Letter

I want to share with everyone the letter I wrote in February to Centrelink to accompany my claim for carers payment. I finally got approved for this payment about a week and a half ago. I want everyone to know the amount of care I provide James – but I am too tired, busy and frustrated to write all this out again so I’m copying and pasteing.

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To whom it may concern:

I believe that I need to include a letter to explain the care duties I perform for my husband James to accompany my claim for Carer Allowance/Payment, as I feel that the form does not allow me to show the amount of care I provide.

James has an very troublesome and difficult to manage condition called Autoimmune Polyendocrinopathy Candidiasis Ectodermal Dysplasyia (otherwise known as APECED or APS1)- an extremely rare endocrine disorder. There are many life-threatening components to James’scondition. He suffers from Addison’s disease, insulin dependent diabetes mellitus, hypoparathyroidism, pernicious anaemia, chronic candidiasis, vitiligo and alopecia. Each one of these conditions creates havoc for the others, therefore making them all harder to manage.

James has chronically unstable Type 1 diabetes. Despite being on an insulin pump, James has an Hba1C (a glucose marker performed every three months on a person with Diabetes) of 10.3mmol/L, indicating that his blood sugar levels are, on average, around 15mmol/L, this is well over the recommendation of an hba1C of less than 7mmol/L. On an average day, James’s blood sugar levels can vary from 1.8mmol/L (at this level James is barely conscious at best) to a readings over 33.9 (the highest reading that the meter can detect). To try and control James’s blood sugar levels, we check his levels by finger-pricking up to 10 times a day. As James has trouble with his memory; a symptom that is synonymous with late stage Type 1 Diabetes, but also some of James’s other conditions, I need to remind James on a frequent basis to “check his level”.

If James has had a good day, I also wake up at least twice overnight to check his level whilst he is sleeping. If James has had a bad day, I stay up most of the night and check his level every half an hour or hour. I am always prepared to pour sugar laden drinks down his throat if his levels are descending rapidly. James is unable to recognise that his level is dropping. He can sometimes feel that his level is low at around 2.2mmol/L, however by this level he does not have the correct level of cognition to treat the hypo appropriately. With James, episodes of hypoglycaemia are often sudden and come without warning. We are never far away from a glucagon injection (an injectable serum that has reversible effects on low blood sugar). An injection of this hormone into the thigh will kick start the liver to release built-up glucose stores into the bloodstream. I can’t recall the amount of times that I have had to inject my husband as I talk him through fighting unconsciousness, praying that he doesn’t fall into the stage of diabetic coma, or require resuscitation.

Addison’s disease makes it much harder for James to manage his diabetes. James’s level will go up after he has his medication, and will drop almost uncontrollably if he does not have enough hydrocortisone in his system. By itself, management of Addison’s disease is difficult, as it makes it hard for James to fight any infection he may contract. Illness, physical shock and dehydration can bring on an Addisonian crisis (hypovolaemic shock). If James starts to experience any symptoms of an Addisonian crisis, vomits or experiences severe diarrhoea he then requires an emergency injection of Solu-cortef, a hydrocortisone solution. James is unable to give this injection to himself and often when he is going into hypovolaemic shock he is unable to make his way to the phone to call an ambulance. If left untreated an Addisonian crisis can result in death due to extreme hypoglycaemia, dehydration, shock, low blood pressure, decreased cardiac output, arrhythmia’s, and/or salt loss with potassium retention. An Addisonian crisis can be averted by an intramuscular injection of Solu-cortef, which James needs me to administer, otherwise the situation will deteriorate rapidly into a immediately life-threatening state.

A typical day for James and I starts at around 8am when the alarm goes off for the third time overnight. After turning off the alarm I check James’s level using the glucometer which we keep next to the bed. After performing this check James needs repeated prompts to get up and have his tablets and breakfast. If James does not have his tablets at regular intervals he experiences low blood sugar levels and can also go into life threatening shock. During the day James requires prompting to check his level. Often he will head off to check his level, forget what he was doing, and thus need to be prompted again. As James forgets to use his insulin pump to deliver insulin when he eats, I also provide reminders for him to do this. Depending on what time we go to sleep, I will set the alarm for 12am and 3am (we have a dual alarm clock) so that I can wake up and check James’s level. When I wake up to check James’s level I reset the alarms so that they sound at 5am and 8am.

On a bad day James will sleep all day. When this happens I have to check his level every 30 mins to an hour, as his levels are very hard to control when he is sick. I also have to ensure he wakes to eat when he needs to, that he has his tablets when required, as well as checking his temperature and his blood pressure. It is not uncommon for me to spend the entire night awake on these occasions. However, good days can easily turn into bad days when James’s level unexpectedly soars or drops. On both occasions James will be extremely tired in the aftermath of the ravages upon his body from hypoglycaemia and hyperglycaemia. Whether the emergency has been a severe hypoglycaemic or hyperglycaemic episode, the result will always be blinding, torturing headaches, extreme light sensitivity and nausea.

The following is an example of a day which started out good and rapidly turned bad. The sinister nature of these conditions is that we never know exactly if, when, where or how serious an attack could surface. James and I got up early to take my dog to the vet. At around 11.30am I lay down to have a nap as I was tired from checking James’s level overnight. I was woken up just before 1pm by James telling me that he felt sick. He had been outside in the garden working and had experienced a severe hypo. He does not remember much of it, only that he was sitting outside and thinking about his vegetable garden. The next thing he was aware of is that he woke up face down in the dirt. He remembers getting up and coming inside to look for his car keys, then his symptoms seemed to be alleviated, despite the fact that he was standing in the shower with purely cold water running over him. He warmed himself, and was lucid enough to recall what he could remember of the life-threatening events that he endured alone, fortunately he came to wake me and let me know his situation. His level at this stage was 10.2 mmol/L. As we discovered later he had treated the hypo with the first thing he found when he opened the fridge, which was a litre of custard. He lay down to tell me what he remembered about his hypo. Suddenly, he felt overwhelmingly nauseous, and he had to rush to empty the contents of his stomach. It was at this stage where my presence was necessary, as I had to rapidly prepare a hydrocortisone injection; if he doesn’t receive an injection of this immediately after he vomits, he will experience severe hypotension and/or life-threatening hypovolaemic shock. I grabbed James’s Addison’s emergency kit, prepared and administered the injection. James then fell asleep, exhausted by the ravages of the hypo and vomiting. I then spent the rest of the afternoon monitoring James’s blood sugar levels each and every thirty minutes to ensure it did not drop too low as, since James had vomited, he had no food in his system to keep his level within a normal range, and he was not able to eat without the risk of vomiting again before he went to sleep.

James has been having increasing trouble with his eyesight. He has blurred vision and an aversion to bright lights. We have an appointment with an ophthalmologist on the 18^th of February, 2008, so we should know why he is experiencing these problems. Because he is unable to tolerate bright lights, I now have to do all the driving whenever we go out, including driving to an increasing number of doctor and specialist appointments.

James takes at least 19 tablets each day (133 tablets a week or 6916 a year). This number can increase if James needs to take more hydrocortisone due to illness or stress. Each week I need to sort out James’s tablets into pill containers so that he can try to keep track of which tablets he has had. Often it is only when James’s level drops low for no reason that we discover that James had forgotten his tablets, despite my many prompts. James also needs to have a cytamin injection (B12) every three weeks. James has trouble with allergies and one of his tablets each day is an antihistamine which mainly keeps this under control. When these allergies become prominent, James gets burning, painful eyes which he cannot open.

James is on an insulin pump to help control his diabetes. An insulin pump is a device which continually delivers insulin under the skin via a soft flexible canula and tubing which needs to be changed every three days. The tubing and canulas used for James’s insulin pump can be very temperamental, causing infections at the site, or bending and getting blocked. I have performed site changes on James in many different settings. As James usually uses a site that is towards his back on his side, he is unable to do this site change himself.

We are also working closely with James’s new endocrinologist, our GP and the staff at the diabetes centre, to get James’s insulin pump settings corrected to minimise unpredictable low and high levels. James’s other medication is also under review. It is a constant juggling act to manage the different medications, as the amounts needed vary almost on a daily basis. For example, if James gets an infection, (even a tiny mouth ulcer) he needs to take more hydrocortisone tablets, which increase his sugar level, therefore, it is essential that he is fed more insulin. A low blood sugar result naturally puts excess stress on James’s body, and he often needs extra hydrocortisone to manage this as well. This frustrating affect on sugar levels is something we are endeavouring to conquer so that we can program James’s insulin pump to account for these changes.

I recently had no choice but to stop working due to the fact that James needs me to provide care for him 24 hours a day. While I was at work there was no one else available to care for him, and obviously I am unable to be in two places at the same time. I enjoy working and I wish to return to work in the future if possible. As you can imagine, by quitting work our household income has been severely reduced increasing our financial burdens. The carers allowance would help to alleviate these concerns while we work to get James to a more independent state of health, which is a constant goal of ours.

I hope this letter has shown that I provide care for James for at least the equivalent of a working day as required for receipt of the carers payment. Although James is an adult, the nature of his conditions means that it is up to me to manage his health on a daily, even hourly, basis. It is almost impossible to express the difficulty in managing James’s conditions and the amount of time and effort I put into keeping James alive and as healthy as possible, but I hope that I have managed to express it adequately. I hope that by outlining James’s contradicting and life-long situations, and the examples that I have provided of a near coma or fatality has helped you understand the enormous amount of pressure that we both face every single day. I know you will now be able to appreciate the juggling act that we undertake managing James’s conditions, and the amount of time and effort we put into ensuring that James remains as healthy as possible. The infuriating and enraging situations arise when a miniscule amount of “relaxing for a day” or relaxing the usual level of control in regards to his medical conditions by either of us could realistically result in James’s condition spiralling out of control and into a life threatening state. James’s GP has stated that he is willing to write a letter addressing any queries you may have about James’s conditions or my role as a carer.