imnda

Coping with Grief this Christmas

Coping with grief when everyone else is celebrating can be incredibly difficult. We share a few simple suggestions to help you cope during the festive season.

Put yourself first

If you want to cover your house in decorations and go full-on Christmas, that’s fine. If you don’t want a hint of glitter or tinsel and want to ignore the season entirely whenever possible, that’s fine too. Christmas is a time for kindness, so the main thing that you should try and remember is to be kind to yourself, whatever that entails. Being honest with family and friends is crucial, and explaining what you feel comfortable with at this time of year.

You may not feel like you want to celebrate on the day at all; sometimes taking yourself out of the situation is the best thing you can do. That said, participating and laughing and smiling are also fine – it’s okay to feel happy when you’re bereaved.

Find some structure

Try and stick to some sort of routine over the festive season, if possible. It’s all too easy without our normal patterns to guide us to forget to look after ourselves. Whether it’s walking your dog at the same time each day, calling a relative each evening or reading another chapter of a book, some sort of structure and sense of routine can be helpful.

Allow yourself to grieve

You shouldn’t feel that you have to hide your grief over the festive season and pretend that everything is okay. Reaching out to someone and talking about the person you’ve lost can be helpful, be that family or friends who can share memories of that person, or connecting with a counsellor. Sharing your feelings may help you to cope, and make the season a little more bearable.

Celebrate their life

You may want to start some new traditions to remember your loved ones, or incorporate the person that has died into the traditions you already have, as a special way to remember them.

You might want to continue to hang their stocking in their honour, or create a ‘memory box’ to put out, with special items that remind you of that person.

You might decide to have a Christmas wreath at home, or even a small tree with special decorations that celebrate the life of the person you’ve lost. Some people still lay a place at the table to remember their loved ones, or you could cook their favourite festive meal in their honour or light a candle in their memory.

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If you need to get support on this, our services team at IMNDA can offer advice, information, resources and support to help you and your family. You can call us on Freefone 1800 403 403 (9.00am-5.00pm, Monday – Thursday 9.00am – 4.00pm, Friday) or email services@imnda.ie we also have an online chat here

Getting to Know Our Nurses – Louise Hennessy

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.

Getting to Know Our Nurses- Katie Kinsella

‘It reaffirms my faith in people and motivates me to be a good nurse and to try and bring these values into my personal life.’

We have four full time nurses as part of the IMNDA team. One of which is Eithne Cawley who has been part of IMNDA since 2015. Over to you Katie…

Did you always want to be a nurse?

Yes, I wanted to be a nurse for as long as I can remember.

What do you do with the IMNDA?

I provide a nursing advisory and support role to patients and their families. I also work as part of the wider multidisciplinary team helping patients navigate their journey with this illness and through our Healthcare system.

How long are you working with them?

I joined the IMNDA in April 2015 as a result of the amazing Ice Bucket Awareness Campaign.

What do you love about your job?

I feel privileged to be of some support and help to people when they need it most. I am always amazed when I met a new patient and their family at how open they are and grateful for any advice and support. It reaffirms my faith in people and motivates be to be a good nurse and to try bring these values into my personal life.

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

MND is a tough diagnosis, meeting people that are just coming to terms with this huge change in their lives, when they are vulnerable and upset is challenging. I try to maintain professionalism with compassion, being honest and prompting hope for a good quality of life while maintaining respect and awareness for the person not just the patient who now has MND.

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

I think there are shortages in funding home care. There is also limited access to respite, but this is reflected across the HSE. Hence the need for the valuable role the IMNDA plays.

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

I think awareness is growing year on year. The generosity of many of our members has facilitated this through their work in our campaigns such as Sponsored Silence, Drink Tea for MND and many more.

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

Staying at home should be supported by the health service where possible, if this is what the person wants and it best suits their needs. I think more access to respite and home help would support relatives caring for their loved ones at home.

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

I think it makes them feel supported not just practically with services and equipment but more importantly emotionally. The donations to the IMNDA highlights the public commitment and willingness to go to extraordinary lengths to help those in need.

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 psycho social 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 well-being therapies.

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

Getting To Know Our Nurses- Fidelma Rutledge

‘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.