We live in the present, anticipate the near future, refer to the immediate past, and occasionally think nostalgically, but rarely look deeply into the future. Until two years ago, I looked upon myself as having the abilities and the energy of someone 40, until I was seriously injured, and I became a full-time carer, with absolutely no knowledge of what faced me. For this reason, now after two years experience, I propose to set out, my amateur knowledge of the problems that one faces, the knowledge that one must obtain, and what is available in the way of care, supplied by local authorities and the health service. It is a very steep learning curve.
The first thing you have to accept is that you are the most important person, not the invalid for whom you are caring. The work will be tedious, long, and severe, and the carer is often not aware of the stress that they are under. It starts off almost immediately, and readily becomes a 24 7 responsibility. Professional medical people, nurses and doctors, coming to aid the patient, will say to you, ‘take care of yourself’, this isn’t a throwaway remark, it could well be that the experienced medical person is seeing the signs of stress in you and warning you so that you may take some rest, or if necessary arrange for the patient to be put in a home, for what is known as ‘a respite period’, to allow the carer to recover. This is, a common occurrence. If you fall ill the patient will then have to go into hospital or a home, with all that that implies. You must understand that when you are sleeping your subconscious is awake, questioning every movement of the bed of the patient, and every sound. This means that your rest is precarious and adds to the stress
The second important function is the supply of medication. The patient will be under a number of very serious pills and perhaps medicines. The timing of some of these is very vital, and it is your responsibility, to see that the patient receives the correct medication at the stated time. This sounds rather obvious, but it is difficult in a home environment to be so marshalled. Friends call, there are minor domestic uphevils which distract the carer and it could be hours later that the carer discovers that they forgot to give a pill or pills. Recently I myself was on 20 pills a day, and for safety I put all the pills for a whole day, into a small container, then I could count them and confirm whether I had taken them or forgotten to take them. How one achieves this strict regime is up to the individual. There are packages available which can be supplied by the chemists and can help, and one can buy other proprietary brands which might help.
The third important function is the overall relationship between the carer and the invalid. It can depend on the mental and physical state of the patient, whether he or she is amenable, it also depends on your own physical condition, whether you are able to carry out the functions that are required. In my case I had a broken spine, which meant that I had to manoeuvre furniture in such a way that I could help the patient dress and undress, without actually stooping my full height. In these circumstances a local Trust, on a request by the doctor, will supply people who will come to your house at fixed hours, every day, to carry out certain functions, such as helping to make meals, washing and dressing the patient, and if necessary in particular cases, helping the carer if he or she is also handicapped. In my district we have a very good system, but by talking to other carers it would appear that there is a postcode lottery. If the patient is at all insecure on the feet, is essential that they use a rolator at all-times, as a fall is very serious and can be fatal
Finally I just want to mention the problems of catering. With this level of caring it is difficult to go shopping, but shopping online makes life bearable. An additional freezer is an advantage, and adopting some form of rotation of the menu makes catering more simple. One can cook a large amount of mashed potato, then, using an ice cream scoop, parcel out balls of the mash into boxes and freeze for future use. In the same way one can get large amounts of meat, cook it and box it in small boxes. Frozen vegetables are a must. One of the problems of catering is that friends and relatives feel bound to bring you meals, when you already have some leftovers in the fridge.