Archive for Carers

Desperate And Dateless-When Diabetes Turns A Date Into A Dismal Disaster.

This is a post that I have wanted to write for a long time, but I felt that the topic could be slightly cringe worthy.

I still feel that way, but I’m going to continue this time, instead of writing a draft and deleting it the next day.

In case you aren’t aware, I am a single, 31 year old mother. I have one child, Lance, who is the epicentre of my existence. We have lived through almost six gruelling years together, battling against severe hypoglycaemia, and more recently, wildly fluctuating blood sugar levels that were attributed to the release of growth hormones.

It hasn’t always been this way. I was once a happily married twenty-something when I discovered that I was pregnant. Life was peachy-Scott, my then-husband and I lived in a fabulous home, and wanted for nothing. We were not planning to start a family so quickly, however, as soon as we both saw the two “pink lines”, we were consumed with the thought of new life entering our little world.

A Very Positive Result!
A Very Positive Result!

We had an incredible first year with our gorgeous son. Lance was meant to be with us-he would gaze at me as if he had known me for years, even as a newborn. If I heard him crying, I only had to soothe him with some soft, comforting words or a lullaby, and he would settle immediately, soaking in my essence. We were incredibly close, we had bonded whilst Lance was in-utero. He knew me from the moment he was handed to me.  Without a doubt, the most incredible experience of my life.

Fast forward 1 November, 2002. Diagnosis Day. Hurricane Mellitus.

After a week in hospital, we returned to our house. It didn’t feel like “home” anymore. There was evidence everywhere of the chaos that had overwhelmed us prior to hearing “those” life-changing words.

That’s when the cracks began to show. I became so protective and vigilant of Lance, and without even realising it, I began to focus all of my attention onto Diabetes.  Whilst Scott slept alone, I would be lying beside Lance’s cot-observing, watching, testing..trying to avoid disaster or the possiblity of more distress in hospital for Lance.

A huge, jagged welt had divided the amazing relationship that Scott and I once had. He bottled his feelings, and never displayed any grief or remorse about this devastating misfortune that had been inflicted upon our son. I resented him for that tremendously. (It wasn’t like I wanted to see him sitting around, paralysed with heart-wrenching pain or in a constant state of distress, but his ability to move on seemed so callous to me.)I mistook his way of coping as not caring.

On 8 April, 2003, I lost my older brother to a horrific, aggressive cancer. He was diagnosed soon after his birthday in February, and died an agonising death five weeks later.

On May 23, 2003, Scott and I officially separated. We knew it was a permanent decision, and that there was no going back.

I left our family home, and returned to my hometown with Lance to be with my parents.

Scott left for Melbourne-again, I was full of resentment that he had the ability to abandon us, when we needed him the most. (I now realise that he spent a year there in complete devastation. He returned to Queensland one year later.)

I soon felt strong enough to find my own accommodation, and it was really important to me that Lance felt like he had a home again. Within the space of six months, I found myself existing as a single parent, with a baby who had a relatively short honeymoon period, in a city that had limited medical professionals/facilities for infants with Type 1 Diabetes. I spent that spring following a meticulous routine, in an attempt to create some stability for myself. The upheaval of my son’s diagnosis, the ruination of my marriage, the death of my brother and living a completely foreign lifestyle had left me longing for each day to end, so that I could disassociate myself from reality by sleeping.

Fast forward to 1 September, 2008. The first day of the season synonymous with new life. Spring has officially sprung.

My baby is almost 8 years old, and has grown into a fine young man. His Dad and I are still fantastic friends. I have a network of supportive and kind friends around me. However, despite a huge improvement in my quality of life since the train wreck that was 2003, I am desperately lonely and crave the company of a man.

There. I said it.

It’s not like I haven’t attempted dating, either.

For the past two years, I have felt reasonably safe leaving Lance in the care of my parents or Scott. I have had a few opportunities where I have been asked out for dinner, or to catch a film. The first few times were atrocious..I was sitting in the female toilet,mobile phone in hand,  whispering to my father to do a fingerprick so I knew what Lance’s level was.

 However, with time, I soon began to unwind and relax about leaving Lance for a few hours here and there.

I was lucky enough to score a date with someone whom I had admired from afar for years. He approached me, which was even better. We had a fabulous night out-a brilliant meal, no awkward pauses, much laughter and upon leaving the restaurant, I felt my heart THUD THUD THUD as he slipped his hand into mine.

All weekend, we exchanged text messages. There was a huge va va va voom factor going on. I was so incredibly excited. I knew that this guy, Callum, actually liked “me”.

I was even more impressed when he asked to meet Lance. (As Lance is such a huge part of me, a man who asks to meet him automatically gains mass credibility.)

I suggested that we meet up at the park on a weekend. He was more than happy with that suggestion.

The weekend finally approached, and I was sick with nerves. Lance was a little too young to realise how I was feeling. We arrived at the park, and there he was, sitting at a picnic table with his back to us. He had a huge bucket of KFC and their many various MSG laden side dishes laid out. Taking a deep breath, I held my head high, and approached him. He put out his arms for a hug, and I briefly had fantasies of swiping the food of the table and..well, you can fill in the blanks.

I digress.

The moment arrived when I introduced my boy, to a man who that I could imagine sharing something special with. Callum got down to Lance’s level, and shook hands, and playfully ruffled his hair. Lance seemed to like him, he chattered away, asking many questions and making fine small talk.

Callum opened his bucket of KFC. (Naturally, I had told Callum all about why I was suddenly single, and living alone with my son. He knew about Lance’s condition, and had shrugged it off as being “no drama whatsoever.”                                                                                                                                                             

“Here buddy, put your plate out and dig into some chicken,” Callum gestured enthusiastically.

“No, thank you Callum. I have my own sandwiches and fruit salad here with me. Thanks for the offer though.” Lance replied.

“Whaaaaaaaat! A kid who refuses KFC? You don’t know what you’re missin’ out on mate! Come on, your Mum and I are going to have some, I don’t want you to miss out.”

 (I wanted to ask a kid in the sandpit to bury me.)

“No, it’s fine. Thanks anyway. I don’t eat takeaway. It’s not good for my diabetes.”

There it was. The truth.

We sat in silence, eating our chosen meals.

Lance asked if he could go and play, and I gave him the go ahead.

“I thought you said his diabetes had nothing to do with diet!!” Callum said with an unexpected tone of  exasperation.

“Oh, it doesn’t. Well, not really. It’s good to encourage healthy eating habits, that’s all. Junk food plays havoc with blood sugar levels, too.” I replied innocently.

About 30 minutes later, I called Lance over for a fingerprick. He was panting and laughing, and out of sheer habit, wiped his finger on a serviette, ready to be tested. I got a droplet of blood, got a decent result, and told Lance to return to the playground.

(The following really hurts to write.)

“Whoa, what the heck was that? You should have prepared me for that! That was so WRONG! What sort of diabetes does he have if you have to do that to his fingers? Never do that in front of me again, hey. It’s so wrong that he was so relaxed and calm about it! So much for my lunch, my appetite is gone.  That was just SUCH a spinout.”

I was devastated. This man was prepared to accept me and my son as a package, but, as Diabetes wasn’t welcome, that meant that we weren’t going to be welcomed either.  Soon after his “spinout”. he yawned and said that the “sun had made him feel seedy.” (Or maybe it was my son and his fingerprick that made him feel seedy….) He grabbed his chicken, hugged me again, this time like there were metal bars between us, and said, “See ya babe. I’ll call you.”

After his little outburst, I was completely over Callum.

( I received an email two days later, telling me that he had dreamt of a future with me, but he couldn’t cope with having a “sick” kid in the picture.)

After I had recovered from my shock and disbelief, I decided that I wasn’t going to let one bad experience deterr me from dating. I let a friend introduce me to her brother, Jayden. We had a lot in common, but there wasn’t a lot of spark. However, I was happy enough to make a close male friend. He was a winner with Lance-he would read him stories and wanted to learn how to do fingerpricks. My faith in humanity was temporarily restored.

One weeknight, he appeared at my doorstep quite late, as he knew that I am a chronic nightowl. He slipped of his shoes and handed me a DVD and a bag of popcorn. This was the quality in a man that I love. Someone that is willing to be throw caution to the wind, and be spontaneous and fancy free. I was suitably impressed.

We sat together, and began watching the film, complete with subtitles. Ahhh..a man with eclectic taste in film. Had I been too judgemental with Jayden? He had definitely impressed me; he even put a cushion on his lap and told me to lie down whilst he gave me a temple massage. I was in sheer bliss until I heard a stifled cry.

I was up as quick as a flash, and hit the pause button. It was Lance. I turned on the night light. His hair was clamped down to his forehead with sweat, and his limbs were twitching.

BSL: 1.8mmol/L. It made no sense, especially as he had gone to bed at 9.3mmol/L after a suitable supper, only two hours beforehand. He was staring straight through me, and I knew it would be hopeless trying to coax him to drink. I assembled a glucagon injection and planted it into his thigh.

I caught a glimpse of Jayden out of the corner of my eye. He appeared as though he may faint.
“Ahh..Kate, don’t you think I should call an ambulance or something? That was really disturbing to watch!” he jittered.

“Well don’t watch, then!” I snapped back. I held Lance close to me, and sang softly as he sobbed.

After ten minutes, his blood sugar had climbed to 5.2mmol/L. The fingerprick was enough to set off the shock, and Lance began screaming and writhing.

I could see Lance turning a whiter shade of pale, and I knew that he was going to be sick, a common reaction from an emergency injection of glucagon.

“Jayden! Could you please grab some towels from the linen cupboard and..”

Too late. I wore most of Lance’s supper all through my hair and down my neck.

“Listen, Kate, I’m going to take off, okay? I’ve called for a taxi, and I’m going catch up with you really soon. Hope the little fella is alright-what the hell happened just then?” His voice faded away, and was followed by the distinctive sound of my front door closing. I had no choice but to take Lance into the shower with me, and clean us both up.

The next day, Jayden’s sister called, asking after Lance. I told her that her brother did a runner, something I didn’t really expect, considering that we were spending a lot of time getting to know each other.

“Oh yeah, he said that he would feel too scared to be around Lance in case that happened while they were playing or something. He’ll be in touch, though.”

(I saw him last Christmas in the mass crowds..I called his name, he turned around and grunted, “Oh, Hey.”)

Merry Christmas to you, too.

I’ve since found out that I’ve been described as a “great chick, heaps of fun, but with wayyyyy too much baggage..”, “she’s someone who I would definitely consider dating, but I’m not interested in having dates if she’s got her mind on her kid instead of me.”

So, this is my dilemma. I don’t have a problem meeting single, impressive-at-first-glance guys. I always assess them first, ie: genuine, sincere, honest-along with the ability to accept the good in every situation. I may have a son who has Type 1 Diabetes, but in total honesty, between the both of us, we are a really good catch. As much as I engage in “Dad” activities, I can’t possibly replace his Dad. Lance misses that, despite the fact that he is willing to spend time with me and do whatever I’m doing, without a complaint. If a male ever comes to our home, whether it be a tradesman or the guy who mows my lawn, Lance will quiz me later that day on whether I would “go out” on a date with said person. I always answer his questions as honestly as I can, and usually I reply that I don’t know about “his” personality, so I couldn’t possibly make a judgement based on the fact that “he” was polite/friendly/gorgeous.

As soon as the question, “So, what school do you go to?” is brought up, things usually go downhill very quickly.
“Why would you want to do homeschool when there are so many great little schools here?”

It’s then when I have to launch into the spiel about Lance’s vulnerability regarding hypoglycaemia. Like a reasonably ditressing percentage of straight males, they will appear concerned,shake their head in disbelief, offer a “tisk tisk” or two, or a “poor little guy”, when in fact, they are thinking..”Uh oh…high maintenance alert, no private time for sex, she’s going to be exhausted by the end of the day, there’s going to be interruptions galore when I’m trying to get busy with her..” Even the most genuine of men that I have met eventually show their true colours. They are single, therefore they want a low maintenance girlfriend who will slot easily into their already established and inflexible lives. 

I simply don’t fit into that category.

At the beginning of this year, I attempted to go on one more date. His personality was quite ordinary, his favourite singer was Dolly Parton, and he wore socks with sandals. However, I do try to treat everyone equally, and I hoped that he may be an amazing conversationalist or incredibly charismatic..

As the night progressed, he interrupted me mid-sentence and exclaimed, “Wow, your life is much more exciting than mine. I think that you’d be bored stupid by me.”

“So, is that what you really feel, or is code for how you REALLY feel?” I asked.

“Yeah, I’m not the best with kids, I’m sorry. Plus I am in recovery, I am an alcoholic, and I don’t think I would  be a very good person for you to associate with.”

“Okay…Well, I do appreciate your honesty, I really do. Can we at least be friends, do you think?”

He left his mobile number on the table. He also forgot to pay his bill.

(Oh, and his mobile number was a fake. I can’t believe I thanked him for his “honesty!”)

So, I decided a few months ago, “no more pre-organised dates.” I believe that the right man will come along, but ideally, I would prefer it to be sooner than later. I have worded up all my friends, and they know not to attempt anymore set-ups.

So now I just have to wait for the Universe to deliver a genuine, sincere, kid-friendly, stable, extroverted, intelligent man, who won’t run a mile at the thought of being with a woman who is very closely associated with a chonic condition.

I know you’re out there somewhere!!

 If I’m not concerned about being with a man who has a child with a medical condition, then there just HAS to be single fathers’ out there who are unphased by a treatable condition being part of the package.

P.S. I have been composing this post for a few days now.In an incredible twist of fate, there is an exciting conclusion to my tale of woe!

 Lance ALWAYS greets our postman. As soon as he hears his motorbike approaching, he’s outside giving the postie all his latest news.

Today, Lance bought in the mail. It was bound together with a rubber band. As I flicked through it, a piece of loose paper with the Australia Post letterhead fluttered to the floor.

It read:

“Hi, I’m Thomas, your postman. Would you care to have dinner sometime? I’d like to get to know you and your boy is welcome to come too. Speaking to him is the highlight of my day, he’s one amazing kid. He mentioned that he thinks your (sic) lonely. Well, so am I. I have always wanted to date a redhead.Lance assures me that you’ll love to come on an adventure with me. Here’s my number. Leave a message if I don’t answer.. I really hope that you’ll ring and that I haven’t been too forward.

Regards, Tom.

PS. I’m so glad Lance got his pump. It’s pretty flash! I hope this makes life easier for you both now. I’d like to learn about it, too. T.”

My face aches from smiling. I’m going to call him tonight.

He was certainly right about something-Lance IS one amazing kid. 

 

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“Mum,Will There Really Be A Cure?”

Lance is watching an episode of Ben 10 Alien Force at the moment. (Thanks so much for the recommendation, Brendon!!-We’re a bit behind the times Down Under, but thanks to handy services such as EBay and credit cards, I managed to get the series for Lance as a post-pump gift.)

I had to sneak away into my room and position myself on my bed (very Carrie Bradshaw like), and release  some pent up tears. I have had a lump in my throat and a quivery voice all day, and if there is one thing in my house that stops everything in its tracks, it’s the sound of my sobs. It distresses Lance so greatly.. Even our dog will plant his front paws on me and cock his head to the side. Therefore, I go to painstaking efforts to swallow back tears and dispense of them after bedtime.

Exhaustion and stress have been big issues lately. I have also had to come to terms with the fact that Lance can now express his feelings and emotions with such clarity and honesty, which is something that I am so thankful he has the ability to do. He will talk about his future, his birthday, schoolwork, family, and on the odd occasion, he will knock me into next week with a comment about his Diabetes.

This was today’s installment.

“Mum, I think my pump is so great. But, can you understand what it feels like to have a mechanical device attached to you ALL the time? It’s does get a little annoying.”

“Oh, I can completely understand that it’s gets a bit frustrating sometimes, because it’s so new and different to your old D Life. However, I’m really glad that you think it’s great. I can’t begin to tell you the difference it’s going to make to your health, and you already know that you don’t have barely any hypos anymore…”

“Yeah, but, what I want to know is WHEN are they going to give me my cure?”

(Silence for a few agonising moments..)

“Or, is it all a big trick? Like one of those things adults tell kids to make them believe everythings ok? I don’t know if I want to be a Youth Ambassador anymore, because I think I have realised that I am going to have diabetes forever, and I don’t think we should talk about the “C” word anymore. It’s a very unfunny joke. The Cure is a big joke.”

His azure blue eyes penetrated mine, searching for answers.

Firstly, I gave him a playful punch in the arm, accompanied with a dramatic gasp for effect.

He was only able to muster up a forced half-smile.

I leaned over and hugged him tight, and said quietly into his ear, ” ‘It’s’ so close, I know ‘it’s’ there, the scientists know what to do, we just have to be patient.”

He squeezed me tightly. He then pulled his head away, wiping his eyes on his shirt.

I had to use all my might to stop myself from breaking down at this point. This was probably the first time I have seen Lance shed tears about living with Diabetes, and maybe facing his future without The Cure.

 Hmm. Tears.

 I decided to do a fingerprick, just in case this was a hypo talking.

Nope, it was the real deal. He was perched on a highly desirable 7.8mmol/L. I looked down at his tubing. The insulin was steadily travelling into his site. I wanted to tell him the how lucky he was that his pump was going to change the way his life would pan out. However, the words, “lucky” and “diabetes” didn’t seem appropriate to use in the same sentence..not at the moment anyway.

I pulled out my laptop, and googled Lance’s full name. He has over a full page devoted to his JDRF Youth Ambassador work, his unwavering devotion to the Juvenile Diabetes Research Foundation, and his fundraising achievements from the age of five.

It just didn’t cut it.

“The ads on TV, about Type 2 Diabetes, People think it’s me.. It’s true, they don’t understand. “

“WELL, that’s why we HAVE to keep creating awareness about Type 1 Diabetes, sweetheart. You are the most powerful asset to organisations like JDRF. You can tell people what it’s like to live with Type 1 Diabetes for most of your life…”

“Yes, but they forget. They pretend to understand, but they don’t. It’s really good that I don’t have to have needles anymore, but people are always going to be afraid of me.”

At that moment, my already bludgeoned heart shattered into a million pieces.

Lance wasn’t crying, he was mad. He had hot tears bleeding down his cheeks. For two seconds, I hated Scott for leaving me to deal with situations like these by myself. (These feelings quickly dissipated. However, I felt so alone, and for one of the rare times of my life, I was totally speechless.)

We managed to cheer each other up by looking at some really funny “Funniest Home Video” style You Tube. We sat on the bed with a bowl of popcorn, howling with laughter at the antics of puppies and kittens. Good clean fun without a vial of insulin or a carb counter in sight.

Later this afternoon, I almost had a very nasty accident whilst grating cheese.

“Chris (an almost-7-year-old who lives two doors down from us) reckons that people will call the police now I have my pump.”

“Huh?”

“Well, he said it looks like I have a bomb strapped to me.”

I had to turn my head momentarily as I silently mouthed a selection of expletives. I looked at the clock, and decided that inappropriate or not, it was crucial to address this matter immediately. 

The Shirt Says It All. (Generally, I am very friendly and loving. Just don't mess with my kid!)

The Shirt Says It All.

 

So, we put on out uggs and our jackets, and marched two houses down the street. I politely knocked, even though the adrenalin pounding through my body would have easily allowed me to bash the door down like a carload of Feds.

Chris’s Mum and Chris answered the door.

I made it short and sweet. I let Chris know that I knew about his little revelation, and his mother gasped in shock when she found out the entire story. She sent him to his room, disgust and embarrassment evident in her tone. She got down to Lance’s level and gave him a big hug. He put his arms around her, too. Chris’s Mum apologised again, and I sent Lance home to open the door. I apologised for being a dobber, and for getting her kid into trouble.

However if my child has to suffer for just being himself, then I will do anything to amend his pain.

PEOPLE WITH TYPE 1 DIABETES HAVE NO SAY IN WHETHER THEY ARE GOING TO CONTRACT THE CONDITION OR NOT. THERE IS NOTHING THEY COULD HAVE DONE TO STOP THE AUTO-IMMUNE REVOLT.

When I got home, Lance was sitting on the floor, in Lego mode. I smiled apprehensively, as I was aware that I could have caused him to feel even more humiliated by my actions.

He beamed at me.

“You go, girl.”

Phew. He didn’t think I was tragic.

“Thanks Mum. It’s great to have a Mum who isn’t scared of people.. Anyway, my pump is great. Just in secret, I do feel really cool in public, knowing that I have a $7000 pocket, and that I have a pretend organ clipped onto my pants.”

And that was that.

 

***Later on***- We received a knock on the door just after dinner. Chris stood on the doorstep, with a Wiggles umbrella protecting him from the rain. His Dad introduced himself, and said that Chris had decided that it would be in his best interest to get the apology over and done with. He did apologise, and quite sincerely too. I couldn’t help but smile. Lance grabbed his hand and shook it, and told him that it was “all cool.”  They smiled awkwardly at each other.  I encouraged them to go home quickly, as the rain was getting louder and heavier. Two figures scurried out of our front gate. I quickly shut the door behind me, and sighed loudly, at nothing in particular.

Note: Lance has had a permament smile on his dial for the rest of the evening. 😉

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A Cruel, Insidious Battle To The End-A Diabetes-Related Tragedy.

Ever since Lance and I have lived in our neighbourhood, we have paid occasional visits to a Chinese Takeaway restaurant that is infamous for their traditional dishes made to order. They make a delectable chicken-and- vegetable-stirfry that we both love.

Lance, being the out and proud diabetic and media star, quickly introduced himself to the ladies who prepare the food.

Being the small world that it is, we discovered that these ladies, who are sisters, have a brother with Type 1 Diabetes.

Lance was mesmerised. He barraged them with questions.

“What sort of insulin does he take?”

“How many shots a day is he having?”

“Does he cheat and eat bad foods?”

“Can I visit him?”

These ladies were enchanted by such a little boy knowing so much about the condition, when he couldn’t even see over the countertop yet.

Over the years, we have bumped into each other.  Lance would immediately ask, “How’s your brother doing?”

(The Brother was 30 when diagnosed with Type 1 Diabetes, with no family history of Type 1 or 2. He had reacted terribly to the news that he would be on insulin for the rest of his life, and went on huge weekend benders that consisted of lots of beer, plenty of fast food, and the occasional insulin shot, when he felt bad enough to have one.)

The Sisters’ would reply, “Oh, he’s not too good at the moment, Lance. He hasn’t been looking after himself very well.”

Lance would nod his head, and remain silent. After a moment, he would say, “Well, make sure you say a big hello from me to him! And tell him to have an apple instead of a pie!”

Not long after, I managed to escape to the shops, Lance-free for 5 minutes. Again, I met one of the sisters. Her forehead crinkled and her eyes watered up when she saw me. I immediately feared the worst.

“Brian has lost his eyesight. He’s completely blind now. He’s having his right foot amputated next week, and the Blue Nurses are caring for him everyday, now.”

There we stood, two women, clutching hands. I was aware of the rest of the world busily moving forward around us.  I then thought of Brian, unable to see, unable to walk, moving backwards into a world of darkness and fear.

I squeezed her hands as tightly as I could, just in case I couldn’t deliver the heartbreak I felt with my voice. She tossed her head back, and blinked away her tears.

“Anyway, he still has us. We’ll never give up on him. We visit him everyday and read him the paper, and make sure he’s got all of his insulin and syringes.”

I remember going home and feeling nauseated by the news. This man was a total stranger, however, I was staggered by how deeply his horrific news had affected me.

Almost a year passed.

 I had finished work late, Lance was ravenous, so we both decided to visit The Sisters’ at the Chinese Restaurant. Lance and his dog stood outside the restaurant, whilst I collected our meals.

As usual, they both greeted me with a big smile. The waved to Lance, and commented on how tall and healthy he looked.

I paid them, and as I was handed my change, I asked the same question that Lance had been asking for years.

“How’s your brother doing?”

Silence.

I froze. I knew that silence.

I flung my head around to check Lance wasn’t watching. He was busy urging Chino to perform his reportoire of tricks.

I looked into their eyes, searching for answers.

“I’m sorry, love.  Brian passed away a day after New Years Day this year. He couldn’t handle being so dependent on everyone. He ended up in a wheelchair, and had toes on his other foot removed, and he was in terrible pain. He’s better off this way. He was so depressed and angry. You wouldn’t want your worst enemy to be in the state he was in.”

Tears streamed down my face. They urged me with their eyes not to break down.

“He’s in peace now, love. Now, don’t you worry about this happening to your little mate. He’s as safe as houses as long as he’s got you.”

The other sister, wiping away tears, staring straight ahead said, “The doctors’ all said that with the amount of insulin he gave himself that he would have gone very quickly and wouldn’t have suffered in the slightest.”

Suicide. Diabetes Related Suicide.

He was 41 years old.

Now you can walk, now you can see...

Now you can walk, now you can see...

This post is dedicated to his memory, and to The Sisters’, who fought all the way to the bittersweet end alongside him.

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BREAKING NEWS!!! WE ARE OFFICIALLY A NATION OF PUMPERS!

“After demands from parents, the government has agreed to subsidise the cost of insulin pumps for people aged under 18 with type 1 diabetes from November this year, at a cost of $5.5 million over four years.”

Balloons Always Make Me Smile

 

OUR FEDERAL BUDGET RESULTS WERE ANNOUNCED TODAY…..

I CAN’T BELIEVE WE DID IT!!!!

OUR CHILDREN WITH TYPE 1 DIABETES FINALLY HAVE A CHANCE TO LEAD AN INDEPENDENT LIFE, AND ENJOY GOOD HEALTH AGAIN!!!!!

WE COULDN’T AND WOULDN’T HAVE THIS RESULT WITHOUT THE POWERS THAT BE AT JDRF AUSTRALIA.

IF IT WASN’T 4.34am, I’D RING EVERY MOTHER OR FATHER WITH A CHILD WHO HAS DIABETES SO THAT WE CAN CELEBRATE!!!!

YOU BETTER KEEP YOUR WORD, KEVIN RUDD!!!! BUT FOR NOW-THANK GOD YOU ARE OUR PRIME MINISTER!!!!!!!!!!!!!!!!

CONGRATULATIONS, EVERYBODY!!!!!!!!

 

 

WOOOOOOOOOOOOOO HOOOOOOOOOOOOOOOO!!!

 

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My Baby Has Type 1 Diabetes. Welcome Home!!!

Lately, I have had a glut of phone calls from people who know a family that are dealing with Type 1 Diabetes diagnosis, and for some reason, they end up with my details.

JDRF Australia estimate that there are 5 new cases of Type 1 Diabetes diagnosed everyday.

In the past weeks, I have spoken to mothers who have not slept more than an hour for two weeks straight, fathers’ who have had to pick up the pieces and continue running the household, and big sisters who are suffering in school because they are falling asleep in class from lack of sleep.

When Diabetes invades, it gives no warning, and it’s just like everything you have been doing for the past years with your family has to stop, and a new plan and system has to be installed to accommodate everybody.

I wanted to make a list for people who have just had a young child diagnosed, and who have been too overwhelmed with hospitals, doctors, drips and diets to fully grasp what they are going to come home to. I have tried to include some of the more challenging situations as well, as it’s always reassuring to learn that someone else has been through it before you!

Here it is..my very extended version of how to deal with some feelings and situations that often go unspoken.

 

*Obviously, your child will have been very ill before you were told to rush to the hospital. You may have washing to catch up on, general cleaning.. It is a fantastic idea (rather than flowers or gifts) if your family can join together to hire a cleaner, so that you at least can exist in a clean environment, without the everyday burden of housework.

*When your child is finally discharged from the hospital, it is a very overwhelming experience to walk into your home-pre diabetes. Diabetes Educators and nurses are encouraged to have the family involved as much and as soon as possible with finger pricking, giving injections, and taking care of your child, just as you would as if you were at home. The constant visits from your Diabetes Care Team and family often distract you enough that you haven’t even come to terms with the fact that your child has been diagnosed with a chronic illness. As soon as you can, make an appointment with your GP, as you will no doubt be in severe shock, and only just beginning the grieving process. Your GP can offer you lists of Support Groups in your area, Diabetes Educators, Counsellors. If you have more than one child, it really is imperative that the main care giver (at least) is able to vent and learn some coping mechanisms with this new full time responsibility.

*All hospitals in Australia ensure that a newly diagnosed patient visits or contacts Diabetes Australia in their state, and becomes a member of the National Diabetes Services Scheme. The NDSS will provide huge discounts of your everyday requirements, such as test strips, ketone strips, and syringes or needle ends for insulin pens. Often, major diabetes drug companies will give families a glucometer at no charge-obviously, you weren’t budgeting for all of this new equipment. (We are so lucky living in Australia, test strips are often no more that $1 for a pack of 100, and syringes and needle ends are free to those with a NDSS card. You will receive a card whilst at Diabetes Australia, or with your order.) When you arrive back at the hospital with bags full of new and foreign items, a diabetes educator will sit down with you and run through how to load an lancet device, or how to get a glucometer ready and waiting whilst you get a sample of blood to test. Ask as many questions as you need to- that’s what they are there for.

*Most endocrinologists who are looking after your child’s insulin requirements will offer their mobile number or a private number, so that you can administer insulin doses yourself, whilst still knowing that your child will most likely be safe under the endocrinologist’s orders. NEVER FEEL AFRAID OR LIKE YOU ARE GOING TO WAKE UP THE DOCTOR: the endos often take it in turns week by week to answer the phone-they are well versed and non plussed regarding a panicked query at 2am with a 2.3mmol/L reading. It is much better to call the doctor, than to rush back to the to the hospital and put your child (and you) through more trauma.

* Your endocrinologist will be able to fill out a form for you called a Treating Doctor’s Report. You will have to fill in one too, and upon returning them to Centrelink, you are entitled to the Carer’s Allowance, which assists people with high maintenance Chronic illnesses-like Type 1 Diabetes- with medications, healthier choices at the supermarket, and emergency after-hour doctor fees.

*Were you not told about about a product called GLUCAGON whilst in hospital? If the answer is no, make an appointment the very next day so that you can get a script from your doctor. Most children are in the Honeymoon Period when they are diagnosed, so the risk of a severe hypoglycaemic attack is quite rare. However, they do happen, and the Honeymoon Period will eventually pass-whether it be days or months after commencing Insulin Therapy. You need to ensure that you have the “orange plastic box” with a prefilled syringe of sterile water and a vial of powder inside. There are clear and concise instructions inside the lid of the box, and also paperwork with detailed information included in the box. You will need to have this product with you, wherever you go, or somewhere safe and accessible in the house. IT HAS SAVED MY SON’S LIFE ON MORE THAN ONE OCCASION.

*Store all of your insulin away in the fridge as soon as possible. The vials or pens that you will be using on a daily basis should live in a cool area, preferably inside a dark coloured, plastic snaplock box. Find a good place where every member of the family can reach the insulin,glucometer, test strips and lancets, and it’s really helpful to keep it all together in one larger clear box with a lid. Insulin not being stored in the fridge has an effective life of 30 days. Any longer, and it is very obvious that the insulin has lost its strength, as you will have high numbers bouncing all over the place.

*You will need to learn to travel everywhere with a hypokit, either in a backpack, or in the case of a Mum with a young baby, you will need a huge nappybag with lots of zips and pockets. A hypokit should contain: A Glucagon Kit, ample jellybabies or jellybeans, fruit juice in a box with a bendy straw, some plain biscuits and muesli bars to give your child after you have treated their hypo, a sachet of sugar, honey and jam, (in case you have to rub into the cheeks of a baby who is hypo and screaming,) an identification card with your child’s photo and name and your contact details, clearly stating that the child has TYPE 1 DIABETES. Your endo, GP, educator and spouses details are handy to have speed-dialled into your mobile phone in emergencies.

* You will have to have hypokits around the home, too. Even if it’s a jar of jellybabies on top of the pantry, or a shelf in the pantry devoted to treating low blood sugar, that everybody in the household knows is exclusively for hypoglycaemic emergencies.

* You will need to find a suitable bracelet or necklace and get your child’s name, contacts and condition engraved into it. There is a fantastic Australian organisation called diabetes-ezy who have really modern, funky designs,(especially for young boys!!) rather than the clunky, unflattering Medic Alert handcuffs of ten years ago.

* When your child is first diagnosed, and commences insulin therapy, it is a really, horrible and stressful time, as blood sugar levels can fluctuate from 2mmol/L to 30mmol/L within an hour-even when little food is consumed. It’s a lifesaver to buy a cheap exercise book, and make notes about what was happening when a hypo/hyper occurred, if there was any outside stress, illness, excess energy expenditure, too many carbohydrates or too much/not enough insulin given. Eventually, you can start to piece together the puzzle and work out the warning signs of a potential emergency, and learn about your child and their Diabetes. (It does seem impossible at first, but speaking from the hugest Doubting Thomas there is, eventually,a bright, shiny lightbulb will appear above your head.)

* It is particularly annoying having to write down every finger prick result. A lot of logbooks designed for recording blood sugar readings never have enough room, and end up in a huge, confusing mess.  Again, an exercise book with a pen attached is initially handy to record the number on, then, at the end of the day, you can record ALL of your child’s results into a program such as www.sugarstats.com . You can then print out the results every 3 months to give to your endo.

* There is no denying it..Diabetes causes strain or stress even in the strongest of relationships/marriages. Don’t let Diabetes take over the family..it is so easy to say this now of course, but back when Lance was diagnosed, all I did was watch him breathe, read every book from the library about Diabetes, collate numbers and averages for the week, sit in bewilderment asking myself over and over again why this could have happened….I can see myself cramming as much information as I could into my head, and my marriage slipping away everyday without me even noticing. Find time to talk to one another, even if you are so exhausted that you can barely think, even 15 minutes of strictly non-diabetes talk can do wonders. It’s still important for your partner to feel as though he/she means exactly the same to you before the diagnosis. If anything, they are more important now than ever before! It’s just so incredibly important to TALK.( And drop the D word for a few minutes each day.)

* It’s vital that if your child needs to see an emergency doctor/pharmacy/dentist that they are informed promptly about your child’s condition. It basically has to sound like this. “Hi, this is my son, he is 7 and he has had Type 1 Diabetes for 5-and-a-half-years. He has regular insulin injections.”

* I have always made people very aware of Lance’s condition. I feel that no matter what age of the child, that it is really important that people know that your child has diabetes. Your child will feed off your confidence, too. (It’s almost at the point where I think Lance is proud of his Diabetes, as he will often engage in conversation with complete strangers and tell them about his adventures living with the Beast.) In older children, who remember a world without Diabetes, it can be more difficult, but in all seriousness, you are protecting your child by educating them to be proud and say “I have Type 1 Diabetes.” It could even one day save their life.

* Many parents ask me, ” I am never going to have my life back again, am I? or “When will I start to accept that this isn’t going to go away?” The good news is that you will most certainly have your life back again. It is often helpful to look at Type 1 Diabetes as a new lifestyle, more than a potentially life-threatening chronic condition. You do what you always did before the diagnosis, and ensure that your child receives their snacks, meals, insulin, exercise-along with lots of love, hugs and Mum/Dad-time. Naturally, your garden may have a few more weeds, or you mightn’t have your floor mopped until it sparkles everyday, but you do what is important first, and ensure that your family realises that they have extra responsibilities now. The other question is a tricky one. Recently, after almost 6 years of living this regimented life, I got really angry, and I was furious that I wasn’t “allowed” to have a minute away from Diabetes. There is no holiday. There is no weekend off. Diabetes Burnout is totally normal and very common, and can re-occur at any stage of being a carer. You aren’t a bad parent for wanting you old life back. You aren’t a weak person for feeling guilty that your child has your genes. You aren’t a terrible person for wanting to scream everytime you get a horrorshow reading on the glucometer. However, after a while, when levels start to become more regular, and life begins to develop a familiar pattern again, the hypos will settle down, and the nasty surprises become a rarity, you can suddenly recognise that “WOW! I have some control back!” Unfortunately, it does take time, and it takes a lot of work. With support, and there is SO much available, you can get through the sticky patches and get back on track again.

* Your child may be very anxious about resuming school, after being diagnosed with Type 1 Diabetes. Ask your paediatrician if he/she will come along to your child’s class,(most are very obliging,) and explain how sick your child was, and give an age-appropriate explanation of what Diabetes is. They will make sure that the teacher is thoroughly aware of looking out for symptoms of hyperglycaemia or hypoglycaemia-as will you! Parents often fret more than than the child about returning to school with Diabetes! In fact, many children are very interested to learn about Diabetes or witness a hypo or a fingerprick! A child with Diabetes almost receives hero status for being so brave to have to stick needles into themselves all day long. It is a responsible thing to do to write a letter to the parents of your child’s classmates, and really drive home the point that “Lance had no control over developing diabetes, in fact there was nothing anybody could do to stop it from occurring.” At 5 years of age, Lance was the unfortunate victim of being the only child in his preschool class to be un-invited to his best friends birthday party. When confronted, the parents admitted that they were too wary to ask me about what to do about cake, soft drinks etc, or if the party was ruined should an ambulance be called. Inform parents that you are going to be with your child at events such as birthdays,sports days, get-togethers,  and that you will be constantly monitoring their levels-insulin-activity ratio. A birthday is a reason to get down and funky with some serious birthday cake; there is NO reason for your child to miss out. Chances are that they have been so busy enjoying themselves that they actually needed some carbohydrates anyway, and even if they are at the higher end of “normal,” I can assure you they will not mind in the least at receiving a unit or two extra of insulin!

* It’s a positive move to use words and phrases like..”Lance had a hypo today, didn’t you sweetheart? We worked as a team to get you feeling well quickly though, and we had you safe again very quickly.” rather than “Oh God..Lance had a serious hypoglycaemic attack-it was a really bad episode.” Same deal applies for “Lance is a little high today, we’ll just have to keep a very close eye on him today, lots of water and maybe some jumps on the trampoline, buddy?” rather than “Get the ketone sticks, get him to pee on a stick everytime he goes to the toilet, his blood sugar is through the roof! This has been a really bad hyper-I wonder what he/we did wrong?” Kids actually do panic when they hear their parents speak even in hushed tones about serious issues. Stress is only going to accentuate the situation. Try to remain as calm as you can and re-inforce that your child is going to be fine. Let them know that you have everything needed to get their blood sugar level back to a safe range again, and that they just have to take it easy and relax. “Your level is bad/good” should be replaced with “Your level is high/normal/low.”

* The best thing that ever happened out of Lance’s diagnosis was discovering the amazing, inspirational team of people who devote their lives to working for the Juvenile Diabetes Research Foundation. (JDRF Australia.) Lance has had so many incredible experiences as a result of being a Youth Ambassador. He has met with politicians, and even travelled to Parliament House in Canberra. In fact, after this Jelly Baby Month, Lance and I have raised $6000-funds that go directly towards finding a cure. JDRF have a fantastic website, and bi monthly magazines that come out with the latest news regarding the hunt for a cure. Lance has featured in national and international publications, and he has become a well known face in our city. JDRF provide kids with Type 1 Diabetes with the tools to become powerful public speakers, they have enhanced confidence and strive for the best life they can live. Contacting this organisation is possibly the very best thing you can do for your child. It costs very little to become a member, and the benefits received are priceless.

* This is still an issue that I have great problems dealing with. For the first 5 years after diagnosis, I had huge anxiety attacks about leaving Lance with someone who doesn’t have “the trained eye.” By joining a local support group, you are going to meet other parents who know your situation only too well. Often, if it is a couple’s wedding anniversary or there is another important event that is not child friendly on the calendar, other parents will be only too happy to watch your child for a few hours. Of course you are going to be a nervous wreck, and be sneaking off to make check-up calls, but at least you made it out the door without a glucometer in your handbag! Often a family member who has gathered the major concepts of the too low-give sugar, too high-give water and “call me ASAP!” are great standbys also. The first time I left Lance with others, I had to end up coming home, because I was so distressed and distracted, but I have since learnt that he would be horrified to see me bursting through the door if he knew I was supposed to be out enjoying myself with friends!

Also, words like “amputation, kidney failure, heart disease, blindness or coma” should definitely not be used in front of your young child as examples to explain the serious nature Type 1 Diabetes can be to those who aren’t “in the know.” Kids with Type 1 Diabetes often lose a big part of their childhood from going to appointments, having blood taken from them regularly, dealing with sick days, missing out on camps, not having a sleepover without you on the sofa bed in another bedroom, sitting out a soccer game because they are low… They really don’t need to know about any of these terms until they stumble across it themselves. They have quite enough to deal with as it is.

* There are times when your child is sick, or very vulnerable, and you mind trails off, wondering if or when complications are going to set in. A nurse told me only 24 hours after knowing that my son had Type 1 Diabetes, that at least I could be assured that I would have a “good 15 years left with him.” I returned to his cot and cried and sobbed, envisioning losing my son at 15 years of age. When the head nurse hurriedly appeared after learning that there was a mother in great distress, I was so paranoid and confused that I actually made her show me written evidence to prove that a child with Type 1 Diabetes can have a long, happy and adventurous life. I can understand now, that even in the six years since Lance was diagnosed, that there has been SO much progress made- there was a time where maybe that nurse was told to give parents of newly diagnosed babies such a ghastly “timeframe”. Nevertheless, I was informed the next day by the Head Nurse that she had been given a crash course of Type 1 Diabetes for the 21st Century!!!

*Whilst in hospital, most Diabetes Educators or nurses will ensure that you speak with a Dietician. Sometime before you arrive home, you are going to have to get someone to go to the supermarket and buy essentials. You will learn why carbohydrates will become your child’s new best friend, and all about the Glycemic Index. It won’t take long before you know what works well for your child and what to avoid. Some kids have huge fluctuations if they drink cow’s milk. Lance can eat 5 mandarins and his blood sugar will not budge. A perfect example of how each child and each case of Diabetes is different.

*I am often asked what changes I have had to make to Lance’s diet since he was diagnosed. As an example, (and as as he has become a robust, ravenous 7-and-a-half year old, who is going through a MAJOR growth spurt,) I have listed what he has eaten today.

A nutritious example of a diet complete with calcium, 2 pieces of fruit, 5 servings of vegetables, and plenty of wholegrains for Lance would be:

Breakfast (after finger prick and insulin dose)

A serve of rolled oats (oatmeal for our American friends), a watered down glass of Apple Juice, and an apple cut into segments.(skin on.)

Morning Tea: 10 grapes, 2 plain biscuits and a tumbler of water

Lunch: 2 slices of grainy thick bread, with pizza vegetables and grated cheese and grilled with fresh herbs, a glass of milk.

Afternoon Tea: Slice of Gluten Free Apple and Walnut Tea Cake, glass of apple and pear juice.

Dinner: A serve of protein as big as the palm of my hand..(chicken breast, white fish, lean steak) accompanied by roasted starchy herbed vegetables eg potatoes, pumpkin, sweet potato, carrots, corn…and/or steamed green beans, broccoli. A Tub of yoghurt for dessert or home made Apple Crumble.

Supper: Water Crackers, cheese cubes, sultanas and 1 square of chocolate.

As you can see, there is a LOT of food consumed throughout the day! You will quickly learn that apple juice instead of orange juice will keep your child’s blood sugar from soaring to 12mmol/L and more likely keep it at 7/8 mmol/L and for a longer period of time. It’s really important for your child to go to bed with a blood sugar level of no lower than 7mmol/L. I am happy if Lance is 7.5mmol/L just before he closes his eyes. Night hypos or “Nypos” are frightening and horrible, not to mention dangerous and even life threatening. I have had people question giving Lance a square of chocolate before bed… Chocolate actually has a low to moderate count on the Glycemic Index, and it is great to be able to reward him for taking such good care of his body all day long! I can’t emphasise how important it is to give your child supper before bed, even if they did a great job with their evening meal.

* At my first formal Diabetes “class”, we were all told about how people with Diabetes will take longer to heal regarding skin abrasions/illnesses. Lance actually sneezed during that session. Everybody looked at me like I was supposed to instantly whip out disposable paper face masks… Sure enough, later that evening, Lance’s BSL was HI and his temperature was through the roof. He was coughing and crying and I sat down beside his cot and imagined that it was going to take 6 months for him to heal from a cold. He had fully recovered in 4 days. If he falls and grazes his hand, some extra care with some antiseptic lotion and he has gorgeous new pink skin a few days later. Diabetes is often about making smart(er) choices, and taking extra care. Most issues can be dealt with just like a person without Type 1 Diabetes if you use common sense and stay aware and alert.

*My hugest fear as a parent and carer of a child who has Type 1 Diabetes….Gastro Viruses. Ohhhh… I am already out in a cold sweat just thinking about it. Here’s the deal. If you child is a toddler or very young, and suddenly sends a huge cylinder of vomit flying through the air, everything is going to change from that moment on. You are going to have to have your glucometer strapped to you, and wait for whatever the last insulin dose you gave to wear off. Expect a hypo-strong words, I know, but it’s reality. After being sick, little kids, and sometimes even older children are not going to want anything going near their mouthes. Panadol, ice, glucose tablets will all get thrown back at you. They are naturally afraid of such a repugnant reaction to happen again-so they will not eat, even if you cry, beg, plead. If you are on an insulin pump, the Gastro Bug isn’t as scary. However, if you are doing it old school via insulin pens or syringes, you are going to have to contact a member of your Diabetes support network to help you work out how much insulin to give. Even though your child is sick and not eating, INSULIN MUST STILL BE GIVEN. You just have to give less of it, more frequently. If you start getting high readings, and your child is hot and crying, press a ketone strip into their nappy, or if they are old enough, explain how to use them. If you see colour changes in the ketone line, you need to go to hospital immediately. Diabetic Ketone Acidosis (DKA) is a life threatening illness that occurs when the body starts to self-cannibalize itself, as a result of not enough insulin. Your baby will have to go on a drip, to ensure that they do not dehydrate, and most kids recover pretty quickly when a vomiting retardant such as Maxolon is given through the drip. However, be prepared for psychological issues for a few days. Some kids are scared to eat again in fear of repeated episodes of vomiting. Start with baby steps-ice chips are great. If they are happy with those, you can move up to Lucozade ice chips. Then sips of lemonade, or a piece of toast…eventually they will gain their confidence back. My family are all nurses, and love to tell me about how their is wards full of people in hospital with stomach viruses that are unshakable for 2 weeks….I tried to be a superhero once, and sit through a week of crying, fingerpricking, irrational behaviour, triple the amount of washing to do, checking temperatures, giving hourly insulin…it’s just a nightmare. I know now, that if it’s going to happen, and there isn’t any signs of recovery within 24 hours..off to hospital we go.

*On that note, it is really great to teach your child to learn to become a vigilant hand-washer. Without encouraging obsessive compulsive behaviour, it’s good to get your child to wash their hands before they eat, have their own individual portions of food, wash their hands if they have patted the cat or the dog, and an antibacterial wipe over your child’s hands after being at the supermarket/doctor’s surgery/pharmacy can never hurt, either.

*Almost six years on, I have learnt so much..and I’m actually proud to say that I worked most of it out by myself. There is nothing more heartbreaking than jabbing a baby with needles, and sending yourself around the twist as you watch them breathe as they sleep. I got there. I have a child who stands almost up to my shoulders to prove it. He’s as strong as an ox and as healthy as a horse. Don’t forget to enjoy your baby, even if you have to deal with Type 1 Diabetes. They are only so little for such a short time..they are still perfect little blessings that need to be saturated with love and care. You will get there too! I already have a little man who smothers me with love and hugs. I guess, even throughout the thousands of needles and fingerpricks, he figured out that I love him unconditionally.

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

I was blessed to meet Liz Yarker by sheer accident just over a year ago. From our very first conversation, we immediately clicked. In fact, two hours later, I was so overwhelmed that I had just listened to a stranger describe my life as a carer of a person with Diabetes. We silently established a strong and incredible friendship that night.

We still have that special “chemistry”, Liz and I. We are both passionate Diabetes Advocates, and would go to the ends of the earth to make life easier for each other. Liz’s husband, and my dear friend James, suffers from an incredibly complex, rare, challenging and cruel endocrine condition, known as APECED. He has numerous life threatening conditions- Type 1 Diabetes and Addison’s Disease to name the worst of many. His life depends on constant insulin infusions, and consuming countless tablets a day. Liz has recently had to make the difficult decision to stop working, as James’s condition has become even more vulnerable, and without her constant care, she was petrified of coming home and finding him unconscious..or worse. She would often have to call work just as she was due to commence and inform them that James had suffered a severe hypoglycaemic attack and needed constant care for the rest of the day.

Fast foward to the past month…more health concerns have arisen. Liz and James are absolutely inspirational considering the devastating news that they were bludgeoned around the head with. Liz and I are both young women, who have bright futures ahead of us. However, it has been only recently that we realised that we are very much trapped…alone..and isolated. (Liz lives at the bottom of the Southern Henisphere in Tasmania, whilst I am residing near Brisbane. We rely heavily on MSN Messenger to communicate!) We compiled these questions together, and answered them individually. Being a carer of a 24 year old man, or in my case, a seven year old boy may sound like a slight inconvenience. This interview has been compiled and published to crack that myth wide open, and so that others’ can get an insight into what we do to on a daily basis to keep our loved ones’ alive.

Lizzie, describe yourself in five words..
Impatient, friendly, reliable, loving and caring

How has being a carer for James changed who you are, and where you thought you would be as a 26 year old woman?
I feel like I am more of a nag than I would like to be. I thought that at 26 I would be working full time as an Occupational Therapist. I recently got approved for the carers pension and I was so excited! I never thought I’d be so excited to be on a pension.

Do you feel that people who aquire Diabetes at a stage of life where they don’t need full time care are aware of what goes into caring for James?
I don’t think many people at all are aware of the care I provide.

How difficult is it for you to have time that is specifically set out for YOU?

Almost impossible. I don’t really have any time for myself at all anymore. Whenever I am doing anything part of my brain is thinking about where James is, what he is doing, if I can hear him – and if I can’t is it because he is just being quiet or because he is unconscious.

Do you feel naked without a glucometer in your handbag? Yes! My handbag has at least quadrupled in size lately. I never go anywhere without a glucometer, glucagon, solu-cortef, a can of drink and a few muesli bars.

Do you think that if a group of twenty people of various ages and backgrounds 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 carers payment?

Yes. In my experience most people who have any knowledge of diabetes think that it’s a simple matter of changing your diet, having a tablet, or at worst injecting some insulin and you are ‘fixed’.

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 catagorizing it as ‘severe’ and their blood sugar level reading was 5mmol/L, do you feel like you are talking about the same condition?
It is very frustrating! I think the thing that annoys me the most is that it makes me so jealous! I would love to be able to complain about a severe hypo of 4 or 5!

How do you feel when you receive almost no support from diabetes specialists? I don’t expect support from diabetes specialists, I feel that they don’t really know what it is like to live with diabetes as another member of the family.

Would you justify that the following statement is correct? James’s diabetes as a whole is almost like a fingerprint-in other words, no two cases are the same?

It is correct.

What do you hope that the future holds for you and James? I hope that we can both get back to work. It’s probably an unrealistic hope but it’s still my hope.

If you were not on alert continuously, do you believe that James could get through the day without you? Yes and no. I reckon he could make it through one day – if he didn’t have a hypo or an Addisonian crisis, and he remembered to have his tablets. However, the chances of this happening is pretty slim so no.

Do you go through periods where you feel like you are totally overwhelmed with so much see-sawing and sleeplessness? Yes. I get frustrated and annoyed at APECED. I get cranky when I am sleep deprived and so that doesn’t help matters.

How does your role of caring impact on your role of being James’s wife? Caring comes first. When we are talking and something doesn’t make sense, I think about his level.

Can you go out by yourself without making contact with James to ensure that he is ok? No! I have to message him or ring him to make sure that he hasn’t gone to have a sleep and his level has dropped. When I was working I used to have my mobile on me all the time so that I could check in.

Do you have the ability to vent your frustrations and fears about living under such vulnerable circumstances? I vent to you, Katey, and to Dan. I sometimes vent to James – but that is hard and it is usually only when I am incredibly frustrated. It is hard to talk to James about my frustration and fear without him feeling like it is all his fault and I make sure he knows that it’s not him I am frustrated with.

Do you believe that a General Practitioner would have any idea about what your life is like as a carer for James? Our current GP does. He is really good and knows how much care James needs. Normally though I wouldn’t believe that a GP would know what I do. Considering they mostly have never heard of APECED, the wouldn’t know how much work it takes.

Do you feel like you have Type 1 Diabetes? Yes. I actually think it would be much easier for me to handle if I had it, rather than being a carer for someone with it.

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 James to pull through them? YES! I may not have physically felt a hypo but I know the symptoms, I have used glucagon, I know how to treat a hypo, how many carbs to give. I do the work to fix the hypo. I get hurt by comments made when James is hypo and then have to try and forget them because they aren’t ‘real’ comments, they are the comments of a sugar deprived brain.

Does anyone else with Diabetes have the right to make assumptions about how James is reacting to a hypo? No. No one with diabetes knows how anyone else with diabetes experiences the condition. They have more right than someone without diabetes, who has no real knowledge of it, but they still have no right. Did that make sence?

Do you have a instant kindredship with other carers of loved ones with Type 1 Diabetes? Not always… it depends on how diabetes affects their loved one. If they are the carer of a person who has ‘severe’ hypos of 4 – then I have little in common with them.

What about carers who call themselves Type 3 Diabetics? How do you feel about that? I don’t know anymore how I feel about type 3 diabetes. I feel like James’s diabetes is also my diabetes, so how could he have type 1, and I have type 3. It’s a clever name and does help to explain the extent that carers are affected by diabetes, but I think that it will add to the confusion over the types.

Do you feel that carers get enough support? No. I think that carers of people with severe physical disabilities get more support – with respite available to them, but people who care for people with diabetes don’t get enough support.

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? For sure. It is very traumatic to see your loved one unconscious – and to have to try and calmly deal with it is impossible. Knowing that each time we get into bed, I could wake up with James unconscious next to me, makes me never want to go to sleep.

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 James’s eyes to flicker open? I think they think about it, they are grateful for people who help them, but I don’t think they stop to think about the affect of their hypo on their loved ones. I don’t think that they CAN think about it – because I know if I was in their shoes I wouldn’t want to consider the impact of my condition on my loved ones. It is horrible that people need to go through hypos and experience the after effects of them, but carers go through a lot too. I am the one who gets hurt by comments made when hypo, I am the one who has to stick a huge needle into James’s leg, I need to put him into the recovery position, I have to watch to make sure he keeps breathing, I need to watch the clock to know when to ring an ambulance if the glucagon doesn’t work, I need to check James’s level every minute to see which direction it is going, I need to get the soft drink and straw and make sure James is able to drink it without choking on it. I am responsible for saving his life – and I am expected to do it calmly. While all this is happening James has no idea what is going on. His first idea that anything different has happened is when he wakes up and sees the glucagon box.

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 feel that my comments aren’t taken seriously and that I don’t know what I’m talking about – but I still make comments and compare situations.

Does the carer’s allowance seem paltry to you, considering how much of your day is devoted to caring for James? YES! Carers live off a wage that is $200 less than the federal minimum wage yet we work 24/7. When I was working I was getting paid more than I do now – and I was only working part-time!

Do you have anyone who could step into your shoes if a situation arose? Not in Tasmania. If anything major happened I know that my family and James’s would try to step into them – but so much has changed with his care lately.

Do you fear for your own health and safety, knowing how much James depends on you to survive? Yes. I worry about getting sick and having to go to hospital myself.

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 James? Well in this case I am lucky to live in Tasmania. Before I had to stop work I worked as an assistant nurse in a nursing home – a position which is referred to as a ‘carer’ here in Tasmania. So people assume that’s what I still do.

Despite your complete devotion and adoration of James, on your 21st birthday, what dreams and hopes did you have for yourself at this stage of your life? When I was 21, I was still studying Early Childhood Education so I guess I thought I would be working as a teacher in a long day care centre, and probably have a kid of my own by now as well. I definitely never thought I’d give up work at 26 to become a full time carer to my husband.

When James 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?

As James has a very rare and complicated condition, I actually prefer if they ask me what to do – because they mostly have no idea of what needs to be done! This is a bit distressing – but it is unrealistic to think that every doctor and every nurse would know about APECED considering its rarity. We haven’t been asked to monitor BSL’s but I do. I also usually have to remind the nurses to complete all the necessary observations which makes me worry about what happens when I go home.

Do carers have a light at the end of the tunnel to look forward to? Realistically probably not. I like to hope that there is, but for me my job will only end if someone discovers a cure for diabetes, Addison’s disease, hypoparathyroidism, and pernicious anaemia! Carers of children can hope that as the child grows up they will be able to take over more of their own care, or that they will find someone who loves them and will care for them. Other than that the only way a carer will stop caring is when the person they are caring for is no longer around – an outcome none of us want to think of.

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? No. And that is reflected by the state of carer payments.

Does the term “carer” equate to “unemployed” in the opinions of some?

Yes.

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? Most carers don’t choose to be carers. They have the job thrust upon them when something causes their loved one to require care. I think that the lack of choice, coupled with the restrictions imposed upon then as a result of caring, result in lower wellbeing. Carers are isolated, and live on a wage that is lower than the federal minimum wage, they work when they are sick, work overtime, and they feel guilty when they take time out for themselves.

When you describe yourself as a carer, have you had the experience where people assume that James is disabled or mentally retarded? As I mentioned earlier people in Tassie assume that I am a worker in a nursing home when I say I am a carer!

How much of your day is taken up by carer responsibilities? All of it. Even when I am doing other things I am thinking about James, what his level is, what he is doing, what he has eaten, why he is quiet, did he have his tablets?, when did I last put his eye drops in and therefore when is he due for more eye drops, did he bolus for the food he ate, is his infusion site working, when does that need changing again?

Do you think James is aware of how much stress, time and commitment is required to perform you daily duties? Yes he is. I try to make sure he knows… in a way that doesn’t make him feel bad about how much stress I feel.

Have you ever had someone flat out disagree with your knowledge of diabetes and how it affects James? Yes. Especially disagreeing with my knowledge. Being a carer in a nursing home was frustrating as the RNs had the final say and would question my ability to treat hypos in the elderly residents. I remember once being on nightshift and having to argue with the RN on duty to perform extra BSL checks overnight on a resident who had just started a new long acting insulin. She refused to believe that I knew anything about the insulin – even though she knew James has diabetes.

When you have concluded reading this interview, Liz has probably performed one of her many duties that so many take for granted. Her mind may be racing with thoughts of how the next hour will pan out. It’s NEVER ENDING. There are no holidays, no time off, no special privileges.. it’s a constant battle against the revolt in James’s body that causes these reactions to occur. At the age of 26, Lizzie is nothing short of a heroine that I have grown to admire and cherish.

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