Type 1 Diabetic Journey

Carers Duties

Here I list some of my Husband/Carer's duties. He is a dedicated person who has given of his time, care, labour, and even his career to provide constant daily care to me. He has learnt to cook meals from recipes, and does general housework including most of the washing and cleaning. The list covers many duties that most healthy people take for granted.

Carers' duties and responsibilities are wide and varied, but mostly a Full-Time Carer is on duty 24 hours a day, 365 days a year and usually lives with the disabled person if not sharing the duties with a second Carer.

Emergencies and medical dilemmas occur at any time of day and need to be attended to immediately due to the consequences, if left unattended. In a severe situation such as an extreme hypoglycaemic event ('hypo'), my husband/Carer becomes a fast-acting medic to remedy the situation. He has had years of experience in assisting me with this chronic medical condition when I cannot help myself, and often there is no time to get other help such as calling ambulance paramedics. We have a medical emergency routine where he saves me from near unconsciousness by giving fast-acting sweet drinks, and after I start to recover, longer-acting food. These hypoglycaemic events can occur regularly, and they are due to my blood glucose level dropping from 8.0>1.5 BGL, which is dangerously low. A non-diabetic level is around 5.4mmol/L BGL.

My Carer never has relaxing holidays as we accompany each other whenever we go away, and he is still on alert. Whereas I used to be able to take a week away by myself to visit my family interstate, that has now become impossible with my Diabetes worsening. I am still able to go away on a 2-3 day holiday, however he is never relieved of his duties, except when I am hospitalised. Being 62 years of age, (I am 60), he has a dysfunctional leaking heart valve that causes him considerable fatigue, breathlessness and sleeplessness. He has had this heart condition for six years, and has been my Full-Time Carer for the past 14 years.

His job, although mostly honorary in nature, comes with a payment of AUD$16515 a year in the year 2010, from the Australian Federal Government and that equates to only AUD$1.88 an hour over a year. This is his sole income. I receive a Disability Support Pension of $13741 a year for not being able to work with chronic Type 1 Diabetes and its complications. As a comparison, the current basic wage in this country is AUD$48000 for one person.

Carers are often the spouse, family member, friend, or close associate, and when a Full-Time Carer is not available to a person in Australia, they are either located to a hospital or sometimes an aged-care facility, where hefty fees are payable. These fees often equate to the value of a person's own home (Median Price is currently around AUD$350,000) and it is often put up as finance for such care. This involves handing over the Title Deeds of a property, and we did this for my own mother to be admitted to Aged Care.

MY CARER'S DUTIES -

Ambulance – He makes the calls for assistance. He also travels in the ambulance for all emergencies, and is on hand to give private medical information to doctors and staff about my history, and how each event has come about when we arrive at the hospital. He initially stays at the hospital for any length of time required to do this and also to assist me with insulin injections and get food when I am able to eat. In the ambulance on the way to the hospital, my husband fills out the necessary paperwork and then complete the hospital's paperwork at Reception, and he shows my Diabetic Log Book to medical staff and he also provides answers about my condition. He gives details of all other recent doctor's appointments if asked.

Banking needs - When I am unable to do my own banking, ATM, forms, card details, extra payments, ID for card recovery etc., my Carer does this.

Blood Glucose Tester – He maintains good care of the tester by replacing the battery when needed, if I cannot do it for myself, he resets any of the options if I accidentally hit a wrong button, and when the date and time did not show correctly (in July 2010) he decided to purchase a back-up tester. The wrong date and time affected the computer data in the connected Co-Pilot software (see Tools ) which shows a complete overview of my Diabetic Log Books. He also rings and organises a replacement tester every 2-3 years when it suddenly malfunctions and cannot be repaired. A courier delivers a new tester and he returns the worn out tester in the postage bag supplied.

Computer – Duties include maintaining recorded data from the Co-Pilot blood testing meter which shows blood glucose details in graph form for my Endocrinologist and G.P. When required. In May 2010 my Carer produced and detailed our own Diabetic Log book, (see Tools, or the free Download on the Home Page) making it larger and easier to see and use. He completes regular backups of all medical information and medical charts for the doctors' references. He assists with some of my correspondence when needed, does all our email connections, and is doing the set up for these Web Pages as I write.

Cooking - My Carer has become adept at reading cook books and preparing wholesome meals. He also purchases a continual supply of power drinks from a variety of sources, and light muesli or protein bars for my emergency snacks. When I am ill he prepares all the meals, and on well days we cook food together. My husband makes sure there is a good supply of cooked meals in the fridge for when there is no time to prepare a meal. This situation usually arrives when I experience a sudden drop in blood glucose level before a meal. Because of these duties he has a new skill of keeping the shopping list updated, and he has become efficient at getting everything on the list, and even some delicious extras.

Correspondence – These duties include checking my medical letters, documents, Government Support paperwork, forms, Sick Leave Certificates, proof reading numerous letters to my employer while on 10 years Unpaid Leave, and signing medical scripts for me on sick days. He once attended to important legal letters and papers, and has checked letters to Government Offices when that was necessary. He has helped me write to Politicians re lack of a Carer Payment and later we wrote a letter back with obvious discrepancies and accidental closure of his Carer Payment, see log book scan of week13-2002. He supervised a meeting in the City that was of paramount importance to my early retirement due to sickness, and later spent several days helping me write a lengthy paper that I needed to present to a Government body connected with my work. Having Type 1 Diabetes, and remaining coherent, is an uphill battle due to the constant fluctuations in blood glucose levels.

Driving and Doctors' appointments – My husband does most of the driving now and always accompanies me to do the shopping. When I am very ill he often does shopping by himself. He takes me to medical appointments when I cannot drive. We have found that driving me to Pathology tests, X-rays, hospital visits, Specialist and GP trips, and the visits to the chemist are the most time consuming duties for him. On some weeks, we estimate these duties take up about a third of his week. As I am only occasionally able to drive, he also takes me to visit my friends and family, and he usually drives when we have a short social outing together. I recently had a six-week period where I did not drive at all, and hardly went out, due to the pain of Diabetic Neuropathy in my legs. see Log book scan of Week42-2009

Housework – My Carer is quick to doing the washing up, even when I am able to help on a good day, so we share the duties. With the laundry, I put the washing on, and he always hangs that out, so we have a laundry morning, and do the three loads. When vacuuming is impossible for me, he does the whole house and tidies up. He also puts the rubbish out each day. Occasionally he mops and scrubs the bathroom tiled surfaces, and always cleans down the kitchen stove and benches after cooking. He has also been known to wash windows and steam-clean our carpets once a year.

Hypoglycaemic attacks ('hypo') – One of my Carer's main duties is detecting an oncoming 'hypo' and quickly getting lemonade or juice. When I am ill he tests my blood glucose level before and after an attack. He adjusts the amount of juice that I need with long-acting carbohydrate (one bread or 2 crackers), does a further test, and then when I am recovered enough to eat, he prepares a meal, or gets a prepared one from the fridge. These events are numerous and dangerous, and only occur in the Type 1 Diabetic.

Injections – My Carer gives me insulin injections when I cannot do it myself, which is usually when I have a high blood glucose level over 25mmol/L BGL. This is when I cannot see or think properly. He then does hourly blood tests to estimate the number of units to be given until the level is nearer normal. He writes all this information as it happens into my Day Log book. Sometimes these events occur late at night, even after a good BGL reading at bedtime.-see Log book scan of Week30-2010 -

Insulin dose – Usually on a very sick day with aching limbs, poor vision, fatigue and incoherence, my Carer reads my previous day's entries in the Log Book to work out a suitable insulin dose to match what we are going to eat today. Sometimes when I am unable to do the guesswork myself, he has a better understanding of what dose I need. Some weeks we have consecutive days with this situation. - see Log book scan of Week5-2011 -

Legal – We had a situation where we had to attend some legal meetings and appointments. My Carer proof read the legal documents, house transfer and title papers, and communicated on my behalf to the legal staff because of my sick day. When I am fatigued and incoherent he generally helps me get through any similar experience and always reminds me to eat snacks and test my blood while in a meeting.

Shopping – See Driving and Doctors' appointments.

Telephone – 000, Specialists, Doctors, Pathology, hospitals, friends and calls to family are a regular occurrence at our place. My Carer recently made a call to the manufacturer of my blood tester, when it broke down. He was able to discuss the technical computer cabling question with the matching Co-Pilot Software (see Tools) that he uses to track my levels, so we can readjust insulin doses. He takes all calls when I am ill, or resting. He purposely bought a land-line phone with a Caller ID feature to reduce unwanted advertising calls and other time-wasters.

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