New site for Carers

October 23, 2008

I know I haven’t posted for ages and I am planing to rectify that very soon – it’s been a hectic and stressful few months.

This is just a quick post to let people know that there is a new site where Carers can meet, chat, join groups, write blog entries and more.

If you are a carer (or have been one) head on over to Carers and join up!  If you aren’t a carer, but know someone who is please tell them about the site.

Hope to see you there!

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A (not so) simple weekend away

June 10, 2008

While James and I are in New South Wales we are busily catching up with family, and we used this long weekend to travel to Shoalhaven Heads to visit James’s Pop. We left on Sunday and returned yesterday (Monday). For most people, like James’s mum, this short trip would involve taking a small bag with a change of clothes and a t-shirt… very simple but simple is not a word that’s in the APECED vocabulary. After gathering all the medically related supplies I decided to take a photo.

List of items in this photo:

  • Blood pressure machine
  • Thermometer
  • 3 x glucometers – so we are covered if one runs out of batteries, and we loose one (I heard a story from a friend with type 1 who always had three glucometers, and in the space of two days she lost two and one broke)
  • 2 x glucagons – I haven’t had to use a glucagon for ages now (touch wood) but I always have one with me in my bag. In this case I wanted two so that if we had to use one, we still had one for emergencies.
  • Predsol eye drops – these have to be keep refridgerated
  • Cellufresh eye drops
  • Powerade – one glass = 15g of carb – so this is a perfect hypo fixer
  • Metamucil
  • 3 x regular soft drink cans – another hypo fixer
  • Insulin syringes – just in case something happens to the insulin pump
  • Sugar sachets – extreme hypo fixer
  • Tube of icing – another hypo fixer (i know i have heaps of hypo fixers – but it’s better to be over prepared than under prepared
  • 2 x solucortef – two for the same reason as the glucagon – if I have to use one, I have a spare.
  • Tablets for a week – we only have a weeks worth because I fill the pill containers weekly
  • Extra hydrocortisone – in case james gets sick and needs to up his hydrocortisone
  • New strips for the integra glucometer
  • New strips for the Sensocard glucometer
  • 12 sachets of movicol
  • 2 x infusion sets – James wasn’t due for a site change but we had to take one set in case his current one died, and then a second set just in case the first change didn’t work
  • 2 x insulin reservoirs – same reason as for the infusion sets
  • 8 x muesli bars – long lasting carbs for following a hypo
  • Insulin – in case we needed to do a site change
  • Quickserter – also in case we needed to do a site change
  • Tube of 10 glucose tablets – yet another hypo fixer
  • Esky and freezer bricks – to keep the insuln and presol eye drops cold

Rest In Peace

May 12, 2008

This morning at 10am, Carbi went to heaven.

After a long pain filled battle he is finally resting and pain free.

We love you Carbi and we miss you already.


Behind Every Man Is A Good Woman-An Expose Into The Lives Of Two Women Fighting For Their Loved One’s Survival

April 27, 2008

I have mentioned my friend Kate a few times on here and today you are going to learn a lot more about this wonderful woman! Kate and I met about a year ago. I replied to an enquiry she had about an organisation I used to volunteer for and I rang her. I didn’t normally make calls for the organisation, but something made me think I should call this time. Kate and I talked for ages and I got off the phone knowing that I had made a new friend. Kate and I spend many hours talking on the internet when we are awake looking after our ‘boys’. She is one of the only people who really and truly understands what I do, and what it feels like to be a carer, and this is because her life is almost the same as mine. Kate is full-time carer for her seven (and a half) year old son Lance, who has had type 1 diabetes for most of his life.

~Kate and Lance~

The other day, Kate and I were talking about the stress, fears and discrimination we face simply by being carers of loved ones with diabetes. Kate often interviews people over on her blog ‘Why did the insulin die in my pancreas?’, so we decided that we would interview each other. We worked together to produce the questions and we each answered them. I am posting Kate’s answer here on my blog, and my answers are on Kate’s blog – click here if you want to check them out! This post is long – but only because we both have so much to say so please read it!

Kate, describe yourself in five words
Passionate, determined, sincere, jovial, protective

How has being a carer for Lance changed who you are, and where you thought you would be as a 31-old woman? I imagined myself at 31 to be living in Europe or London, performing with large musical productions, having a long tern partner and friends from all walks of life. I was bursting with exuberance and enthusiasm for life. When I found out I was pregnant with Lance, it was an unexpected, but delightful, fantastic surprise. I embraced pregnancy, and kept a nine month journal. The next thing I can remember is sitting in emergency, barely able to see my baby as doctors and nurses surrounded him. When he was stabilized, we were taken to Children’s Ward, where the night staff immediately began “training” for our new life. My husband and I had no time to grieve or take in the shock of the diagnosis. Almost 6 years later, I am a shadow of my former self. Lance comes first no matter what. Diabetes dictates everything. I tried to befriend it, and allow it to teach me how it behaves, but just when I thought I knew the drill, I found myself constantly thrown with life-threatening curveballs, which have left me anxious, over-protective and scared for what the future holds.

Do you feel that people who acquire Diabetes at a stage of life where they don’t need full time care are aware of what goes into caring for Lance? I know for a fact that people who have been diagnosed as a teenager or young adult have virtually no comprehension of what it is like to start insulin therapy on a baby. The first time I took my son’s tiny soft hand in mine and pricked his finger, his body jerked, and his eyes met mine, he looked confused as to why I had hurt him. The fact that he could not communicate his feelings to me was extremely challenging, and I literally had to observe him on a 24 hour basis, had learn to read his moods, behaviour, body language and cries, to determine if he needed insulin or food. The only thing that has differed is that Lance is now able to tell me that he “needs” a sandwich or a popper, and if coherent enough, he is able to do his own finger pricks if he is feeling unwell. He still unexpectedly crashes just when you think he is having a good run. Because of a terrible scare before his 3rd birthday when I found him cold and blue, he now sleeps in my bed, where I randomly check his blood sugar levels through the night.

How difficult is it for you to have time that is specifically set out for YOU? Any plans for me have to be carefully planned around Lance and the availability of a trustworthy babysitter. I do make sure that when Lance goes to bed, that I have a new film to watch, or I spend time chatting to friends online. Diabetes is still always ticking away in the back of my mind, though.

Do you feel naked without a glucometer in your handbag? I carry two glucometers with me at all times, in case one has battery failure or a sudden malfunction. I often wonder what people who inspect my backpack think when they see numerous opened packets of lollies, numerous poppers and other diabetes paraphernalia. If someone else is carrying his backpack, I cannot help but make up an excuse as to why I should hold it, even if my hands are loaded to full capacity. I feel safe knowing that vital treatment equipment is close to me.

Do you think that if a group of twenty people of various ages and grounds were asked about Diabetes and what they knew about it, that they would consider it ridiculous for a person with Type 1 Diabetes to receive a carer’s payment? I have read many articles and Letters to the Editor, where people are angry and expressing outrage that a parent has to go through so much red tape to qualify for a Carer’s Allowance. These letters have all applied to parents who have a child with a severe physical or mental disability, or who are wheelchair bound. However, as a general rule, a large majority of people who find out that Lance has diabetes will baulk in surprise that he needs so much care, or will scoff that a diabetic needs financial assistance. I receive so many hurtful comments, like “Isn’t there a cure for that?” or “You should just cut his sugar levels down” or “he’ll grow out of it”. When these comments are said in front of Lance, it is even worse.

When you are so used to picking up the pieces of a severe hypoglycaemic attack where the reading is between 1 and 2mmol/L, does it frustrate you when you hear or read about other’s who talk about a hypo, and categorising it as ’severe’ and their BSL reading was 5, do you feel like you are talking about the same condition? Lance’s lowest glucometer reading has been 0.6 mmol/L after an extended wait at the doctor’s surgery. Although he was still conscious, the surgery nurse gave him an instant glucagon injection. Three doctors were immediately called in supervise him, and as his blood sugar had not risen above 3mmol/L after 15 minutes, they then made the executive decision to give him another one. He soon made it up to 6 mmol/L, and was examined thoroughly and sent home. It took 24 hours for him to recover from that hypo. He had blinding headaches, continuous vomiting, light sensitivity and severe lethargy. Many of his other hypos are between 1 and 2 mmol/L. When I read about parents who have never had to use a glucagon kit, or deal with a severe hypo, or adults who report symptoms of a severe hypo at 5mmol/L, I feel like the minority within the minority.

How do you feel when you receive almost no support from diabetes specialists? I often leave much anticipated appointments feeling numb and disillusioned at the lack of support from the likes of paediatric endocrinologists. Even though they have a brilliant understanding of Endocrinology, they appear to have very little idea of what goes on in our day-to-day life.

Would you justify that the following statement is correct: Lance’s diabetes as a whole is almost like a fingerprint-in other words, no two cases are the same? No two people with Diabetes have the same symptoms, and each person reacts differently to hypoglycaemia/ hyperglycaemia.

What do you hope that the future holds for you and Lance? I would love to see Lance’s blood sugar levels stabilized by an insulin pump, and for him to attend school, rather than distance education. The skills that I achieved earlier in my life have been put on hold now for such a long time; I would love to have a part of my old life back. I would like to have some of my younger years set free from the clutches that currently have us shackled together.

What are your deepest fears for the future of Lance? Each “anniversary” brings us closer to another year of oscillating blood sugars, stress put upon the kidneys, the heart, the nervous system and the eyes. Currently, JDRF suggest that most complications occur 20 years after diagnosis. My fear is that Lance is ill or has a life threatening complication(s) stemming from Type 1 Diabetes when his 21st birthday rolls along.

If you were not on alert continuously, do you believe that Lance could get through the day without you? Obviously, I would not leave my son for a day, but there is no doubt in my mind that he would have either ketones or be in hospital after a severe hypo if left alone with a person unfamiliar with diabetes. Well meaning people will offer Lance a bowl full of unsalted mixed nuts, not realising that they are largely made up of protein, when he really needs bread/pasta/fruit/milk.

Do you go through periods where you feel like you are totally overwhelmed with so much seesawing and sleeplessness? I sometimes find myself so tormented at the unpredictable behaviour of Type 1 Diabetes. When I have given his correct insulin dose, and ensured that he has eaten the correct amount of carbohydrates to balance the insulin dose, something that makes no sense will happen, like a reading of 26.4 2 hours after eating. As for sleeplessness, I am so exhausted from being a carer, a teacher, a mate, a chef , a nurse as well as staying on top of household duties, that if I don’t force myself to stay up until 2 am to do Lance’s nightly check, I will undoubtedly sleep throughout the alarm, or unconsciously hit the snooze button. Often, there IS a problem at 2 am, so by the time I treat it and get Lance back to sleep, sometimes I see a slither of daylight creeping through my window, and birds chirping as the sun has risen. I average 15- 20 hours sleep per week. I ensure that I have a solid sleep at my parent’s house every Sunday, whilst they supervise Lance.

How does your role of caring impact on your role of being Lance’s mum? I would love to be a Mum, just a Mum. So much of our day is consumed by diabetes, or schoolwork, that it is difficult to fit in mother/son time. We always make sure that we have a hug and say good morning to each other upon waking. Reading to him at night, and now him reading to me, is also a special time we share together.

How often do thoughts of “I am physically attached to Lance because of this condition? All the time. It is a rare occasion that he is not with me.

Can you go out by yourself without making contact with Lance to ensure that they ok? I often promise myself that if I do go to movies that are unsuitable for Lance’s little eyes, that I will sit back and enjoy every second of it. However, I cannot help myself but step out the cinema and get the person that is caring for Lance to do a finger prick, otherwise the rest of the movie is unwatchable, as I am walking through what would be happening with Lance away from me. If I am with friends for coffee, they also make me promise to leave Diabetes at home for an hour or two. I always end up making a quick call in the ladies to check if he is alright though. Again, well meaning people think that if his level is 5mmol/L, that he has a perfect reading. Things can plummet so very quickly from 5nnol/L to 2.1 mmol/L in Lance’s case.

Do you have the ability to vent your frustrations and fears about living under such vulnerable circumstances? I believe my family aren’t aware of the difficulties and challenges of living with and caring for a child with Type 1 Diabetes. They assume that if he has had his insulin, then all is fine. I am able to explain my situation to you, Liz, and know that you 100% understand any dilemmas that are taking place, and the frustrations and time consumed fixing a potentially dangerous blood sugar situation. James is also great to talk to, as he identifies with similar symptoms that Lance may be experiencing, or Dan, who often provides support in other ways, through his empathy and deep compassion, as well as his love for Lance. I often feel a sense of calm after speaking with him.

Do you believe that a General Practitioner would have any idea about what your life is like as a carer for Lance? My GP has a very good understanding of our situation, however, an afterhours doctor we visited about 5 months ago told us to cut Lance’s “tablets” in half after a run of hypos. A lot of doctors have made the comment of how unusual it is for Lance to be so young and have Type 1 Diabetes, when most people diagnosed with Type 1 are young children; in fact it is the most common chronic childhood illness. I often have to spell out words like “Glucagon” for them to write a script, and tell them the dosage required.

Because you can’t FEEL what a hypoglycaemic episode is like, do you feel discriminated against by the diabetic community because you don’t have diabetes, yet you treat them constantly and help Lance to pull through them? Yes. I have spoken to a few people with Diabetes who have shown aggression towards me because I don’t know what a hypo or a hyper FEELS like. Sentences such as “it is wrong for you to speak on his behalf’ or “how could you possibly know what we go through?” have been said to me on more than one occasion. I can’t FEEL the symptoms, but I can recognise the symptoms in a passerby in the street, not only in my son. A lot of adults with Type 1 Diabetes have told me to “chill out” and that soon, Lance won’t need me soon, as he will be totally independent. These comments hurt me terribly, as it is I that brings my son out of unconsciousness by administering a horribly thick needle and blasting serum into his thigh, it is I that has received scratches and black eyes from my son whilst he is totally consumed by severe hypoglycaemia, it is I that carries the image in my head of Lance’s eyes rolling back so that I can only see white, whilst drool pours from his mouth, and his limbs jerk. On the other side of the scale, it is I who sits up with Lance administering hourly units of insulin when he has vomiting virus, it is I who is continuously checking for ketones.

Do you feel like you have Type 1 Diabetes? Yes. It already feels like that I have it anyway.

Does anyone else with Diabetes have the right to make assumptions about how Lance is reacting to a hypo? I have had a well meaning parent tell me that Lance’s hypo state is beyond my level of help, and that he needs to be treated by hospital staff. After the hundreds of hypos I have treated, I feel like I know when I am out of my league.

Do you have a instant kindred ship with other carers of loved ones with Type 1 Diabetes? Hardly ever, because, again, so many parents have children that have never had a severe hypo or have needed a glucagon injection. However, I have connected instantly with adults who are caring for their spouses.

What about carers who call themselves Type 3 Diabetics? How do you feel about that? When so many people in Australia believe that Type 1 Diabetes is cured by insulin injections, it is just causing more confusion to brand yourself with that moniker.

Do you feel that carers get enough support? Not at all. That is why I started my own website, so that other parents may be lucky enough to stumble across it, and know that they are not alone.

Do you feel that the visually disturbing, heartbreaking and challenging situations that present themselves in a person with Diabetes would be enough to traumatise their carer? When I hear a siren speed past my house, I get immediate chills as to when Lance had a seizure after a flu needle. He had a two minute seizure, followed by bleeding from the mouth, jerking limbs, the inability to speak or communicate. That was the most terrifying moment of my life. Also, on the odd occasion when a hypo is in the 1mmol-2mmol vicinity, Lance will fight and scream and refuse to cooperate with me, he has told me to stop “harassing him” and that he “hates me.” He also will spit lemonade straight into my face (I have invested in raincoat jacket and hat to protect my clothing and hair now) and yet when he has recovered, he has little or no memory of this behaviour. The time he did tell me he hated me, he cried in my lap, apologising over and over again, repeating how ashamed he was of himself. It is so cruel that a seven year old has to deal with this.

Do you think that the diabetic community take into consideration situations such as: sitting on top of your thrashing child to give them a sugary drink, administering glucagon injections to a person who is clearly conscious and disorientated, receiving physical injuries whilst trying to treat a hypo, or even being all alone with no one to help you whilst you wait second by second for Lance’s eyes to flicker open? With the exception of Lance’s father, who does not live with us, I feel totally alone when dealing with these frightening situations. No one will ever know, unless they are unlucky enough to witness it, how traumatic it is to see your child have to be restrained whilst honey is rubbed into their gums, or the screaming and crying that endures until the hypo is over. It takes a good few days to recover from one of these incidents. I know that people with Diabetes are aware that these situations happen, but it would be a rare opportunity for them to witness a fellow person with Diabetes in a distressed and irrational state.

Because you don’t have diabetes, do you feel as if you don’t have the right to make comments or compare situations with those that do have diabetes? I have felt like my contributions in a conversation do not matter or count whilst speaking with people with diabetes. I think that besides the physical symptoms, that occasionally some people who have diabetes forget that technically carers share the emotional symptoms as they do.

Does the carer’s allowance seem paltry to you, considering how much of your day is devoted to caring for Lance? I am so grateful that I receive any financial assistance at all, however, considering my qualifications, it angers me somewhat that if I don’t work, I am skimming the poverty line. $100.60 cents per fortnight covers expensive and healthier choices at the supermarket; however, it doesn’t go very far at all.

Do you have anyone who could step into your shoes if a situation arose? Lance’s dad could probably jump in if an emergency arose, however I know that he would be anxious.

Do you fear for your own health and safety, knowing how much Lance depends on you to survive? I dread to think if anything happened to me, what would happen to Lance. I have all of his dosages and medical information written down and given to family members if an incident did occur.

When you are asked to provide your job description, and you reply “full time carer,” do you feel as if people are quietly judging you and Lance? YES. People will often respond with “Oh my neighbour’s daughter has Type 1, and she does brilliantly at school. What a shame that Lance is so held back from living a normal childhood.” I totally agree with the last part of that sentence, but again, Lance’s diabetes is totally different to the neighbour’s daughter.

When Lance needs hospitalization, how does it make you feel when hospital staff ask you what “you would do in this situation” or ask you to monitor BSLs? I am asked to perform all blood sugar tests, and I spend up to an hour providing information to registrars who have no idea how to treat a diabetic with DKA, or who needs a dextrose drip. The sentence “What do you normally do?” always seems to creep up somewhere whilst we are in emergency. The nurses are often more knowledgeable about insulins and the importance of replacing carbohydrates than paediatricians.

Do carers have a light at the end of the tunnel to look forward to? I would like to think so for many carers, but for me, with no cure for Type 1 Diabetes, and the years ticking by, I think that it will gradually become a constant battle to keep my son well and healthy.

Does the average Australian give enough credit to an everyday person who has given up their quality of life to ensure that their loved ones are cared for appropriately? I think if the average Australian could witness 24 hours in the day of a carer, that they would have a lot more credit for those who put their life on hold to care for a loved one.

Does the term “carer” equate to “unemployed” in the opinions of some? Yes. When asked what I “do” and I reply that I am caring for my son, many, many people have said “Oh, so you are on Centrelink then?” This may be the case; however, Centrelink does recognise ne as a registered care for Lance. It is a 24/7/365 job that I do voluntarily, and may I add, without any regret. Lance’s health is paramount in my list of priorities.

Professor Robert Cummins (Deakin University) says of the results of his study into carer wellbeing: “We have been doing research in this area for more than six years … and I’m not aware of any group that has ever been found to have a wellbeing score as low as carers”. Professor Cummins also said that the average wellbeing score for Australians sat between 73 and 76, while the average score for carers was 58.5; for those who resided with their frail, disabled or mentally ill spouse, parent or child, the score was 58.4.” What do you think contributes to this? The constant state of alert often leaves a carer with feelings that this is all their life will amount to, therefore depression and self loathing can easily become a pertinent issue for the carer. The stress and time involved with looking after a chronic disease often isolates a carer from the rest of society, and even without knowing it, they put their health on the backburner, whilst ensuring that their loved one receives constant, quality care. Appointments, dealing with Centrelink, finances, bills also need to be addressed by the carer; which are all things that are stressful enough for those who do not hold a carer’s position. Carers need to have a lot more support; after all, they are providing an invaluable service that financially assists the Federal Government immensely.

Do you ever feel discriminated against by other parents, who have children at school with Diabetes and who cope really well, when Lance is considered lucky to make it through the day without a disastrous hypo/hyper attack? Other parents of children with diabetes will often ask me if Lance is receiving the correct basal dose, or if his specialist is concerned about his “brittle” state. I am delighted for kids with Diabetes who are able to attend school and extracurricular activities, but after Lance’s experience at preschool where he was “expelled,” as his diabetes was causing the staff “burnout,” and parents were beginning to ask why I was always there… I was devastated to think that at 5 years of age, he had already been a victim of discrimination. Lance’s diabetes is just different to others’ with diabetes. It just happens to be that without constant supervision, he is highly susceptible to falling unconscious. That’s just the way things are, and I accept that. Some parents do query if he tests frequently enough (he tests 10 times a day) or if he is receiving enough carbohydrates (I spend $400 a fortnight on food which is primarily for him).

When you describe yourself as a carer, have you had the experience where people assume that Lance is disabled or mentally retarded? Yes, I have been asked if I have contacted special schools to see if they would accept him. Lance is currently in Grade 2, and he can read like a child in Year 5. He can spell most words, and he is able to type, perform maths problems that are of a higher level of difficulty for his age. His one- on- one experience with me has given him the added advantage of gaining all my attention, therefore learning at a faster rate. His vernacular is outstanding, to put it mildly.

How much of your day is taken up by carer responsibilities? From daybreak to the moment he falls asleep, and then during the night. The only time I am not thinking about Diabetes is when I am asleep.

Do you think Lance is aware of how much stress, time and commitment is required to perform you daily duties? I go to extreme lengths to ensure that he doesn’t know. He is a very deep thinker, and he would be very sad if he thought that what I do as a carer was abnormal. At this stage, he thinks that all parents go to these lengths for their kids. I will let him believe that for as long as possible. He has enough to contend with, and I want him to enjoy what little childhood he has.

Have you ever had someone flat out disagree with your knowledge of diabetes and how it affects Lance? I insist that Lance wears shoes at all times when he is outdoors. When another parent of a child with diabetes noticed this, she asked why I was so pedantic about “shoes.” I explained that I wanted to instil good habits for later life, for one, and also to protect his feet against injury, which could lead to infection, which could lead to other problems. People in their teens have had toes amputated from feet injuries. The other Mum told me that it was wrong to keep Lance “cooped up” in shoes all day long, and that only people with Type 2 Diabetes suffer from Peripheral Neuropathy. I have also had a father insist that a reading of 22.4 mmol/L shouldn’t be treated by insulin correction, but by the hospital – when I refused and corrected it himself, he threatened to contact the hospital himself. I asked him to give me 30 minutes, and handed Lance a drink bottle. Within 30 minutes, his level had fallen to 13.2mmol/L. I don’t consider myself to be a Diabetes Diva who knows all, but I do know enough to be confident enough to share information with other parents on my website, something I would never do if I was the slightest bit unsure.


Sweet Bitter Survival

April 25, 2008

James has started his own blog, be sure to check it out here.  There isn’t much for me to say as you all know Jimney – so just head over and have a look… I’ll be here waiting when you get back!


Letter

April 24, 2008

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.

___________________________________________________________

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 18th 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.


Generosity

March 28, 2008

As James’s eyesight gets worse we have been concerned about Blood Glucose Monitoring as you need to be able to see well to read the result on a normal meter. I went on an internet search for a solution to this problem and discovered a meter which will talk the results of a test. This meter is called the Sensocard Plus.

sensoplus_white.jpg

I continued my search – this time specifically looking for information on the Sensocard Plus. I found a few road tests about this meter and it’s non-talking twin, the Sensocard blood glucose monitor. Almost everything I found was positive – the only negative point made was that the case is a lot bigger than it needs to be.

My next virtual stop was on the Diabetes Australia website, and specifically at the National Diabetes Services Scheme (NDSS) order form. This enabled me to check if the strips we would need to use for the Sensocard Plus would be covered under NDSS. Luckily the strips are listed on the NDSS, if they weren’t listed we wouldn’t have been able to afford to pay for the strips.

Then I hit a road block. I looked at the price. The Sensocard Plus is approximately $125. Not a huge amount – but not an amount we can afford right now. While James can still mostly see his meter (if the light is right) if he is going to need to test without seeing it is better that he learns now while he can see.

So I had a thought. A lot of meter companies give free monitors to diabetes services. This way they can guarantee that the person who gets the meter will be buying the strips made for that machine and therefore increasing their profits. While I hate asking for help, I decided that we had nothing to loose by contacting the Australian Distributor of the Sensocard Plus (Point of Care Diagnostics – PCOD) and explaining out situation. I sent this email at 2am on the 27th. Almost exactly 12 hours later I got a reply saying that they would happily send us a Sensocard Plus monitor.

I was very happy to say the least. They got an email back from me which said “Thank you! Thank you! Thank you! Thank you! Thank you!”. We then headed off to physio and on the way home stopped in at the chemist to check if they stocked the strips (they didn’t so we organised for them to order some for us). When we got home there was a reply from POCD saying that the meter had just been packed and would be sent that afternoon. They also wanted to let me know that the strips where listed on the NDSS but aren’t carried by most chemists as they aren’t as common as some of the other strips.

At around 3pm there was another email in my inbox from POCD with an attachment as the lady who had been emailing me thought that it would be easier for James to read the manual on the computer – where he can increase the font size if needed – than in the book which comes with the meter.

This means that at this moment a new talking meter is somewhere in the Australian postal system on it’s way to our house!

I just want to add a thanks to the lady who I have been emailing at POCD, she has been very friendly and helpful. If she is a sign of the customer service we can expect with our new meter, I don’t think we will have any problems!