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Struggling !

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    Struggling !

    I was diagnosed in April 2018 with lower limb onset.
    Fir the past 18 months I have been using my power wheelchair and able to transfer from wheelchair to riser chair, bed, shower chair, toilet etc.
    I live alone and was coping really well until March when I had two falls and was admitted to hospital.
    After 7 weeks I was discharged and a reablement care package was put in place for 6 weeks until a proper care package is in place with 4 calls a day.
    Currently the calls are 8am, 12 noon and 5 pm bed because they have bit got the capacity to do 4 calls or later bed time.
    My wheelchair is not comfortable now and cushions and lateral support is being sorted. Each day I am sat in recliner all day and then bed at 5 for 15 hours. Unable to transfer anymore.
    I am at my wits end and can’t see a way out, just feel I am in existence and bot living anymore.
    Apologise for such a long post, but any positive feedback I would really appreciate it.
    I was cooing really well with everything, but I am really struggling mentally.
    Best wishes to you all

    Oh Heck Nicola, my husband resembles your predicament to a great extent although he has got me.

    They cant seriously make you go to bed at 5.............what do you do until 8am.........have you got some kind of emergency call system? What if you need an ambulance etc?

    All I can suggest is that you become a pain and start ringing for the 4 calls a day, are you able to speak? Have you been able to urge it along with your Dr - ring em

    Have you contacted your local MND branch? they might have some suggestions more locally.

    This is appalling for you
    Husband Albert diagnosed PMA Feb 21


      A warm welcome to the forum Nicola.

      Firstly, absolutely no need to apologise!

      Blimey, bed @5pm, that's how to make us feel even more undervalued, isn't it 😟

      I know you say "currently" carers cannot do the 4th call which, I presume, is written in your care plan, but is there ongoing dialogue and effort to roster a later shift for you?

      If not, can you have anyone advocate for you to change care agency or bring a 2nd agency on board to fulfill your care plan? A social worker maybe, either community or through your local hospice, MND nurse, community nurse etc?

      If I were put to bed so early, I'd feel as you do, so you have my sympathies.

      Sending you a big hug.

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


        Hey Nicola

        I can't really add much to what has been said but I can offer a hug.

        love Denise xxx
        when i can think of something profound i will update this.


          I’m disgusted about how your care needs have not been met. A 5pm bedtime is horrible and 15 hours in bed way too long. Something needs doing about your care package immediately. I hope that the MNDA Connect team can get in touch with somebody who has the power to change things for you. I’m sending you a huge hug and hope for good news very soon. Lynne 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.


            Hello Nicola. Sorry that you're in this horrible predicament. Can you think of a few things that might make life better for you. If you need to make a bit of nuisance of yourself, as I think Sue suggested, then so be it. x


              Hi Nicola and a warm welcome to the forum,

              Firstly please please don't apologise for your post. You are in an awful situation and it's totally understandable you are struggling. Its shocking that you have to go to bed at 5. Anyone, MND or not, would find this depressing and challenging both mentally and physically.

              I really hope MNDA or your MND nurse can help you get additional carers and support,
              Big hugs to you,
              ​​​​​​​Love Debbie x


                Hi Nicola,
                I do know can be common practice if care is arranged via Social Services.Many agencies will take on the care package and then say they can’t do the 4 th call yet.They do have the power to arrange another agency to do the bed time call later if they can fine an agency to do it..not ideal but better than 5 pm bed time.Is it worth talking to Social Services and insisting on talking to someone who is a manager of the team that set this care up and ask for a copy complaints procedure .

                I guess the falls have changed your ability to transfer independently now.That’s a big blow .
                If you need 2 carers for each visit it also is sometimes more difficult to arrange.( But not impossible)
                Sounds like you need as Deb suggested an advocate such as a MND nurse/ health professional to get this addressed as a matter of urgency.

                Life is hard enough Nicola without being made to lie in bed for such a lengthy period.
                I hope this issue gets sorted ASAP as living alone and being made to go to bed at 5 pm is just not acceptable.

                Best wishes


                • If it's any comfort, I am left on my own for 14 hours, if you have a system that works for you (and a TaskMaster) then it is possible Nicola.

                  Love and hugs Denise xxxx


                    Hi Nicola,

                    you say that at the moment you have no use of your legs. Are your arms ok? I use a ceiling hoist to get myself in and out of bed, on and off toilet. The OTs really don’t like it and try to dissuade me from using it. I think its great!!! It does depend on your rooms being suitable and its a bit pricey but for me its all about independence. There are often things that can be done that the system doesn’t like and i agree with a previous comment - be a pain and nag everyone!

                    good luck!


                      Hello Sarahw - can you tell me a bit more why the OTs don't like you using a hoist please? is it mainly down to you being on your own when using it? I ask as Albert is due a visit in the next couple of weeks and I think a hoist is going to be his answer to his current situation - ie not being able to get out of bed


                      Husband Albert diagnosed PMA Feb 21


                        I'm not in a wheelchair yet but my wasting flesh means a very boney bum. The thing that really helps is sheepskin. Happy trails my friend. 🤗😍x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                          Hi Suefromwakey,

                          in response to your query about a hoist - I don’t know why they were so anti it! It has been the best piece of equipment that we have bought as we can see that it can be used long term. I was told that in all their years of being an OT they had only seen 1 or 2 people using it independently. That seemed to be their answer to why I shouldn’t use it. It has taken a while to get the correct sling but ‘toileting slings’ are marvellous as they do what they say on the packet! Also it does leave my arms free to move around. They were very concerned that when my core becomes weaker that i wont be able to do it on my own but we will cross that bridge when we come to it. It has given me the ability to get on and off the bed and likewise the toilet independently (we did invest in 2). They offered us a portable hoist but the legs couldn’t go under my bed so that was a non starter.

                          Good luck!

                          sarah. X


                            Good for you Sarah, prove those jobsworth OTs wrong 🤐 I'm glad it's working out so well for you, just a shame you had to pay for it (I wonder if they have changed their opinions???)

                            Just for other potential hoisters, if your bed is divan type or too low to the floor for a portable hoist, most beds can be raised by putting 'blocks' under it. That would not have been any use to you, Sarah.

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


                              We have been gifted a hoist off a friend whose husband passed 😢 we have not used it yet but will be very soon as I’m struggling to get out of bed myself now 🥴 I’ll use any equipment if it helps 😊 x
                              Janette x