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    Rest bite for my wife

    love
    Last edited by Terry; 23 November 2016, 15:41.
    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.

    #2
    Hi Terry

    Can you have carers come to your home so you don't have to leave ? If so during the time the carers are there can your wife spend time at a friend's or relatives home for a little break ? Or if carers can't be provided is there a friend or relative that would stay with you for a few days ?

    It's a shame you have to leave your home into an environment that is not comfortable for you. I sincerely hope you find a solution that works best for the both of you because neither of you need any additional stress or worry.

    Much Love
    CCxoxo

    Comment


      #3
      Hi Terry,

      Sorry for butting in, I know it’s in the “Ask MND Connect” section.

      It’s always a dilemma isn’t it, this respite lark. We’re stuck between a rock and a hard place in giving our carers badly needed respite and surviving a traumatic situation.

      If the hospice isn’t too far away, can they (their handyman) collect your own armchair to bring in or do you know a man with a van who could bring it in for you?

      When you say you don’t get your meds, do you mean they don’t give them to you on time or they don’t have your meds in stock? I type up a list of times, med name, dose and method of giving each med and email it to the hospice before I arrive. I also bring it with me and the Doctor charts it up; if the meds are charted, they must be given. I also bring in a few days supply of meds in case they don’t have any in stock – my admission days are on weekends.

      Yep, the manual wiping isn’t dignifying but I tell myself it’s just another bum to them! They are so used to it.

      Do you mean when you say the “smart room” is occupied that there’s only one room with internet availability? Or is there more to it?
      I would really struggle if my hospice didn’t have WiFi; it’s the only way I have to keep in contact with my family.

      My BP & HR are always sky high on Day 1, then goes back to normal. I do not like going in but I think, as you do, that it’s important the family get a break.

      Hope things can work out for you.
      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        I hope it works out for you Terry and nothing is ever as bad as it seems at the time (ok sometimes it is ) and maybe your working yourself up a bit? Try and look at the positive aspects of your stay. U get to see some new faces and a chance to dust off those old chat up lines that used to work before

        And having ur bum wiped by a nice nurse may feel better than a machine and think how much you will appreciate home when its time to come home.

        Comment


          #5
          Ali Chris is right Terry try to find the rainbow thru the clouds....as difficult as it can be.

          and maybe when you come back home I'll be in the chicken shed to greet you with your golden egg and scrambled eggs ! I know how much you would like that lol

          No worries Santababy things will work out try not to stress over it.

          Love you
          CCxoxo

          Comment


            #6
            Hi Terry
            Sorry,that you are having problems with your stay in the hospice, I couldn't add any suggestions than what the others have said.
            But I really hope you work things out.
            Mags x

            Comment


              #7
              Dear Terry,

              It certainly seems that you have a significant dilemma over the issue of rest bite care, I wonder whether the hospice could have acted to improve their facilities following your previous visits as I'm sure that there must be others who require a riser recliner chair or access to a wash and dry toilet. Still the thing is that this is for your wife's benefit as well so lets hope that your stay has some other benefits, I quite understand why you are not keen.

              I am finding it quite difficult to comment on the majority of threads here as they often refer to things which are as yet thankfully outside my direct experience, and yet I want to feel included but the price for inclusion on this particular forum is extremely high so far I have been sitting in the cheap seats.

              I hope that you will be able to keep in touch and that your stay in the hospice will be as good as it can be.

              Cheers,

              John

              Comment


                #8
                John,

                No one on this forum is in the cheap seats, whatever stage of the disease and I include carers, partners and friends. We all help each other, whether it be advice, moral support, empathy or even a joke. We are bound by a common goal and that is to make the most of every day for ourselves and our friends.

                Like you, I hope that Terry can have a relaxing time in hospice and that his wife gets the respite she deserves. It would appear that the issues facing Terry are not insurmountable as they require practical solutions, many of which have been suggested but we all feel helpless as we are not present to intervene.

                Terry

                I hope you have a pleasant time in hospice and your anxiety subsides by tomorrow.

                Barry
                I’m going to do this even if it kills me!

                Comment


                  #9
                  Terry
                  Big hugs for Hospice, I hope you manage to find solutions for some of the problems.

                  Wendy xx

                  Comment


                    #10
                    thanks for the idea's and support, folks;

                    this is not nice putting so much pressure on a marriage or is it a carer and a burden.

                    sorry guys.


                    love terry
                    Last edited by Terry; 23 November 2016, 19:22.
                    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


                      #11
                      Having a moan helps a little;

                      Some one said that Ellie and I never moan.

                      Wrong, 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


                        #12
                        Hi Terry

                        Sorry to hear about this, I hope things can be worked out.

                        Best wishes

                        Dave..
                        "Son, if you really want something in this life, you have to work for it. Now quiet! They're about to announce the lottery numbers!" Homer Simpson

                        Comment


                          #13
                          Hi Terry, it sounds a really bad dilemma you and you wife are facing, I cannot believe that basic riser recliner chairs are few and far between . Maybe you could bring the problems you're having to the attention of local powers that be.
                          On the other hand you could always come stay in our chicken coop, but you would have to share a perch with George who wakes up about 5 am.
                          We got a brilliant care company to help care for dad in his own home, the same two male carers came so dad was more than happy and we were too. Lorret
                          Thousands of candles can be lit from a single candle,
                          and the life of the candle will not be shortened.
                          Happiness never decreases by being shared. Buddha

                          Comment


                            #14
                            Hi Terry,

                            I am so sorry to hear about the issues and concerns you have regarding your stay in the hospice. It's sad that your stay should be fraught with so many problems.
                            I think the other forum users have made some very good suggestions. I wondered if it would be helpful for me or another member of the Connect team to contact the hospice to discuss some of your concerns, particularly the issues with your medication. Are you able to tell us a little more about this problem? In addition you mentioned you had concerns regarding the carers at the hospice. Is it that they don't understand your needs?

                            With regards to your chair, as suggested by Ellie, would it be possible for this to be moved to the hospice? Is there room for it?

                            Look forward to hearing from you.
                            Kind regards
                            Ruth
                            MND Connect
                            Contact us on 0808 802 6262 or at [email protected]

                            Comment


                              #15
                              Hi Ruth;

                              Medication along with things like flushing the peg and cleaning it just can take so long to organize and get done. it does spreed out time so much sometimes. theres a new drug system now.

                              Carers are a long story and that's very complicated.

                              I have a chair but I don't know how good it will be as I have no time as i'm so busy trying to get things sorted for the next loo and shower time.

                              having different carers and none standard needs and equipment makes things incredibly hard when you can't talk or even point well.

                              i've now got a table that lowers itself with the weight of my hand. not too much of a problem you say untill it lands on my wheelchair controller sending it forward, i just managed to turn it off before it squashed my feet. but was then trapped under the table and banging my glass didn't attract any one. another problem to get sorted.

                              i am just a moaner, they are all very very small things that are so easy to sort out if you can talk or move well.

                              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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