1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    Well I was very impressed with the SW that came. I heard a lot of good things about her but haven't met her until now. She was very helpful and practical and it was easy to discuss things with her. She was very surprised (as was I) at couple of paragraphs that the care agency included in the service user agreement they want signed ASAP and asked for a copy of it to raise question with her manager about it.
    She also told me she will be happy to help with my complaint to the agency and asked to be informed of any complaints in the future to make sure it all goes on the agency's record with them.

    The call from the agency itself has not materialised yet, so still waiting for that.
     
  2. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    Heard from the manager of the agency also. Apparently the carer is being carefully monitored atm and she will not be coming here any more. Also all carers have been instructed to stick to the agreed length of the call. Should receive a letter with everything in writing when the full investigation is completed.


    R. has been up and down yesterday. We read some more of the book and she was laughing at me as there was a very moving part and I just couldn't stop crying and had to stop reading for a bit. In a way it was interesting to see how she 'switched' from being down and a bit miserable to a comforting warm person trying to calm me down at first. Then we both laughed at me crying over a book, and her mood stayed better for the rest of the evening so that was good.
     
  3. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    Yesterday was a very difficult day in terms of eating and drinking. R. really was quite down remembering all her friends who passed away some years ago and her mum who died 60 years ago. I managed to get her to drink 2 ensures and 2 half cups of tea all day and that was about it. Hardly any food.
    Today is my day off and even though I know she had 4 carers coming and at least 2 friends visiting I have been worried all day, which put a bit of a damper on the evening with OH and his parents. We were celebrating my OH's 49th and his father's 70th birthday. It was a nice meal out but I had this horrible feeling about not being with R. and being about 10 miles away. I know if something was wrong I would get a phone call and could get back quickly but it mafe me feel anxious and not enjoying the evening as much as I should/could do:(
     
  4. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,466
    leicester
    When we care about someone it is impossible to just switch off
     
  5. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    So true. Sometimes I manage for a day, but probably because yesterday was not that good it makes it more difficult. I just feel I let my OH and his parents down on a special evening and it makes is so tough. It does help to write it down though, as I know if someone reads it, they will/might understand.
     
  6. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    Mark Twain - quite a handsome chap, but I wouldn't like to kiss him with that moustache. It must be horribly ticklish - R's reaction to seeing a portrait of M. Twain on a kindle screen saver last night:) Must remember that one for more difficult days:)
     
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Glad you seem to have had a better day @Szaitisja :) You're right, it's important to 'save up' the good moments xx
     
  8. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    I have not posted for a while, as life is getting on top of me and sometimes trying to put a lot of thoughts in a sentence is beyond me. I'm having a tough time at the moment as R is having a UTI. She's been on antibiotics for a week, but getting her to drink enough to flush it all out is a nightmare. One day she drinks reasonably well, it seems like things are looking better, we are up 8-9 times during the night, the following day she refuses to drink and eat and it all goes back to square one. I've been having on average about 3-4 hours sleep a day since last Sunday, not necessarily all at once and I'm exhaused. On top of that because she is not feeling terribly well and is a bit irritated i get the " you used to care about me, now you don't give a damn" for hours on end every day. I am worried she might end up in hospital soon because of the infection not clearing up but not sure what else to try. I explain why she needs to drink (I know it does not stick), I plead, I beg, I cry. It works for a day and then back to square one...
     
  9. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,089
    Yorkshire
    hi @Szaitisja
    sorry to read that R is not well and you are having quite a time of it
    I was going to suggest jellies, ice cream, ice lollies, trifle etc for fluid intake but then realised you said R isn't eating much either
    maybe have a chat with her GP ?
    and maybe consider a spell of respite, carers available all day and night may be able to help R and you would get some much needed rest
     
  10. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire

    Thank you for your reply. We've been talking to gp couple of times last week. they just prescribed more antibiotics. Just took another sample to the surgery for testing. Waiting for a phone call now. In the meantime i keep trying to get her to drink with mixed results.
     
  11. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    The UTI continues. 4th lot of antibiotics now, if those don't help she will be referred to hospital Gp said. Full hostess mode on display during GP's visit of course and conversation started with : I am not going to hospital, I don't want to. Because she was scared she might be send to hospital she drank really well for half the day, then back to the usual battle.
    I am wondering if she can refuse to go to hospital should the need arise and if ambulance comes can she refuse or can someone with POA override her decision?
    It's such a difficult one, I know she is terrified of it and GP suggested that there might be other problems apart from just UTI - cancer was mentioned also but of course without tests in hospital it's impossible to say, but even if that would be the case would she be able to cope with any treatments at 101?
    I've got million thoughts racing through my head. Hope that writing some of them down might help so I can get much needed sleep for a few hours at least.
     
  12. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,022
    N Ireland
    Hello @Szaitisja, I don't want to look as if I'm a harbinger of doom, so please don't see it that way.

    However, I thought the factsheet that can be reached by clicking the following link may help you with some of the issues you are having to think through at this difficult time https://www.alzheimers.org.uk/media/4631

    I do hope it helps and wish you all the best.
     
  13. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    Thank you for this link.
    I certainly don't see you as a harbinger of doom. This has crossed my mind on several occasions, especially that last week she was diagnosed with chest infection on top of UTI and I was very worried how and if her body is able to fight both of them with so little food and drink that she actually has. I know one of the GPs asked another friend who was speaking to them if she has expressed any wishes regarding end of life care but that is as far as it went and nothing like that was mentioned again. But it keeps going through my head.
     
  14. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,022
    N Ireland
    I’m glad you think you may get some value out of that fact sheet as it seemed appropriate to what I could see in your post and I wanted to help.

    It’s the tough time every carer has to face one day.

    I wish you strength.
     
  15. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    I just realised I have not posted in this thread for over a year and now it should be 102 and counting:) Looking over last few posts I realised it's been that long and we are still battling UTI after Uti every few weeks. But luckily R. still seems to have good days at times, although they are much rarer and in a way much more precious when they happen. She went into respite recently for couple of weeks as I desperately needed a break and some plans that were made beforehand to cover my holiday did not work out as we wanted them to. I did have some much needed rest whilst visiting Cornwall and recharging my batteries by the sea (always works wonders).
    Now back to reality and more worried than before as R seems to be much more confused and withdrawn after respite. Doctor visited yesterday as there seems to blood in the urine again and quite disturbing 'visions' but no sign of infection upon testing and blood tests were suggested instead for the moment.
    Last night for the first time in nearly 3 years since I started looking after her, she was very unsettled in the evening and insisted on going home, not accepting we are at home. I know it is something that happens quite often with PWD but it was the first time for us here and took a while to navigate it to help her settle. The whole day seemed very 'spooky' as she was seeing a lot of invisible people and almost all of them were her friend that passed away, so it felt at times like sitting in a room full of ghosts, as she was chatting to them constantly and quite happily.
    It was a very strange day and I just felt I need to write it down and get it out of my head, so I can have a 'blank slate' for today and not dwell on it too much.
     
  16. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    157
    Female
    what an amazing age to be coping with this horrid disease! Bless her, and you as you seem to be coping very well too with her care and support. I would be tempted to have a tea party with all the new 'guests' you have calling by. Drink to their memory with a cup of tea and a slice of cake ;) I hope she hasn't got an infection, but that could be the reason for the latest changs and visitors.
     
  17. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    134
    Female
    Hertfordshire
    Thank you for the reply:) We did have a little party. I try to navigate those situations as they come and if they are not distressing for her I try to go along with them whenever possible, so yesterday we ended up with several cups of water around the room, just to make sure the guests had a cup of tea. Some more distressing situations need a different approach and trying to steer her away from whatever it is and we seem to navigate them reasonably well on most occasions although it does usually take a bit of time to work out what will work and what will not. Sadly logical explanations rarely seem to work nowadays, so it can be tricky at times and result in her being a bit anxious until we find the right thing to do.
    So far it seems there is no sign of infection and doctor recommended blood tests to try and work out the reason for blood in urine, so we have to wait for results.
     

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