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    6 months on

    Hi Everyone,

    It's been a while since I've been on the forum; partly due to avoidance and partly due to having had another death in the family (not MND-related, but it's come very close after losing my Gran and it kind of 're-awakened' the pain for me).
    I don't particularly want to trouble you all by 'talking bereavement' on here because I know it must feel horrible to you all, in the face of this horrid disease. However, I know that you guys are the only ones who will truly understand where I'm coming from. Sadly, due to covid, I've been unable to see my MND counsellor since my Gran passed away in February, so I've not yet had the chance to talk it through with anyone, really.

    For a few months, I felt very 'stuck in time' (not helped by lockdown, of course). I couldn't grieve properly. Tears wouldn't come, any feeling at all seemed to evade me, despite my trying to 'bring it out'. I know that the best way to get through grief is to actually go through it, rather than push it away, but it seemed to be doing that all by itself.

    When the cemetaries finally allowed visitors again, I was able to scatter my Gran's ashes. I visited a few weeks later, as it was the anniverasary of my Mum's passing and the strangest thing happened. I stood to lay flowers for my Mum and found a rush of emotion- tears flowed like never before. I then went over to lay flowers for Gran- my emotions immediately switched off. I felt nothing. Why did this happen when I was closer to Gran than anyone else in my life? I found it very strange and could not explain it.

    Today, though, it finally seemed to start showing itself. Tomorrow is 3 years since my Mum's funeral and so, I was looking through old photos and there I saw my Gran's photos in amongst my Mum's. Finally, some emotion. Finally, some tears. I felt the sorrow I'd been longing to find (I know that sounds kind of strange, to seek out sadness, but to feel numb is so much worse).

    I am replaying those horrid months- all the way back when Gran first slipped on black ice in Feb/March 2018 and could not shake the pain just to the side of her spine and then the weeks that followed when she could no longer wiggle her toes and told me she felt pins and needles. The months of doctors visits, to be told that she had vitamin D deficiency or a water infection (really!). The ambulance calls when she fell and I could not lift her up off the floor and the day when we finally said enough was enough and took her to A&E because the neurologist had dismissed her, following an inaccurately-performed EMG which gave false results saying everything was normal, when it clearly wasn't. That night, we stayed in the A&E waiting area from 6pm together until 4am in the morning- she was in agony from sitting in the wheelchair for so long, unable to relieve the pressure on her peroneal nerve. I had work the following morning, so I finally convinced the nurse to get her a trolley bed to lie on until she was finally admitted to the neurology ward. 2 agonising weeks later and she got the diagnosis that I'd already researched and found for myself only 3 weeks earlier (I did not tell her until it was confirmed and still hoped I was wrong).

    She was sent home after diagnosis, with a generic NHS carer package (1 carer, 3 times per day for half an hour each time). None of them had a clue what MND was and kept telling my Gran 'yes, you can get up, you're supposed to be recovering from your time in hospital'- frustration wasn't the word. We eventually got a permanent agency after 6 weeks and they were ten times worse (bar one carer, but she often took time off due to being the most overworked of them all, as she was the most sought-after)- 18 and 19 year olds, with no experience of MND or anything like it; leaving commode brakes off when they left or taking the key from the key safe to their next appointment in error and one carer who we found relieving herself in my Gran's back garden before entering the house! All of the complaints were met with 'we can only apologise' and nothing more. Due to these errors, I could not have a night off and was still working full-time, often leaving my house at 7:30am and not getting home until 10 or 11pm every night because the night carers came late (or not at all). I was broken and the problems MND brings were getting worse- I could no longer help Gran to the toilet because her legs simply gave way beneath her and we had no hoist. She was finally so done with the carers and so terrified of the next agency being worse that she gave up her home of 50 years and elected to go into our local Nursing Home, where they'd supposedly had experience of MND before. The house was council-owned; having to try and get Gran settled in her new surroundings (put on a happy face and say everything's fine), whilst also still working and clearing 50 years' worth of belongings from a house in the space of 2 weeks nearly killed me.
    These carers were only mildly better than the ones that had come to the house, in that they were on-site 24/7. Gran no longer had to wait up to 15 hours(on one notable occasion) to go to the toilet, but the home was short-staffed and Gran's needs were becoming a 2-man job. It meant she waited longer than most patients to be tended to and, with her voice betraying her, she could no longer call for help or speak for herself. I became the 'from 4:30pm onwards carer'. The 8 months she spent in that Nursing Home felt the hardest.
    Towards the end of her life, we finally got what seemed to be the only bit of 'good luck' we'd had since diagnosis- Gran was allocated a spot at the local hospice (she'd wanted to go there instead of the Nursing Home, but was told that in-patient stay was only for people who had a very short time left and they thought she'd have quite some time). So, I packed her room up and she moved. The care was, to her, worse than the Nursing Home. The room was lovely as she finally had a window she could see out of and she finally had a catheter (something I'd been pushing for for a number of weeks to try and alleviate her stress at being hoisted). However, they also treated her like she 'wasn't all there' due to her speech issue and ignored her pleas that she was uncomfortable. She was put on a syringe driver and we thought 'this is it'- she dipped in and out of consciousness from the morphine for a week. They finally lowered the dosage and she was back with us and said she wanted to go back to the Nursing Home. So, I packed up the room again and moved her back (luckily her room was still available). The Nursing Home (thankfully) finally listened to us- they kept the syringe driver in and kept the catheter in. But, Gran had not eaten anything or drank much for 3 weeks at this point- her swallow was all but gone and she'd only said she was interested in the PEG when it was too late for her to have it (we'd pushed for months to tell her to think of the future, not the now, but she'd outright refused). I monitored her urine output (sorry to be a little graphic here) and saw that it hadn't been a normal colour since she'd had it inserted and there was barely anything in the bag. I knew we didn't have long left. But I was so tired, at this point. She'd had enough of having to write things down and constantly struggle to get comfortable (I'm sure most of you get the struggle of having the pillows exactly right!) We were each others' closest ally and we had only each other to let our frustration out on- she'd snap at me (wordlessly, of course) and I'd rush to get things done for her so I could stop watching her suffer. The final night I saw her, I left earlier than normal. Just before I left, she wrote 'I'm lonely' (she could no longer see her TV- her eyes seemed to blur a lot toward the end) and she'd just lie in her room, doing nothing, when nobody was there. I couldn't watch it anymore and I couldn't think of any way to alleviate this part of the suffering. I will never forgive myself for leaving early that day, but what's done is done.
    The following day, it was 3:40pm and the Home phoned to say Gran's breathing had become strained. I have never driven so dangerously to get somewhere so fast (I remember holding back tears whilst driving, saying out loud 'please don't die' over and over again). The Home was only 10 minutes away, but I was too late. She'd died 5 minutes before I got there (thankfully, she wasn't alone- her sister, brother and Mother (yes, Mother, at 102 years old!) were with her and I'm told it was extremely peaceful. Thinking on it, it was the only peaceful part of her whole MND experience.
    These are just the 'main' memories that I am sharing with you, to take you through the journey we went on together. There were many arguments, tears, things going wrong and some laughs along the way. I really just wanted to 'get this out there'. I think Gran's story is one of the more traumatic (not helped by her horrendously stubborn nature! ) - we didn't have much support and we weren't given a lot of information- most of it I learned from all of you on this forum, so thank you!
    I want to tell you all that you are absolute warriors- you are the strongest of humanity and I will never forget the MND journey (as much as I might want to, sometimes!)
    Thank you all for taking the time to read this and I'm incredibly apologetic at the length of my post- everything just spilled out all at once.

    Love to you all and thank you again for being the only ones who were there for me during my darkest days as an MND Carer. You have no idea how many times you saved me from the brink of destruction xxxx
    "This, too, shall pass"

    #2
    I often wonder how you're doing Chrissie.

    Can you do video counselling?

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

    Comment


      #3
      Hi

      I am so sorry for your truely horrible experience with carers and nursing homes. (staffing levels and if you have a caring bone in your body, you burn out)

      No excuses though

      It is nearly impossible to navigate the "care system" as a solo person. The trauma and exhaustion plus bereavement.

      My main experience has been in dementia (until recently now in the MND world)

      and even with 2 daughters and 2 granddaughters (and I was a district nurse), we struggled to get care for Grandad, as we were all working
      and frankly the system is broken ie 15 minute visits by stressing and untrained teenagers

      My grandad's story was used as a teaching example of what not to do (from the professionals) back in 2010

      It was practically a full time job making sure, the "carers" were doing the basics.

      They believed him when he told them he had eaten, even though he could not use the microwave or physically carry the food from the kitchen.

      He started losing weight.

      You did your best against a cruel system, that is really trying to pressure at least one person in the family to give up their job and move in.

      Well done in keeping your job, the number of carers that are thrown on the scrap heap after caring for years ( caring for an ill relative is not a good excuse for a gap in the CV according to the DWP at job seekers and then they try and get you to work in a care setting because of your experience !!!!!!)

      and the poverty that can come with it.

      I remember phoning up the social work in tears, caring I said it is like setting yourself and your dreams on fire to keep the person you love warm.
      I have managed to keep my relationship with my husband but the job went

      So I hear you and I hope you get emotional support, having listened to many carers stories as well as my own experience,
      you need your feelings to be heard
      Can you get help from the Carers Trust they have a phone number and at one point I phoned The Samaritians
      (honestly it was so helpful to pour my heart out to a stranger at 2 am)

      Because of my husband's diagnosis, I am back trying to get help for dad to stay in his flat.
      "We may be able to offer Home Care, 3 x 15 minute visits and we don't do shopping" So nothing has changed

      I am glad that you are feeling emotions, grieving is a complicated process and a traumatic caring experience does not help.

      This long ramble it to say, I hear you and you are not alone.

      All the best



      Comment


        #4
        Originally posted by Ellie View Post
        I often wonder how you're doing Chrissie.

        Can you do video counselling?

        Love Ellie.
        Hi Ellie,

        It's lovely to hear from you! Generally, been doing okay- it's quite funny; when I was looking after Gran, I used to look up and go 'I wish I could just have one day in the house' and then we were all told to stay inside for months! Prompted me to look up again and go 'are you kidding me?' haha!

        I've contemplated online/video counselling since the pandemic hit, but I really feel 'normal' for the situation now. My old therapist used to say that I was 'psychology-minded' and that I could find the answers to everything I was feeling (i.e. why and how to deal with them). I think I just miss being part of this MND community- not many other people 'out there' who understand MND and it's effects.

        I hope you're as well as can be. Sending love! xx
        "This, too, shall pass"

        Comment


          #5
          Originally posted by DeeH View Post
          Hi

          I am so sorry for your truely horrible experience with carers and nursing homes. (staffing levels and if you have a caring bone in your body, you burn out)

          No excuses though

          It is nearly impossible to navigate the "care system" as a solo person. The trauma and exhaustion plus bereavement.

          My main experience has been in dementia (until recently now in the MND world)

          and even with 2 daughters and 2 granddaughters (and I was a district nurse), we struggled to get care for Grandad, as we were all working
          and frankly the system is broken ie 15 minute visits by stressing and untrained teenagers

          My grandad's story was used as a teaching example of what not to do (from the professionals) back in 2010

          It was practically a full time job making sure, the "carers" were doing the basics.

          They believed him when he told them he had eaten, even though he could not use the microwave or physically carry the food from the kitchen.

          He started losing weight.

          You did your best against a cruel system, that is really trying to pressure at least one person in the family to give up their job and move in.

          Well done in keeping your job, the number of carers that are thrown on the scrap heap after caring for years ( caring for an ill relative is not a good excuse for a gap in the CV according to the DWP at job seekers and then they try and get you to work in a care setting because of your experience !!!!!!)

          and the poverty that can come with it.

          I remember phoning up the social work in tears, caring I said it is like setting yourself and your dreams on fire to keep the person you love warm.
          I have managed to keep my relationship with my husband but the job went

          So I hear you and I hope you get emotional support, having listened to many carers stories as well as my own experience,
          you need your feelings to be heard
          Can you get help from the Carers Trust they have a phone number and at one point I phoned The Samaritians
          (honestly it was so helpful to pour my heart out to a stranger at 2 am)

          Because of my husband's diagnosis, I am back trying to get help for dad to stay in his flat.
          "We may be able to offer Home Care, 3 x 15 minute visits and we don't do shopping" So nothing has changed

          I am glad that you are feeling emotions, grieving is a complicated process and a traumatic caring experience does not help.

          This long ramble it to say, I hear you and you are not alone.

          All the best


          Gosh, it really does sound like the system hasn't changed one bit!
          Honestly, I said from the beginning that I wasn't going to quit my job. This may come across quite blunt, but I knew that Gran's care wasn't going to span years- her deterioration was too rapid. So, I figured, I'm mid-twenties and just kicking off my career- if i quit now, I'll never get back to where I was (as you quite accurately describe above).
          I'm 50/50 on the system, as it stands- for us, we were really lucky to get CHC really quickly via the OT. I know the struggle for this is huge for other people. However, the carers themselves and the designated times were what really disappointed me. Some serious re-training is needed, particularly for neurological conditions- as always, though, who's going to fund it? The shopping thing that you've mentioned above is one of the things that really gripes me so I understand your frustration there. Having said that, buying things from the supermarket was about the only thing left I could do for Gran in the end, so it's not all bad

          It's good that there was a teaching example from your bad experience. We had that, too. After Gran passed, her OT called me to express condolences and said that the hospice staff were going to be re-trained on how to care for people with MND, given the appalling treatment of Gran, so that's something.

          My counsellor said she would get in touch when things are a little more back to normal, after covid- it's nice to have that to 'look forward to' (if that's the right phrase to use). I'm glad you felt the Samaritans were of help to you- I've reached out to them myself in the past- it's good just to get your feelings out there.

          On the note of 'getting feelings out', I'm always available for a chat, should you (or anyone else) need Talking to a counsellor is great, but talking to someone who's experienced more-or-less the exact thing(s) you have are invaluable

          Lovely to talk to you DeeH! xx
          "This, too, shall pass"

          Comment


            #6
            nice to hear from you Broostine. For me its just over a year since I lost Mick , so sudden. I still miss him so much. I feel lost , sad, lonely. I was coming to the end of my therapy but had started a group counselling session which is of course cancelled. I still log on here 3 or 4 times a week. I see the wonderful people welcoming the new comers. I hate this disease that robbed me of my Mick

            Comment


              #7
              Hi Chrissie,

              Its lovely to hear from you. I've wondered how you were doing... Your Gran was " lucky " to have you caring for her and I hope you allow yourself to feel proud of yourself.

              I know how you feel about lockdown. When I was working full time whilst juggling childcare I dreamt of staying in bed and reading a book. You can definitely have too much time to think.

              Take Care of yourself
              Love Debbie x

              Comment


                #8
                Shrew, Its lovely to hear from you although I am so sorry you're lost and lonely.

                You must Mick terribly.. Its a cruel thing. I hope you have family around although lockdown makes this hard.

                love and hugs to you,
                Debbie x

                Comment


                  #9
                  Thanks Debbie, it's an awful thing, I don't think that I will ever get over this. I feel for everyone on here x

                  Comment


                    #10
                    Hi Shrew, you and your family are often in my thoughts.

                    Never forgetting Mick either, or his bikes!

                    Sending love and a big hug to you.
                    Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Chrissie I remember when you used to write about your Grandmother. Nobody could have cared for anyone better than you did.
                      I remember when mother in law died, she'd lived with us and we'd had a very difficult 6 months before she died. I really only grieved for her when I'd recovered from the trauma of those 6 months.
                      I hope life is better for you now though your Gran with always be with you. Everyone should have someone like you in their life xx

                      Comment


                        #12
                        Hi - I can relate to all of this. My husband, Nigel, passed away three weeks ago. I live in Spain and after he was diagnosed, apart from being referred to a speech therapist (waste of time) physio three times a week, which was so hard to get to as Nigel took 20 minutes to get in the car. Then it seemed we were just put aside for three months. I emailed the GP and said I was worried about Nigel having no appointments but he just said I could always go to A & E. I'm sure the medical profession in Spain are all sociopaths. Anyway, the last time he was in hospital the doctor allowed me to sit with him. The next morning, when I went to sit with him again, the security guard more or less called me a liar and said that where Nigel was, nobody was allowed and I couldn't have been sitting with him. I went home in tears and complained to the hospital. A lovely doctor phoned me and said to come back and say "Dr Victoria is waiting for you". This I did, much to the annoyance of the security guard. Anyway, to cut a heartbreaking story short, I asked the nurse if I should stay that night and if there was a chance Nigel wouldn't make it through the night. She said he might not, so I stayed all night and he passed away at 8.30 the next morning. I called the nurse, who acknowledged me, but nobidy came into the room for two hours. I was left on my own to cry. The doctor came in, gave him an ECG, said "here's his wedding ring" and left.

                        I didn't know what was supposed to happen next, or anything. I rang the insurance broker, Charlene, who talked me through everything. She said to go home and the funeral parlour would come and get him, and it's better if you're not there then. Well, Nigel didn't actually go to the funeral parlour till the next day because he had to have yet anothe covid test before they'd take him. I've never felt so alone.

                        Nigel's best friend had been visiting at the time and he cancelled his flight so he could attend the funeral, which was four days later. (It's usually the next day in Spain). I had no family here, either mine or Nigel's, but all the friends we'd made in our community came to the service, which was taken by an English vicar. I keep remembering that Nigel didn't look like himself - where his mouth had been open, the seemed to have shut it wrong so he didn't look right.

                        After the service, the usual custom is to go to the crematorium and watch the cremation. I said good bye to Nigel in the funeral parlour.

                        Since then, I've cried every day, sometimes only once, sometimes most of the day. Sometimes it's for me and my loss, sometimes it's because Nigel was so happy when we retired here three years ago, and it was taken away from us, but mostly for the way he suffered. I don't think I'll ever get over it.




                        Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

                        Comment


                          #13
                          I'm so sorry for your loss and that your dreams of life in Spain together have been cruelly snatched away.

                          I hope you have love and support from friends around because it must be very lonely. I was in hospital in Spain in January and whilst the medical care was very good I felt very isolated because my spanish is not fluent enough to risk using it in discussions with medical staff.

                          I don't think we ever get over losing someone we love but I hope in time your memories of happier times will surface and give you comfort.

                          Love and hugs to you,
                          Debbie x

                          Comment


                            #14
                            Puddy Just to say I’m thinking of you and wishing you strength and peace.

                            Richard

                            Comment


                              #15
                              All I can tell you is that time is the only thing that helps. The pain becomes a memory but the love is eternal.

                              Comment

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