Announcement

Collapse
No announcement yet.

Feel lost

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

    Feel lost

    Hi. Two days ago I received my diagnostic MND bulbar. My symptoms start first week April this year one week after the first jab for covid. Less 3 months I can't eat, drink and almost not talk, losted more than 10kg weight. Struggling carry my shop bags. They say my life will be finished soon. But on this moment I just thinking about my kid's, one is diagnosed with autism. I'm scare for them more than me. In this moment I'm just rushing to organise as much I can for the things they will need when I'm not year anymore.
    I'm struggling on what to say to them about my diagnostic.
    Yesterday I make the school aware and talked with my oldest son (26 years old) about everything. I feel so unfair put so much responsibility on my son, because I m a single mother and he will need to care for the brother's (15 years old with ASD and adhd, 10 years old with Adhd and waiting for the ASD) it's so much weight on my oldest son.
    I feel like I'm stealing his life to put mine on his shoulders. πŸ˜”
    Now I'm waiting for there doctor help me how I'm going give the bad news to my son's.
    Does anyone with young children's can advise how to tell them πŸ˜”. How you done that.

    Mmsm ❀️

    #2
    I’m sorry for you having to join us on this awful journey but glad that you felt able to reach out. I don’t have young children, my four are mature adults but others on here will reply to you I’m sure.

    If you have enough voice to speak on the telephone could you ring MND Connect as they are really good with talking things through and offering solutions and/or suggestions. Failing that you could message them. They may see these comments and message you.

    I hope that your local services (OT; Speech Therapist; Physiotherapist; Dietitian and Wheelchair Services) contact you very soon to make your environment etc safer and that you can receive support.

    I’m sending you a big virtual hug πŸ€—, Lynne xx
    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.

    Comment


      #3
      Mmsm

      I'm so sorry to hear your struggles. It was hard enough telling our children and they are so much older.

      It's nice to meet you and I hope you find this forum of interest and help.

      love and hugs Denise xxx

      Comment


        #4
        Hi Mmsm,

        I am so sorry to hear of your struggles. My daughter was 20 when I found out and telling her was what I dreaded the most. She surprised me! She has been a pillar of strength after the initial shock. I think that maybe your son will surprise you too. I am sure he knows that one day he will be looking after his brothers in one way or another and with the support of various agencies I hope things can be sorted to put your mind at ease. Don’t be afraid to ask as many people as you can for help, I know its rotten to nag but we all do what it takes

        Keep in touch with us all here - it really does help.

        Sarah x

        Comment


          #5
          Hello. Dreadfully you sorry you find yourself with us. Other people in similar position may be able to advise but the suggestion about mnd connect is a good idea to start. They will be able to check you have everything in place that you might need. xx

          Comment


            #6
            Hello Mmsm and welcome to our club where members are happy to share advice and offer support.
            I’m going to do this even if it kills me!

            Comment


              #7
              A warm welcome to the forum Mmsm,.

              I am so very sorry for your diagnosis... you have done very well to post so soon as you must be feeling totally overwhemed. You have such alot to cope with so I hope you are in the process of getting help and support from healthcare professionals as Lynne has suggested.

              The forum is a good place for friendship and practical and emotional support so please post if you have any questions or if you need a rant.
              Sending you big hugs,
              Love Debbie x

              Comment


                #8
                Mmsm you're in a great forum for advice and support. Telling children must be so hard....there is advice on the MNDA web site about just that subject I think.
                My girls are grown up with their own children...but telling them was awful. It's good you've spoken to the school that in itself is a big step.πŸ‘

                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                Comment


                  #9
                  Mmsm My children were quite a bit younger than yours when I told them of my diagnosis and what that meant for my mobility, speech and general abilities. I had counselling, which helped me get my head in a good place, and I spoke to a specialist counsellor before speaking to the children. I highly recommend counselling, your local hospice probably offers it but you may need your GP, nurse or doctor to refer you.

                  The MNDA publishes good information which you may find useful - links:

                  https://www.mndassociation.org/suppo...and-guardians/

                  https://www.mndassociation.org/suppo...-young-carers/

                  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


                    #10
                    I asked the doctor at CAMHS who follows my son for advice on how to tell them. I'm in a dilemma between saying or not saying. I wonder if it won't be easier to let it happen without them seeing me as if I were a package with an expiry date. In two months my situation got worse, I lost my voice, my ability to eat by 80%, my body is heavy and it's slow, I lost 12 kg, I'm 50 kg now. From the belly up, the muscles tremble and lifting 1kg is difficult. The doctor said I'm progressing very quickly. That's why I don't know if telling the kids is going to be a good idea. πŸ˜”

                    Comment


                      #11
                      Children are very perceptive and they can be helpful if they understand what is going on. It is your choice but I suggest that you have a frank discussion.
                      I’m going to do this even if it kills me!

                      Comment


                        #12
                        Hi again mmsm. Does a nurse visit? Please make sure you're getting proper nutrition. It's important to maintain your weight for all your sakes x
                        Last edited by Gordan1111; 3 July 2021, 09:33.

                        Comment


                          #13
                          hi mmsm - this is my experience - everyone's will be different

                          i'm on day 13 since diagnosis of MND. single mum with an 18 year old daughter. told her on day 8 - second hardest thing i've ever done in my life. the hardest BY FAR was day 1-7; just thinking about telling her and the impact it would have on her life crushed me. i did discuss with a close friend on day 2 as that was the most pressing need for me in taking in the news - that helped a lot. i don't think a professional could have advised me better than the friend who has been part of my daughter and my life for years and knows how we work, and has children herself.

                          In the end, the telling was nowhere near the dread i had felt. there is no way to do it 'right'; your love for them, and theirs for you, will get you through.

                          i think i have emotional lability - or who knows if crying your eyes out is normal in the circumstances - so i started telling my daughter about how i had that, and it was perhaps part of the symptoms she had seen already - i've lost about 70% of speech over the last six months. and then i just blurted it out and mainly mimed whilst sobbing that what i had was bigger than just my tongue. and she totally got it, and hugged me and i cried more than her - i think she was trying to be strong for me. And then she went to her room and cried for 20 mins - and i went up and she'd googled everything - and it was right that she had her own time and space to take it in.

                          and then it was done. done, done, done. and she's been brilliant and supportive and probably better informed than me since. so take a deep breath, let go of 'protecting them' and just do it, however badly you may feel you might do it. there is no script and you can't control the telling, anymore than you can MND.

                          and then you, like me and my daughter, will be on the other side............


                          xxx

                          Comment


                            #14
                            Originally posted by JAC View Post
                            hi mmsm - this is my experience - everyone's will be different

                            i'm on day 13 since diagnosis of MND. single mum with an 18 year old daughter. told her on day 8 - second hardest thing i've ever done in my life. the hardest BY FAR was day 1-7; just thinking about telling her and the impact it would have on her life crushed me. i did discuss with a close friend on day 2 as that was the most pressing need for me in taking in the news - that helped a lot. i don't think a professional could have advised me better than the friend who has been part of my daughter and my life for years and knows how we work, and has children herself.

                            In the end, the telling was nowhere near the dread i had felt. there is no way to do it 'right'; your love for them, and theirs for you, will get you through.

                            i think i have emotional lability - or who knows if crying your eyes out is normal in the circumstances - so i started telling my daughter about how i had that, and it was perhaps part of the symptoms she had seen already - i've lost about 70% of speech over the last six months. and then i just blurted it out and mainly mimed whilst sobbing that what i had was bigger than just my tongue. and she totally got it, and hugged me and i cried more than her - i think she was trying to be strong for me. And then she went to her room and cried for 20 mins - and i went up and she'd googled everything - and it was right that she had her own time and space to take it in.

                            and then it was done. done, done, done. and she's been brilliant and supportive and probably better informed than me since. so take a deep breath, let go of 'protecting them' and just do it, however badly you may feel you might do it. there is no script and you can't control the telling, anymore than you can MND.

                            and then you, like me and my daughter, will be on the other side............


                            xxx
                            A big virtual for you and your amazing daughter πŸ€— πŸ€—, love Lynne xx
                            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.

                            Comment


                              #15
                              Diagnosticb MND bulbar onset 29/06/21

                              Because of the rapid progression I'm feeling about my illness.
                              I chose to talk to my kids today. I didn't have the courage to tell them exactly what's going to happen soon, (that I have a expiry date on my forehead) but they know I'm not going to get better and there's no cure.
                              I hope I have the courage later on.
                              My 15 years old son with autism. He not showed any emotion but said "if you can't eat you gonna die" and close himself in the room and not talk about this anymore. πŸ˜”
                              Can't imagine what's going on his mind.
                              Can't imagine what happened on his head.
                              My 10 years old son, cry and so upset, he make a few questions about this but still
                              ​​​​don't understand why this happened or why I can't pass this to him. 😭
                              My oldest son 26, I told him 4 days ago and he don't said one word about this till today. πŸ˜” When he lost his dad he not cry for years. πŸ˜” Don't know what to think about.
                              My boyfriend continues to act like nothing has changed, but I find him crying in secret several times. He is unhappy with all this and the rapid evolution I am undergoing. He has been very strong in front of the kids and successfully and has been my anchor. But how to relieve his pain.πŸ˜”
                              And me... Well... Try show them a good face and it's everything okay (isn't but OK).
                              Just hope can celebrate my son birthday in October πŸ˜”

                              Comment

                              Working...
                              X