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    a New Carer

    I have just become a carer with my wife having been diagnosed with MND, Where do we go from here? We have had several organisations say that once diagnosed then help will be forthcoming. From where? By whom? Our GP has never had as a patient anyone with MND and is not at all able to advise.
    I know that we need to get a local council assessment but we are faced with home mods; home care; later nursing home; wheelchair; change of car etc. I assume it is all somewhere but guidance on how to get started would be much appreciated. John G

    #2
    A warm welcome to the forum John G sorry for your wife's diagnosis.

    May I ask how recent the diagnosis is and was it made in a specialist MND Care Centre/Clinic?

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

    Comment


      #3
      Hi John,

      I am very sorry that you find yourself here, but hopefully you will find help and support here when you need it.

      It will all seem very daunting at first as there are multiple things to think about as you have already described. You won’t need to do everything in one go and you will find that some people are going to be more helpful to you than others. A good starting point will be your occupational therapist, have you had a referral yet?
      Take care,
      James
      Foxes Never Quit 💙

      Comment


        #4
        John G welcome to the forum.
        A good place to start looking at info might be the MNDA homepage....lots of links to fact sheets & advice & support.

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

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          #5
          John G I agree with Linda you could do worse than have a look at the association homepage.

          From own experience there can be a real temptation to start throwing money at what at first glance look like great bits of kit. My advice would be don’t rush into anything without first talking with an occupational therapist to understand what can be provided plus what the best solution might be for your circumstances.

          Comment


            #6
            John G sorry to hear about your wife’s diagnosis. When my husband was first diagnosed in October 2017 he was relatively well with just slight weakness in his hands and arms. The only person supporting us at that time was a super Occupational therapist who arranged for a stair lift as there were difficulties gripping the banister going upstairs. O T has stayed with us throughout and we now have a Gerebit toilet.shower toilet chair and hospital bed just recently. We had 6 monthly appointments at the Walton Centre and to Aintree hospital where my husband was given NIV due to poor lung function. Only recently we have needed speech and language support. Usually any concerns can be raised with your wife’s MND nurse who will refer to various agencies.
            it is very daunting at the start and as “Bowler” advised wait for the OT advice and she/he can also refer to other agencies when and if necessary.
            Take care xx

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              #7
              I can only echo others comments regarding input from an occupational therapist. We have also benefitted from close and constant contact with the local living well service at the hospice.

              They have been instrumental in linking in with other services as they became necessary. Each specialism has then "dipped in and out" as required. They all link up at MDT meetings and cross refer as required.

              It is initially very overwhelming and you feel that you want everything arranged straight away, but as long as you get the relevant kit just before you really need it (OT knows!) you will be fine.

              In Wolverhampton health services are very good, but it can be a postcode lottery unfortunately.
              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

              Sense of humour intact throughout.

              Sadly passed away peacefully 2/9/22

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                #8
                I'm in the same place, John - wife's diagnosis exactly 4 weeks ago. I hear support is out there but how do I get at it?

                We've met our MND nurse who was lovely and started several balls rolling. We have appointments with OT and speech therapist next week. Disappointingly, our GP hasn't made contact in the 4 weeks since diagnosis. I phoned the MND Association for help with a particular issue and they were very helpful.

                I'm learning that you have to make things happen rather than wait for them but I guess that's the way of the world these days.

                This forum is a great help and I hope we'll both continue to learn from the experience of others. Good luck on this journey!

                Comment


                  #9
                  Hi John ,

                  Sorry to hear about your wife’s diagnosis, but welcome to the forum. My wife was diagnosed with ALS just over 2 years ago. My wife’s MND nurse and OT have both been brilliant and regularly in touch, which has really helped in terms of making sure my wife has the right equipment (bed, chair, wheelchair, hoist etc, and advising on adaptations to the house), as well as support and counselling for me and the kids.

                  The support that will be available to you is sadly very much dependent on where you live. One thing that does seem to be shared by many is that there is no “one stop shop” to go to to find out everything you might need or benefit from, so it is definitely the case of speaking to various people to get a view of that, and you will likely (unfortunately) have to agitate for things. Definitely speak to your local MNDA branch, as you will likely find out what others have benefitted from locally.

                  We ended up having to move house to be able to adapt for my wife, and you will find a great bunch on here willing to offer support and advice - you just need to ask. It can be very daunting, but try to remember you are not alone, and take a breath every now and then.

                  Comment


                    #10
                    Hi all my wife has quit her job to care for me but with 3 young children it’s really hard work, I’m really struggling with hands now so need help full time, she says it’s fine but I knew it is not, who do I contact to get some help for her x

                    Comment


                      #11
                      Originally posted by Patw View Post
                      Hi all my wife has quit her job to care for me but with 3 young children it’s really hard work, I’m really struggling with hands now so need help full time, she says it’s fine but I knew it is not, who do I contact to get some help for her x
                      Hi Pat,

                      A good starting point is social services who can carry out a needs assessment. If you have not already had a referral to social services you can refer yourself:

                      https://www.gov.uk/apply-needs-asses...ocial-services

                      Good luck,
                      James
                      Foxes Never Quit 💙

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                        #12
                        Thanks James

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                          #13
                          Thanks to all respondents. We have made some progress in at least identifying source of care but our local authority will not conduct any care assessment until it is clear we do need 3rd party care. Also, one very good meeting with the council's OT. We have a local hospice where help seems to be available but we have not really progressed how they would supplement NHS services. Our GP is in the loop but away on holiday!
                          For my own needs I have established contact with Carers Trust and await a meeting later this month.
                          All seems very complicated but the MND Association handbook and this Forum are proving very valuable.
                          John G

                          Comment


                            #14
                            Originally posted by John G View Post
                            ... our local authority will not conduct any care assessment until it is clear we do need 3rd party care.
                            Have you been given any guidance as to what constitutes a 'clear need' John - the term could be seen as being very subjective, leaving the Council with lots of wiggle room (they tend to be rather good at wiggling 😉) xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              John G - anyone can request an assessment and this must be carried out within a reasonable timescale. Do not be fobbed off. I spent 18 months chasing and waiting on social services and became very unwell. Fight and chase. They are overstretched but you are a priority and this MUST be done.

                              Had a massive shot at my social worker this morning. Hopefully got carers coming Monday. No one should go through what I did. You are entitled to an assessment if you ask for one. It is the law (Care Act 2014)
                              Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                              Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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