1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

A lifelong friend and me

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

  1. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    192
    Oh, the key! How many times have I played hunt the key before we can go out! Mum has not yet left her key in the lock but we've tried to anticipate that problem by all of us ( three siblings and next door neighbours) having keys for every door - front, back and patio! As she never uses the patio door we hope that we will always be able to get in!

    Please let me know how your mum gets on with the turn key as my mum is not very good at learning new things and I would worry about her spending hours looking anxiously for the key to lock the door!
     
  2. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
    I think that’s a brilliant solution.... well done on getting a decent locksmith that gives a decent service
     
  3. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    192
    Talking of keys has just reminded me of what happened last Saturday. I had driven mum to our usual pub for lunch but was a bit distracted by a phone call I'd just had from my son in the US and forgot to make sure mum put her keys safely in her handbag as she got in my car,

    Roll on two hours and as we got back in the car, still distracted by my sons issues ( I really am a sandwich generation!) I ignored some rambling comment mum made about something that looked like an old key ring on the car park floor. Yes, as you might have guessed, when we got back to her house, no keys! It was sad to hear her berate herself for being stupid and not locking up. Mum does still have some awareness of her Alzeimers. As the door was locked I let her in with my keys and made sure the spare set were to hand.

    It was pouring down, I was tired and still upset about my sons toxic problems in the US and the last thing I wanted to do was drive five miles out of my way back to the pub! But I did, crying most of the way with tiredness and frustration. Luckily the keys were on the floor in the car park but of course, when I phoned mum to let her know I had found them, she had forgotten that they were missing!
     
  4. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
    Oh @Lynmax you reminded me of a long forgotten memory ... very much pre dementia... but about mum and keys .. be thankful you didn’t have to to what I did :eek:

    Mum was forever forgetting her keys, I was always checking she had them. She’d get pretty cross with me. So, one day we are heading out, I ask if she has her keys, she scowled at me and I didn't ask to see them :rolleyes:

    A few hours later, I bring her home. I stand by the door. A very solid, very locked door. She looks at me and says she does not have her keys :eek:

    I then have to knock on the neighbours door introduce myself and ask if I can walk through his property. He was bemused, but agreed (we later became friends :p)

    I had to climb over his balcony, walk along a tiny, tiny ledge and climb up onto our balcony to get into mums property.

    Heights are not my thing, but I wasn’t standing outside a locked door arguing with mum about why I should have had keys to her house:rolleyes:

    That’s made me smile :D:p
     
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Hi Lynmax

    Funnily enough mum took to it straight away, she must have had one before or a system similar to it. Got home tonight, door was locked .....so far so good ......
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    A strange week. I returned on Monday having had two weeks of annual leave from work and felt terrible and very anxious about not being at home to keep an eye. I am beginning to wonder if taking leave is a good idea, as I have to re-learn to let go every time I return to work. I felt miserable and also guilty that mum was home alone. The situation I think is becoming more difficult and I am subconciously burying it -thats my theory anyway.

    On Thursday morning I woke at 6am for work, only to discover mum had fallen, and was sat on the floor in the middle of a mess. She had clearly stumbled, tried to hang onto her set of draws and pulled it over as she went down. She was quite happily stuck on the floor as she couldn't get herself up, twittering away to herself. I got her up and thought I may have to delay going to work, but she was fine. Luckily she had landed on her bottom, and not a scratch or bruise on her. She walked no problem and encouraged me to go to work. I waited until I was happy and then left.

    This last week has seen another change, more muddled, more disjointed and confused talk and not carrying out tasks as well as before (going to do one thing and then ending up doing something completely different) and increasing hyperactivity but not achieving anything specific.

    The only good point this week is that mum has had no problems with the new door lock -thats something at least.

    Waiting to for a reply from mums MP after emailing a link to the House of Lords Report
     
  7. 2jays

    2jays Registered User

    Jun 4, 2010
    11,590
    West Midlands
    Could be that uti is still around?

    Mum seemed to get one after another for a while, until she was on 2 weeks of anti bios - I’m guessing they were the correct ones for the bug as she only ever had uti’s once in a blue moon after that
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West

    I've been waiting to hear from the GP about the urine sample results, might as well call them even though I'll get told off down the phone :eek:
     
  9. 2jays

    2jays Registered User

    Jun 4, 2010
    11,590
    West Midlands
    Get them to come and deal with mum then !!

    Gets my goat when spoken to like I’m a waste of space, especially from someone who wouldn’t have a job in the service industry if it wasn’t for people like me needing their help (rant over :))
     
  10. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
    I’m sure the dragons at surgeries count on us not wanting to be told off ... I got quite blasé about it in the end ... phone ... get the usual “we are very busy ...” and comments about mum not being the only patient they have etc ... but hey ho ...
     
  11. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
    :eek::mad::D
     
  12. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    @Sam Luvit and @2jays I have often fell out with the receptionist over matters to do with mum. last time I invited one particular receptionist to come and deal with mum while I just pop down to the surgery about mum -Doh! One particular occasion I called for an appointment to follow-up a CT scan I had, which I was told to do by the GP. The receptionist then refused an appointment and read out my report in the reception area down the phone. That was the last straw! I marched into the surgery and tore strips of her. The GP's aren't often aware of some of the behaviours their receptionists exhibit as their frontline. Most of the time I get the nice ones, but now and again there is one particular person who is always obstructive -she has however learned to recognise my voice on the end of the phone ;)

    Its not my fault GP's don't work weekends or out-of-hours anymore, nor is my fault that GP's are leaving the service in some areas (ours). To be fair the whole system is pushed to the limits, we aren't patients anymore, we are numbers, packages being pushed through what feels like a factory production line. I know times are hard, but that doesn't mean people can't at least take a caring view to their work, even if they really can't help
     
  13. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
    I’m with you on being furious at getting my results given over the phone ... who knows who was listening to my symptoms or prognosis @Palerider :eek: Not professional in my opinion

    As for receptionists ... I call them “dragons” for a reason. I gave up phoning, I simply marched into the surgery ... they came to hate me :rolleyes: I didn’t care :D

    I asked for a home visit for mum, as requested by the District Nurse. The dragon told me the GP’s only do home visits for permanently house bound patients. As mum had only recently become housebound, she didn’t qualify :eek: .. I asked how someone with no balance, not allowed to attempt the front step by OT, was supposed to get to the surgery :mad:
     
  14. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #374 Palerider, Aug 16, 2019
    Last edited: Aug 16, 2019

    All I will say is receptionists are not trained in triage, and one of these days some poor soul will die as a result of someone above their station being obstructive down the phone, IF it hasn't already happened (I think it has).
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    I was curious so I looked this up, receptionists tend to get away with alot of things because they are not professionally registered, however there is a case that now holds....the case of Darnley (Appellant) v Croydon Health Services NHS Trust (Respondent) in the Supreme Court 2018

    Anyone interested in reading around this here is the link:

    https://ukhumanrightsblog.com/2018/...-a-duty-of-care-to-a-patient-owain-thomas-qc/
     
  16. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
  17. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West

    So would I and mum after an hour. It was interesting to look this up because the judgement in the end put very simply was that the hospital had a 'duty of care' as per the Bolam test. The Supreme Court overturned the original judgement and found the hospital to be negligent.

    Interestingly neither receptionist claimed that they remembered the conversations they had with the head injured man but they did recall he didn't tell them he was leaving ??
     
  18. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
    Selective memory seems rampant in the medical profession :(
     
  19. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Today is Saturday and by family tradition (namely mums tradition) its steak and salad in the summer. So thats our evening meal sorted, I have spoiled us both with fillet steak tonight.

    I gave mum a light beer while we were sat in the kitchen and she suddenly declared how much she loves living here, even when she is on her own -she got quite tearful. I wasn't sure where this came from, but at least there is some confirmation for now that we are on the right tracks as matters stand.

    I have fixed the middle backdoor glass panel for the umpteenth time with perspex. The last time it broke was when I slammed the door in complete frustration, the time before that is when mum left the key in the door and no one could get in.

    The Seekers are playing and mum is singing and doing little jigs round the kitchen, I hope this good mood lasts for once......we shall see as we have visitors coming to see her.....
     
  20. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Today the sun is shining, there is a cooked breakfast waiting to be eaten and mum is in her bedroom struggling to get herself ready for the day, but also refusing any help. I did a quick sweep of her room while I was in there and snatched her clothes which haven't been washed for what must be over two weeks (today I have the energy and emotional wit to withstand her yelling at me) anything else that looked like it needed washing also got swiped quickly and is now in the wash. I did her bedding yesterday which was straight forward as she was out in the garden when I stripped her bed. I'm glad I bought the mattress protector well worth the money.

    I am currently converting the house into a smart home, which is not the answer to all things, but can help with some things especially as we are getting closer to winter and mum has changed significantly over the last several months. I'm having Hive installed to control the heating (when I'm at work), as mum now forgets its there and also some sensors fitted to the back door and movement sensors. I am looking at cameras for a few spots, but not sure yet. This is all to help me have an idea that she is OK when I am work and also to assist her with some things like staying warm. I haven't figured out how I can turn the TV on from work yet...any ideas welcome??
     

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