101 and counting...

Discussion in 'I care for a person with dementia' started by Szaitisja, Aug 7, 2018.

  1. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    Hello.
    I joined TP just over a week ago and what a blessing it was to find this place:) I came across it few months ago while looking for somewhere to talk to other people but didn't bookmark it at the time and forgot about it completly until recently.
    I have been thinking about starting my own thread since the day I joined but whenever i try to write the post so many thoughts come at once and trying to tidy them up to make some sort of semi readable post is taking ages. So I decided to do it in stages and edit if necessary.
    I help with looking after my now 101 friend. She has been diagnosed with vascular dementia about 4 years ago. She has no close relatives apart from a 90 year old cousin who lives some distance away and 88yo second cousin who visits occasionally. So 3 of her friends do most of the organising and helping with whatever we can help.
    I moved in with her just over a year ago as she was getting more and more anxious about being home on her own at night and on few occasions bolted the front door in the evenings and no one could get in in the morning. She has carers coming morning and lunchtime every day and teatime/ evening 2 days a week, which i have off ( at least in theory- in practice it doesn't always work).
    I would say she is still in early stages of this disease and communication is not a major problem at this time, her short term memory is pretty much non existent most of the time and increasing anxiety seems to be the major problem. She is still mobile, although frail and scared of falling so she walks with a frame but likes to have someone in the room when she does.

    Think I'll just post this and continue in case i delete it accidentaly
     
  2. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    She has a great sense of humour (if a bit naughty at times ) and we spend a lot of time laughing and the neighbour has mentioned hearing us giggling through the walls few times.

    I think she might have began sundowning last few weeks tho. All of a sudden in the afternoon she suddenly get very down, starts talking about dying and can get quite mean in things she says to me (I know it's dementia talking).
    I think I want to start this thread on a positive note so I won't talk about the mean things for now, I'm sure there will be plenty of time for that on bad days. But we just had a really nice weekend celebrating her birthday and a fairly lazy and calm day yesterday, so no need for it at present.

    I'm glad I found this place, I've been reading through some of the threads and it already made me feel less isolated and alone an the practical advise is so good:)

    Now i made a start I can have my coffee and breakfast and see what the day brings. I sort of feel I achieved a little something today already so that's good:)
    Thank you for reading if you made it til the end of this post
     
  3. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    7,584
    leicester
    I’m pleased you are finding the forum a supportive and helpful place to be, look forward to reading more of your posts soon
     
  4. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    2,326
    Male
    N Ireland
    Good luck with your thread. :)
     
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    4,866
    Cotswolds
    Thank you @Szaitisja for your lovely, positive posts :) I hope you have many more calm days and giggles (though appreciating there are difficult times too).
    I look forward to reading your thread.
    Lindy xx
     
  6. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    Thank you for your kind replies @Lindy50, @karaokePete and@nellbelles.
    It's so funny that something as little as posting few words on the page can give you a sense of achievement isn't it? With this current heatwave I find it so difficult to motivate myself to do even little things that I've been planning for ages, as I am preserving all my energy for spending time with Rose and make it pleasant and enjoyable for both of us whenever I can. So everything else gets put aside to deal with later if it's not essential.
    Today is my day off and neighbours next door are away and left me the key and permission to use their house for 'respite' so that's what I'm doing and just the change of surroundings for few hours is just so nice. I will go back and see Rose in the evening, help her to bed and read to her, but I have the whole day to myself first. Don't think I'm going to achieve a lot as it is another very hot day and I struggle to be outside much in this weather, but I can do some catch up with paperwork, make a shopping list and little things like that. Or I'll just relax. I feel full of beans today, just because I started this thread. Amazing:)
     
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    4,866
    Cotswolds
    That’s so nice of your neighbours @Szaitisja :)
    I’m not good in the heat and have just done my online shopping order for next week! Should hopefully be cooler tomorrow...
    Hope you have a restful day.
    Lindy xx
     
  8. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,027
    Nice to meet you @Szaitisja, you sound a lovely friend. It took me a while to start a thread too (What day is it?) and I look forward to reading your thread and learning more about you and Rose, she doing remarkably well for 101.

    How thoughtful of your neighbours, it might only be next door but it is a change of scenery which can help you switch off for a while.

    I would suggest a relaxing day today, it is supposed to be cooler from tomorrow so better weather for doing jobs. ;)
     
  9. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    It has been a relaxing day:) i put on tv for a bit of a noise in the background and fell asleep for few hours so that was nice and much needed catch up. I rarely have an uninterrupted nights sleep due to Rose talking in her sleep and with baby monitor next to my bed it tends to wake me up few times during the night. At least she has good time most of the times as it seems to be parties and visitors most nights so she laughs a lot a chats away to them. It cooled down a bit also and starting to rain a bit. Well rain is probably to big a word for it yet:)
     
  10. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    We had another 2 lovely and fairly stress free days. It makes soooo much change after the week running up to birthday party. I think having the little party (20 people) has raised Rose's spirits, as she used to throw parties and having people over for meals etc quite often until few years ago. We write down names of visitors on a big white board in the living room so she can see who visited when she does not remember. She was so excited when we counted them at the end of last week and it turned out that together with party on sunday she had 57 visitors last week, including carers. She was so pleased. She remembers the party still although at times gets it mixed up with last years one which was much bigger (62 guests).
    Yesterday was one of the 'clear' days. She gets them sometimes although it's been a while since last time. It's like the brain suddenly fully recovers and she remembers things and conversations from last few months in such an incredible detail. Some of the memories do turn out to be confabulations in the process but she has really good appetite on those days, she can reason very well and I am told she is back to being the person from before dementia. (I didn't know her then). It usually lasts for 2 days but the trouble is the brain doesn't slow down at night at all so all night she is talking more than usual, sees people, hears music and sometimes gets a bit scared, but I normally go and speak with her few times to settle her down.
    We took out all the photo albums yesterday and looked through the pictures and so many memories came back to her. I had to write some of them down.
    We laughed more than usual, it was a lovely afternoon.
     
  11. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    She also told me about the recipe for banana bread which she apparently used to make quite often and wanted to share. That's where some confabulations got mixed in with memory. She was telling me how she got out of bed just after I went to lie down the previous evening and she got up and went to the kitchen and looked trough her recipe folder and that particular was right at the top (she never got out of bed apart from using the commode once that night) but when she wanted to look at it this morning it was gone so 'they' have probably taken it and what a shame it is and her friend (back from Land Army days) that gave her this recipe passed away few years ago and now it will be lost and she go a bit upset. I did manage to distract her by saying maybe when she put it back in the drawer it might have slipped behind as the drawer was very full, etc, etc. I also promised to contact her friend's daughter to ask for her mum's recipe if we can't find it. And i send the daughter an email explaining the situation and she has got the recipe and is going to send it to us so I can make it for Rose, I hope. Never made banana bread before but fingers crossed it won't be to complicated.
     
  12. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,027
    My mouth is watering already!
    What a good idea to list her visitors so she can see who’s been.
     
  13. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    All the excitement wore off now and the brain is resting after a 48h period of continous activity so we are now back to the drowsy and anxious Rose.
    Those lovely days full of laughter are absolutely wonderful but they are getting rare and when the 'new normal' is reinstated it is so heartbreaking.
    I have to be very careful and try not to leave the room to often as even f i pop out to the kitchen to make a cup of tea or something I get the : Where have you been? You're supposed to be here. I never see you. You're useless, I better find someone else, etc.
    It's so good we had few lovely days as I can take it today, but in few days it will be really difficult not to take it personally while it's happening.
    I do know it's dementia talking but it can be so hurtful at times and if I'm not feeling 100% it does get to me:(
     
  14. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    Well, I was really hoping the positive time last week will make it easier for me to cope with Rose's anxiety and the horrible things she says sometimes, but I don't know that it has. In many ways it makes it so much more painful to switch back to reality.
    I really find it very difficult to cope with the 'you are useless'. I've been suffering form depression for the last 20 years on and off and that particular phrase touches all the wrong nerves for me. It's probably the only one I am unable to not take personally. So a sleepless night for me last night already. Tomorrow is my day off and it should be a happy one as I'm going out to celebrate 2 of my friends turning 70 and am hoping for a nice lunch and chit chat etc. I just hope Rose won't remember today that I'm off tomorrow. The evenings when she does are really horrible for me. One of the latest things is ' I bet you can't wait for me to die'. That and the others I mentioned already makes for really tough 7h. I try to walk out for few minutes when it gets unbearable but sometimes coming back to the room makes it even worse.
    Sometimes I'm so worn out emotionally after an evening like this I cancel all the plans I had at the last minute and just stay in bed and stare at the ceiling all day, which of course doesn't do me any good whatsoever:(
    I won't let it happen for tomorrow tho. I haven't seen some of those friends for months and I really want to catch up (we all used to work together in a charity shop some years ago).
     
  15. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,027
    I’m sorry you are feeling so low but it’s good that you are getting out tomorrow to meet your friends for a catch up. I’m lucky in that my mum doesn’t say horrible things, although she can have her tetchy moments. Let me tell you that, from what I’ve read, you are far from useless. Maybe you could have a few cheery replies in stock like, “I’m sorry you feel that way” “oh well, never mind”. When she says she’s going to find someone else I know some people say things like “would you like me to get the phone” “let me know when you do” . Sorry I can’t be of more help, catchy one liners seem to have flown out of my head. I normally think of an appropriate reply ages later :rolleyes:.
    Sounds like you are in desperate need of a big hug so sending one your way.
     
  16. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    thank you for the hug @Rolypoly. Much needed. On a rational level I know I'm not useless, luckily. I do try to prove it to myself every day. I do often reply with 'shall i get the phone' or similar, but try to walk out for a cigarette if I can avoid it. Sometimes that works and when i get back it's ' oh I'm so happy to see you'. and then the cycle begins again. I know that it's usually something else making her anxious but she sort of takes it out on me, not remembering what made her anxious but not able to shake the feeling. It's nice if I can distract her with something else, like reading stories, tv or whatever but sometimes it just doesn't work at all whatever I do. If she has a better day today I might find out what caused the anxiety in the first place, sometimes she suddenly remembers 'a dream' that's been bothering her and quite often reveals the reason. In run up to her birthday she was suddenly worried about funeral arrangements and her will etc, cause she didn't want anyone to have to organise it and it maybe being difficult for them. So it took constant reminding and discussions about all this being taken care off, she has made a will and specified everything so it's all sorted, etc...
    I just need to work out what the current anxiety might be caused by apart from me having a day off. That is always a big thing, even tho it means she is going to spend time with 6 people at least instead of 3 and she still absolutely loves visitors.
     
  17. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,027
    It’s never ending detective work to try and find out the true reason at times. Just remember you have nothing to prove to yourself or anyone else, you are not useless, that’s the end of the matter!
    More hugs being sent to see you through until tomorrow’s chinwag!
     
  18. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    Monday was much better luckily even tho i did start lying when she asks if i'm here tomorrow. if i say yes that's the end of the subject for some time. It makes it so much easier. I find it difficult to lie tho, but it it makes her less anxious so be it :) We did have one instance of ' you are useless, I'm going to find someone else so they can be here all week at night' . This time I used the laptop and started looking for local agencies providing the service and we talked about it for a little bit. Then I told her the price (£795 p/w for 12h overnight). She was very surprised but it did stop the subject and I was told I should have time to see my friends. At least that was the end of this conversation for that day.

    Yesterday I didn't see Rose at all. I went out in the morning to see my friends, several of us met up and it was lovely, we had a nice lunch, walked round charity shops and then met up in larger group for lunch. It was so lovely to see them. Some I haven't seen for quite a few months.
    In the afternoon I met up with another friend for a quick pint and while we were in the pub, another friend I haven't seen for nearly a year popped in so we sat and chatter for ages catching up. It was a lovely dementia free day for me.

    Need to get the weekly shopping sorted now and then hopefully have a nice afternoon with Rose. We are reading a new book by one of her favourite authors many years ago and she really enjoys it. We do laugh a lot reading those as they are very predictable love stories so we work out what will happen 2 chapters in usually but then we still have to read to make sure we are right.
    According to her we are Ms Marple and Jessica Fletcher teamed up and between us we can work out anything:)
     
  19. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    What a strange afternoon/evening.
    Rose has been very confused this afternoon. She's been seeing people all day and even tho it happens quite often it was somehow different today. Usually it seems to stop when someone is with her but that was not the case. I was asked as soon as I walked in to go and check what those men in Indian/Eskimo costumes are doing in the garden. I tried the 'oh I can't see anyone, maybe they left' but was asked to check anyway what they have actually done, so off I go thinking of what to say upon return.
    It turned out (because that answer was acceptable) that the landlord hired some gardeners to sort out our neighbour's overgrown garden because it just looks such a mess and they only half finished so it's possible they might return the following day to cut the rest.Then she was wondering for a while why they have been in her garden if they are doing next doors. And it's probably to measure the little fence that divides the 2 because it needs a bit of work as it seems to be falling over. Phew, that one is dealt with.

    Next I had to investigate what happened to the beautiful leg of lamb that she bought on Tuesday and was roasting in the oven and the carers promised to keep an eye on it and now it's gone. She gets so upset about 'them' stealing her things I wasn't sure how to go about that one so I asked at first if it's possible that it was one of her vivid dreams that she sometimes has. Actually it turned out it was. Result.
     
  20. Szaitisja

    Szaitisja Registered User

    Jul 28, 2018
    47
    Female
    Hertfordshire
    Next one. where are all the plates and food, because P&D (couple of friends) visited and she was making them breakfast and there was hardly anything available and all the plates gone and she had to put eggs and bacon and jam sandwiches straight on the tablecloth and it was hardly a suitable breakfast.
    Luckily by the end of that one she said herself' Oh silly me, it must have been a dream, they haven't been lately'
    Then we read a book by Ethel M Dell (one of Rose's favourite authors in her late teens) and all was well and she was in wonderful mood. Dinner went fine. She was drinking loads and loads that day also so that was brilliant. We checked the stoma bag and were getting ready for some more reading and then she asked me to sort out 'that woman's stoma bag as she can smell it from where she is sitting. Stupid first reaction - which woman's? The one next to you silly. So off i went with this invisible woman to the toilet as it turned out she needs to spend a penny also. Had a cigarette, came back, woman forgotten. Rest of the evening lovely.
    Went to bed. Read a bit more of the story. Then she 'remembered' that because I wasn't there on Tuesday 'they' put her in a care home but she's glad to be back home and can I promise I won't let them put her in a care home.
    That's a tough one. But the usual 'I'm here to help you so you don't have to go anywhere else' works.
    Was expecting a very busy night, and loads of delusions but it was very quiet. Now that is very unusual because she almost always talks in her sleep at some stage, so to quiet send me into 'panic mode' and I was up most of the night checking every now and again to make sure she's all right.
    Yesterday she was very sleepy and drowsy and getting her to eat and drink was almost impossible, and the afternoon/evening was a bit more miserable.
    See what today brings.
     

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