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Rest bite for my wife

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    #16
    Hi Lorret;

    The rise and recline chair issue was bought up about four years ago. one person wanted to get rid of them. i thought against it with most of the ot's and nurses. they did get some new ones but all are too small for six foot people. I was on the committee for two or three years but had resign because it was feeling like a rubber stamp committee. I then campaigned for a larger chair, they got a special one for larger people. it is a single motor one and with four cushions at the back of me and under my legs it was ok for short periods.

    so it has been just over two years now that i have not had a comfortable seat to sit on in the hospice so no where to get a nice relaxing foot massage or similar. mind you along with the chairs the volunteer and paid massaging people seamed to have gone.

    i did have one chair for six days on my last rest bite that was wonderful.

    it's a sore subject with me and best i just suffer for a few days and forget it.

    love terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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      #17
      Oh Terry
      That's such a shame, I love my foot massages at hospice. I hope mnd connect can give them a bit of a push on your behalf. Everyone needs a little rant and let of steam, little things become big things with this illness especially when you can't get comfortable.
      Xx

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        #18
        i don't think that can't do much from there position, maybe the local mnda person can ask a few questions but it's so hard without jeopardizing my care even more.

        love terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

        Comment


          #19
          Hi Terry
          I hope you have settled down in the hospice now, and things are easier for you than you expected.
          Big hugs
          Mags x

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            #20
            Terry,

            Do they do a Care Plan on admission? (I'm sure they are required to) You should get your requirements documented so there's a record of them. I, for example, ask for my extension sets to be cleaned daily.

            I include my flushes under my "Medications Schedule" so they're put on my Meds Chart and therefore must be given at a specified time and signed as given, just like meds.

            Thinking of you sweetie,
            Ellie xx.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #21
              Hi Terry

              Can you or your wife request a one to one (1:1) ? an Aide that is there for you care specifically. Or a staff member that can be assigned to check on your needs every half hour or so to ensure your receiving quality care, and your specific needs, and requirements are being met.

              I hope your stay will be a comfortable, once you settle in a little more.

              Thinking of you.
              CCxoxooo

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                #22
                Santa baby here is a little funny to help you on your way, true too. When my son was an angelic four year old we took some friends to the New Forest. On the way we stopped for ice creams. I asked the kids what they would like and to my horror angelic one said ' Arty Farty had a party and all the farts were there TuttiFrutti did a beauty and they all went out for air.' I'll have TuttiFrutti mum please.😱 Grandpa??!!! Happy days xx 😆

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                  #23
                  Thinking of you Terry and hoping things will be better than you expect.
                  I well remember the communication problems and indignities! Trevor only had single days at the hospice so he didn't have all of the issues there that you anticipate, but when we had carers at home so that I could sleep then there were problems with some of them just not understanding him ... they were stranger's.
                  I hope you'll be able to focus on the good stuff and that your wife has a refreshing break. I'm sure you'll cheer up some of your fellow "residents" with your wonderful sense of humour!
                  I'm not good at praying but for you and your wife I will try.
                  Love to you both, Nettie

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                    #24
                    Hi Nettie;

                    i'a afraid it is worse. i just give up. i have bought up the same points time and time again. i made an offical complant last time i was here and told that they would make every effort to get me on the loo before my carer came.

                    i am just not going to bother any more and let everything go over my head. i will need a rest today, that's a first for a long time.

                    unhappy santa but i do like your funnies
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                    Comment


                      #25
                      Oh Terry I am so sorry that you are not getting the care you need and deserve.You are so supportive to every one here and I feel so sad that you are so down at present.I am sending you a Big Hug

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                        #26
                        Santa baby. A big hug to try to make up for the miserable time you are having. Hugs. Ann xx

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                          #27
                          Terry you need a patient advocate or the patient representative, do you have staff members there that do that ? if not, what about the supervisor ? Official complaints should not be ignored. Can Mnda get involved, and contact them on your behalf and make sure you needs are being met?

                          Most upsetting you went there for rest, and that's what you should be able to do, and not have to be distressed, and worried over your care. Do try to rest and relax as best you can.

                          So sorry to hear this. If you like PM me their phone # I will speak with manager/supervisor on your behalf.

                          Sending you big hugs and kissesXOXOXO
                          CC
                          Last edited by ; 23 November 2016, 17:20.

                          Comment


                            #28
                            Hi Terry
                            I haven't posted much on the forum at this stage but I have followed everyone elses postings.It is clear from your own postings what a supportive and caring person you are and obviously very much admired by the others on the forum. Although we might be total strangers it makes me sad to hear how much you are struggling at the moment.I hope you get through it better than you envisage. I believe eveyone on this forum needs 'Happy Santa' back
                            Wishing you all the very best
                            Squash Boy

                            Comment


                              #29
                              That's very well said Squash Boy. Terry is good friend and supports us all, all the time.

                              He deserves better, and I hope Mnda will step in on his behalf to ensure his week stay is as comfortable. and pleasant as it can be.

                              xox

                              Comment


                                #30
                                thank you all;

                                love terry
                                TB once said that "The forum is still the best source for friendship and information."

                                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                                Comment

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