mnd

It was the money raised from the late Fr Tony Coote’s 550km walk from Donegal to Cork that enabled IMNDA to hire a fourth full time nurse, Louise Hennessy. Louise joined the Association in April of 2018…

 ‘Every time I visit someone I learn something new which I can then bring to the next home. We play roles as advocates and advisors but over time, we become confidants and friends.’

Did you always want to be a nurse?

I actually wanted to be a teacher but I didn’t get the points! Nursing was a close second choice though. In one way I actually now have the best of both jobs. A major part of my role is to be an educator and advisor to our clients, families and MDT and I don’t have to deal with hormonal teenagers.

What do you do with the IMNDA?

My main role is to be an advocate to our clients and families. Clients and families can feel in limbo after receiving their diagnosis. There are no signposts on how to access services and help. This is where the IMNDA steps in to help guide our clients along this journey. We do this by visiting clients in their homes where they feel safe, not in clinical sterile areas where it can feel so impersonal. When we visit you, you are our only priority.

How long are you working with them?

I joined the IMNDA in April this year. It was only made possible by the mammoth fundraising efforts of the late, great Fr. Tony Coote.

What do you love about your job?

I love that it is challenging, interesting and makes a difference in people’s lives. Connecting with clients and their families and helping them through the good and bad times. I enjoy communicating with clients and helping them understand the disease and how it is effecting them and therefore how we can manage it and support the client and family.  I love the challenges and learning from each experience. You never know what the next phone call will entail. Every time I visit someone I learn something new which I can then bring to the next home. We play roles as advocates and advisors but over time we become confidants and friends due to the trust our clients place in us.It is a special privilege to fulfil these roles and to have people open up their homes and lives to you.

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

The main challenges are access to services and support. By having clients referred and assessed in a timely manner can save many issues from happening further down the line.  Our aim is to make this journey as smooth as possible. By having the necessary supports in place and available to clients and families we can avoid a crisis and strain on the family.  We also face emotional challenges in supporting those who are near the end and the families of those that have passed. But with the support of our colleagues and MDT we can go on to care for our next client.

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

There is major lack of help to keep people living safely at home with their families and friends. The HSE needs to invest more in to home care hours and respite to give our clients the support they deserve.  However, sometimes living at home is not suitable for some people so having the support of the hospice and long term care homes available in a timely manner is important.

The amount of paperwork people have to complete is mind boggling. Clients and family need access to necessary medications, benefits, allowances and services in a time sensitive manner but this is hindered due to the lengthy process of dealing with numerous departments and forms.

Do you think there is enough awareness of this terrible disease?

I think awareness is growing in recent years but there is more work to be done. Not only for fundraising efforts but for the medical field so people’s symptoms are picked up and they are diagnosed faster.  With recent campaigns such as Walk While You Can, Drink Tea for MND and the amazing Fr. Tony Coote it is in the public eye. I’ve heard a lot recently where someone has been newly diagnosed that they partook in the Ice Bucket Challenge and not knowing what it was really all for now to be needing those funds for equipment and services.

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

Clients feel their happiest when they are in their own environment, their home and their community. By being able to live at home with the necessary supports they will have a better quality of life and be able to make lasting memories with their loved ones. Thankfully the IMNDA have amazing grants to help support people at home.

Finally, what impact does donations make to people living with MND?

Without donations we couldn’t do any of our work and therefore clients and families would be alone in this journey. Not only is providing equipment important but also provided support to the client and family. Our wonderful grants this year have been a benefit to every home I visit. Whether it be the day respite grant where a wife can go out meet her friends or attend an appointment for a while. The housekeeping grant also takes that extra burden and duty off a loved one so they can spend quality time with their family and friends. These moments of respite can be the difference in someone coping and not coping.