“To be fair it is almost impossible to put into words the emotional rollercoaster the Hospice team come on with you, or how much you appreciate their kindness in your time of need.”
“My husband Simon was diagnosed with motor neurone disease on the 1st of July 2021. Simon had pneumonia and was diagnosed with a twisted bowel in august, spending a month in Nobles Hospital.
He first went into Hospice for pain management, in October with bad chest pain. This was meant to be a short period but sadly I contracted Covid-19 whilst he was there and thank goodness he was. Although he hated being cut off from us, this was time he and the staff got to know each other, which was good for him later on.
Unless you have been in this situation you cannot imagine what it is like when someone is terminally ill unable to move from the neck down and finding speech incredibly difficult. To then have a constant flow of strangers coming in and out of your house could be absolutely dreadful. But the Hospice nurses and healthcare visitors are like friends of the family from the start.
I don’t think either Simon or myself were that easy to deal with, as I had been looking after Simon on my own I found it difficult to relinquish control. Simon had many complications on top of the MND and we had the district nurses coming in every other day to help with this but when they were not available Hospice stepped in, and during the night Hospice were always there so that you knew you were not alone.
Simon was particularly fond of Rosie and Caitlin, one day he had me leave the room while he asked them what they were giving him to keep him alive and they replied “nothing, we give you pain relief”. At this point, he felt comfortable enough to confide in them that he couldn’t go on much longer. He told them he wanted to just make it to TT. The nurses offered to let me know this, which they did in the kindest way possible, and I will never forget it. Caitlin and Rosie were always supportive with comforting words. And, I guess it was fortunate that Simon passed away whilst they were both on duty.
Simon only spent the last 20 hours of his life in Hospice. I had promised to keep him at home but sadly just two days before I lost him, I couldn’t cope anymore so had to contact Hospice. When he passed the support of both Rosie and Caitlin was wonderful, Rosie and I even washed Simon together and it was incredibly therapeutic. I cannot thank her enough for this. To be fair it is almost impossible to put into words the emotional rollercoaster the Hospice team come on with you, or how much you appreciate their kindness in your time of need. Thank you all so very much x"