Announcement

Collapse
No announcement yet.

my first post. my name is denise

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

    my first post. my name is denise

    hi oh what do i say? my husband steve was diagnosed with mnd/als last year. it was a shock. i thought something was wrong. i thought dementia then i had a feeling it was something worse when looking up his symptons. i didn't know if to tell him what i thought or just wait for the diagnosis. so the shock became reality. its hard to know how to react. firstly it was we should take each day as it comes and do the best we can. then the frustration that each day was going to be difficult in a different way and that depression can seep in and takeover. there's also anger. we tried to avoid it. not to look up what the outlook could be. that helped a bit but not when he is so exhausted and looks so tired. when he wants help with his shirt and trouser buttons and he cant unlock the door. he cant get the lid off the marmalade or take the top off a boiled egg. ok im crying now typing this. perhaps a good cry will do me good. i havent managed to do that since the diagnosis. im scared of what is coming and scared of being on my own afterwards. i am sorry to be sharing this with everyone but i thought if i could get rid of some of this i might feel better for a while. it helps knowing i am not alone and others are on the same journey. i dont want him to know i am going through this. i want to be strong for him and i feel useless.

    #2
    Hi Denise and welcome!

    It must be heartbreaking to watch someone you love progress and struggle to do tasks that most people dont even think about. It's good that you've had a cry and let some of your sorrow out because bottling things up is not good. I am sure he knows how hard this is for you too and noone can be strong all the time. Remember you are an amazing person for coping with this so no need to ever apologise.

    The forum is a good place for support but I really hope you have someone you can talk to, even if it's on the phone. It must be really hard during this pandemic because you are missing additional support for you, as Steve's carer.

    Take Care of yourself too,
    Love Debbie x

    Comment


      #3
      Hi Denise, welcome to our forums. No apology is necessary and as Debbie said a good cry will do you good. A burn out would be likely if you tried to keep it all in. So well done for having the courage to reach out. These forums are a good place to share, to offer and receive support or just to chat. Take care, love Lynne x
      Last edited by Lynne K; 14 June 2020, 12:10.
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
      I'm staying positive and taking each day as it comes.

      Comment


        #4
        hi debbie
        thanks so much for your response. i do have friends but as much as i can tell them about my worries it isnt the same as talking to those that are experiencing the same or similar problems. its nice to know you are all here and i will look at what everyone else has to say under different topics.
        thanks
        xxxx

        Comment


          #5
          thanks lynne
          i certainly feel better for sharing my fears. i did feel as though i was bottling it all up and i was perhaps not responding to stephen as well as i could. its nice to have new friends.
          many thanks
          denise
          xxx

          Comment


            #6
            Hello Denise, Im caring for my husband too and your words resonate with me too. About the anger mixed with intense sadness. I too get very tearful even at the silliest things which in the past I would have dealt with much better (I hope!...) Its takes a while to accept the "carer" role and not so much the "wife" role I'm finding but please message me if you ever need to chat.

            Everybody on this forum has been very kind when I've posted on here so I hope you will feel some release by speaking here.

            Take care
            Sue x

            Comment


              #7
              Hello Denise. Welcome to the forum. It’s good to see that you alreadyfeel better for having shared your worries. With time, you will both develop different ways of coping and learn to adapt. There will lots of hints and tips we can offer so do not hesitate to ask questions.

              Comment


                #8
                Hi Denise

                I also care for my husband who was diagnosed last year, sometimes it just helps to get it off your chest, especially with people who are going through the same. My emotions are all over the place at times also but it's allowed and you are not alone.

                Lucy x

                Comment


                  #9
                  hi sue thanks for your message. i couldnt understand the anger. it didn't seem fair to react like that but when i am trying to get on with things and he wants me to do this and that and i respnd in a way i am ashamed of. i can do it most of the time but sometimes........ i suppose we have gone from sharing to just me and as i am getting older i miss that person that used to do the blocked sink and the garden and the heavy stuff. now i have to figure out how i can do it or who can i get to help and then i know he will be upset because this was his role. yes and as for crying. i went from not being able to and now anything will set me off.
                  another thing i guess was true living everyday as it comes was alright for a while. we are trying to make the most of each day but the tiredness makes it difficult. i don't want to push him into doing something he doesn't want to and he wants to do it because he doesn't want to let me down.
                  he is also taking the attitude that he doesn't know why he is bothering if he feels so bad. what is the point of being alive and how long do you think i've got? i want to make a joke of it and say well none of us know how long we have and hey you wont have long at all if you are not careful. but in my heart i am crying.
                  sorry
                  denise

                  Comment


                    #10
                    thanks for the welcome. i am trying to get my husband to get involved with the site. i have helped him with afew messages. he isnt very good at putting his thoughts into words.
                    i suppose there was that time when i left the hospital with my son thinking what am i doing. i don't know a thing fancy letting me take care of this little devil. well him and my daughter survived my care from birth to adulthood so no doubt i will find the strength to do this - its just that feeling of doubt that must be in all of us.
                    denise

                    Comment


                      #11
                      hi lucy
                      its nice to know you are there and the same as me. i worry that if i keep on then others might start avoiding me. i have looked at other posts on here on different subjects and i know we need to know some of it because of what is to come but it did make me feel worse. actually terrified. when my husband complains of things now - the problem is mainly in his hands and his arms shaking and the tiredness. in my head i am thinking of worse scenarios and i want to scream. but i just try and help and reassure him. then i hear people complaining of stupid things and i feel like saying well aren't you lucky that is all you have to worry about. i am glad they cant hear what i am saying in my head.

                      denise xx

                      Comment


                        #12
                        Hi Denise.

                        I just wanted to say that your emotions are entirely normal in the circumstances, so please don't be hard on yourself. I recognise my husband (my carer) in everything you said.

                        I cannot imagine how tough it is to see Steve change so much, both physically and emotionally, and to know that the future now looks very different to what you both had planned - you will get through it, it's surprising how we find inner strength when the chips are down.

                        Please never think that people here will "avoid you" if you "go on" - this is where others genuinely understand what you're going through, it's not just a, there there my dear, kind of lip-service...

                        Sending you a big hug.

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

                        Comment


                          #13
                          Oh Denise, Please dont apologise for how you are feeling. You are dealing with the loss of the future you planned together as well as watching the man you love struggling. It's not surprising you feel so bewildered and scared.

                          Also please dont think you have to put on a brave face on here. The forum is a place we can be honest and open because, as Ellie said, people really understand. It's fine and understandable to let out your feelings, better than bottling them up .

                          Take care of yourself,
                          Love Debbie x

                          Comment


                            #14
                            Denise - I see myself in you. I miss my husband doing the little bits of maintenance around the house and garden. It's tough physically as well as mentally. I'm 67 so no spring chicken. I can't bear watching Nigel struggling to eat and often choking on his food. He is also so uncomfortable sitting in his wheelchair that he goes back to bed at lunchtime. I cry every day, at acts of kindness as well as despair, so I identify very much with you. Look after yourself as well. xxx




                            Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

                            Comment


                              #15
                              Hi Denise, no apologies necessary as others have already said. It’s perfectly understandable how you describe the emotional roller coaster that you are on. If it helps in any way at all then vent on. Big electronic hugs, love Lynne x
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                              I'm staying positive and taking each day as it comes.

                              Comment

                              Working...
                              X