Listener carer email

We got an email from a listener who wants to remain anonymous – ...she has entitled the email ‘reflections of a carer’

After four years as a family carer I recently joined the Family Carers of Ireland organisation.  They sent me a survey which began a reflection process which I now would like to share with you. Given the current debate about pension age, it is perhaps a relevant topic and one that we could have a conversation about on how we can acknowledge, listen to and respect the views of our older population and respect the contribution family carers make in facilitating this.

This week I started a new job.  It is a permanent pensionable post working part time.  It entails a three hour return commute each day. This post has been hard fought for, including many hours of study and volunteering to get to this point.  Financially it will make us €100 a week better off, €50 of which goes on diesel. I wanted this job not for financial gain but to give us some security in the future at a time when I will not be a carer anymore to my parents.  The thought of what that means is completely devastating for me and I am not sure what my life would even resemble when that day comes. But instinct compels me to at least try to keep going by finding some economic security.

It appears there is a pervasive view amongst my siblings that I have been freeloading off the state for the past 4 years and really doing nothing much as a carer to earn that welfare payment. Everyone seems to have taken the time to inform themselves on what my entitlements are including my entitlements to take up paid employment and to remain as carer.   Our parents both underwent serious surgeries and both required someone to care for them at this time and their subsequent recuperation. I never sought or received an acknowledgement from my siblings for becoming their carer nor have I in that time ever once been asked by any of my siblings how I was doing or if I needed any help.

I understood the financial implications of my decision to become a carer but I never expected the personal cost that it would entail.   The ostracization and character assassination I have endured from my siblings has had a devastating effect on my wellbeing over the past few years.

Before becoming a carer I earned over 500 euro a week.  My choice to become a carer was obviously not for financial gain as it meant a 200 euro a week drop in our income or over ten thousand euro a year and over 20 thousand euro over the two year period of leave that I took from my employment.  In 2018, my post became redundant which precluded me from returning to work. If I was to take a very negative perspective I could say that my absence meant that I lost out on the opportunity to find a new role in the organisation.

I am entitled to  carers allowance as well as a respite grant once a year. I am available to my parents 7 days a week and provide meals every day with the exception of when one sibling brings my parents for a meal at their house. This is not anything arranged and therefore it is not possible to depend on this or to make plans to do other things. This sibling has barely spoken to me since I became the carer in 2016.

Up to 2018 my parents had come on holidays with myself and my husband,  In 2019 they wanted to stay at home. My requests for some support for my parents to permit myself and my husband to take a holiday in 2019 were completely ignored.  My parents did not want strangers in their home providing meals nor did they want friends to come in, they would simply have liked their family to help out.

I encouraged my parents to write down what they wanted using a document called ‘Think Ahead’ which helps members of the public talk about and record their preferences in the event of an emergency, serious illness or death.   I became aware of the Decision Making and Capacity legislation and was speaking to a colleague who told me about the Enduring Power of Attorney (EPA). She was an advocate for people with disabilities and advised me that the EPA was a very sensible legal instrument that enabled a person’s wishes to be followed when they no longer had capacity.  I printed off the information leaflet and gave it to my parents. They subsequently consulted their solicitor to find out the details of what this entailed. They decided to proceed with the EPA. They nominated each other as their attorney in the event that either lost capacity and nominated me to be their attorney in the event that they both lost capacity.

The EPA was completed and when my siblings were notified they raised objections, at first to my parents, saying I would have the power to prevent them from seeing my parents if I were the attorney.  This was followed by a visit from two of the siblings to my parent’s home where one sibling demanded they return to the solicitor to make changes to the EPA.  This was followed up by a letter signed by all my siblings to my parent’s solicitor requesting that one of them be added as attorney to ensure the other siblings were consulted about the care of our parents.  This implied that if I was sole attorney that I would not consult them regarding our parents care. I found this to be sadly ironic given that none of my siblings have initiated any communication with me directly in more than a year nor have they ever discussed with me any concerns they had around the care that I provide for our parents.

This story naturally does not begin or end here.  Families are complicated entities comprising of a myriad of personalities, emotions and outside influences that do not always coalesce but for me it’s always been simple. Our parents deserve our love, respect and support in their twilight years. We as their children should be doing everything in our power to ensure they can live their lives with dignity and see out their days doing what they want and supporting them to do the things they may struggle with.  Everything else pales into insignificance, petty sibling rivalries are just that - and should not interfere with the care and wellbeing of our parents

I continue to struggle to come to terms with my alienation from my siblings.  These last few years have highlighted to me that there were never close filial connections between us but as the youngest, I always looked up to my older siblings and sought their friendship.  I am confounded by their attitudes and hurt by the allegations and accusations they have levelled against me. What eludes me most is how oblivious they are to the impact their actions have on our parent’s health and wellbeing. What’s also become apparent is that their view of caring is more about control whereas I see my role as facilitating my parents to live the lives they want with autonomy and dignity.

I would like to remain anonymous for obvious reasons but I really would value hearing if other Carers have had similar experiences.