Tracey James: Carer |
She refused, and then thought about it.
"Maybe I will," she said, "but I doubt that you'll publish it. I'll write it anyway – it'll be cathartic. You may not like it."
There were indeed things about it I did not like. I made a note on it.
You're right. In some ways, I do not want to publish this without some modifications, but I will do so, not a word changed. If I don't publish it as is, then my blog becomes a lie, and it would mean that how you feel is less to me than what I believe some people may think – of me as well. And because you mean everything to me, it would be dishonest not to. I love you.This is the posting probably every other carer in the country – maybe the world – would like to post, but for a number of reasons, never would. Here it is.
I have a super power.
I am an invisible woman.
Every week I get the handsome sum of $57.70 from the government for being a ‘Carer’.
Lord knows I don’t do it for the money. I also don’t do it because I live to serve, although there are people who seem to cast me in that role.
As a full-time Carer I have not been able to work for nearly four years and, golly gosh, I have no idea what sort of job may await me after being out of the work-force all these years, while saving the powers-that-be lots of cash in the process. I have two degrees and I do not consider myself a dummy but that is still a scary prospect.
The landlord, Coles and electricity company are not going to give two hoots that I have spent all these years doing as good a job as I can muster, trying to emulate Mother Teresa, giving it my best shot at curing the sick and attempting to be sweetness and light to everyone I meet.
That is not always particularly difficult. I don’t actually get to speak to many people in the flesh.
Did you know that when you sell something on the local buy, swap and sell site that a real flesh and blood person from the outside world actually comes to your house? If they are agreeable you might even get to have a little chatty poo with them for a few minutes. Amazing.
Virtually every single person who has come to our house to visit in the last four years has come to visit Denis...with me sort of tacked on. Yes, they are happy to see me too, or in some cases meet me for the first and probably only time.
But, they come for Denis (or themselves). Because he is dying.
I have often thought it is almost like only one person lives in this house. The patient is the primary consideration in all things and that is as it should be. But here’s the thing. They are not the only consideration, because there are also two other people who live here. It doesn’t often feel like that.
Imagine someone told you that as of today you were only able to leave the house maybe once a week and when you did, you were going to have time to go to Coles or the chemist. Or, on a very exciting day, both. Every other thing that you ever did and loved to do would stop. As of today. For years.
Don’t confuse this with simply not going out because you don’t feel like it, can’t afford it, having no one to go out with or nowhere to go. This is about not being able to simply walk around the block in case someone has a fall, needs the toilet commode, has a seizure, a stroke, a heart attack...
Imagine on your outing to Coles or the chemist that you bump into someone and they exclaim how it is years since they saw you and they ask all about Denis and how he is and then on parting call you Mandy because they have forgotten your name. Even though you have actually known them for years and longer than Denis ever did, and you spent weeks working with them on that routine you choreographed for them...
Imagine when someone you are currently friends with on Facebook looks blankly at you, even after you speak to them, because you are long, long forgotten in the mists of time and past days of social activity.
I have a super power. I am an invisible woman.
You can’t really imagine these things, no matter how much you think you can, and I don’t really expect you to be able to. None of this is me complaining. It is just how things are. It is almost like some sort of interesting social experiment. Except that the characters are real and the situation is dire.
There was this day.
We had been woken by Denis having a string of violent seizures. There is nothing to do while they are happening, but I always try to be there, do what little I can, be comforting and watch the clock in case the ambulance needs to be called. Afterwards, I organised Denis as I always did, got his breakfast, his medications, spent an hour helping him undress and shower and then dried him, had him dressed and sitting comfortably out in his study at his computer and hey presto...THE DOOR BELL RINGS.
So, I stopped everything and made the mandatory cups of tea and got the biscuits out for the unannounced, unexpected visitors and tried to be social while being extremely preoccupied by stupid things like knowing that if I didn’t get the washing on right now, before they left and Denis went back to bed (the laundry only accessible through the bedroom and ensuite) that I couldn’t do it today.
I had held my bladder for an hour after waking while attending to Denis. I was now sitting there in my pjs and dressing gown feeling dishevelled and self-conscious. It was lunchtime and I hadn’t had a moment for myself, to shower or dress or even have breakfast.
As the visitors were leaving they said all their lovely goodbyes to Denis then one turned to me while going out the door and said “And you...GET DRESSED!”
Injustice stings.
Patients are designated as people. People are designated as people. Carers are non-people.
It is totally acceptable, expected and even encouraged for a patient to:
Talk about themselves and their medical problems
Get stressed, emotional, fearful and therefore sometimes upset & irrational
Moan about daily stresses, big problems and smaller inconveniences
Be upset about loss of independence
As ‘a person’ it is totally acceptable for people to:
Talk about themselves and their medical problems
Get stressed, emotional, fearful and sometimes upset & irrational
Moan about daily stresses, big problems and smaller inconveniences
Be upset about loss of independence
I have found that it is totally socially unacceptable for a Carer to:
Talk about themselves & their medical problems (because their loved one is so much worse off)
Get stressed, emotional, fearful and sometimes upset & irrational (because their loved one is so much worse off)
Moan about daily stresses, big problems and smaller inconveniences (because their loved one is so much worse off)
Be upset about loss of independence (because their loved one is so much worse off)
As a non-person there is also the additional delight that it appears to be perfectly acceptable for people to burden me with absolutely anything at all. Being a Carer somehow gives people carte blanche to tell me about anything from their latest crisis and their inability to cope with something, to their medical woes. I think I could do up a medical file on practically every person I have spoken to in the last four years.
Sympathy. What a useless concept.
The other day I had run the gauntlet at Coles. By that I mean fending off the usual round of Denis questions from a number of well-meaning people, with time running short before the paid Home Care lady would expect to be leaving our house. That is emotionally tiring. You start to feel like a cracked record giving the same gloomy report over and over.
I got to the check-out and was asked again about Denis. This time I said something totally factual. I didn’t say it harshly or with any inference. I said “Still alive, still dying.” Now you may be as shocked as the cashier was but I’m taking that risk. She recoiled and exclaimed “You might try to be a bit more sympathetic!”
She’s right. I am not sympathetic. I did not sympathetically get up three times that night during a short night’s sleep and wash out the poo in the toilet commode and then sympathetically continue to wash it out nearly every hour the following day. Nor did I sympathetically keep emptying the urine bottle or wash the blood off the sheets from who knows what. I did not sympathetically clean the urine that missed its correct destination off the carpet and Christian and I did not lift Denis up off the floor after yet another fall, with any sort of sympathy. Nor did I do a million other little things during that particularly bad day for Denis out of sympathy.
I did it and continue to do it out of the utmost love and respect for Denis as my husband and as a person. I do it not because I am paid or because people think I should or simply expect me to. I do it because I actually genuinely care, in the very real and complete sense of that word.
One day I will get to be a person again too. In the meantime, I will be a Carer because it is a damn sight more effective than just feeling sorry for him.