My beautiful mum, Motor Neurone Disease and iPads
That's my mum in the picture. Twelve months ago our family was rocked by a diagnosis that would change her life, and all of the de Souza family, forever. The disease that some people know as ALS, or MND, is not a sudden, kind disease. Most sufferers eventually die in their sleep, but not before awful suffering. Muscles waste away, one by one. Eating becomes difficult, as does breathing. Anything that requires a muscle is fair game for a disease that leaves only conscious understanding intact. Sufferers know everything that is happening to them, which at times becomes too difficult to bear. At the time of writing, my mum can't even itch her nose.
Yet long before such realities kick in, MND creeps up on its victims in a variety of subtle and confusing ways. With my mum, it started with her observing a toe that was slightly more curled up than usual. After several innocuous falls, she sought medical advice. In July 2015, some eight months after the initial symptoms, she was diagnosed with foot drop, an irreversible but ultimately manageable condition. Yet MND doesn't stop at the lower leg. Foot drop was a mere stop gap on a journey towards the final diagnosis, and towards near-total paralysis. She lost movement in her right arm and had to use a zimmer to get about the house. She could no longer climb the stairs to her bed and was confined to her sofa, where she now remains for most of the day.
On 9th December 2015, the neurological tests she underwent all pointed to more than just foot drop. Mum's lovely doctor confirmed that she was indeed suffering from Motor Neurone Disease. This condition is terminal, and involves a gradual wasting away of muscle as a result of the brain's inability to send appropriate signals to different parts of the body. There is no cure.
Suddenly, this fiercely independent and dynamic woman was faced with the reality that she wasn’t going to get better. Instead of looking forward to a retirement of adventure, she faced life in front of a TV, with carers feeding her, changing her, and using a hoist to place her on to the commode. The year 2016 has been nothing short of horrific for this beautiful lady. A little while back, she became unable to work the remote control. She slid into deep depression. The mum who raised me and protected me, now needed me to literally raise her and to protect her from a fall on her way to the loo. MND spares no dignity and leads to almost complete loss of control. My mum soon lost the ability to wipe her own bottom. My brother and I were afforded such tasks.
Yet we had young families of our own, jobs to hold down and mortgages to pay. Besides, who wants their son to perform such things indefinitely? We had to find another way, for all of us. For me personally, I wanted to feel like a son again, rather than a carer. Then I felt guilty for being so selfish. MND attacks the wellbeing of whole families, and makes you constantly question how much is too much, and how little is too little.
Along with our sense of helplessness we were faced with huge hurdles, not least the full inefficiency of the health and social care system. Care agency after care agency struggled, or refused in one instance, to meet the demands of such a complex set of circumstances, which involve huge physical adaptations, emotional trauma, the administration of a cacophony of different drugs to manage pain from bed sores, and a body that wants to slump at every opportunity. In England, free care only lasts a month before outpatients have to be means tested for continuing help. It took three months for mum's personal care allowance to be approved and even then the funding she received was a drop in the ocean to what she actually required. While more support is now in place, it felt like we were running up a down escalator. The number of forms that needed filling out, just to be eligible for rudimentary care, is nothing short of a scandal. My mum literally held in her urine between care visits because she worried about the financial cost of increasing their frequency. That is the reality of Britain’s health and social care system today.
Yet we were determined that mum's remaining time with us would be better than this. In the early days the quality of carers varied widely and we are only able to provide help in large part due to luck. We found a few individuals who were, and still are, amazing. Wellbeing ought not to depend on luck, but governmental negligence and wilful austerity have created a perfect storm for families like ours. As a result, we seized upon any opportunity to grab the right people and to offer them more hours in the hope that they would prioritise us as opposed to another person in need. Some left their care agencies all together just to work for us. I am fully aware that poaching a carer from an agency means one less carer for another person in need. The lack of funding means we are competing with other sufferers of horrible diseases, for time, for resources, for help. This reality ought to rankle with any reader of this piece. No government should get away with this shoddy state of affairs. Not in a country as rich as ours.
Thankfully, the hospitals mum was attached to were brilliant, with kind, intelligent individuals who gave great advice on how and where to seek help. We built up a list of contacts and began badgering them for help, which eventually came from a variety of sources including a wonderful hospice, the MND Association, social services, occupational therapy and speech therapy, and from environmental control teams with an energetic and positive approach.
Fast forward to Christmas 2016; take a look at the picture once more. Despite the brutality of this truly evil disease, my mum is still able to smile. She is not isolated and has terrific friends who come to see her often. She has her family and she has her memories all around her in the form of pictures and letters.
Perhaps most importantly, she has won back control of a tiny part of her life - through some ingenious technology she can turn lights on and off by bashing her head against a control switch. She can answer the phone (although her inability to speak makes this option difficult). She can control the TV and listen to the radio. She can look at pictures on an iPad and FaceTime us if she so wishes. She can take pleasure in these small victories, with the use of HouseMate, a system that allows the iPad to become a control centre for her house. A simple nod of the head and mum is able change something in her ever-shrinking world.
I didn't realise it beforehand, but feeling in control is so important for people who are terminally ill. When mum was first diagnosed, she got an electric wheelchair, but it ended up being too complicated to use and required plugging in to charge. Stuff was just delivered and left in front of her. For someone who lives alone, it was hard for her to manage big, cumbersome machines, especially when she was in no fit emotional shape to invest the time in learning a new skill. Speech therapy teams gave her a laptop and software to record her voice, so that when talking did become difficult she could bark out a recorded order to us all. Yet again though, this initiative required too much effort on her part and the willingness of carers to put in the time to work the software. Meanwhile, other inventions, such as a toilet that automatically washes you, and a ceiling track hoist to deliver you to it, required days of building work, long delays on that work and perhaps a little too much emotional upheaval, reminding mum of her helplessness.
Yet an iPad and a switch, activated by a moving of the head, gave mum back some modicum of independence. It was brilliant in its simplicity and worked because carers and friends didn’t need to do anything. I think this experience should point us in the direction of simplicity and of creating products for vulnerable people that put them in charge.
Life is still awful for mum. Morphine helps her through the nights, and the company of friends and loved ones through the days. Yet the ingenuity of simple design, if matched with appropriate resources, can indeed make life more bearable. So too can the wonderful people involved with helping mum. We still have a long road ahead of us, but one that is potentially less daunting than before.