Martha’s Story
The following article was written by Martha, a Motor Neurone patient who was keen to share her experience of Trinity Hospice.
Martha is a fifty-something, former nurse. Four years ago she first noticed that she was having problems with walking. It wasn’t until two years later when, after various investigations, Martha was finally given the devastating diagnosis of Motor Neurone Disease (MND).
MND is a degenerative disease of the nervous system, which causes muscle weakness, loss of mobility and difficulties with speech, swallowing and breathing.
For Martha one of her biggest problems has been pain in her legs caused by spasticity. It was this that prompted a referral to the palliative care team at Trinity Hospice, from her MND nurse.
Martha tells her story – to her friend Katie – about life with MND and how Trinity Hospice has helped to provide respite, an assessment of the issues and a chance for the family to take a break.
This is Martha’s story……
“By June this year I needed 24 hour care – I thought losing the use of my legs was wretched, but even more devastating is not being able to use my arms and hands to carry out even the most simple tasks. Like most carers, my husband was exhausted and it was clear to my children and I that some respite was needed. It was also felt that it would be useful for me to spend some time in the hospice so that my complex combination of medicines could be reviewed. I was still struggling with severe pain and a good night’s sleep was getting harder and harder to come by.
I knew I didn’t want to go anywhere else but Trinity – I was sure that the nursing care would be second to none. Any anxieties I may have had before my stay were left as soon as I was greeted at the door.
They say first impressions count and just seeing the small vase of fresh flowers in my room was enough to reassure me that I had come to the right place.
My room, which overlooked the garden, was a haven of peace, not just for me but for all my visitors too.
The nursing care was even better than expected and the emotional support provided by the whole team was exceptional. Their choice of words and that freedom to laugh, or cry, without need to apologise for either was such a comfort.
It was apparent to me that the nurses were very well equipped to deal with the demands of someone with a terminal illness. The support they
receive shines through in the support that they pass on to their patients. Although caring for patients with MND
is relatively new at Trinity Hospice, it seemed second nature to the nurses caring for me. But at the same time they were keen to learn from me – about the disease and the complex care MND patients demand.
My various needs were met by all of Trinity’s “family”. My medication was reviewed by the medical team, I received emotional support from the Clinical Psychologist, I had physiotherapy treatments and I was even able to enjoy that much needed, and wanted, good night’s sleep. And then there were the little luxuries, like that vase of flowers; of a Reiki massage, a big bath and how could I forget, the custard pie, baked at my request by the superb chef. I looked forward to mealtimes each day, knowing that whatever I chose to eat would be of outstanding quality.
Knowing that I was comfortable, safe and happy at Trinity, my husband and children were able to enjoy their well earned break without feeling they had “abandoned” me.
Although there’s no place like home, I felt sad to leave Trinity but comforted knowing that should I need their services again I will be more than happy to return.
In fact, my family – in the kindest way possible of course – are already asking “When are you going again?”!!