‘I realised my relationship with my wonderful mother had changed. I was no longer just her daughter I was also her carer.’

‘I am happy I was able to care for her and hope it alleviated some of her suffering when she was faced with such adversity.   The comfort of her holding my hand was still such a solace even as an adult.’

Fiona Hyland (30) cared for her Mother Rita while she was living with MND. Rita died last year. Fiona shares with us the myriad of emotions dealing with a MND diagnosis, becoming a carer and saying goodbye.

That Thursday afternoon, as we sat in the outpatient clinic in Beaumont, was the first time I had  considered myself as a carer. It was in that consultation as we discussed carer burden that I realised my relationship with my wonderful mother had changed. I was no longer just her daughter I was also her carer and was already well on the physical and emotional rollercoaster that this brings.

Caring for someone with a condition like motor neurone disease (MND) involves many physical challenges not just to the patient but also to the carer. Transfers, positioning, re-positioning  all become part of daily life. Each process is time consuming and I found them physically very tough.  Feeding, dressing and washing someone else also takes its toll on the carers physical health.

Then, there all the many emotions to be dealt with

• Guilt– that overall I wasn’t doing enough to care for the most precious person in my life, that some aspects of her care were being neglected. When I left her to go to work or even just shopping I felt like I was abandoning her. At work I felt guilty that I was no longer working full time and not doing my job to the full of my ability.  “Sorry I can’t go” seemed to be the only response to friends which again left me feeling guilty.   I felt I was no longer offering support or remembering events in my friends lives another source of guilt.
• Loneliness and isolation– Being sole carer to someone is challenging and I felt that no one knew the reality of our situation. Loneliness always seemed much worse at 5am after my 2^nd or 3^rd time that night attending to her needs as I would clamber back up the stairs or on the nights I slept on the floor beside her as I tried to ignore the various noises in the room- from her bed, NIPPY machine, the clock that were all amplified in the dark of night.   It appeared  that my peers were enjoying life- travelling, settling down and living a ‘normal life’, meanwhile, I was watching my only living parent deteriorate in front of me.   My life was passing by.   Of course everyone has their own difficulties and nobody has a perfect life-this reality does nothing to minimise the loneliness and isolation felt.   This was certainly not where I had seen my life at 30years of age.
• Stress and time pressure– the to do list never seems to get any shorter- laundry, cooking, shopping, appointments, administrative duties all take time and all need to be completed. A lot of these needed to be tended to while carers/ home helps have relieved you from the house. This time pressure is another stress- why are the traffic lights always red and the queue in the supermarket extra long when you only have fifteen minutes to get home as the home helps will be leaving.
• Exhaustion– caring for someone 24hrs/ day is both physically and mentally tiring. Tiredness makes everybody cranky which increases stress between the carer and person being cared for.
• Anger– that someone as strong as my mum was losing her independence and ability to care for herself to this horrible disease. Each time I noticed a deterioration I was angry with MND as I Knew this was a signal that she was getting closer to the end of her life.    Anger also came to the fore when carers failed to show up, and when the carers or the health system caused my mum extra stress.
• Fear– of the future and the unknown. Fear and Concern about how we would cope with the next deterioration was constantly present. Fear of how she would manage if a carer failed to turn up at their allocated time and I wasn’t home.  Fear of what would happen if an unexpected event occurred and I was unable to care for my mother. Fear of how I was going to survive with the eventual loss of my mum.
• Joy and appreciation– joy and pleasure from simple everyday activities like sitting in a coffee shop enjoying coffee and cake. Laughter and joy that we shared with many of her friends, family and carers. Appreciation for the many healthcare professionals, friends, family and support staff that came into our lives as she journeyed through the stages of MND
• Grief-even while she was still alive I was grieving- the loss of the future I thought we would have together. I was grieving for the independent, strong, powerful, women whom I had once considered invincible,

Even with all the challenges caring for her was an absolute privilege.  The time we spent together and memories we made is something I will always cherish.  I am happy I was able to care for her and hope it alleviated some of her suffering when she was faced with such adversity.   The comfort of her holding my hand was still such a solace even as an adult.   While there were tears of sorrow throughout her illness we also shared many tears of laughter.   It was a steep learning curve for both of us- she had to learn patience, to trust other people being in control and how to drive an electric wheelchair while I had to learn how to dye hair and how to move swiftly out of the way of mentioned chair but also to acknowledge and understand how extremely difficult it was for her to rely on someone for every physical requirement.  Even though physically she was severely disabled she was still able to listen to my rants and problems and offer her words of wisdom and most importantly comfort and support.   She was also still able to complain when I did something not to her liking but as we used to joke you just can’t get the staff these days and I couldn’t be fired!!!

The emotional rollercoaster is normal when it comes to the life of a carer.  I found it difficult to express the negative emotions.  I didn’t want to appear like I was complaining excessively or like I wasn’t coping.   I was coping but it is an extremely challenging situation.   You may feel like screaming back “who is going to do everything” when the 100 person says “ it is important you look after yourself”.  It is vital though you look after yourself.  You can’t care for someone else if you are burnt out and exhausted.  It is not a choice most people make to be a family carer but a situation most people find themselves in.   It is important to remember that you are doing your best and managing this situation to the best of your ability in the circumstances.

Then comes the inevitable death and with it grief.   Death a short word that changes your world completely, whips the table cloth from under your feet and leaves you trudging through quick sand gasping for breath.

Once again there are so many emotions to deal with

• Loss– not just the loss of the person you loved so dearly in the world and the massive void left in your life but the loss of your beliefs in the world. You lose your self- confidence and you question your judgement.   Doubt becomes a major part of your world.    You lose the ability to make a decision or to plan- even deciding what to eat or to wear seems a huge challenge.    There are no certainties only uncertainties. You lose the future you had expected to have. Some of your support network disappears, friendships are lost- people don’t know how to behave, how to respond to someone grieving.   You are expected to be “over it” within a few months when in reality it takes many many months and you never do just get over it.
• Annoyance and anger at people who complain about insignificant issues, or portray family and friends as being a nuisance or inconvenience. Anger that people don’t understand, don’t offer support that you feel they should and need.
• Jealousy– of people who have never grieved someone close. Jealous of those who have never stood by a loved ones grave and wept or those who have never sobbed themselves to sleep after a death.
• Guilt– that the person who has died is gone and you are still existing. When friends and family have a joyous event you feel guilty you aren’t able to show them the delight they deserve.   Truthfully you are happy for them but you are also just surviving yourself and don’t have the reserve to be as supportive as you would like to be.   Everything in the months after the death is about self preservation.

Grief is also an experience of contradictions

• Exhaustion – an indescribable fatigue both physical and mental. Yet trying to sleep becomes impossible as thoughts and memories race through your mind
• Numbness– feeling anything is difficult. However, everything hurts so so sharply – Like a piece of your heart has been ripped out and a bitterly breeze just howls right through you.  You develop an over sensitivity to comments or messages from those around you.
• Need to return to normality. There is a desire to return to normal, to feel normal again. By returning to normal though are you negating the loss of this person in the world?   Also what is a normal world, with the person you loved so much no longer present?  How can your life exist ?
• Restlessness and loneliness– you want to be at home where you feel safe and protected but home has too many memories which are sometimes just overwhelming. You want to be around people but when you are surrounded by people you feel extremely lonely and isolated.  In short, you are uncomfortable wherever you are and uncertain about what you actually want.
• Desire to talk and remember the person who has died. It is a comfort to tell stories and remember the deceased person but other times it is just too painful. There is no indicator as to how you will respond when someone mentions them which is also a stress.

Then there are the physical effects- chest pain, shortness of breath, palpitations, decreased appetite, fatigue, memory loss, poor concentration, the tears that just roll uncontrollably down your cheeks. These do all ease – eventually.

On top of dealing with grief, the grief administration still has to be completed- registering the death, cancelling phone accounts, changing names on bills. This is an extremely stressful part of dealing with a death.   You do just want to yell down the phone ‘ you can’t talk to the account holder they are dead’!!

The world is cold and grey. Everything hurts.  That’s the reality of grief, for a while, eventually it becomes more colourful again.

I do not believe in the seven stages of grief. It is a heartbreak you learn to live within a new normal world that hits like waves on a beach as it ebbs and flows and at other times hits like a tsunami.   It does get easier and one day you will feel the true warmth and comfort of the sun on your face and the ground under your feet will once again feel solid- until that day you put on an extra warm coat and walk a little slower as you cherish the memories.

For many people living with MND, family and friends play a huge role. Supporting a loved one living with MND can be a very rewarding experience. Caregiving can also bring challenges. These include coping with the diagnosis of MND and the feelings it may bring up, such as sadness and worry about the future. Other challenges include dealing with changes in family life due to the condition.

For several years, the MND team at Beaumont Hospital, together with the Academic Unit of Neurology at Trinity College, have been looking at caregivers’ and families’ experience of supporting a loved one with MND. We have come to an understanding of the rewards and challenges involved in caregiving.

We have developed a study that aims to help families, caregivers and friends of people with MND through taking part in structured groups. The groups involve a weekly online meeting over six to eight weeks. They offer a chance to meet other caregivers in a similar position. The groups also offer a chance to learn new skills such as how to cope with difficult feelings, as well as tips for self-care. The study is being conducted by Professor Niall Pender, Principal Clinical Neuropsychologist, and Professor Orla Hardiman, Consultant Neurologist, and their teams.

If you are interested in this study and would like to take part in a group, please get in touch with Caroline Wheeler;

Mobile: 089 480 4173 Email: wheeleca@tcd.ie

Closing date for current round of applications; June 26th, 2020.

We hope to run additional groups after this date. Enquiries welcome at any time.

Drink Virtual Tea for MND: Will you join us? 

There is no doubt that the global pandemic has changed our everyday lives. This year’s Drink Tea for MND is a very different but very exciting one. Although we are under the cloud of Covid- 19, we must adapt to these uncertain times. A recent survey by the Charities Regulator, showed that more than half of the 2,223 charities that responded say their finances were uncertain or in difficulty as a result of Covid-19. The IMNDA is no different with an expected 60% drop in fundraised income by year end.

As the only organisation in Ireland providing care and support to families affected by MND this will have a devastating impact. Today, there are more than 400 people living with this complex and cruel disease and they need our support and your support like never before.

 June is such an important month for our MND community. It is a month of global awareness, with June 21^st being Global MND Awareness Day.

With so many of us working and staying at home, our kettles have been in full demand. One thing certainly hasn’t changed during this time and that’s enjoying a well-deserved cup of tea. Despite social distancing, we can still be together.

Whether it be a cup of tea during your zoom chat, a hot cuppa in the back garden with friends (all while social distancing of course) or a keep cup in the park, we would love you to join us for Drink Virtual Tea for MND.

To help support the MND community and spread MND Awareness this month we want you to support us on June 21^st – or a date close to it – by hosting a Drink Virtual Tea for MND event.  It can be as elaborate or as simple as asking friends, family or work colleagues to support you by ‘purchasing’ tea, coffee or some delicious goodies from your Virtual Café Menu! 

So, why not pull up a seat at our virtual table? We would love you to join in. All you need to do is sign up right here. 

Roisin Duffy, IMNDA CEO

Audiobooks are voice recordings of a book. They can be word-for-word readings of the text or shortened versions.

Audiobooks have surged in popularity in recent years. They allow people to enjoy books whilst completing other tasks. They are an excellent choice for anyone that finds holding a book or reading text difficult.

Books on CD

Audiobooks on compact disc (CD) are available to buy from bookshops or online retailers.

Using CDs requires a CD player to use them and they can be bulky as they involve many discs. They are expensive compared to Digital Audiobooks. But they are available for free from your local library. They are best suited to people with limited access to other audiobook technology.

Digital Audiobooks

Audiobooks are available online as digital files. You download these to your computer or audio device to play them.

They generally download as MP3 files (a widely-supported format). This means you can copy and play them on a wide variety of devices and without a specific app.

Digital audiobooks are usually cheaper than CDs. They are less fuss, as you don’t have to deal with changing discs, and can use on a device you are comfortable with.

Online Subscription Services

Online audiobook subscription services are a popular way to listen to audiobooks. You pay a monthly fee which allows you to buy a certain number of audiobooks per month (usually one or two).

To access these services you need a device that can download the services app or access to their website. This requires familiarity with the technology. It is best suited to people who already use and enjoy audiobooks.

Streaming and Downloading

Streaming an audiobook means to download as you listen. This is a good option if you want to start an audiobook straight away. You’ll need a device that can connect to the internet and access to a streaming service.

Many streaming services allow you to download to your device for offline listening. This allows you to listen to your books after your access to an internet connection has ended.

Streaming services can be paid or free. Audiobook files can be quite large. If you are doing this on-the-go you’ll need a strong connection. Be warned it can use a lot of mobile data!

It’s best to download while connected to WiFi. This is a good option to try audiobooks without the commitment of a paid service or the limitations of CDs.

 Recommended Services

Public Libraries

Your local library will stock a range of audiobooks on CD which you can borrow for free. The library can also request titles they don’t have on the shelf.

https://www.librariesireland.ie/find-your-local-library

As a library member, you also get free access to BorrowBox. This app allows you to borrow and listen to audiobooks on your phone or tablet – anytime, anywhere. You can borrow up to 5 audiobooks at a time, for a loan period of 3 weeks.

https://www.librariesireland.ie/elibrary/eaudiobooks

Audible

The world’s leading audiobook retailer, Audible is a subscription-based service. Monthly fees start at £7.99 GBP. This allows you to buy 1 audiobook per month from their extensive range of 200,000+ titles. You can cancel your subscription anytime and keep any audiobooks you’ve purchased. They have apps for almost every device, including Apple, Android, and Windows.

https://www.audible.co.uk/

 LibriVox

LibriVox is an online catalogue of free audiobooks. These books are read by volunteers. The copyright has expired on these works, so, for the most part, they are recordings of classics.

https://librivox.org/

Google Play Books

Google Play Books offers a good range of titles at attractive prices. You buy titles and listen through the Google Play Books app or website. You can also move audiobooks to other devices to listen how you want.

https://play.google.com/store/books/category/audiobooks

The Book Depository

The Book Depository offers a huge range of audiobooks at great discounts with free delivery.

https://www.bookdepository.com/category/3389/Audio-Books

Which to Choose?

The best way to listen to audiobooks for you depends on your needs.

Do you listen to audiobooks regularly or only now-and-again?

Do you have a smartphone or tablet to use audiobook apps, or will you need them on CD? How much do you want to spend on audiobooks, or do you prefer free options?

Your public library is a great way to see if audiobooks are for you. Borrow an audiobook from your library or use the BorrowBox app to test them out. All you have to do is be a member to access these services for free. Your library team will help you get set up.

If range and instant access are important, and you can afford it, then Audible is the way to go. They have an excellent selection, easy-to-use apps, and a ‘cancel anytime’ option.

Audiobooks are a great way to enjoy books for all readers.

Information has been supplied by booksonline.ie

Dr Noel Kavanagh lives in County Meath with his wife Caroline. Noel is retired vet and specialised in pig medicine.  He is a founding member of the European College of Porcine Health management and a practising member of the Academy of Experts and the author of the textbook entitled “Maximizing Pig Herd Health, Management and Production Efficiency.”

He was diagnosed with MND in December 2018. Noel has shared his experience with us during this pandemic….

I live in the country, near Oldcastle with my wife Caroline. Living in the Country I can walk without the risk of meeting people. I normally walk 4-5k before lunch every day and do light gym work 4 times per week in late morning. I rest for 1 hour in the afternoon.

I get up between 7.30 and 8.15 every morning. During breakfast I read my digital newspapers, The Irish Times, and my French newspaper, Nice Matin, I then rest between 9.30am and 10.30am.

I check my in-box for incoming emails, WhatsApp messages and text messages. I am a member of several WhatsApp and Email groups. I reply to incoming messages and compose new messages.

We have 2 daughters; Kirsten is married to John. They live in Dublin with their three children. Naomi is married to Mathew. They live in London with their three children.

We normally communicate daily on WhatsApp and as a group on FaceTime, for approximately 1 hour.

During the weekend we (3 families) meet on Zoom (iPad App) and chat for upwards of 2 hours. Zoom is great for virtual meetings of 3 or more people in different locations. Our family meetings normally consist of six people in three locations. The children come and go at various stages as they wish. Having lost my voice due to MND, I use my iPad, which is connected by Bluetooth to an external speaker, for communication, using my banked voice on ModelTalker via Predictable.

During April I have spent a substantial amount of time promoting my fundraiser for Research Motor neurone by sending emails and texts to friends, contacts, and acquaintances. To date, I have raised approximately 9,500.

I am currently testing Predictable 6 for Therapy Box, the developer of the text to speech software that I use for voice communication. Currently I devote approximately 2 hours daily to this process of identifying bugs and recommending program enhancements.

I provide Consultancy services to my former laboratory on quality control and Maintenance of Quality Standards.

For leisure time in the evening, I use Netflix, PrimeVideo, and Canal Plus (French Satellite TV, like Sky) and I read. For entertainment, I occasionally watch Trump Press conferences on CNN.

Recent books:

The Lonely Sea and the Sky, by Francis Chichester. Jony Ive by Leandor Kahney, The Summit: How Triumph Turned to Disaster on K2’s Deadliest Days, by Pat Falvey and Pemba Gyalgie,

Recent films:

MoneyBall, Ford v Ferrari, the 1966 le Mans 24-hour race, Coral Reef Paradise

Andy McGovern is from Aughavas, Co Leitrim and was diagnosed with Motor Neurone Disease at the age of 43, 42 years ago. Andy has written two books, all with his right foot as he no longer has the use of his arms. His two books are called They Laughed at This Man’s Funeral and Against the Odds- Living with Motor Neurone Disease. Andy has given his account of self isolation.. over to you Andy..

Hello to my MND colleagues and fellow people living with of this disease.  As if we hadn’t got enough to cope with, another illness is about to invade our comfort zone.  Coronavirus!  We are told that self isolation is the only answer to this galloping epidemic.

As one of the longest survivors with MND.  Probably in the world.  42 years.  I find myself self isolated. But that does not worry me in the least.  It’s a small price to pay for my protection and for the protection of those around me.  I have confined myself to just one visitor.  My attentive daughter-in-law: Mary. Who sees to my everyday needs. Nobody else is allowed to visit.  Other members of the family who lived close by salute and hoot horns as they attend to their farm work.

All of this is not about me or people living with MND.  It’s about our nation.  We are all in this together.  Trust in God and trust yourself.  And as John F. Kennedy once said: ‘Ask not what your country can do for you.  But ask what you can do for your country.’

I love you all.  No surrender.  

Andy. 

We knew when we asked Roy Taylor about his experience in self isolation that he would put a smile on our faces. Roy is a huge ambassador for IMNDA, all the MND community and a dear friend. He was last years ambassador for Drink Tea for MND and continues to create huge awareness for us. Roy is in self isolation in his home in Dundalk and shared with us how it’s all going..

Are you familiar with the children’s nursery rhyme “ How much is that doggy in the window ?” it’s a little bit like that. Since the lockdown, family and friends just come to the window and we chat for a few minutes. The rest of the time we would FaceTime. I’m also continuing to write songs and even a little bit of poetry. I also love the fantastic humour that’s out there, in the form of all the WhatsApp very funny videos I receive. They really do help keep a smile on your face. I also find it quite funny watching everybody and their dog doing fitness videos from their kitchen, trying to tie us all in knots while we’re isolated! I would also like to see these big music megastars dip into their pockets rather than their songbook collection from their living rooms. I can’t help feeling they are self promoting rather than self isolating!

I’m also very lucky to have my son Terence with me. So we have fun coming up with new cooking recipes each day. He does the physical work and I shout out the instructions! For example, tonight we are having an isolation special, spicy chicken noodles in satay sauce! So come on, who wouldn’t like to be isolated with us!

Best wishes to all,

Roy

Cocooning, isolation, social-distancing, new-norm, restrictions, unprecedented and uncertain. Words and phrases that up to a few short weeks ago were rarely used – if at all. Words that have now become second nature to everyone in Ireland, and indeed around the globe, as we come to terms with Covid-19 and its devastating effects on our daily lives. 

Today, we only have to open an email, a text or turn on the TV or radio to find these words scattered through every sentence along with daily statistics and percentages.

Staying home is hard, especially when the sun is shining and we are generally starved of it for most of the year. But we can still enjoy it, once we stay within our 2km radius and do what we so desperately need to do to stop the spread.

Over the last few weeks, I have been blown away by the resilience of our MND Community, many of whom have been cocooning for well over a month at this stage. Many are scared, very scared and rightly so, but many have told us that they are using this time to appreciate their loves ones, appreciate nature and be grateful for everything that they still have in their lives. And that’s a great outlook to have at this present time.   

A special mention to our resilient family carers. This is a job that has no clock in and clock out time. It’s 24/7. I can’t even imagine how the country would function without you. You are bridging a gap in services like no other and you are true heroes.

Like every other business around the country, we have had to adapt to new ways of working – and do it quickly. And for this I would like to thank each and every one of the amazing team in IMNDA, both staff and Board. No person is more important than the other – everyone is giving it 100% because everyone believes in our mission and in what we stand for. We might not be able to do things quite as efficiently as we would like right now, but trust me when I say we will move mountains when needed to ensure all our community is safe and well looked after.

And finally, to all the healthcare workers across the country, no matter how small a part you are playing, we thank you for your selfless work. To everyone in the HSE and the Department of Health for keeping us up to date on a daily basis we also thank you for your on-going commitment to keeping the nation informed and less anxious as a result.

Please continue to stay in and stay safe. And remember, although we’re in isolation we don’t want anyone to feel isolated. If you need us our Emergency out of hours number is 087 439 3213. You can also email any concerns you have about MND and Covid-19 to MNDADVICE@gmail.com and one of our medical colleagues will get straight back to you.

Stay safe everyone.

Roisin Duffy,

Chief Executive