1) As told by one of our members suffering Lupus……
The majority of my friends are teachers or nurses or health administrators and they all ask "who's coordinating all of this?" to which I say I am and then they all stress about who is going to take over when I start being ill and can't get up from a chair on my own because of the pain. I'm not sure where they got the notion that my primary care physician should coordinate my care, maybe they saw it on TV or hear it on the ABC. All I know is that I have to co-ordinate my own care as the GP doesn’t and no one else does. This is where I need a carer.
Ideally my GP should be a continuing medical advocate for my care but they don’t do this when I am there for my ten minute consultation. A carer is a friend or person I trust, as they need to evaluate my condition today and coordinate my care. Sometimes I am so sick that I could not co-ordinate a mouse escape from a paper bag!
2) As a carer you can:
Provide a continuous relationship with the person needing your help.
Help the patient, when necessary, to ensure that the right care is delivered at the right time. This could be acupuncture, a GP visit, a pain clinic visit, exercises, hot pool relaxation and so on.
Have a view of the whole person; their emotional side; their physical side; their spiritual side and their family interactions. That puts you in a far better position than any medical person will every be. That is why you are really, really important.
Advocate on behalf of your patient. Sometimes communication with the doctor can be poor. Sometimes the patient is so depressed only you can get something moving. Sometimes they are just too ill to visit an allied health professional on their own.
When they are able, the best person to co-ordinate their own care is the patient. Things do go wrong as rheumatoid disease or lupus can be very savage. With any luck you will sense this coming and prepare accordingly.
From time to time you need to observe and rate the person you are caring for across eight activities and rate on a scale 1 to 4 where 1 = without difficulty and 4 = unable to do. The activity areas are:
Dressing and grooming
- Getting out of bed in the morning
- Walking around the local block (300 meters)
- Addressing personal hygiene
- Being able to reach for things
- Is hand grip functional
- Other common daily activities
- Over time there may be changes that you might want to mention to clinicians.
4) Building a care team
Do not rely on the General Practitioner for everything. A ten-minute consultation does not give time to design a professional care response. In most countries people with chronic diseases are giving only minimal support. The local health system is simply not set up for chronic condition management. Sometimes countries there are special financial subsidies available only with GP authority, sometimes called team care arrangements. Typically they are services like physiotherapy. As the carer working with the patient your team of two will need to build in to a team of five or more. An example of this is; the rheumatologist for all disease and medication issues; the GP for medication repeats and co-morbidities, a physiologist for special exercises, a pain management clinic and a psychologist for depression management. Clearly, the combination will depend on the severity of the disease, what is available where you live and how much money the patient is able to spend of professional services. What is clear, however, is that if the patient is moderate to severe then many will need additional services beyond what a rheumatologists provides. Part of your role as a carer is to identify possible support services in your local area and to work out the best way to utilise these services in consultation with the patient.
Please don’t underestimate the role of friends and family. Managing the disease is a whole lot easier if friends visit and support in other ways the patient experience. In some cases the carer needs to explain what is happening to friends. Don’t assume that everyone knows what rheumatoid disease (arthritis) or lupus actually is. Communication is very important.
5) There are five pillars to successful care giving:
- Listening carefully.
- Working out what care resources are available in the local area.
- Being sympathetic and understanding when you need to do nothing.
- Looking after yourself and having time out on a regular basis.
- Asking for help when needed.
On Being A Care Giver