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    #16
    Hi Sue
    So I know you are worn out but you have too get pushy now as you and Albert will be left to it!,

    You could contact your GP and ask for the practice managers name and email address.I would suggest you write to the GPs practice manager and tell them how you have been left with empty promises of support from hospice team.Lay on how difficult it is to do personal care for Albert and any recent changes he has had with mobility, etc.

    Explain you are heading for a crisis due to lack of support for Albert and yourself.In the letter I would add you are expecting a prompt response to prevent a break down of your home situation.

    ( I used to work in a doctors surgery and my experience taught me a phone call backed with letters/ emails usually received prompt reply).

    Bottom line Sue..you may not have time to waste as MND symptoms creep in and then you hit a crisis !
    Dont be limited by NHS saying MDT meetings 3 monthlyโ€ฆyou are asking for home assessment asap.
    Same with hospice ..waiting 14 weeks is not acceptable.

    Get fired up Sue or get someone to support you to contact the professionals asap.It should make a difference to you both to get some help.

    Best wishes
    Maryxx

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      #17
      Suefromwakey
      We got minimum district nurse input via pressure care checks about 3 monthly. We get the next date for MND consultant after every visit, we are also seen about 4 monthly (16 weeks).

      Make sure that YOUR GP is alerted that you are a carer. Through that I was getting weekly phone calls from a wellness coach!!!
      I asked to be referred to family support from Hospice at Home (they have been great at giving us 3 hours respite for me per week).
      The family support calls from Hospice has just started, talking about my feelings and such

      Husband Thomas (MND diagnosed 15 months) offered a clinical psychologist, which he refused (he asked if I could get it instead, answered NO)
      I am a personal fan of the talking/bitching therapy as I call it. Venting in a safe space is good.

      Our MND nurse is really good. At referrals and such.

      I would phone the secretary for the consultant and ask when the next appointment is.
      My dad's medical file was literally lost for a period of 12 months (Dad has dementia and there is a lot of chasing stuff up)
      They tried to discharge dad's case, I just phoned up and said "so you have found a cure for dementia".

      Husband diagnosed MND in July 2020
      Donna

      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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        #18
        DeeH Good post Donna. xx
        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        โ€‹

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          #19
          Suefromwakey
          Hi Sue, so sorry you're not getting the support you deserve. I know you attend the same clinic as we do but not sure if you have the same MND nurse. She is our first point of contact when we need anything.They always talk to Stuart at clinic to ask how he is coping. Having said that he will always say fine as he is not one to talk about his feelings.

          We were referred to carers Leeds by our GP .Again, Stuart wasnt interested in respite or counselling(he said he'd rather watch football! ) but it could help you. I'm not sure if they have the equivalent in Wakefield.

          I'll send you a PM if you want some contact numbers,
          Love Debbie x

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            #20
            Thanks Deb,

            Albert's pig headed and is willing to leave all this stuff until we next get an appointment at Seacroft, I shall go in with my list, he certainly has no clue as to what this all means to me, never even asks, never even says whats happening to him I drag it out of him.........daft as that might sound,

            To be honest I don't want anybody actually asking how I am............I get too upset and its not even the stupid MND - I am a complete and utter emotional wreck grieving for my boy...........MND is preventing my grieving and I think when its all over .........the different griefs will explode within,

            I think Christmas might get in the way now so I'm reckoning New Year for his next appointment.

            Even if they sent a January appointment through now we'd at least know someone is on the case as it were - I might email them Monday.

            Thanks

            Sue

            Husband Albert diagnosed PMA Feb 21

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              #21
              Originally posted by Suefromwakey View Post
              Even if they sent a January appointment through now we'd at least know someone is on the case as it were - I might email them Monday.
              That's a good idea Sue, do email them and you can always say that early January is fine for an appointment. Of course you could strike while the iron's hot and send the email today or tomorrow, just saying... ๐Ÿ˜‰๐Ÿค—๐Ÿ˜˜
              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              โ€‹

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                #22
                Hi Sue,

                Im so sorry life is so hard for you emotionally and physically.

                I was telephoned yesterday by Seacroft for an appointment this Thursday . We had to cancel my last appointment as we'd been in contact with someone who developed covid. ( i wish I could give this appointment to you ๐Ÿ˜‚ ) It might be worth contacting the neurology secretary by phone or email to check for appointments. I was told at my very first visit not to wait for clinic if something had changed or I was worried. Xx ๐Ÿ˜˜๐Ÿค—

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                  #23
                  Thanks Debs - interesting or what, so they do have appointments!

                  My next mission is to email them, NOW

                  cheers
                  Husband Albert diagnosed PMA Feb 21

                  Comment


                    #24
                    Originally posted by Suefromwakey View Post
                    My next mission is to email them, NOW
                    ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘
                    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    โ€‹

                    Comment


                      #25
                      Chris is still in the hospice and CHC have realised they need to fund 24 hour care. They have invited a care agency to recruit carers specifically for Chris so we are pleased with that.
                      He's been in the hospice 8 weeks now but remains his usual very positive self though he is very tired.
                      Have a lovely Christmas everyone xx

                      โ€‹โ€‹โ€‹โ€‹

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                        #26
                        Thatโ€™s good. A happy Xmas to you and Chris 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.

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                          #27
                          Originally posted by Music man's wife View Post
                          They have invited a care agency to recruit carers specifically for Chris so we are pleased with that. โ€‹โ€‹โ€‹โ€‹
                          Here's hoping they get the staff ๐Ÿคž๐Ÿคž

                          My agency does the same, recruits specifically for me, which lets them offer carers a defined (minimum) hours contract, a big positive in the carer world. It also removes any uncertainity about what caring for me really entails - tea & companionship it most definitely is not ๐Ÿ˜

                          Best wishes to you both ๐Ÿ˜˜
                          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          โ€‹

                          Comment


                            #28
                            Music man's wife that's good news. Makes good sense to have a designated care team...works so well once they're established as everyone knows what's expected. Well done!!!!
                            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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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                              #29
                              Music man's wife
                              So glad it sounds like Chris will get home with appropriate care.Glad he is keeping positive and hope he is having excellent care at the hospice.
                              Best wishes
                              Mary

                              Comment


                                #30
                                So CHC have now declined funding for Chris and want him to go to a complex care home in Newcastle, that's 2.5 hours away.
                                Said I would take it to the papers as I know someone in PR and they have asked me to hold off a couple of days.
                                Poor Chris has now started to talk about withdrawing ventilation.

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