Monday, 21 September 2020

MND


For those that don’t know , my brother died nine years ago of motor neurone disease 
It’s a cruel disease, possibly the cruelest and strange as it may seem North Wales has a cluster of people diagnosed with the condition 
The three hospices of North Wales often take these patients in for symptom relief, respite  and for end of life care and their care is usually challenging and intense .
Communication of needs is often the major difficult area to nurse and something like the “ simple” positioning of a limb can take an hour to achieve correctly 
Perhaps now you can understand why I had such a hard shift the other night.

Now I’m not being dramatic here. 
I am good at distancing myself from situations that can suddenly become personalised 
Most nurses of a certain age, have to be
But motor neurone patients have special needs and those are ones that we all take for granted 
They need to be understood and they need to feel empowered 
Looking after them can leave you worrying that you’ve failed them 
and I always thought I could have done more for my brother.
So caring for them, can be particularly challenging 

I admitted a patient with MND the other night 
The night I got home very late
A friend and colleague has just texted me to tell me that they had died peacefully..... 
Too sudden but fortunate with the hospice care

And I took the dogs out for a walk in the now cold night 
And in the darkness of the still village
I remembered a lot of stuff running around my head 
And had a brief cry

44 comments:

  1. Anonymous9:23 pm

    I can only imagine the memories...my heart goes out to you, good man. Rest well when you do,- Mary

    ReplyDelete
    Replies
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      Delete
  2. I'm sure you did your best for your brother and your patient. We always feel we could have done more, simply because we care. Tears are cathartic - let them flow. xx

    ReplyDelete
  3. Tears like that are an essential. And healthy.

    ReplyDelete
    Replies
    1. I’m a bit tired of them

      Delete
    2. There are some memories that bite so deep that tears will come again and again. The price we pay for loving.

      Delete
  4. You set such high standards for yourself, you are a very gifted, empathetic man, who has found his niche, I think.

    I put the info about calming treats and links for the exact brands [US tho] in your previous post's comments. I know you move on and do not look at previous comments, but maybe this info will help your girls.

    lizzy

    ReplyDelete
  5. Knowing your brother helped make you a more sensitive nurse for patients with MND, but little things that unexpectedly remind us of those we have loved and lost get to us when our guard is down. It's good to remember; and let some of the pain out.

    ReplyDelete
    Replies
    1. I distanced myself from him I think too much

      Delete
  6. Replies
    1. I’m fine Debra .. it’s just the time x

      Delete
  7. Had to look that up. Had no idea Stephen hawking had that disease. Very sad.
    Patty

    ReplyDelete
  8. When it does not bother you, you need to rethink what you are doing.

    ReplyDelete
  9. Barbara Anne10:53 pm

    As my Grandma Hall used to say, "Tears show clear what the heart holds dear."
    John, your professional nursing care along with you knowledge of your brother's illness allowed you to care for your new MND patient with extra kindness and empathy. It was hard on you, but a boon for your patient.

    Big hugs!

    ReplyDelete
  10. Looking back I should have done better for my mum-I can never ever put it right.At the time I was overwhelmed by other stuff which I regret now as it was pointless.I apologise to her and hope she is aware somehow-I live with many regrets and tears x

    ReplyDelete
  11. I have an uncle and a great aunt that passed from ALS. In the back of my mind is always a small speck of worry that I will someday too come to have it.

    ReplyDelete
  12. I've probably spoken of this here before but one of my dearest friends died from corticobasal degeneration which is another horrible neurological disease. It took years to develop and years to get a diagnosis and years for her to suffer through it until she mercifully passed on. No one should have to go through this sort of horror before they are released.

    ReplyDelete
  13. I am sorry to hear hear that your brother had this disease. My mother has Parkinson's and I am awaiting all sort of hell to go through.It is so hard to not be able to know just what to do for her. We can only wait and hope for medical advances that can alleviate some of the worst of things that patients with neuro diseases have to deal with.

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  14. A nurses' commitment can make a tough life, sometimes.

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  15. As I read I cried for you.

    ReplyDelete
  16. My MIL died of ALS and it is a cruel disease with no cure. To this day, despite the research, the cause is still unknown. I'm sure you did what you could for the patient and the patient felt your compassion. Compassion and understanding is good medicine.

    ReplyDelete
  17. Damn John. It's a tough world.

    ReplyDelete
  18. We get through loss but we never get over it.

    ReplyDelete
  19. I'm sorry for the pain and sadness. I'm sorry for the sad memories such a patient brings back for you. Some things hurt us in a way that the pain is always there waiting to be uncovered again. I'm sorry your pain was uncovered.

    ReplyDelete
  20. I'm sure 'I could have done more' is felt by most carers of loved ones however much they do. My grandfather died of MND in 1937. He was nursed at home by my grandmother and the 'Angels of Mercy' nurses.

    ReplyDelete
  21. It must be nigh on impossible not to bring thoughts of work home with you which inevitably affects you. My best friend who was a nurse worked in hospices but had to have regular breaks and work somewhere else for a while just for a little respite. Just remember that the work you do is the most valued and all of us need you at some point in our lives, be it for ourselves or for our family or friends. Thank you. XXXX

    ReplyDelete
  22. I am sure your touches of kindness and caring heart helped to let your patient pass easier.

    ReplyDelete
  23. My sister has had MND for 15 years now. She's lived so long because her heart and lungs are still in excellent shape. But at the moment because of the covid restrictions my brother in law can only see her through the care home window and can't go inside. Very frustrating and upsetting for both of them.

    ReplyDelete
  24. We always look back and say "I could have done more." We did what we could at the time. More importantly, we did what we DID and there's no going back. You, unlike so many, continue to do what you can. You're a good man and you deserve an enormous hug.

    ReplyDelete
  25. How many times have we said “ I could have done more?”. I know I have said it many times but you did what you could at the time and that’s how it will always be. Tears are to be expected, especially for you, when it brings back some painful memories. You are a good man, you care and have empathy. I hope you enjoy your time off.

    ReplyDelete
  26. We always think 'we could have done more', but if we do the best we can with what we have and with the knowledge we have at the time there is no need for future recriminations. But of course that is so much easier said than done.

    At least the patient was in a safe, caring and hopefully pain-free state when they passed.

    Tears are good for the soul if you let them wash through you.

    ReplyDelete
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    ReplyDelete
  28. I'm so sorry. Thank you for all that you do.

    ReplyDelete
  29. "I could have done more", I'm sure you did your best at the time John, different stages in life and circumstance are all a factor in what we are capable of in life, I carry some guilt about not being able to care for my mum when she had altzheimers because I had to work to keep a roof over our head, now that I'm retired I can look after my sister in law whose children can't because they have to work.
    Your a good man John and help people everyday.

    ReplyDelete
  30. Hello people!!! My name is Esnard McCarthy and I live in Nevada,U.S and
    I am a full member of the Illuminati brotherhood, am among the 1252 lodge,,I
    was ordained by the Grand-master to go out to the world and bring
    more members to the Illuminati, so I was requested to bring 400
    members into the brotherhood,,I have 210 members now, am
    looking for only 190 people to go, I am sure you want to be among
    the 190 people that will be earning $500,000 per month and a brand
    new car, so add me up now so we can achieve this great chance
    of being rich for...your life will change for good.so don't miss this
    chance of being rich for life email me via illuminatitemple6634@gmail.com‬ or add me on Whats-app +1(843)919-9210  

    ReplyDelete
  31. I can see where that Patient would have triggered such a personal response due to your Dear Brother having the same disease. You are so caring that I seriously doubt you ever fail any of your Patients and that they feel your compassion and desire to do your best for them during their difficult time.

    ReplyDelete

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