A daughter caring for her beloved mother: MND, becoming a carer and saying goodbye

‘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.