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.

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
    969
    Male
    North West
    I am too old and weary to say never say never @canary. When I am done here I will the make most of what is left on my own and hopefully my friends will join in from time to time ;)
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,795
    Female
    South coast
    Ha! You are not that old - you are still of working age which makes you younger than most people on here :p
     
  3. Moggymad

    Moggymad Registered User

    May 12, 2017
    411
    Female
    "Be yourself.
    Especially, do not feign affection.
    Neither be cynical about love;
    for in the face of all aridity and disenchantment
    it is as perennial as the grass."

    You have a big heart @Palerider i hope you find happiness in whatever way is best for you :)
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Well I certainly feel older @canary :rolleyes:
     
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    That has always been my problem when it comes to relationships, I just never seem to be shrewd enough.....yes the poem is a gentle reminder, but I am working my way through it.
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    I wanted to come back to this @jugglingmum , its been at the back of my thoughts all day. I think for the moment I am happy and do cope (its not without its testing moments though), but there is this underlying anxiety I have of when this all does fall apart. I try not to go there and think about it, because instinctively I want to control the next stage and the next after that, which would be absurd thinking. I try to stay in the now, but sometimes I do start to depart from that and it might show from time to time, but that is the point of being on here, so that you can reflect things back at me I don't know about or haven't realised about myself or this journey. I would be lying if I said things never crossed my mind about steppng back, but stepping back for me is when the move to CH comes if we get to that point. Its hard to explain what I mean exactly.
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    With only less than a week to go I have posted this on my FB, I have decided to share it with TP, I do this every year, although this year I am asking friends to donate to any cause that they feel is appropriate to them:

    I'm not going to post one of those FB things for donation. What I am going to do is to ask anyone who knows me enough to make a donation this year on my birthday to a charity that matters to them. Lets say its a random act of kindness that hits your debit/credit card for whatever you can afford. My birthday is on 13th October, I hope you will have done something by then to help someone, no matter how small and let me know your choice of support. Thank you [​IMG]:) x​
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    I am such an idiot sometimes, I hadn't realised tonight that mum didn't know whether she was at home or not, despite all of what I know on this. When I did realise what she was trying to tell me I felt really sad, I don't how this now will pan out as this is very new, but as always when I can't express myself I turn to music. I know I have played alot of VOCES8 songs lately, but somehow they just seem to fit the situation, and I don't know why because there are so many other choices, but here is The Road Home by Stephen Paulus :(:





    Tell me, where is the road
    I can call my own,
    That I left, that I lost
    So long ago?
    All these years I have wandered,
    Oh when will I know
    There's a way, there's a road
    That will lead me home?


    After wind, after rain,
    When the dark is done,
    As I wake from a dream
    In the gold of day,
    Through the air there's a calling
    From far away,
    There's a voice I can hear
    That will lead me home.

    Rise up, follow me,
    Come away, is the call,
    With the love in your heart
    As the only song;
    There is no such beauty
    As where you belong;
    Rise up, follow me,
    I will lead you home.
     
  9. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    266
    You share your birthday with my niece who will be 17 next week. She has just done the same thing on Facebook, asking for donations in lieu of present to go to the Alzheimers Society to show support for her grandma ( my mum) who she is devoted to. I'm so proud of her, she's almost smashed the £250 target she set in just a couple of days. In fact, her post extolling the incredible woman that my mum is/was made me cry.
     
  10. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Yes I usually ask for donations to the Alzheimer's Society, but this year I thought I'd change it a little. Thats a good going sum of money for birthday donations on FB hat off to your niece :)
     
  11. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,323
    Female
    Chester
    But you weren't expecting it and if it's the first time it's happened and you were busy cooking etc not surprising.
     
  12. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West

    I think I was just shocked when the penny dropped, and what she was saying didn't register immediately, but yes I was busy tidying up after the meal. Its a moment that is for mum a big change, this has been her home for over 30 years and she has always loved living here. Today she is ok, and hasn't seemed out of place yet.
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    In this short Life that only lasts an hour
    How much - how little - is within our power​

    Emily Dickinson, 1292​
     
  14. Moggymad

    Moggymad Registered User

    May 12, 2017
    411
    Female
    Doing this now in case I forget! My 'random act of kindness' is to Doglost, a charity helping to reunite lost found & stolen pets.
    Wishing you a happy birthday for the 13th @Palerider. I hope you do something special that day.
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Well I have had a nagging feeling something would happen this week and yesterday whie I was at work, mum had walked five miles up the road and was stopped by a chap in his car who was concerned when he saw her. He got her in the car and somehow got her home. The neighbour called the emergency SS phoneline only to get a dis-interested response. The neighbour also contacted me at work, upon which I had to leave to come home. When I got home mum was getting ready for bed, and had no memory of walking anywhere, or so she claimed and then said she was trying to get to Stockton Heath (where she grew up).

    This is a significant change from how things have been with marked confusion. She has been flushed (noted by the carer) and had an increase in frequency of urination, so I'm thinking this is yet another UTI. Just of the phone with 111 and wating for a call back to get mum checked over, its going to be along day and difficult to organise anything as its now weekend.
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Well we managed to get a home visit which I was pleased about and the GP confirmed my thinking probably UTI, but could also be disease progression. We couldn't get a urine sample as mum was too busy being charming to the doctor -pity she can't be like that with the carers! Anyway we have entered into the eternal cycle of playing 'pass the buck, so much so I have decided to come up with a diagram as the old chinese proverb goes -a picure is worth a thousand words, so here is my artistic contribution to passing the old buck

    pass the buck1.jpg
     
  17. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,323
    Female
    Chester
    It's unusual for memory clinic to be involved so don't expect too much. And gps and ss rarely interact.

    I don't think it will help your work situation as hard to leave but can you install either a doorbell camera which picks up movement or a more comprehensive camera system?

    I know your mum made certain stipulations with her solicitor but in reality 24/7 supervision will be in her best interests very soon. I suspect you know this in your heart.

    I read earlier but am in a sports Hall serving as a fencing salle as I have been for several recent weekends.
     
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Hi @jugglingmum hope the fencing is going well.

    Mum has been lucky in having alot of input from the local Memory Clinic and they were keen to continue as she is quite high funtioning. But my real issue is that all of these parties should work together and communicate as they all have some contribution they can make in helping manage someone. Instead we have a fragmented service which makes it harder for someone like me who is on their own doing the main role of carer. Why am I having to chase the the other teams, when they can just speak to each other?
     
  19. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,323
    Female
    Chester
    The entire system is fragmented.

    I think my GPs deliberately obfuscates in a bid to save money and not prescribe. I had the normal merry go round of no prescription issued yesterday, which means phoning GP, going to GP to pick up script, and then going to a still open pharmacy to fulfill script. I think I only got a result as it was a child whose inhaler had run out and I said the magic words 'his breathing is really struggling without it'. GP blames pharmacy, pharmacy blames GP.

    Dau repeatedly had repeat blood tests and prescriptions refused many times. Which then results in a GP appt and blood test and prescriptions issued.

    Back to dementia, my mum scored 27/30 on initials tests, when she was clearly well in the grip of dementia - I queried at one memory clinic appt and was told that as she had been very high functioning the basic tests just don't really work on that sort of person. I posted a few days ago she was still successfully doing the Telegraph cryptic crossword when no longer capable of cooking, driving etc. I think that dementia is very poorly understood at this point in time, but the timebomb is out there with an ageing population.

    I was talking with a Russian lady today (fencing is very multi lingual) and she asked if my mum still understood Russian, I said with dementia I doubt it and she replied dementia is the scourge of the 21st century - which I though was very true. Anyway I am waffling.

    I hope you find some music to calm you tonight. I'm sure you know this but you need to work to get the stress ball in your head and body reduced so you can function properly.
     
  20. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    266
    Palerider, I appreciate that it would be very difficult for you to respond to a door camera while at work but I am finding the system we have recently installed at mums very useful. Within a few days of using it, I began to get a feel for mums routines and can check up on her without actually looking at my phone. If I get an alert that she has left the house, I listen out for a second alert on the front garden camera after a short period of time which will be her returning then a second alert at the door as she goes back inside.

    If she went out and did not return ( not happened so far) then the saved video would show me what she was wearing and in which direction she had walked - which might be helpful if I had to look for her!

    But for me the best part has been the ability to speak to her through the cameras. Mum has a problem with cars parking outside her house and keeps going out to peer into the windows or kick the tires or tug at the windscreen wipers to leave a note! If I pick up the alert, I now shout at her, tell her to leave the car alone and go back inside - which she does! It was funny the other day when I had to interact with her and as it was early evening, I suggested that she went inside to have a glass of wine - I was not aware that she was talking to a passing policeman at the time until I heard him laughing!

    I know you could not do this easily while at work but it might help you at other times. I check frequently on the front camera to see if the car is there - if not, I can relax and not worry! I can also monitor who is calling at the house and plan to show video clips of the men who have been scamming her of cash to the police.

    That drive home from work to help your mum is a feeling I know all too well, I've had to dash round a few times after mums lovely neighbour has called to alert me of a problem, I feel sick all the time and usually end up crying while I drive the 15 miles to mums.
     

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