Announcement

Collapse
No announcement yet.

New carers

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    New carers

    I'm a specialist visit. I get two new starters. If I wasn't laughing I'd cry. 😭
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    Good grief

    They are struggling for staff but still. As a nurse I would be horrified, as a carer it is horrible for them too.

    Had a 4 week gap in hospice respite visits and no call to say why.

    When I asked, more visits required and less staff, a few have left for nursing training. But still a phone call would have been nice.

    matthew55 hope you survived it.
    Donna

    Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

    Comment


      #3
      Matthew seriously you could not mek that up
      Husband Albert diagnosed PMA Feb 21

      Comment


        #4
        Originally posted by matthew55 View Post
        I'm a specialist visit. I get two new starters.
        My best carers started with me on day 1 post induction training, as their first client: one had been a chef, one had been in retail and one was fresh out of college.

        None had preconceptions about how things should be done, all were mouldable blank canvasses - I would take common sense over experience anyday, having seen first hand how true "you can't teach old dogs new tricks" is...

        Hope your newbies have bucket loads of common sense 🤞🤞🤗🤗😘😘
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          My permanent carers start on Monday, hope they are as nice as the emergency team we have just had they’ve been brilliant 👍
          Janette x

          Comment


            #6
            I’ve had new carers for a week but just don’t seem to be experienced in patient handling. Twice yesterday they put my toileting sling on upside down, fortunately realising before lifting 🥴, never seem to get the other sling correctly positioned, never seem to get my garments pulled up comfortably, so many jobs unfinished. They mean well so I feel awkward but we’re going to have to look at another agency 😕
            .
            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

            Comment


              #7
              Originally posted by Nettie View Post
              My permanent carers start on Monday, hope they are as nice as the emergency team we have just had they’ve been brilliant
              Hope so too Janette 🤞🤞
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Originally posted by Rosemary6NT View Post
                we’re going to have to look at another agency
                That's a pain Rosemary - if nothing else, you'll be better equipped to get across your expectations when interviewing new agencies.

                Hope you get sorted very soon 🤞🤞🤗
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  Matthew, hope they are lovely and mouldable .
                  Janette, fingers crossed for your carers.
                  I have just been told 8 out of 9 agencies approached can't offer me anything, only Home Instead yet to respond. Did I remember one of you had this agency?? xx
                  Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                  Comment


                    #10
                    Originally posted by Heather R View Post
                    ... only Home Instead yet to respond. Did I remember one of you had this agency??
                    I used them a few years ago Heather R and Lynne has them earmarked as a possible provider if/when she needs care.

                    Like many care agencies, they operate as a franchise, so their standards may not be equal accross different areas, but you can check out your local Home Instead office on the CQC website.

                    8 out of 9 so far can offer nothing 😱😱😱😘
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      I'm following this with interest as I embark on this journey.

                      Heather R
                      I'm having a similar experience with getting care. After lying to myself that I didn't need it, I took Ellie 's advice (thank you) and put on my big girl pants and asked for help. Since then (end of December) they have been unable to find any care. Today I had a phone call to say they have found an agency with a vacancy....it was the 31st one they had rung! I think I may have lost the will to live if I'd had to make all those calls.
                      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                      Comment


                        #12
                        Originally posted by Tabbycat View Post
                        I had a phone call to say they have found an agency with a vacancy....it was the 31st one they had rung!
                        31 😲

                        Glad your magic pants worked 👍👍

                        No harm in writing down what you expect, need and want the carers to do before they start with you, if there are tasks they won't do or conditions they impose on you which are unworkable, now is the time to find out.

                        Let's hope the carers are good 🤞🤞 Notwithstanding the difficulty in carer availability, you don't have to put up with substandard care.

                        Best of luck 😘

                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Thanks Ellie that’s useful. Only registered in December, no inspection yet xx
                          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                          Comment


                            #14
                            Tabbycat wow 31! Hope they’re good! Shall follow your experience with interest too! Xx
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                            Comment


                              #15
                              I am following this with interest.

                              I have had to admit that I know need help in looking after my husband, he is 5ft 11 and I am 5ft 2 and transfers have become difficult because I haven't got enough hands and arms to position his limbs and stop him leaning one way or another. We currently use a MOLIFT but have a hoist on order (not a moment too soon)

                              We have been managing with 2 x 30 minute carer visits but have just been approved for 42 hrs a week and are embarking on employing a PA ourself via direct payments route. A number of agencies have already turned us down as "too complex" to cover the period until (if) we manage to recruit. I have been told to prepare for great difficulties in finding someone.

                              I can see the benefit of Ellie comment re moulding your own and have said that the right attitude and common sense is more important than experience of MND in a carer.

                              We shall see.......

                              Comment

                              Working...
                              X