Investigate the disease thoroughly to ensure you/the patient make the best choices possible. Read the Essential Guide to Living with AL Amyloidosis booklet.
Join an Amyloidosis support group, run by the Leukaemia Foundation. Unfortunately they don't have a specific page on their website for these groups, but you can sign up for their Amyloidosis newsletter, which has group meeting dates. You can also find other Australian patients/carers on the amyloidosis email and facebook discussion groups - see our links page for details. Just talking to someone who understands exactly what you are going through can ease your burden. You may be able to swap useful information too.
Create your own medical record of your patient. There will be many times when you will be in a situation when there is no copy of your patients' medical history available, so you need to be assertive in forming your own medical history. You and your patient will be able to identify trends showing progress or regression.
Give each doctor and specialist a copy of the Guidelines (pdf file) on Amyloidosis to keep with your patient's records. Your patient has an extremely rare disease and the majority of doctors will have little or no experience with Amyloidosis. Many doctors do not know the current procedures being employed in Amyloidosis Centres, eg in the UK ,Europe, & USA.
Make a list of everything you use during an in-patient stay at hospital, and keep a bag handy with these things at home. If an emergency arises at home, and your patient is suddenly taken for a stay in hospital, it is one less hassle to have to think about what they will be wanting! eg. personal radio, favourite lollies/sweets, shaver etc etc
If your patient is in a 2 or 1-bed ward in hospital, ask the nurses if you can have a folder bed or mattress, if you wish to sleep the night next to your patient. Nurses are usually very co-operative in the Oncology wards. Or bring your own bedding, with the nurses' permission.
Emergency department beds are notoriously hard and uncomfortable. To make a long wait on a trolley more comfortable for your patient fold a double bed doona/duvet/quilt on the mattress, before they lie down. You will need to use your own, as they don't provide them at the hospital. We keep one in a bag ready to go, when our patient needs frequent hospital admissions whilst on chemotherapy.
Apply for a pension from Centrelink: http://www.humanservices.gov.au/customer/subjects/caring-for-someone-with-an-illness-or-disability.
Apply for a disabled sticker for your car. Criteria is usually the use of a walking stick, and forms can be obtained from your local council & certified by your local GP.
If you are having trouble paying bills, apply to the Leukaemia Foundation for financial support. They support Amyloidosis as a blood disorder- but their funds are sometimes limited or unavailable.
Have an Occupational Therapist (from your hospital or ask your local GP) assess your house, to offer advice if your patient has trouble with mobility. Don't hesitate to bring mobility aids into your home, as these can greatly improve the quality of life for your patient. We strongly recommend that you purchase a very light-weight wheelchair, if your patient has trouble walking, as these are much easier for you to lift into the car.
Many recycled mobility aids are available through Op Shops or through schemes in major cities. There are numerous mobility support groups for Australia on the internet.