Working in the carers’ project has recently led me to reflect on my own experiences as a daughter and a sister caring for my family. It’s difficult to be specific about when I took on this role as it happened almost without my noticing: taking my mum, dad or sister to their hospital appointments, getting their shopping and helping to fill out numerous forms. As time went by, instead of helping on the odd occasion the demands increased and I discovered that you become more of a personal assistant, caring for all areas of the person’s life on a daily basis, including paying bills, arranging personal care, and helping to keep them safe.
It’s estimated that two million people become carers each year and that it will affect three in five of the population at some stage in their lives. I didn’t appreciate it was happening to me and didn’t class myself as a carer – I was just doing the things any daughter or sister would do through affection for my family.
Like many of you who will be reading this I had a full time job and was working in a national role which required a lot of travel with overnight stays. I was very lucky to have some flexibility in my working hours and a fantastic manager who supported me in taking my family to their appointments during the day and making up my hours in the evening. As the appointments became more frequent this became more of an issue. My brother lives 100 miles away but started to come and help out so we shared the load. I realise how lucky I was as so many people have no backup.
My mum was a wife and mother of three, and had worked as a senior sister in a busy accident and emergency department. She managed to juggle all that life threw at her but things changed 12 years ago following heart surgery: there were complications which resulted in a long recovery period and the ‘loss of part of my mum’. She had increasing issues of forgetfulness, lost her confidence and things that had been so easy for her suddenly became so challenging. The deterioration was so gradual that it is difficult to identify any point in time where things went from being a minor inconvenience to a major problem. My mum was displaying signs of dementia but no one believed me except for my brother.
There were times when I had to have my phone with me all the time, just in case there was a problem. I cannot recall the number of times my mum called me over 20 times in an hour to tell me she couldn’t find the right channel on the TV – what time am I coming home? did I just ring? I often felt sheer frustration, but had to keep telling myself that she wasn’t in control.
I remember arriving home after a 13 hour day to be presented with undercooked or cremated food – it sometimes made me want to walk away. Leaving my mum to ‘do the washing up’ only to have to do it all again when she went to bed as she could no longer wash the pots effectively. I felt sick the day she told me that “these very nice young men came to the door collecting money for cancer charities and sick animals. I invited them in and gave them my bank account details and they helped me fill out the forms”.
…….only to be told by my GP that there is not a problem.
My dad had been a keen sportsman, and as he grew older he ended up living on his own in a first floor maisonette. He liked being upstairs as he felt safe but I hated the stairs as I feared he may fall down them. He had a dodgy knee that gave way without warning; which sometimes resulted in him falling. Over the years he developed Parkinsonism and the stiffness made it difficult for him to get himself up again. The helplessness I felt when on the train to a meeting 2 hours away from home to receive a call to say there was no answer when a friend had called to collect my dad and the sickening feeling as I realised I had the spare keys in my handbag. Listening to the police breaking the door down over the phone and not knowing what they were going to find. Then hearing the relief in my son’s voice as they found my dad on the floor. He had fallen the previous evening and been unable to get up but he was alive.
My sister was born at 28 weeks gestation in the 1950s. At that time premature babies were treated with 100% oxygen which resulted in blindness. Her traumatic birth resulted in health problems in her life; she attended a special school and was unable to take on employment which resulted in her attending a day centre. She was fiercely independent and lived as full a life as she was able. She had a long period of time in kidney failure which required haemodialysis three times a week.
I first realised I had an issue when I had to fit in three hospital appointments in a week.That would not be so bad except when you wait for three hours to see the doctor for five minutes to be told “all is stable – see you again in three months”. Each time you go you see a different doctor and the lack of continuity is unhelpful. Going to the haematology clinic is the worst as you wait for over an hour to have bloods taken; then wait while they get a batch of samples to send a job lot to the lab, wait for the results to come back and then wait to see the doctor. So many pointless appointments which took up so much of my time.
At times life has felt severely restricted by caring responsibilities and the things I have needed to do. They are often difficult, frustrating, sometimes time-consuming and at times have had an impact on my own health and social life.
The good things
The continued care and support of my brother and his partner, having someone to share the burden with helps so much, even if they are not nearby all the time.
The day my dad’s GP acknowledged that I was there to help and treated me as a partner in his care.
Having a great neighbour that you can phone and say ‘will you just pop in and check my mum is ok?
The support that’s available from the voluntary and charitable sector has helped to ‘fill a gap’, in particular:
- Crossroads Care – I used my carers allowance to pay a carer to collect my mum from the day centre and take her to Bury market, have tea and cake before coming home. I didn’t have time to do that.
- Uniting Carers and particularly having a conversation with an Admiral Nurse when I was in total despair.
My dog Charlie: he is always there particularly when times felt unbearable. When my sister died I felt my whole world had fallen apart. Charlie was my reason to get up in the morning after she died.
And finally bringing my mum home, from her care home, for egg and bacon – her favourite!
Delivery Team Lead, Domain 4 and Network Development, NHS Improving Quality
- A personal reflection on new beginnings after half a century of caring (nhsiq.wordpress.com)
- Family carers – ‘for the love of it’ (nhsiq.wordpress.com)