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Becoming my mum’s eyes and ears: A personal journey as a carer

Written by Health Record specialist and trained Nurse, Sarah Bradshaw. (May 2016)

A Special Mum

Everyone’s Mum is special to them, but I’ve always thought my Mum was extra special. My Mum didn’t give birth to me. In fact, she chose me and adopted me at 6 weeks old. She nursed me through childhood, complete with asthma and allergies, instilled me with a love for life, taught me to always do the right thing, as well as the ability to laugh at myself! She encouraged me to work hard and was very proud of me when I qualified as a Nurse, at the age of 35.

A few years ago, my Mum’s health took a turn for the worse when she had a heart attack, was diagnosed with heart failure and had a pacemaker fitted. Before my Mum left the hospital, she was given a card to carry around with her so she could communicate that she had a pacemaker with health professionals in the future. I didn’t know it at the time, but that was the first of probably over one hundred pieces of health documentation my Mum would go on to receive over the next few years.

In 2013, my Mum started experiencing a lot of aches and pains and lost strength in her hands and found it difficult to open things. She was diagnosed with a condition called Polymyalgia Rheumatica and was started on steroid tablets to help. At this point, my Mum was handed another card to keep with her to say that she was taking steroids, which doctors would need to know about if treating my Mum for anything else in the future.

Becoming my Mum’s Eyes and Ears

Later that year something really frightening happened. My Mum woke up to blurred vision in her right eye which gradually worsened during the day until she could hardly see. We live in Manchester and are lucky to be served by one of the best eye hospitals; a visit to their emergency clinic saw my Mum admitted to hospital straight away and commenced on stronger steroids via an infusion. This treatment literally saved my Mum’s eyesight, it did not restore it completely but improved it. At this point, my Mum was diagnosed with Giant Cell Arteritis.

These conditions started to become a full-time job for my Mum to manage. She regularly attended one Hospital for the Polymyalgia Rheumatica, another Hospital for her heart check-ups and the Eye Hospital for the Giant Cell Arteritis. Each specialist was great in providing the support and treatment that my Mum needed. However, it became very apparent that each specialist was working pretty much in isolation and we found that we needed to be able to communicate and coordinate my mum’s care and treatment between each location, including our GP.

By this time, my Mum was on a lengthy list of medication and regularly having blood tests and scans. Some of the blood tests were duplicated by the different hospitals so we started to carry around my Mum’s blood test results to her appointments to minimise how often she needed to have them. Some of the doctors were clearly frustrated when they couldn’t access my Mum’s scan results because they were on a different computer system at a different hospital, meaning that access to them would have to be requested in writing.

In the meantime, my Mum quite quickly became very deaf in both ears and was treated separately for this by an Audiologist. I was now attending most appointments with my Mum due to her impaired eyesight and hearing so I could aid her communication with the doctors. At this point, we were carrying around with us a pack of my Mum’s medication, copies of test results, letters from other clinicians, the pacemaker implant card and the steroid treatment card.

Growing stack of documents…

Last year, one of the scans found a worrying mass in my Mum’s head. It was originally identified as a slow-growing Meningioma which should not require further treatment, however, the mass grew and put too much pressure on my Mum’s optic nerve resulting in loss of sight in her right eye. This was extremely scary for my Mum, as she also had a Cataract on her good eye. Now her sight was very poor.

The following year my Mum’s right eye had to be removed and we faced a new challenge: how to manage a prosthetic eye. I was my Mum’s main carer by then, with additional support from Bluebird Carers during the day when I was at work. Managing a prosthetic eye is very daunting for most people at first, and I was worried that the Carers would be apprehensive on how to apply the eyedrops and eye ointment which were essential to my Mum’s care. I ended up writing a guide for the Carers which showed what my Mum’s eye looked like and how the eye drops should be given. It included photos of me administering the eye drops so that they knew exactly what to do. This guide forms part of my Mum’s personal health record of medications, test results, letters etc. that we carry around with us.

With little sight and hearing, my Mum coped amazingly well but it was the loss of smell last year that really came as a blow to my mum and made her feel down in the dumps.

Connecting up the dots

Every doctor and nurse that my Mum has been seen by has been brilliant and given her the best care and treatment for the health issue they were treating. It wasn’t until we brought together my Mum’s full list of conditions and medications as I’ve described above, that my Mum’s quality of life was saved. Another health scare to my Mum’s remaining eye this year led to a new doctor looking at my Mum’s personal health record. He was able to connect all the dots together and see that with the exception of my Mum’s heart condition, all the other health conditions were actually just symptoms of a single disease, Vasculitis GPA. This revelation meant my Mum received the right treatment that would prevent further deterioration of her sight, smell and hearing, which was truly wonderful. In fact, she has actually regained her sense of smell and couldn’t wait to enjoy a bacon sandwich again.

This is a picture of all the paper-based documents we had to carry around.

Sharing is Caring

I mentioned earlier that I am a qualified Nurse, but in fact, I have always specialised in health information technology to support patients and clinicians. I work with a small, amazing team who have developed a personal health record for mobile devices and tablets to help Carers like me, and people with complex health conditions like my Mum’s, keep all health information together in one place and share it quickly and simply with health professionals to get better health and care.

And here’s what my mum’s paper documents looked like in my Evergreen Life app…

The Health Document Manager in the Evergreen Life app

I am so proud of my Mum, of how tough she has been and how cheerful she has kept throughout all of these issues. I hope I have one-tenth of her strength in the future.

Love you, Mum, always xxx.

Since this article was written Sarah’s Mum sadly passed away in July 2016.

You can get further help and information from Evergreen Life

Evergreen Life is a health, wellbeing and fitness app, which brings information together in one place and allows the sharing of data between trusted family members, carers and healthcare professionals. Evergreen Life strives to support carers and improve their ability to act in the capacity of carer, by ensuring they can access critical information, ultimately benefiting their health and well-being, too. The Evergreen Life app is available on Apple and Android devices.

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Evergreen Life

Founded in 2014, Evergreen Life has grown from being a personal health record that put control in the hands of the user, to a nationwide health and wellbeing platform that spans primary and secondary care, as well as being a research ready platform for healthcare and life sciences institutions.