Journeys with my mother.....

Discussion in 'I care for a person with dementia' started by piph, Nov 8, 2015.

  1. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,852
    England
    Sounds like a plan. :)

    It is not cruel to serve meals and hot drinks in another room. You aren't withholding food; just serving it in a more appropriate place. There is a higher risk of choking or scalding in the bedroom. Look on it is a H&S improvement, and sell it to the carers as such if you think they will take the "Ah, bless, where's the harm" POV.
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Hi, pip, and sorry to hear how you're struggling. I think Katrine has given you excellent advice, and I certainly never would have thought of it.

    A piece of very good advice I was given, in the context of dealing with difficult situations and older adults in general, but that has worked well with my mother and the dementia, is ALWAYS PLACE THE BLAME ELSEWHERE. So when your mother complains that you are no longer bringing her meals in bed, and perhaps starts in on you about it, cut that off with, "I know you'd rather have your lunch in bed and you don't want to get up; however, the doctor said you may not eat in bed" or something to that effect. What works best with my mother is to pick a statement and just repeat it, over and over and over again; of course, yours may be different. This helps to keep you from being the bad guy.

    It may or may not work, or may or may not make you feel better, but I figured it couldn't hurt to suggest it.

    You said yourself that you "wait on her hand and foot." Maybe you don't have to be quite so attentive? I'm not criticizing, just wondering out loud. At the end of the day, we all have to do, whatever we have to do, to be able to live with ourselves. But perhaps, sometimes, that cup of tea could wait one minute...couldn't it?

    I also want to say that you're doing a stellar job, don't doubt it for a moment, and I am in awe of you and all the other hands-on caregivers.
     
  3. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    Funny you should both say that - I decided that, as she wouldn't get up at all yesterday, even refusing lunch and dinner, that I would start today, especially as I had a wet bed to contend with this morning (I did expect it as I couldn't even wake her up enough to get her to go to the loo and change her pull-ups at all yesterday evening). She knew her pull-ups were wet, however, as she had put a load of loo-roll inside - this drives me mad, as she as a drawer full of pull-ups so she could easily change them. I did think of putting some in her en-suite shower room, but there is nowhere really as it's tiny, and she wouldn't think of looking in the cabinet behind the loo for them - they have to be in her line of sight for her to notice them.

    Anyway, I digress. This morning when I took her early morning tea (9.15 - early?), I told her I'd spoken to the GP (I could feel my nose growing, Pinnochio style, as I said it) and she had told me that Mum wasn't to have any food in bed at all, that she must get up for it. I said that I'd give her her breakfast (always toast and tea) in bed, but she was to get up afterwards. I said that the GP said that it was non-negotiable, that she wasn't doing herself any favours by staying in bed all day, that she would lose the use of her legs altogether if she wasn't careful, that she wasn't ill, so there was no need to stay on bed all day. Anyway, after all that she agreed. I gave her breakfast and her tablets and left her in the care of OH while I walked the dog and delivered some shopping to my aunt who lives a 15 minute walk away. After staying for a natter and a cup of coffee, I walked home to find that Mum was still in bed. It was about 11.45 by this time. I went in to Mum to ask why she was still in bed, to be greeted by vomit all over the bed, and about 6 hankies that she'd tried to catch it in. I got her out of bed and cleaned up, during which time she vomited again, this time down the loo, thankfully! Changed all the bedding and got her back in, along with a bowl and a towel draped over the top of the duvet.

    Poor Mum, I think it must have been the tablets that did it - there were a couple of new ones which we picked up yesterday from the pharmacy, and I think it was all a bit too much on an empty stomach, although she was eating her breakfast when she took them, but of course she hadn't eaten anything apart from breakfast yesterday. I feel awful to think it was probably my fault, but the pharmacy had put them all in the same morning slot in the dosette box, so I saw no reason not to give them.

    Anyway, I've let her sleep it off today, although I have tried a couple of times to persuade her to have some dry toast to put something in her stomach, she says she can't face anything. I'll try again later, but I think she's frightened of being sick again.
    I'm going to go back to her old tablet regime of folic acid in the morning and donepizil in the evening. The new ones were painkillers for her arthritis, and oxybutinin for her incontinence (neither of which have worked very well in the past anyway, so what's the point in her having them, especially if they are going to make her sick)

    So, they new regime will have to wait a while - hopefully she will feel better tomorrow.
     
  4. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    Just to let you all know that Mum is much better today and has totally forgotten that she was sick yesterday. I got her up, (much grumbling!) showered, and dressed, and she has had her lunch sitting in the chair in her room watching the telly. Seems my thoughts on too many tablets were correct as she has shown no sign of any feeling sick at all today.

    Wishing you all a very Merry Christmas. x
     
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    So glad your mum's not been sick today; that must be a relief.

    Wishing you as Merry a Christmas as you can possibly have!
     
  6. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    #126 piph, Dec 29, 2015
    Last edited: Dec 29, 2015
    We had a quiet Christmas Day, just Mum, OH and I. I had some trouble getting her up as usual, although we stuck to our usual morning routine. At the third time of trying, and reminding her it was Christmas Day, I asked 'Do you not want to open your presents then?' to which she replied 'Oh, have I got any?' 'Of course you have. Do you really think we'd not buy you any? 'I suppose not' she said, grudgingly. OH was quite upset by this, so I called her on it, telling her that was quite a nasty thing to say - only joking she said!
    Considering that she hadn't mentioned anything at all over the previous weeks about getting presents from her to anyone, even though OH and I had been Christmas shopping several times, and I had done presents from her to everyone apart from to us.

    Anyway, she eventually got up and dressed and came into the lounge. I made us all coffee and gave her her presents from us and from her sister who lives locally. OH and I only had our presents from each other. Mum suddenly seemed to realise that she hadn't given us anything, so she then, very grandly, announced that her present to us was to be the deeds to her bungalow (always been one for the grand gesture, has my Mum!) We thanked her, but informed her for the millionth time that she couldn't do it, as she doesn't own it all (40% is owned by an equity release company) which of course she never remembers and doesn't understand anyway! 'Oh well, never mind', says she, and that was that! How she was going to achieve this, even if she had owned it all, is anybody's guess, as she wouldn't have a clue!

    I cooked a full Christmas lunch, but with a large chicken instead of a turkey and she ate more than I did, insisting all the time that I'd dished up far to much for her - she cleared her plate!

    After OH and I had cleared up the rest of the day was spent in front of the telly, watching a couple of films, the soaps and Downton Abbey.

    Boxing Day dawned and OH and I were up early to prepare for our 48hr visit to see our children and grandchildren. This was all arranged before we moved in with Mum, and it was far too late to book her into a local CH for a few days so I had booked the same care agency we had been using previously to come in twice a day to do her meals and tablets and to ensure she was ok. She was quite happy with this, although I was a bit dubious about what state she'd be in when we returned. Anyway, of we toddled, and had a wonderful time staying for 2 nights with DD and SIL and our 3 beautiful granddaughters, with our DS and DIL coming over for Boxing Day, and then a visit to them on Sunday afternoon. I called Mum several times and she assured me all was well.

    We left yesterday morning and drove home. When we arrived home the first thing I did was to look at the carer's log to see if anything had gone wrong - to my horror I discovered that the only visit they had made was on Boxing Day evening - 2 visits on Sunday and Monday morning's visit had not been done! I was LIVID!!!! Poor Mum had been on her own for 36 hours with nobody coming in! All Sunday and Monday's tablets were still there, and Sunday evenings ready meal was still in the fridge. Purely by more luck than judgement, she was fine - not even a wet bed to contend with, but she'd only had crackers and sweets to eat, from what I could tell, and she'd managed to make herself a cup of tea. All she said was that she remembered someone coming, but didn't know when that was, and she thought she'd been on her own for rather a long while! I got straight on the phone to the agency, and spoke to the boss, who said she'd try to find out what had happened. They had the calls booked, and I'd checked twice over the previous couple of weeks.

    She called me back this morning, blaming a computer error, which I knew she would. So I let rip! I didn't give her a chance to come up with more excuses, I can't even remember exactly what I said to her now, apart from it being her responsibility to check that everyone who was booked was on the rota, but I know I made my feelings about their inadequate admin abundantly clear! And I do know I spouted for some time about it not being good enough when they were dealing with elderly and confused vulnerable people. And if they dare charge me for the call that DID happen, then they'll have to whistle for it because I'm paying them nothing! They should be thankful that nothing happened to Mum, because if it had I'd be suing their ar$es off and taking them for every penny they have! I remember I did say that if it weren't for the excellent calibre of a very few of their carers that they'd be out of business as I'd had problems with their admin before. It's a family owned agency, and every time I've telephoned the office there are always children screaming and shouting in the background (others have complained about this, I know from one of the ladies who used to do Mum's calls, and who I've remained friendly with). Most unprofessional, and I told her so in no uncertain terms! She probably called me all the names under the sun after she'd put the phone down, but I don't care! We won't be using them again, and will be looking into respite beds in the local area. It will cost a great deal more of course, but at least I'l be able to enjoy my break without worrying whether Mum is okay.

    So, poor Mum is very confused today, so I've let her sleep and hopefully she'll be okay tomorrow.
     
  7. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    AND THATS HOW YOU DO IT!! Just a thought but have you thought about asking the friend who used to do your mum's calls, if she would be willing to cover very short term breaks for you?
     
  8. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Dear Piph,

    I feel for you I really do, as I'm going through exactley completely the same with my mother at the moment and this January will be very busy time for us as mum is moving in with us, and our place is a mess so we've hired a storage unit to move out our junk and move her in.

    It's a bloody nightmare but it's got to be done, so your not alone hon and I'm totally with you on this one, so you won't get any negativity from me, like your mum, my mum is not ready for a care home yet and she'd hate it and hate me if I put her into one, so it's not an option, and neither is leaving her in that flat on her own when she's going missing as frequently as she has.

    I'm feeling very daunting at the moment at what the new year will bring, but I wish you all the best and look forward to your updates of progress.

    Big hug from me to you

    Take care
    Love Yvonne xx








     
  9. Beate

    Beate Registered User

    May 21, 2014
    11,623
    Female
    London
    I think I wold have risen hell as well. To be honest, I would report them to whoever they are accountable to. They are risking people's lives! Medication and food not given - what if that had happened over a bigger period of time or your Mum was more helpless than she is? Doesn't bear thinking about. I'm glad she's ok.
     
  10. Trickster

    Trickster Registered User

    Apr 9, 2015
    1
    Glasgow
    I have not posted before but have been reading your blog. My mother in law was diagnosed in March and we moved in with her in August. I can really relate to all you have said including the house move aspect, the cleaning, organising etc. If nothing else your posts and replies show we are all in the same or similar boats. I hope all works out for you. We too have good days and bad days. Sometimes it feels like more bad days than good, however once we got here and now were settled trying to remember she she is being better looked after than she was before. Hang in there, look after yourself and your OH.
     
  11. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    That is just dreadful, piph.
    What if your Mum had been unable to reach a drink, or had fallen, or was poorly?
    You ought to report them to CQC.
     
  12. Plymum

    Plymum Registered User

    Jan 9, 2014
    139
    Piph, I sent you a private message.


    Plymum
     
  13. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    Have done so, sleepless. I thought it only right, not that I expect anything to come of it.
     
  14. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    It is a bit daunting, but I promise, once you've made the decision things seem easier. It took us a while to move in, having to get rid of junk before we could bring our stuff in, but we are settled now. Mum doesn't seem much different to what she was before, except that now I know she's at least fed 3 times a day, and clean and warm and safe. Much better than worrying about her all the time!

    Good luck, and I hope the move is not too traumatic for your Mum. x
     
  15. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    I have to agree with all you say, Trickster - the last bit of your post says it all. x
     
  16. Maymab

    Maymab Registered User

    Oct 8, 2013
    216
    Staffs
    Dear Piph
    Having read some of your previous posts, I have today read right through your blog. You and your OH are doing a wonderful job with your mother and I take my hat off to you both. What happened with the care service over Christmas was absolutely appalling and I am glad you have been able to deal with that. They are not fit for purpose!
    Anyway, good luck to all of you in 2016 and I will be following your 'adventures' with interest.

    Sent from my Nexus 7 using Talking Point mobile app
     
  17. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    Thanks Maymab, although if you'd seen me lose my temper with her at bedtime last night, you may not have though I was doing such a grand job.:(

    I often have difficulty getting her to put a clean pair of pull-ups on at bedtime - she insists that they are dry and she doesn't need to change them. I send her into the loo with a clean pair, and always ask if she has them on when she comes out. She always says yes, and then I check and find them still there. Usually with a huff and a sigh she will do as I ask and change them, but last night she just wouldn't, insisting she had already, then saying she didn't need to, then lying again and saying she already had a clean pair waiting in there and I just lost it! I said some pretty horrible things and then slammed the door on the way out! :eek: Of course, I immediately felt ashamed of myself for allowing my temper to get the better of me - I don't usually, I just stick to my guns in a calm manner. I had a bit of trouble sleeping, berating myself the whole time. But, thank goodness she had totally forgotten about it this morning, and I just pretended it hadn't happened.

    My New Year's resolution is to try to be more patient with her - but then so was last years! Oh well, if at first you don't succeed, try, try and try again!
     
  18. Maymab

    Maymab Registered User

    Oct 8, 2013
    216
    Staffs
    Journeys with my mother

    Don't be too hard on yourself. We are all only human and things get to all of us at times.
    The good thing, I suppose, is that 'they' rarely remember such episodes. My thoughts are with you as you fight this battle.
     
  19. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    Thanks Maymab.

    Despite a few grumbles, she got up and I got her showered and dressed today - first time I've managed it in over a week! She's much better when she doesn't sleep all day, so I'm going to try to get her up every day. The odd day in bed won't hurt her, and sometimes it's easier to take the path of least resistance and let her stay there, but I'm determined that we are going to break the cycle of her just staying in bed and sleeping most of the day
     
  20. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    I've had a reply from the CQC, so hopefully the agency will be on their radar now.


    Thank you for contacting the Care Quality Commission and I am very sorry to hear of your mothers experience of receiving no care or support while you were away. I will raise a safeguarding alert with the Adults safeguarding team.

    Information that you have given to us is very useful when we are planning our inspections.

    Once again thank you for contacting us.


    I know that someone else who uses them in our local area is also about to get CQC involved with a complaint, so hopefully alarm bells will be ringing.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.