‘Every day brings a different challenge, whether it be time management, dealing with the unpredictability of the disease, or dealing with the sadness of losing someone to MND.’
We have four full time nurses as part of the IMNDA team. One of which is Fidelma Rutledge who has been part of IMNDA for 12 years. Over to you Fidelma…
Did you always want to be a nurse?
As a child I really wanted to be a bus driver. I’m not sure why now, every other child wanted to be a footballer, singer or teacher and my dream was to navigate the highways and byways of Ireland driving the biggest bus possible. I think I was about 15 when I decided nursing might be more for me.
What do you do with the IMNDA?
As part of the nursing service with the IMNDA we work with a cohort of people with MND from diagnosis onwards. We go through the various stages of the disease with them and try to pre-empt what the next stage is and to prepare them for it, whether it be equipment needs, communication requirements, changes in lifestyle or thinking ahead preparation we are there to advise and support someone through it. At all times we try to be proactive rather than reactive. Every day is vastly different for us so being flexible is essential. We are part of a multi-disciplinary team in the community supporting the person with MND as well as supporting each other through the MND journey.
How long are you working with IMNDA?
I started with the IMNDA in March 2007 as the only nurse with the association so have seen huge changes with the organisation in the last 12 years with the IMNDA going from strength to strength.
What do you love about your job?
The main thing I love about this job is the privileged position that we hold. People with MND allow us into their homes and to become part of their lives at the most difficult time and allow us to support them throughout their illness. They teach us that we should enjoy life and be grateful for our health. I have made some wonderful friends with people who have MND and their families and hope to continue to.
What challenges do face in your role on a day to day basis?
Every day brings a different challenge, whether it be time management, dealing with the unpredictability of the disease. Dealing with the sadness of losing someone to MND as you visit someone newly diagnosed with it.
What do you think is lacking in the care/assistance for people living with MND?
I feel very sad for people as they grapple with filling out forms such as medical card application forms, primary medical cert forms etc as they come to terms with their diagnosis. I would love to see a neurologist be able to fill out one form to ensure that any state intervention required could be assessed. Home help hours are imperative and have become a long standing issue at this stage and the lack of them. More respite beds would also greatly help people manage at home.
Do you think there is enough awareness of this terrible disease?
I think people are much more aware of the disease. However I feel that for a lot of people they have a perception that MND is absolutely horrific and many people say that it was their greatest fear ever to develop. I feel that it is imperative that we are honest and agree that it is a terrible disease but that people with MND can also have a really good quality of life and do remain an integral part of the family and community with support. I always like people living with MND and their families to live in the moment and stop imagining what may or may not be coming in the future.
As you visit people living with MND in their own homes, how important is it to keep people at home?
For the majority of people it is massively important for them to stay at home. It is imperative that the support is in place in a timely fashion so carers can tweak the way they care for someone as the condition progresses. It is imperative that palliative care are involved early in the care of someone in the community to ensure that symptoms are managed appropriately and it is also important that equipment is suitable for the progression of the disease. However it is imperative that we don’t take for granted that everyone wants to be at home for end of life care. For some they may want to be in the hospice rather than at home and for others who live alone long term care may be the preferred option.
Finally, what impact does donations make to people living with MND?
As the main support for people living with MND the impact of donations to the IMNDA is massive. The equipment, home support, counselling, nursing service and telephone support service can be the difference between a family coping and not coping. A lady recently told me that our hours give her the ability to get her shopping done and without it her husband would have to go into a home. She was literally using 3 hours of a possible 6 per week from us and that’s what kept them together.