A Lesson in Caring

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I wanted to talk to you all about the light-hearted melo-dromidies that are afflicting my life so far, but I’ve found a worrying trend of pluralistic ignorance on a terrible subject and I feel the need to point out the horrible facts to you all (the few readers I have anyway)

I want to talk to you about a disease, a disease so heartless that it attacks love itself.

A disease so viral that, if you are merely in the presence of a sufferer, you will feel it inside yourself; squirming at the back of your mind, waiting for its chance to afflict you and the people you love.

I won’t tell you what this disease is just yet – oh no - I want to shock you with a few facts first – catch your eye with the truth, so to speak.

• This disease will affect 1 in 3 people.
• There is a very good chance that, if this disease does not affect you directly, it will affect the person you love or respect the most.
• This disease is NOT limited to age and can affect people as young as 30: in fact, in America alone, the early onset of this disease affects 200,000 a year.
• 5.4 Million American & 750,000 British people are currently living with this disease with the numbers set to rise by 2021 to 1.7million British people & 10.77 million American people.
• This is the only disease that cannot be cured, slowed or even prevented.
• Deaths from other disease are lowering – this is the only disease that has a mortality rate that rises regardless of treatment provided.

Do I have your attention yet? No? More? Ok:

NOBODY CARES ABOUT IT:

• Whilst cancer research received £2482.4 million in the space of a year to aid research and treatment, this disease received £32.24 Million.

 So, let’s round this up:

• This disease WILL affect either yourself or somebody you know.
• This disease cannot be prevented once it starts.
• The leading causes of this disease are unknown.
• If you were ever to get this disease, you will die in the cruellest way possible.
• Hospital’s and hospice care homes are not equip to care for you should you ever get this disease – if you have nobody to look after you prior to getting this disease, you will probably be homeless and die alone.
• The Hospitals and Hospice care homes that can provide care are limited to across the world so, for every 1 person who gets a place there, 10 more will go without.

Shocked? Appalled? Good, you should be.

This disease is reliant only on time to manifest. This disease is called Alzheimer’s.

Yes, I heard the collective groans and the sounds of itching-clicker fingers scrabbling with their mice to click the back button – STOP RIGHT THERE AND READ ON!

I need you to hear me out here, because nobody – not even your own government – cares enough to do something about this. It is downright ignorance – and for some reason, that seems to be acceptable.

It is almost as is Alzheimer’s is the last great taboo – the “reward” for you get for growing old or the punishment you get for not taking better care of yourself as you age.

Look at the numbers above, donated by ordinary people – not by the government – there is a huge that isn’t being filled. Targets are not being met for this epidemic and epidemic it is - the 6^th leading cause of death.

Death by other disease’s have lessening mortality rates each year. Alzheimer’s continues to grow every year.

So what’s the big deal here? People get old – IM a good enough person to look after my loved ones should this ever happen - this won’t be a problem for me!

Ok. You have to spend every hour of every day with this person. As the disease progresses, so will their mental health decline. Some are delusional; some are violent due to the terrible confusion they suffer.

You will have to feed them.

You will have to clean and bathe them.

If you were to claim benefits for them, it would amount to the same as being paid for 10 hours a week at the current minimum wage. You will be expected to provide unpaid care to these people for 70+ hours a week. For this reason alone, a lot of people DO NOT claim benefits for providing care to a loved one with Alzheimer’s or Dementia, which actually SAVES the government more than £100 billion a year with the total number of carers a year providing 170 billion hours of unpaid care (in the USA alone)

This is a WORLDWIDE Epidemic that only a handful of people care about. A WORLDWIDE Epidemic that, for every hour you age, you are an hour closer to experiencing.

If you’re wondering effect this disease will have on you when you are lucky enough not to have it but somebody you love is: if you’re wondering how a disease confined to somebody else’s brain could possibly effect you then I defy you not to feel heartbroken when they look at you, lash out at you and become scared of you because they have no idea who you are.

Are you scared? You should be; you have a 1 in 3 chance is getting this horrible disease – you have a mother and a father? Two mothers? Two fathers?  A brother? Sister? Plural? Aunt? Uncle? Nephew? Neice? Grandparents?

This disease doesn’t discriminate.

Yet, nobody cares.

Change that fact. Research the numbers for yourself. Show no ignorance in the face of ignorance, by defiance in the will to change.

We can change this, but only when more people start to care.

What a Day

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Went to the hospital again today. I know, I havent really kept any of you informed about my... plight with my parents, but suffice to say, it has been a battle.

I am a carer for both of them. They are both elderly and have major phsyical disabilities and, until recently I have been focused more on myself and my rather annoying (and emo) battle with bi-polar disorder.

About a year ago, my dad hurt his foot which caught an infection. Being a diabetic, this didnt heal very well and his feet began to swell to the point where he had serious trouble walking. We got him a scooter, adjusted our lives a lot for him and made some sacrifices because, as it was explained to us, being a diabetic, the healing process for him would be a lot longer than average.

Up until four days ago, his foot had been swollen, red with a minor sore on his heel. We had nagged him to keep his feet elevated and we redressed the sore every other day. It had gotten to the point where he needed a nurse to visit every other day to keep a watch on it. It was taking too long to heal.

Yesterday, the nurse visited to check his foot and. . . she nearly fainted. The small sore had turned into a giant black mass and had spread up the side of his heel - within a day.

She explained to us that it had that part of his foot was seriously infected, that his flesh was necrotic and that he had to go to hospital right away.

We took him to hospital, explained the situation to them and they told us that, as he had a general health check at another hospital tomorrow (today) the best they could do is redress the wound and send him home - which they did.

Come 2pm this afternoon, we took him for his general health check - and guess where the doctors sent us as soon as they saw his foot!

BINGO! The emergency center!

They could not believe that he had been sent home with the bottom part of his foot rotting. When we got to the emergency center, they also could not believe it and they admitted him immediately for treatment!

I dont usually bang our national health service, I admire it a lot and know for a fact that if we had a privatized system like america, we'd be screwed! But this was an appalling let down for us.

The doctors explained to us that if the very strong anti-biotic's dont work, that if they cannot surgically remove the infection from the wound, it will turn gangrenous - if that happens, he will have to have his foot removed. If he does not, he will get septicemia and die.

The doctor's follying around with him yesterday have cost him an entire days worth of treatment.

The nurse that came to dress his wound is furious. She cannot understand why there is a fast-track service if they wouldnt admit them to hospital without question (For my american readers, a nurse's fast track service allows the patient to be admitted to hospital for treatment without initial evaluation - basicly, they dont test them to see whats wrong, they take the nurses word for it)

The doctors from the general health center are furious with him, they cannot understand why a patient with obvious signs of necrosis wasnt admitted and treated immediately.

We're furious at him for not taking our advice to take better care of himself. For not keeping his foot elevated. For not helping himself. For just sitting there with the hope and self-understanding that it will, eventually, get better.

Im also incredibly sad for him. My father - my dad - is in his 70's now. He has been married for 50 years and they have never slept in a separate bed. Now they're in two different parts of the country.

We had to leave him because visiting time was over - and I was releived because his foot was in such a terrible state - but he looked so lost. He has had the same daily routeine for 20 years and not once did he ever complain about the monotomy of it - but now he just looks... he looked like the little boy I see in his baby pictures. He looks so scared.

My heart is both furious with him and breaking for him at the same time.

My mother is pretending she will enjoy the uninterrupted sleep and the peace of him not being around (as they argue like cat and dog) but I can see it in her too. She looks lost without him.

I feel let down. By my father, by the health service - by myself, for not being stronger for him.

I now know what rotting flesh smells like - it is suprisingly, sickeningly-sweet.