nurses Archives - IMNDA | Irish Motor Neurone Disease Association

Getting to Know Our Nurses- Eithne Cawley

‘I am honoured to be the custodian of such inspirational people. I am in a very privileged position, working alongside the IMNDA, Interdisciplinary teams, connected to primary & secondary care settings and above all Clients & their families.’ 

We have four full time nurses as part of the IMNDA team. One of which is Eithne Cawley who has

been part of IMNDA for 8 years. Over to you Eithne…

 

 

Did you always want to be a nurse?

I have always had an affinity towards the wellbeing of people and the values of compassion, care and commitment so yes, a nursing career path was the obvious choice.

A quote I recently was very privileged to receive from a special friend,

‘‘Love and compassion are necessities, not luxuries. Without them humanity cannot survive.

If you want others to be happy, practice compassion. If you want to be happy, practice compassion’’ – Dalai Lama

 

What do you do with the IMNDA?

Patient advocacy is true and centre of everything I do and I endeavour to address the needs of patients, embracing physical, social, clinical & spiritual elements.

I am the link in the provision of care from diagnosis, from secondary care to primary care and the wider circle of the multidisciplinary team. I focus on the enhancing the quality of life for the client and support for the family throughout the journey of MND.

I apply my nursing skills in a holistic client centered manor. Patient advocacy is key to my role.

How long are you working with IMNDA?

Since 2011

What do you love about your job?

I am honoured to be the custodian of such inspirational people. I am in a very privileged position, working alongside the IMNDA, Interdisciplinary teams, connected to primary & secondary care settings and above all Clients & their families.

I am also privileged to care for the unsung heroes, that is, clients, families and carers, as they embrace this courageous journey.

What challenges do you face in your role on a day to day basis?

The emotional and psychological impact of receiving a life limiting condition can leave Clients & families devastated and indeed us as carers.

As a team of Nurses, together with multidisciplinary team, we support each other through the good times and the sad times.

The wonderful work that is provided by the support of the psychosocial teams guide us through the stormy waters.

What do you think is lacking in the care/assistance for people living with MND?

A diagnosis of MND inevitably affects the wider family that are caring for their relative, whether they are partners, adult children or parents. As one lady said to me very recently ‘’this illness really is our illness, not just my husbands’’.

Dealing with the changing roles within the partnership and the household can be very stressful and some carers face very difficult decisions. Very often the loved one becomes the carer, providing much of the personal and physical care but at the same time this can be very demanding. Carers often report sheer physical hard work, disturbed sleep and exhaustion. One Lady recently told me ‘’getting to do the weekly messages was a privilege’’.

Thankfully the IMNDA can support the carer and families by supplementing home care packages, providing specialised equipment, counselling/psychotherapy support service.

 

Do you think there is enough awareness of this disease?

There is always room for improvement with awareness. High profile events such as Drink Tea for MND, The infamous Ice Bucket challenge and most recently Walk While You Can demonstrates the power of awareness, Irish humanity and generosity.  Creating awareness of MND is fundamental so that we can support Clients and Families on this journey.

As you visit people living with MND in their own homes, how important is it to keep people at home?

Everyone’s home is their castle and we endeavour to keep our Clients close to those they love.

However, this may not always be possible if Clients requires specialised advanced nursing care.

Many people remain in their own home with community and multidisciplinary supports in place.

What impact does donations make to people living with MND?

With the absence of fundraising the outcome would be devastating for MND Clients and Families.

Donations received from the Irish people has resulted in providing a team of expert Nurses, home care support, equipment library, psychotherapy & most recently wellbeing therapies.

These essential funds enables our Clients to live a unique journey with hope and dignity.

Getting To Know Our Nurses

‘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.