A diagnosis of multiple sclerosis is unimaginable, especially when you are a husband and dad of two young children. Accepting this diagnosis was so difficult but to learn that the disease had progressed to secondary progressive MS was utterly devastating.
As this cruel disease took hold, the ability to interact with family and friends became impossible. Trapped in a body which was no longer able to talk, walk and eat was soul destroying.
Desperate, his wife, who was drowning in debt, juggling children and unable to continue to provide the high level of care her husband needed, had had enough.
She called Nurse Call and cried her way through the consultation. She felt ashamed that she was asking for help. She was no longer managing and felt humiliated. We desperately wanted to help.
I visited the family at home and listened carefully to what his wife told me. She was unable to leave the home as she worried her husband’s condition would deteriorate or he’d need emergency care. Her husband’s condition meant that he could no longer work and the family were unable to pay essential bills.
She talked about how much she missed chatting with her husband, he was her soul mate. They had met when she was just 17 and from the first time she saw him, she knew she wanted to spend the rest of her life with him. I watched his wife trying desperately to comprehend the enormity of the situation that they found themselves now living. The family needed help.
With hard work and a tremendous amount of perseverance, I began involving a number of Multi-disciplinary teams. Very quickly, I helped in connecting her in setting up self-directed funding for her husband’s care. I guided her in organising benefits, which increased the weekly finances considerably, and meant bills were payed and treats were enjoyed.
The family use our care team on a weekly basis and also provide a lovely befriender to visit weekly and offer support. This allowed her time to meet family and friends for lunch and spend quality time with the children, knowing her husband was being properly looked after. This time away from the home was so important and offered renewed energy for the whole family.
Occupational therapy and physiotherapy visited at home. Following fairly intensive work, the family managed to enjoy time in the garden with the husband using a specially adapted wheelchair. The wife talked about how this was the most precious time. They both held hands while watching their children play. A memory that will stay with her forever.
Seeing how this family has refocused their lives in the face of adversity is inspiring. It has been an honour to get to know them and help in their darkest moments to access the care and services they needed.
The most rewarding part for me was the biggest smile from her husband. It was a smile that will never leave me. Making a difference in someone’s life is what it’s all about. That’s why we love what we do.
A registered nurse, Nurse Call
