MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer
It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person. From 2013-17 I was involved in the care of my aunt (pictured below) and my mother (pictured right) at the end of their lives. Being a disabled person meant I knew all about aids, adaptations, and the benefits system. It made me empathic for someone who, like me, has physical difficulties, and I hope it made me sympathetic without being patronising.
I believe progressive MS gave me great understanding of how to help a 93 year old woman cope with Alzheimer’s and a 92 year old woman cope with bowel cancer. The reason I say this is that both these conditions involve immobility, incontinence and a range of problems which often bear an uncanny similarity to MS. That’s not to say progressive MS gave me all the qualifications. No, MS frequently robbed me of the physical strength to do everything required, but it gave me bags of empathy for two family members with similar problems to mine.
In the beginning
Things started to go wrong for my aunt around 2013. As a child my spinster aunt had always sent me birthday cards and this continued until 2012. Then in 2013 no card arrived. I waited a week then phoned. During a brief phone call it became clear she was having memory problems. A few months later as her next of kin I received a call from her GP which made me question whether my aunt’s problems were more serious. I decided something needed to be done.
I called the church my aunt attended and I spoke to the vicar. Yes, they had been worried about my aunt for some time. Within days I was at my aunt’s home in Sheffield, some 90 miles from where I live. On arrival it was clear my aunt, who had just been diagnosed with Alzheimer’s, needed help urgently and being her nearest living relative it was up to me to help her set up a Power of Attorney (POA) to manage her finances. I also fixed up a social services assessment. Within weeks a carer was visiting four times a day and the POA allowed me to pay her bills through her bank account. I also arranged weekly supermarket deliveries of food.
Lending a hand
As I became more involved in my aunt’s care it struck me Alzheimer’s was like progressive MS in the sense that you are always playing catch up with an illness that is constantly racing ahead of you. In progressive MS the big idea is the brain’s “reserve capacity” i.e. how much unaffected brain there is to compensate for the ravages of the illness. I think Alzheimer’s, which is also a disease involving the brain’s white matter, is similar and the fact it strikes people in their later life means the brain has shrunk to the point where there is little reserve capacity left to draw on.
Later in 2013 I found my aunt had been admitted to Sheffield’s Northern General Hospital in a confused state. The hospital said she was unable to be discharged home so I arranged for her to become a resident in a care home which was only 400 yards from her own house in Sheffield.
Juggling the load
While all this was going on, my widowed mother, also in her early 90s, and living in Paignton, was diagnosed with bowel cancer. I have two sisters, the elder of whom lives in the South West, and we had an informal arrangement that as I live in Birmingham I would take the lead in organising care for my aunt in Sheffield while my sister in the South West would take the lead in organising care for my mother in Paignton.
So, in 2014 my elder sister and I took out Powers of Attorney for our mother, a care home was organised and for two years I was travelling down to Paignton to see my mother in her care home and then up to Sheffield to see my aunt in hers. To say this was difficult for someone with progressive MS would be an understatement. There were several crises, but we somehow muddled through, ensuring that my aunt and mother were looked after for what I assumed would be a short period, and indeed my mother died in June 2016 and my aunt in September 2017.
What I know now
It may sound a strange thing to say, but looking back I think having MS has been good training because as a MSer my experience of dealing with the country’s labyrinthine care and health systems means I was able to ensure my aunt and mother had a good end to their lives. I never thought that having MS could bring with it any benefits but the past five years have made me reconsider this. I have learned a few dos and don’ts, I have made a will, set up a POA for myself, and bought a funeral plan. Without sounding morbid I have started to think about my own end of life care on the basis that one cannot live a good life without preparing for a good end of life and ultimately a good death.