You are more than 6 times more likely to be seriously disabled
than die, following an injury or illness
The article that follows is a personal story, illustrating how the unexpected can suddenly happen and turn everyone’s life upside down. Injuries and illnesses can hit at any time, but there are some advance measures that can be taken that can smooth the way for those trying to cope in the immediate aftermath of the disaster.
My sister, Penelope, was the heart of her immediate and extended family and life and soul of the village she lived in, until one evening, returning from her Macmillan Nursing shift, she had a catastrophic car accident, leaving her severely brain damaged. She and I had both trained as nurses and often discussed how awful it would be to be left in the state of some of our patients. She was adamant it wasn’t going to happen to her! However, it had: and in the absence of her having made a Living Will, there was nothing I, her husband, or the medical team, could do to help her.
At the beginning there was hope; the prognosis from health experts was grim, but friends continually offered us misplaced assurances that they had read numerous books where the unconscious heroine woke up from their unconscious slumber 100% okay.
In the early days, I went to the hospital as often as I could and I was helping to bath her a few weeks after the operation, when she suddenly opened her eyes. We were convinced this was the turning point, but there was no life in her eyes and my sister no longer appeared to be there. From this point it was a long slow process of rehabilitation. She was transferred to another unit in Oxford – a major trek for her loving husband and family. It was a desperately traumatic time for everyone, particularly as she was so totally helpless and some of her care was not entirely as we would have wished. Eventually months after the accident, she was allowed home some weekends, so long as there was a nurse present to help with some of her suction and more invasive care. Her daughter had just qualified as a nurse and I was around and so between us we were able to help Pen come home. Those days are harrowing and blurry, but we still had hope that my wonderful sister would return and she would be back to being the fabulous wife and mother that she had been previously.
My brother-in-law re-arranged his life around my sister’s care. My niece got married and moved with her husband to come and live back at home to care for her mum. They had to re-organise the house to enable someone in a wheelchair to gain access to her bedroom, bathroom, the kitchen and living room. Her youngest child was 11, just starting secondary school and he and his brothers and sister were catapulted into a totally new way of coping with life. There were occasional glimpses of the old Pen, but the majority of time there was someone who needed 24 hour care and support. The hopes and companionship were dashed and everyone re-adjusted to a new way of living.
There was never a suitable time to grieve for the old Pen and the life she should have been enjoying.
You never would have registered a catastrophe of such magnitude had happened in the house. Everything appeared to continue as planned. My brother-in-law took my sister on holiday with him every year – even to Venice in her wheelchair. He wasn’t able to share a single memory with her, so recorded everything on video so we could all share it with him when he returned. No one could have given her better care than her husband and daughter. They had some help, but ultimately the 24 hour responsibility was theirs.
The early improvement that we had seen when my sister first returned home, then plateaued and over the years she became more difficult, incontinent, heavier, uncooperative and considerably harder to care for. My niece had two small children and any parent struggling to get children up and out, will be incredulous how my niece managed to get her mother up, bathed, change her bed and sort her out and get her children up and ready and to school on time. It wasn’t easy and some days my niece said she would wake up and cry at the sheer effort, exhaustion and monotony of being a carer. She NEVER complained and neither did her incredible husband.
When my niece was pregnant with her third child, her brother had a horrendous trampolining accident, paralysing him from the chest downwards. After considerable rehabilitation, he came back to live at home and my niece was now responsible for two paraplegics with very different needs and capabilities.
They carried on for a few more years but it was becoming too much. My sister was getting increasingly difficult to help and finally my niece and brother-in-law made the incredibly difficult and unbelievably guilt-ridden decision that after 18 years at home, the best place for my sister was in long term care.
This is one story amongst 6.5million carers. Some of these carers are spouses of others with Alzheimers, serious disabilities and degenerative conditions. People don’t generally choose to be carers, or those cared for – but it happens.
Often the caring role gradually increases, sometimes it is a result of a sudden illness, injury or accident that turns everyone’s life upside down. It can be hugely rewarding caring for someone, but can also be hard work, demoralising and isolating. The person you are caring for, may be fundamentally mentally or emotionally changed by their situation and in some cases may not recognise you at all. This can be even tougher!
People often have to up-sticks and live in new locations, leave their jobs and lose their friends. Their spontaneity has gone and they are often trapped in their house as the cared for person cannot be left. I am sure we all know people for whom this is the case.
Advanced planning can go a small way to help in the immediate aftermath of a tragedy. Consider too, what happens if the carer becomes incapacitated or dies…
What can society do to help? Any one of us could suddenly become carers/cared for in an instant!
Talk to each other – let those closest to you know what you would like to happen in the event you are unable to make your own decisions.
Write a Last Will and Living Testament – This makes everything so much simpler for everyone in the event of your death. Your wishes are clearly documented and there is a witnessed record as to how you want things to be, should you no longer be here.
Set up a Lasting Power of Attorney: This is a legal document that enables your next of kin to act on your behalf should you be incapacitated or even abroad and wish to empower them to make decisions or payments on your behalf. This is registered with the Office of the Public Guardian OPG. You can appoint more than one trusted friend or member of your family to be your attorneys and they can act jointly or independently. Their mandate is to always act in your best interests.
It means they can access your bank accounts, pay bills and keep going with the normality of life whilst coping with the disaster that has befallen you. Without this, they will need to go through a legal process to achieve this.
Ensure your next of kin can access your finances and your passwords – It is all very well, having established a Power of Attorney, but if they don’t have your account details that will be another hurdle to get over.
Store passwords, bank access details…extremely safely and securely, but accessibly for you, your partner or next of kin in case of an emergency – let them know where this information is kept and do not save a copy on your computer in case it is hacked.
It is sensible to store partial bank details in two different places eg – details and passwords in one place and details and usernames in another.
The same goes for your Will and any other important financial and legal documentation – ensure the key decision makers will know where to find this information.
Write a Living Will or Advance Decision Making Document – this is a document outlining your wishes should you become incapacitated and unable to articulate for yourself. It can cover elements such as your wish not to be resuscitated, to receive active treatment, be tube fed, specific advice on organ donation and any other instructions or wishes should you find yourself unable to speak for yourself.
If you can afford to do so, make financial provision/take out life cover to pay out if you do need care. Unfortunately, this cover is often at a ridiculous premium.
Just remember, you are over 6 times more likely to be incapacitated than die following an injury or illness – life is precious, live it to the full, but none of us are invincible, so make plans to make things a little easier your loved ones in your absence.
Written by Emma Hammett RGN
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