NHS, community care, families, support.

Care wise the week was as I expected, moving every hour, toileting, bathing, medication ( a lot) 3 times a day, constant monitoring of pain, feeding and also making sure she was happy and entertained. By 9.00pm that night I suddenly started to realize there was not going to be a clock off point, there was no one going to take over, this was down to me and me only. At 10.30pm she went to sleep, I had an hour watching the television then went to sleep beside her, totally exhausted. I have taken this little girl on holiday before and she comes and spends 2 out of 3 Friday nights with me, the difference is that my husband has been around or one of her siblings to help with things such as getting her a drink or her crayons and such like but what a huge difference that makes. Next morning 7.30 she was wide awake and wanting to be up, that alone is not a simple task it takes about an hour to get her up, first you have to make sure she is not too stiff before you can even start to think of washing and dressing, yes we have an over head hoist in place but that does not do the rolling and manoeuvring that is down to your physical intervention. At 10.30am I sat down to have a coffee, I suddenly felt very isolated, because of her constant pain and not having a chair that is suitable, at the moment she cannot leave the home. That also meant that I could not leave the home, she is at risk of seizure and must never be left, the furthest we could go would be onto her day bed in the garden but even the weather was letting us down. A friend and colleague of mine called as she was passing on her rounds, we had a quick coffee, I was desperate to see another adult and have some conversation.

This period has made me think back to when I was going into peoples homes and the amount of times, wives, husbands and daughters have all said the same thing, how isolated they felt and how lonely they got. I would breeze in do what was required, sometimes if time aloud have a cup of tea with patient or families then move on to the next patient, everyone a little different. I remember one case of a youngish woman looking after her husband dying from a brain tumour, we looked after his care three times a day, but after that she saw no one, she could not get out for shopping, she relied on Tesco internet shopping, nurses dropped in his medication, she kept telling me how trapped she felt. I empathized and suggested she rang social services to see about a sitting service, but I did not fully understand till now. When looking after someone so dependant you loose the right to nip to the shops, to jump in the car and run to the chip shop, to post a letter, the lucky ones are those with a big family support unit but even then it is not them who get up in the middle of the night because there loved one is in pain. I now understand that often the depression that hits so many who care for others is not down to just the illness that they see there loved ones suffering, but also the loss of all the things we take for granted, freedom to come and go as we please. I have nothing but the greatest admiration for those who give up there lives to care for there loved ones it is by far the greatest sacrifice, I have learnt so much this week, about my self and about arrogance, I have only really known professional care, now I know what is real care!
 

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