas approaches as I am of all our little family on this thread old and new and yes Jorgie we will keep the thread going.
    So looking forward to our meet up in the New Year
     
  10. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,596
    Hampshire
    Good to hear from you Rosie and hope you and your mum are OK.

    Lavender - what a saga. I'm with you on the 'control freak' issue. That's me as well, and I really struggled when the responsibility for mum was out of my hands (mostly in hospitals but also 10 days in a 'care' home once!). It must be difficult to know what to do, and when in doubt I guess it's probably best to stay with what you currently have. Maybe easier to try to sort the issues you have with the current home, rather than possibly end up with new issues at another place? Would it be worth putting your mum on one of those other long waiting lists anyway? Would the Social Worker allow you a choice under 117 if a place came up?

    PT - good to hear your mum's care home is proving to be a success. It sounds very good and I'm pleased your mum seems settled.

    Best wishes to everyone else, hope all your Christmases are good, or at least bearable.

    Things are a bit more settled here and, thank God, I feel a bit better in myself again. I don't want to go back to that very dark place I was in a few weeks after mum's stroke. I think there was just so much going on, so many people at me all that time, and of course all the new challenges with mum to deal with - it's a wonder I didn't go totally insane! In fact I felt on the brink of it a few times. Talk about character building stuff!!

    Mum is now (possibly by some minor miracle?!) walking with a frame. She suddenly seemed to make good progress very quickly. I still use the stand aid and wheelchair, but for the past couple of days she has been moving around the house with a zimmer frame. I have to walk with her and make sure she keeps her balance, sits down properly when she gets to the chair/toilet, etc. but she is walking. With the frame I can now get her into the bathroom and onto the toilet, though we still use the commode in the bedroom. Incontinence is still a big issue, but made slightly more manageable by her being able to stand and walk. I think the progress is mostly down to her and my determination, but I also have the physio to thank as she has not been as 'cautious' and, in my view, as haphazard in her approach as the NHS ones. We are waiting for a further referral for NHS physio with a 3 month wait! In the meantime the private one comes once or twice a week and observes mum, does various exercises with her and generally gives her professional view on how we should be proceeding, which is exactly what I wanted. Good on the care agency for recommending such a good physio. The care agency have also come up trumps in recruiting two more carers who speak one of mum's main languages. One was here tonight and has such a nice, gentle and friendly way with mum, chatting away to her much as I do, as we do things. Again, in all of this dementia mess, at least we are blessed with this.

    On the downside, I keep getting severe attacks of sadness these days. Sounds dramatic (!) but it seems to hit me out of the blue and I'm suddenly crying. I was never one to cry easily before. The sadness is very, very painful. Quite often it's set off by some heartbreaking comment mum makes. Today while out shopping I headed off to the individual cards in M&S intending to buy a 'Happy Christmas Mum' card, but as soon as I picked the first one up, I almost dissolved into tears. I had to hide behind another card display to compose myself! Last weekend I put up the Christmas Tree, mum doesn't really notice it, but here it sits, all lit up, totally unaware of the hideous disease taking hold of my lovely mum. Mentally she seems not much worse than before the stroke, maybe a bit quieter, just a little bit different. She still smiles and laughs at my silly jokes, I suppose that's something. I've managed to get her into and out of the car a few times with the physio and tomorrow am planning to take her out for a while. I will be taking the wheelchair we've been loaned by the NHS, I just about managed to lift it into the boot of the car!
     
  11. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    Hi
    Tears of joy here. So happy your Mum has picked up somewhat.
    Sorry i’ve not posted, I do think of you, if only we could do mind reading, time just runs away.
    As always hats off to you, you have shown amazing care, just outstanding. XX
     
  12. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    @Lavender45
    Good to catch up, defo need for control, you are not a freak, in this it’s she who shouts loudest gets what is needed.
    I’m wondering if you could do the Home visits ahead of social services going out.
    You know pop to the chosen homes suss them out, see how the land lies with taking your Mum. Sadly it is often the person that is up front and visible that gets what they want. It may go against ‘process’ and they have said it’s your choice so you’d only be considering options, I’d say I was only trying to help ss o_O
    Hope you are feeling better this pesky cold / cough just seems to drag on and on. X
     
  13. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    Good to have a quick catch up on you both @Lavender45 and @Marnie63 .
    What a saga, Lavender, but they are right - no one could do more for their mum than you're doing.

    Marnie your feelings of sudden, overwhelming sadness sound a bit like a type of post traumatic stress reaction, which is completely understandable, with all that you and your mum have been through. I'm sure you are exhausted too. Try and get as much rest as you can.
     
  14. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    1,985
    YORKSHIRE
    Hi Ladies,
    Just popped in to see how you all are.
    I am thinking of you and as always your all amazing in what your doing. Hope the Christmas time is peaceful for you.
    Hugs to you all xxxx
     
  15. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    1,985
    YORKSHIRE
    Wishing you all a peaceful Christmas to old friends and New.
    Big group hug all around xxxxx
     
  16. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,279
    Female
    Blackpool
    Hi all you lovely TP members Just wanted to wish everyone on this thread "A definite life line for me "A Very Merry Christmas and a Very Happy, Healthy and peaceful 2018 for both yourselves and your loved one's.
    Lets' Hope we can get through the holidays and manage to enjoy it as best we can. Xxxx

    My poor Mum had a fall yesterday, happened in a second and she banged her back on the sofa so has a bruised or could possibly be fractured rib halfway down her right side of back so has been in a lot of pain. The only course of action is pain relief and trying to keep Mum as settled as possible.
    Poor Mums not a clue why she's in pain so at the moment having to lift her from bed to commode, back to bed then wheel her to her chair for a little while but it' a nightmare lifting her to wherever with the pain. Just hate to see her shout out in pain.Im praying it soon starts to heal.xx
     
  17. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,596
    Hampshire
    That's sad Rosy, your poor mum. I hope you're able to ease her pain a bit so she's more comfortable. I'm terrified of falls now with my mum as she's so unsteady after the stroke, with serious balance problems. I really, really would not want her in hospital again, if I can help it, but if she breaks something, well, I guess she'll have to go.

    I had a really horrible day today. I got up early as normal this morning to get mum onto the commode and then back to bed, so that I can have my morning cuppa in bed and listen to the radio (to at least keep up with what's going on in the outside world!). Changed mum's pad and decided to use a small pad until I got her dressed later. That was a big mistake, an hour or so later she and the bed were all wet. Everything had to come off the bed and off mum and I had to give her a good wash all over. Then I had a brilliant idea to go to M&S for a few more things for Christmas. Went through the major operation of getting mum into the car (frame, struggle through front door, rollator to car, help her in, etc.), got to M&S, pulled out the wheelchair and then realised I had left the cushion at home! Folded wheelchair back up, back into boot, back home for cushion. Just as we pulled up on the drive, mum said she needed the toilet. Got her in (another major operation, in reverse), on loo, everything wet again - trousers, top clothes, it had even soaked through her jacket! She had been wearing some quite 'industrial' pull ups, so I have no idea how that happened, but it did. Off everything came again, another all over wash for mum, just to be on the safe side. Major operation back to car again, with mum now dressed in some jogging type trousers that I would normally never take her out in, and another jacket, which used to fit, but which is now really huge as she lost so much weight with not eating for so long after the stroke. Back to M&S, parked up. Struggling to get mum out of car and into wheelchair and, bless him, a youngish guy rushed up and asked if he could help, so he helped me get mum into the wheelchair (hooray for helpful strangers). I then wheeled mum around a very busy M&S foodhall in a wheelchair, with one of those enormous shopping trolleys attached to it. It did part the masses quite well, and everyone was very friendly, though by this time I was wondering what had possessed me to go there in the first place. Got the stuff, and eventually we got home. I'm hoping that today was just a really bad day on the incontinence front, maybe just an unlucky day.

    I really get quite exhausted by the end of the day now as every part of mum's day now has to be either done for her, or supervised, but mostly done for her. At least before the stroke she was more independent and more mobile, so I didn't have to watch her and be with her from dawn until dusk. It really is very wearing and such hard work. I was tempted to cut some of the evening carer calls, but I think sometimes the carer being there makes the difference between me staying calm and losing it by bedtime, so the evening carer calls are staying for now! I also find that just having a bit of a chat with them eases my frustrations that have built up over the day, so as well as mum getting care support, I'm also getting some therapy too! We have two main carers that come now, with around four back ups, so it's usually these six ladies who visit, with the odd visit by one or two others when these are not available. The footfall has reduced a bit now as I only have morning and evening calls and because mum's pressure sore has now healed up, the DNs have discharged her. The physio still comes once a week, but that's a very welcome visit as without her support and suggestions, I don't think I would have got mum on her feet again - she's now walking around the house with the frame, but has to be followed and supervised as she sometimes loses her balance, or gets the feet of the frame caught on something. I think in her head she thinks she can walk normally and keeps saying she doesn't need the frame (!), which is even more reason to watch her like a hawk, in case she tries.

    Although I'm obviously pleased mum can walk again, mentally she is worse. The muddlement is worse than before, much more nonsensical at times. Sometimes she will suddenly start laughing hysterically, usually at something on the TV. I don't think she knows where she is any more as often asks if this is a hospital. I think the equipment in her bedroom and the bed may be the cause of that. She seems to be getting smaller. It's all so dreadfully sad and just breaks your heart over and over, every single day. I am still an emotional wreck at times, mostly in the evenings, when I'm tired and at my lowest, but I guess at least crying gets it out of the system.

    I hope everyone has a reasonable Christmas. Maybe 2018 will be better and kinder for some of us?
     
  18. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,279
    Female
    Blackpool
    Oh Marnie I felt exhausted reading your post, you poor thing and sounds like your Mum is struggling. I hope the incontinence today is just a blip.
    Like you I look at Mum and feel sad she's lost so much weight and is very unsteady hence the fall, just so frail. I'm so annoyed that she's fallen I watch her like a hawk never leave her just went into the next room to put the phone on the charger and Mum must have tried to stand up and walk straight after me I really couldn't believe it.
    I too although on occasions feel the carers intrusive I quite like them coming it's a bit of company for both Mum and I and you can off load any concerns with them.
    Try and have a good Christmas and I hope you and your Mum have a peaceful day xx
     
  19. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,596
    Hampshire
    I hope everyone survived Christmas. We had a bit of a drama here with mum getting very constipated (which I described on another thread in more graphic detail!), but after a couple of conversations on the phone with the 111 doctors, we shifted things with two days of Laxido in high dose. At the same time, the urine infection which she had a few weeks ago returned and again, after taking advice from one of the 111 doctors, I started antibiotics again, fortunately having some left over from the last episode. Mum's bowel has been clearing nicely (!) for the past couple of days and today was the first time things seem more settled. I wonder if she is now more susceptible to the urine infections because of the advancing dementia? I also know that they themselves can advance the dementia. She is much quieter now, not talking as much, not really taking much of an interest in anything, but does respond when I speak to her and does still know who I am, though sometimes says I am someone else. The overflowing of pads overnight seems to have calmed now, thank goodness.

    My friend stayed with us for 3 days over Christmas, which was very nice. She did most of the cooking and sorting of the kitchen, which gave me a very welcome break. I cancelled the care calls while she was here and that worked OK. The calls started again last night, so we're back to normal and tomorrow I have the regular carer here for six hours rather than the usual five (the agency added an hour on in the morning - no idea why, but I'm keeping it!), so plan to hit some shops and probably buy stuff I don't need, but maybe it will cheer me up a bit!

    I can feel this caring getting harder and harder now (it's now been two years and three months) and my friend was gently trying to suggest over Christmas that it's OK to 'let go' and consider a care home for mum, but I don't know, I've come this far, and that kind of makes me even more determined to not give up now. I worry about what will happen to mum next though, and whether I will have the physical and emotional stamina to carry on like this.
     
  20. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    1,985
    YORKSHIRE
    Hi Ladies,
    Hope the Christmas Holidays have been kind to you all and everyone had a pleasant time.
    Thinking of you all and hope the New Year will be kind too.
    Big hugs xxxx
     
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