In Memory of My Mam

Author: Rosemary O'Neill

This is a longer version of the speech Rosemary O'Neill originally gave at Carers UK's landmark State of Caring Conference on 1st May 2013.

When asked to speak here today about my caring experiences, I initially wanted to run a mile. Normally I am the one sharing other peoples’ stories for them. A 10 minute slot they said, may as well be 10 hours when not used to standing here.

I was 6 yrs old when my brother was born and all I can remember is mam coming home with this gangly baby that did not do anything. There were closed doors and adults talking behind them. First few months my middle brother and I spent a lot of time at aunties' houses.

Robert did not crawl but moved everywhere on his back, and boy could he move. Mam found out when he was a few months old that she had had contact with German measles whilst pregnant. His autism diagnosis was many years later.

Anyone with experience of autism will know how vocal the person can be, how rigid routines need to be and yet through this we created a bond, one that is still as strong today as it was then. My parents had been told when he was a baby to take him home, feed, wash and clothe him, as he would not be able to do anything himself. It is a testament to their love, strength and determination that we are where we are today.

Things changed when he was 30, both mam and dad started to experience ill health. You will understand if no set time to these events, as most times they were all interlinked. Helping care for one changed to me, with strong support from family, especially mam’s sisters, caring for all 3.

We started on a path of daily college visits with a company that specialised in autism services. This was extended to both weekend and weekly respite, till now wherein he is residential full time. He is so settled in his placement that he now chooses to stay there, even on weekends. Therefore we now visit him, take him out or just spend time with him there. It has not been without tough times but the good times make the bad ones fade away. One smile from him, one hug that he initiates makes everything well.

At 21 years I had just been promoted at work when the call came to say mam had taken ill. From then on it was 30 yrs of caring, albeit different levels of support needed. That call was the 1st of many and further thoughts of a career took a back seat. I married that same year and Sean, my husband, took on not just me, but the family too and all it entailed re illness and disability.

I took a break from work to have our 2 girls but went back when they started school. With support from mam’s sister I was able to return, just a different direction.

I took a nightshift job in local supermarket and next 14 years I worked anything from 9 hrs to over 50 hrs per week. We had a high turnover of managers but I approached each new one and explained my circumstances. Swapping shifts was allowed as they would rather a shift was covered rather than someone phone in sick.

Problems arose when mam’s health went downhill, at same time dad had his heart attacks. Working was no longer possible, and yet working was far easier than caring 24 hours per day. Not long after this I collapsed and social services became more involved. Through them we received direct payments to help me in my role. We were also allocated to a Community Matron. She ensured that any equipment needed was delivered same day if possible, if not the following one.

Mam’s strength was amazing. She just classed each new illness as a mountain to climb. By this time she only had one sister still with us and they used to laugh together saying mam had climbed every highest peak in the world, without leaving comfort of her own home. Her last peak was the finger amputations. Her concern as always was for Robert and how she would communicate for him. Other complications arose, and even emergency dialysis the day before she died, was of no help to her.

Once all her affairs were sorted I needed to find another job. I took a job providing paid care that was supposed to be temporary for 3 months. That has now stretched and it’s almost 7 years.

I promise I am almost done and realise we have a timetable to adhere to. Please bear with me if I get emotional, as this is first time I have spoken in public about this.

Two years ago the rug was pulled from underneath us. Sean, my husband, who has always been my rock, was diagnosed with early onset Alzheimer’s. He was 51 years at the time. Although early days his personality is changing. We still have much laughter in our lives but underneath the problems are making it stressful. Our 2 girls and families are a massive support though. Major decisions are made alone, as even if we talk things through, it is sometimes difficult for him to process information. He struggles to tell the time; to handle loose change and when his speech affected it is like playing charades. From legal matters, bills, everything falls on my shoulders.

We had taken the responsible route second time round. Medical insurance paid the mortgage off but weekly income means there is only enough to get by. Every bill had to be drawn from savings and after 2 years of this, those savings are almost gone. A system we both paid into all our lives has not been there for us. We also had the dreaded Employment Support Allowance process to go through. It was a nightmare. 

We concentrate on the positives, still so many good times ahead but I don’t need a crystal ball to tell me what we will face. I know, as Sean needs more support I will have to quit my job, long before he qualifies for any services.

That’s a short insight as to my caring roles over the years and still ongoing. My life was so different to friends. Some had fell by the wayside, but that was my fault. You feel like you have nothing to contribute to chats but hospital and medical stuff. Keeping in touch becomes a chore. You turn down invites till one day you realise you no longer get asked. I still have a core group of friends and they are a great support.

Further influence has come from Carers UK. I came to their annual AGM and summit 7 years ago. Hands up in audience who regularly spends time away from home…pause…. Reason I ask is that whilst travelling to that 1st meeting, my mobile phone never stopped. Texts from hubby and our 2 girls asking if I was okay. It had hit home that apart from holidays with family, it was my 1st time out of Jarrow on my own. I felt like a country hick coming to the big city. 

From that AGM I wanted to do more for Carers Rights etc and I constantly questioned staff and other carers, especially those on the online support forum. Friendships were made and the advice and support given have been 2nd to none. I, along with several other carers, now volunteer as moderators on the forum.

With no carers centre in our town I joined with others online to form CarerWatch, an online campaign group. More recently I was one of 7 women who created Pat’s Petition, which called on the government to undertake a Cumulative Impact Assessment of how all the benefit and policy changes will impact on disabled people and their families.

Locally it has been our Alzheimer’s Society staff that has had a major impact on our lives. Three months after getting in to their system we learned their support worker's job was under threat. We added our voice to those already campaigning to save her position and pleased to say they were successful. It is these local positions that are vital to families. Government can push new inititiates forward but at same time they must ensure that support on the ground remains.

I learned so much from my parents. I’m a positive person, I’ve always just got on with things and their love, strength and determination have brought us to get where we are today. But there are some days when I wonder why there is so little help there for us and other families like us and why the help that there is, is at risk of being cut. We face losing everything, our savings, my job and my chances to leave the house or see friends. It shouldn’t be like this.

Carers are not an optional extra; we prop up both NHS and social services. This needs to be fully recognised.

My ask to all of you here today is that you do your best for families who are hit with disability and illness – understand what it is like to care, and then make a difference. A change in the way you work and what support you offer, could make a difference for families like ours.

Thank you for listening to our story.

A shorter version of Rosemary's speech is available to read here at Carers UK.

The publisher is The Centre for Welfare Reform.

In Memory of My Mam © Rosemary O'Neill 2013.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.