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    #16
    Denise do you have plans to stay in Portugal? - if you came back here things MIGHT be easier with the help and stuff available, honestly even though my husband is a miserable sod neither of us can fault our local council for the aid provisions they have made...........so without that I sympathise with you.......at least I have had something and now I am on the local hospice register, as recommended by people on here, and they are going to give me monthly advice until the one to ones are back up and running.........

    about the food - I've tried that with my husband, suggesting he chooses what to have cos I am sick of doing 7 dinners 7 teas and everything else never mind making them just deciding what they are is doing my head in.............on occasion, to make my point, I have actually sat and done nowt.............that usually results in a takeaway when he realises I mean business,

    Gawd

    Sue
    Husband Albert diagnosed PMA Feb 21

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      #17
      Hi Denise and Sue,

      I am so sorry for your situations. I think people sometimes overlook how heartbreaking and thankless a task being an MND carer is. All the attention focuses on the person living with MND when in reality you both are.

      My husband , who is my carer says he feels so guilty if we have a wrong word . We are still a couple so it's bound to happen, especially as COVID restrictions stop us from seeing other people or enabling him to have a break. We are all human and doing our best in difficult circumstances so noone should feel guilty and carers should be very proud of themselves.

      Denise, it must be doubly isolating for you being in Portugal with no support and maybe a slight language barrier.

      Sue,I would recommend bereavement counselling. It took me a while to open up to my counsellor but when I did it really helped.

      Love and hugs,
      Debbie x

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        #18
        Thanks for your kind words Denise x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

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          #19
          Hi everyone.
          I read about the help and support most of you get and I am so jealous. We seriously need to move back because I'm just struggling mentally and physically. We moved here, brought all our furniture and decided we could afford to live here and thought we'd have 20 years or so together. I did feel concerned that we are 30 minutes from any town and to be honest I was not keen to drive here. Stephen incidentally has been told he shouldn't be driving so now any appointments I need to do my bit. Also found out we won't be receiving food for Stephen's peg I need to prepare that myself and the worry that he's getting enough nourishment is something else.
          it's the whole caring for someone knowing they are going to be totally dependant on me and my family are so far away. The covid thing too. Stephen has started physio urgently on his hands and arms. This was supposed to start back in April. Now I'm worried all his hospital appointments will be cancelled again and the trouble getting his prescriptions kicks off too.
          if I was home in England I would be more able to get help. I can't speak Portuguese and have no offer of help. If someone asked me what help I need I wouldn't know where to start. 😐
          when i can think of something profound i will update this.

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            #20
            Denise, Lousy position to be in,

            from where I am standing there's only one thing to do..........organise somewhere to live in England,

            Not knowing your position if you have property to sell there..............get it on the market TODAY,

            You can either load up or sell the furniture, there are firms in England that do that,

            Sorry but you have to put your foot down here and your husband needs to realise, unfortunate as it maybe you are in charge now and he has to see that,

            He needs to realise its not all about him and you must do something before its too late to move him,

            Have you tried your local UK council? explain the position and tell them even if its temporary you need to come home,

            Private renting - even if its short term you can get yourself established back home, doctors, consultants, home care etc etc - do a self referral - that kicks in the aids and equipment,

            Don't want to sound too harsh here but speed is of the essence for you both, my husband is going downhill on an almost daily basis I wouldn't know how to deal with it as he is now,

            Denise get on the phone/web now

            Best Wishes

            Sue







            Husband Albert diagnosed PMA Feb 21

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              #21
              It sounds like your husband needs to meet fellow livers and soon. πŸ‘
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #22
                Originally posted by denise View Post
                Hi Mary
                no we don't have anyone. We're in Portugal. I don't have anyone close to talk to. No support whatsoever.
                Not strictly true denise , you do have us lot. Only joking. I tend to agree with Sue about getting back to England, though. I'd feel completely lost in another country.

                There is so much understanding and compassion in this thread.
                Each day is made easier with a bit of humour.

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                  #23
                  Thank you everyone. I know you are all right. Things are just going to get worse here and I know I'm not going to be able to cope. I don't know what I would have done without all of you to talk to. You don't know how much it means.
                  πŸ˜—
                  when i can think of something profound i will update this.

                  Comment


                    #24
                    Denise let us know what you do, have a look at today's post about hospice, someone had a lovely hand foot massage yesterday - Stephen might like that!
                    Convince him,

                    best wishes

                    Sue
                    Husband Albert diagnosed PMA Feb 21

                    Comment


                      #25
                      Hi Denise,

                      I really feel for you coping with Stephen's diagnosis without the support of professionals and your family and friends. You must feel very isolated and alone .. although you're not alone on here.

                      i was in hospital in Spain in January and it was very scary because of the language barrier. My Spanish is more rubbish than i thought in spite of years of lessons. We used Google to translate and my consultant e mailed notes but it was still stressful. It really gave me an insight into how people with MND communication difficulties have to cope in hospital. After my husband broke me out ( I'm still not sure what I signed !) we had to stay in Spain for another 6 weeks and I felt very vulnerable, even though we have friends there and family visited.

                      It must feel like you have a huge mountain to climb to get home because there will be so much for you to sort but you can't continue feeling so isolated.

                      Im thinking of you and sending especially big hugs,
                      Love Debbie x

                      Comment


                        #26
                        Debbie you described it exactly how I feel. The only contact we had was a young woman who came to check Stephen was ok with his bipap machine. She spoke good English and I thought at last if there are problems I can ask her to phone for me. We haven't seen her in weeks even though she is supposed to come every month. The whole upheaval of moving back is daunting. Moving here we had the excitement and our health and 9-10 years younger. We know it will be difficult to sell our property and no idea where we will go. I don't exactly see us moving in with our children. It all seems such a big mess.
                        love to you all
                        Denise xx
                        when i can think of something profound i will update this.

                        Comment


                          #27
                          I can recommend northern England, great people πŸ˜„
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            #28
                            I was born in Sunderland ☺
                            when i can think of something profound i will update this.

                            Comment


                              #29
                              Hey up lads n lasses
                              Husband Albert diagnosed PMA Feb 21

                              Comment


                                #30
                                Originally posted by denise View Post
                                I was born in Sunderland ☺
                                You’re a Mackem and I am a Tackem and I suspect everyone is wondering what is he going on about.

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

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