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    Intro - Caregiver

    I wish this weren't a site that I was happy to find but I have a feeling that it and other sites like it are going to be very important to me in the coming years. My 65 year old wife has just been diagnosed with MND. To say I am profoundly sad and devastated is an understatement. We both feel as though we have been hit by a ton of bricks.

    This diagnosis is so unexpected. No family history of ALS and the women in my wife's family usually live a long, full life well into their 80's and 90's. We had planned on that being the case and figured that since I am 8 years older than her, I'd be the first one to go. Life had other plans and didn't pay attention to what we thought or desired.

    I look forward to "talking" to folks here soon.

    Thanks to whoever founded this site.

    #2
    Hi and welcome SligoBoy. Yep your heads are probably fairly mashed at the minute. It takes time to sort your thoughts out.You will always get support and help from this amazing bunch on here.

    Hope you don’t mind me asking but do you know any if the West Life boys 😁 they were my wife’s fav band

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      #3
      Welcome to the forum, Sligeach, and desperately sorry to hear your much-loved wife has recently been diagnosed with ALS. I know your emotions are on a spin cycle right now, but it does calm down, or you kind of just get used to it...

      I am glad you took that brave first step and introduced yourself and we look forward to getting to know you.

      Look after yourself.

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

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        #4
        Hello Sligoboy - you will, as Phil says, get plenty of info here.............its devastating isnt it, being a carer can be hard

        I went to Sligo many years ago on a driving tour ...........loved that whole thing

        best wishes

        Sue
        Husband Albert diagnosed PMA Feb 21

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          #5
          Hello Sligo boy,I am sure you are both devastated.I was 65 when I got diagnosed in June 2020.My husband is not really computer savvy but likes me to tell him about this site and the support we try to offer each other on here.
          Like your wife many of us had no idea we had MND and reeled with the shock.Of course it impacts hugely on partners, spouses, carers as well as us with MND but speaking for myself the heightened stress we both experienced has calmed down over the months.
          Best wishes
          Mary C

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            #6
            Welcome to the club where membership is free and unwanted but the company is excellent. 👍

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              #7
              A warm welcome to the forum from me Sligoboy,

              I am so sorry for your wife's diagnosis. Its such a shock isn't it and our hopes and dreams for the future change. You must both be reeling !

              The forum is a good place for friendship and support so I'm glad you've found us.

              Take care of yourself,
              Live Debbie x

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                #8
                Welcome Sligoboy. Here you will find a great bunch of people who either have this horrible diseases or has someone they love with it. Feel free to shout, scream, cry and laugh. We have all done it and will be there for you.

                Richard
                Richard

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                  #9
                  Hi sligo boy

                  you are right about the ton of bricks. My husband was diagnosed with als nearly two years ago. He suffers mentally and physically. It's very difficult. We have periods of calm and then it feels like drowning. This certainly wasn't how we expected retirement to be. We moved abroad and now desperately need to return home to be with family and friends.

                  there are lovely people on here who will make you very welcome.

                  love and hugs Denise xxx

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                    #10
                    Hello there. My hubby was diagnosed nearly three years. I really wish they didn’t describe MND as a terminal illness. I’m not saying life has been easy but we still went on holiday, days out etc. As much as we could physically manage.
                    Hubby remains very positive and feels there’s still a lot he wants to achieve.
                    Best wishes to you and your wife.

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                      #11
                      Hi Sligoboy, So sorry that your wife and you have been hit by this horrible disease. I do agree with the others that after the initial shock it felt a little easier to face in my experience, and do hope it's the same for you. Do hope also that you can still do some of the things you planned, and find some joys amongst all the challenges. and that you get lots of support. Love to you both
                      Diagnosed July 2020, ALS bulbar onset.

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                        #12
                        Hi SligoBoy, I’m sorry about your wife’s recent diagnosis and like others have said we know about the ton of bricks but they get lighter eventually. Take care and ask and/or share whatever you want or feel like. Lynne
                        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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                          #13
                          Originally posted by Bowler View Post
                          Hi and welcome SligoBoy. Yep your heads are probably fairly mashed at the minute. It takes time to sort your thoughts out.You will always get support and help from this amazing bunch on here.

                          Hope you don’t mind me asking but do you know any if the West Life boys 😁 they were my wife’s fav band
                          Can't help with the West Life Boys Bowler as I am not from Ireland or the UK (I did live in Oxfordshire though in the early 70's if that counts). I'm in the States. Guess I should have picked another name for my online ID. I'm a retired geologist and I often incorporate rock formation names into my online IDs. The "Sligo" in SligoBoy is an underground oil and gas bearing formation found in the southern US.


                          Last edited by SligoBoy; 19 April 2021, 03:35.

                          Comment


                            #14
                            Originally posted by Suefromwakey View Post
                            Hello Sligoboy - you will, as Phil says, get plenty of info here.............its devastating isnt it, being a carer can be hard

                            I went to Sligo many years ago on a driving tour ...........loved that whole thing
                            Sligo sounds nice. Wish I had visited there when I had the chance back in the very early 70's. I was in the American military and was stationed at an RAF base in England for 3 years. I drove all over England, Wales, Scotland, and most of the EU countries.... but I never made it to Ireland even though I'm of Scotts-Irish Ancestry. I had plans for my wife and I to go to Ireland and to revisit Wales in a year or two but I guess that's probably not going to happen now with my wife falling ill with ALS.

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                              #15
                              Originally posted by Suefromwakey View Post
                              Hello Sligoboy - you will, as Phil says, get plenty of info here.............its devastating isnt it, being a carer can be hard
                              I'm at the very beginning of this journey Sue. The only care giving I've done so far has been on the emotional level. We just received the final diagnosis last week.

                              Her ability to speak is rapidly deteriorating. That is probably the cruelest of all the symptoms because she is a bubbly, outgoing person who likes to interact with everyone she meets. I've bragged to others that she (unlike me) could start up a conversation with a fence post, but ALS is slowly taking that ability away from her. It's heartbreaking and sad to witness.


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