A lifelong friend and me

Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.

  1. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Its all in hand, I have let the insurance company take over the repair work as the qoute was too high to do it without claiming.
     
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Today is another day, mum refused to let the carers in as usual but talked to them at the door and teased one of them about her false eye lashes, I'm glad mum hadn't noticed the lip botox which would have been one element too much for the carer to be teased about.

    I have cut the back garden hedge (5 inches taller than me) and put weed killer down as I no longer have the time to weed the paths and driveway plus other nooks and crannies. If I lived in Greece I'd be met with anger at laying chemicals down, and I agree...but needs must. As a bee keeper it is a sin in the daytime to spray plants even if weeds. (YES I keep bees).

    Mums old friend who has vowed to visit two monthly had planned to visit today, however she changed her mind and didn't come. I get the feeling I'm the last person standing here now. The back gate was open when we came home from a drive out, which signals my brother had visited yet again no phone call to tell us he's coming, he just turns up (knowing that we are likely out if I am off). I am beginning to wonder if its easier for him to avoid the situation by saying 'I came, but no one was in' of course he's right, no one was in....mmmm?

    I have spent the last two days feeling miserable over being angry over the car incident. But I take mums anger and aggression every day with no equivocation. Do I need help? No, what I need is a big magic wand to make this all ok again, which is only likely to happen via a miracle.

    I have started to write my doctoral proposal. In between the house work, washing and gardening and mum retiring at 20:30 promptly every night I need to move on with my life too, so now I write when mum is either snoozing in her chair or has gone to bed. Its best to work small at first putting a few pieces of a complex jigsaw together slowly at first. On late into the night while I am off on leave.

    I'm not sure if we will get to Cornwall for our break, mum seems more than ever to cling to the inside walls of this house. I have to decide soon what to do, I can't afford to loose more money at the moment, we need a safety net for 'just in case' stuff such as the washer blowing up or the roof failing
     
  3. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    #303 Palerider, Jul 30, 2019
    Last edited: Jul 30, 2019
    A short film from a happier time in my life, mainland Greece, how I long to return with an old friend, Rhi

     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Today has been worse. Its not new news to say mum is advancing, I know this without any running away from it or hiding in corners of langauge we sometimes use to avoid the ultimate reality we live in.

    Mum is on the final run of a long journey and today that has become more than ever obvious. She can no longer chew meat and refuses to eat all of her food. She has consistently refused help to wash and shower and she has become the silent mover of things. She no longer listens or understands direction and has been met with her ultimate challenege of not being able to help with dinner or the table, her last throws at hanging on dearly to what she knows. The last few weeks have seen mum change again, she is changing more and more rapidly now than ever before.

    This is an aspect I hate about this disease, we just never know when the next regress will come, and when it does it knocks you of your feet. As surely as you stand up again the next wave of change comes.......ad infinitum
     
  5. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    437
    So sorry to hear this @Palerider. Do you think your mum might have an UTI or similar that is adding to the decline?
     
  6. Rosie56

    Rosie56 Registered User

    Oct 5, 2013
    75
    I rarely come on the site Palerider but I am so moved by your account of what's going on for you and your mum. You say you don't need help, but magic - but I can't help thinking you would benefit from any support that's going. The film of Greece brought tears to my eyes because it speaks so eloquently of freedom and light and enjoyment, all things that are in shorter and shorter supply as we go on supporting our loved ones with dementia. If you can get anything at all back for yourself, please do. I wish you all the best with your doctoral proposal.
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    I'm not sure Sarasa.

    Everytime we check a uirne dip there is no evidence of a UTI, there are however problems with this, in over 65's the evidence says its pointless to rely soley on uirne dips and in any event they shouldn't be done, just treat for suspected UTI in the absence of an MSU unless otherwise proven. The GP is somehow adverse to these guidelines which makes it harder to fight mums corner. I am here after all here to help her and be her advocate, somethig these days that has become lost. Mum has one brilliant GP so my only hope is that I can get her to see mum and we can then try to rule out various things, one of mums biggest issues has always been constipation, this can make her very confused and agitated
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Thank you for noticing Greece.

    Its a very isolated spot, a 2 hour drive from Athens and rests between the Peloponnese mountains and the Gulf of Corinth. It completely to me is a place of freedom, light and enjoyment and one day I will return :)
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Today I went down to mid wales to see my two friends and also work colleagues, we had organised an afternoon champagne tea to celerbrate all three of us gaining distinctions in our masters degrees and to meet up and share things as we rarely see each other these days when working.

    I had planned to leave mum at home and arranged for the carers to come after lunch, but mum was so unhappy at being left behind I took her with me, out of feelings of guilt. We arrived and mum dominated the conversation most of the time until she decided an hour later that we had to leave, and got quite forceful about it, to the point I realised she had become anxious as it was late afternnoon and time for her to go home. My friends are completely understanding, but in that moment I realised that this wasn't about me anymore. This 'thing' that is happening evolves around mum now, there is no negotiation or understanding anymore about my needs or wants.

    We got in the car mum calmed down and was fine for the rest of the journey home.

    I think its time to start making some decisions in how go about these scenarios now, and how in the future I manage them. I won't be taking mum with me again to my friends, I've decided friend time is for me from now on and I will have to work out how best to deal with these scenarios when they next arise.
     
  10. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,166
    Merseyside
    White lies. Tell her you’ve got an appointment re your studies etc.
     
  11. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,431
    Female
    Dundee
    A wise decision @Palerider. You need to have some time to yourself or you’ll end up with carer breakdown. I’m sure you’ll come up with some strategies. As Cat says ‘love lies’ might be the way ahead.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,185
    Female
    South coast
    Its difficult once they get to the stage of not coping, but not being able to understand this. She wont be happy coming with you and she wont be happy being left behind - and she wont be able to understand this. So, yes, I agree - love lies are the way (I have also heard them called "therapeutic untruths" if this concept is easier for you). Meeting up with friends sounds like fun to her, so come up with something that she wouldnt want to go to and stress how boring it will be, but you have to go ;)
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Thanks Cat27, Izzy and Canary

    I think the time has come to change the game a little and I agree 'therapeutic untruths' need to be used more frequently now. She is quite happy pottering around at home, and probably the best thing to do is leave her at home when I'm meeting friends etc.

    I have cancelled the trip to Cornwall this weekend, we should have left yesterday but I had already decided not to go and went to see my friends instead. Mum had forgotten all about Cornwall (luckily), this is because she seems more and more fixated on being at home.

    The carnival is over (a Seekers song), I think the journey is now going to be very much more downhill with less and less light shining through. Over the last 6 months or so mum has changed quite rapidly in comparison to what was a slow decline before.
     
  14. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    418
    Female
    High Peak
    When you see someone often, you sometimes don't really notice the changes. My invisible brother (has managed just one visit to mum this year :rolleyes:) says, 'Why didn't you tell me she was this bad?' as it comes as a shock to him. Which surprises me as she only seems a bit worse to me. His fault as it is so long since his last visit...

    But often it's the small things. Whilst I was visiting last week, two carers came in to get mum changed. I'd been sitting chatting with her and she was... fairly ok. But the palaver! First she says, 'I'm wet up to here.' (points to her nose), which she wasn't. Then 3 of us try to steer her to the en-suite which she didn't recognise. She wanted to go out in the corridor. Once we got her in the bathroom I left the carers to it but could hear the conversation, 'Sit here, B, so we can get your trousers off.' Mum: 'Why?' Carer: 'No, not like that, turn round this way.... now sit down.... no, this way....no, on the toilet!' Etc, etc. Then she started telling them the Germans were in her bathroom.... o_O

    The carers are very good, but hearing mum talking to them is very weird. When I talk to her I am able to 'ground' her a bit but with anyone else it becomes clear just how completely muddled and confused she is. I don't think there has been a major downturn but the decline seems to be getting steeper. Her speech is really starting to break down now - lack of continuity, problems with word finding, etc. And just a general cognitive decline that is very sad to watch. I think she's moving from late stage 6 towards stage 7 now...

    Sorry you've missed your Cornwall trip but I think your decision was probably the right one. Home becomes the safe place more and more as people decline. Take care.
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West

    I'm in a similar situation in terms of 'grounding' mum. When I'm with and help her she seems to manage much more, but around others it changes to being muddled and confused. I don't see the changes as much as others do, but as you say thats because I'm here all of the time and these things aren't so noticable. For those who don't visit, the 'invisibles' I think its easier for them to remain detatched, for those of us who stay its much harder to see the situation for what it is.

    I think not going to Cornwall was the right move sadly, I think I'm still catching up on where mum actually is as opposed to the idea I have in my head of where she was. Each change I think means loss and we go through a mini catch-up on that loss (a mini grieving stage), and then it repeats itself over and over. I can't think of a worse way of loosing someone both for the pwd and their families. I think dad had a better exit from this life, even though it was sudden.

    But we keep going, as best we can. That is all we can do :)
     
  16. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,166
    Merseyside
  17. Moggymad

    Moggymad Registered User

    May 12, 2017
    359
    Female
    Just had that conversation with my sister who has been to see mum who is again so tired she cannot stay awake. The carers are unable to feed or water her at the moment as she can't wake up long enough. My sister got upset at the situation. The carer reassured her that another day she will be awake. She has 'bad days' more than 'good days' now & that has been the pattern for a while. Late stage dementia definately but how do you know when it goes into end stage? Will she just slip more into this deep sleep & not be able to wake at all?
    I find it all upsetting as well but I go on here & read others stories & learn from their experiences.
    Agree @Palerider it is important for you to maintain your friendships & have an outside life that doesn't include your mum. Don't feel guilty about it, it is therapeutic for you.
     
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    #318 Palerider, Aug 4, 2019
    Last edited: Aug 4, 2019

    Its interesting to me you mention just slipping into sleep in the end stages. Mum has consistently said that one day she wants to go bed and not wake up. The trouble with that is I am not sure where she is at. Some people fit the laid down criteria stage by stage (0-7), but others can jump ahead even though they still have some functional ability. I spoke to a medical colleage (medical consultant) and asked their advice and she just simply said the probability of it happening is quite high.

    I have to start grasping back my own life now, mum is determined she is staying here until the end and there is nothing more I can do to change it. I don't blame her on this, even now in her confusion she is still certain about one thing, that she is at home when she leaves this world, I just hope when the time comes she manages to give me the chance to say good bye.
     
  19. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Just thinking my last entry was quite morbid, but this is mums decision, but then you have to remember she comes from a generation where dying at home was normal and respected.
     
  20. Moggymad

    Moggymad Registered User

    May 12, 2017
    359
    Female
    Yes I think that would probably be the wish for most of the older generation. My mum has never expressed a wish just says she's 'too old' whenever she is told her age, 88. None of her family got to that age so she is amazed by it, although it's not that old nowadays.
     

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