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Monday, October 28, 2013

Sympathy, identity and other Carer stuff – Guest Posting

Tracey James: Carer
In a comment recently I suggested to Tracey that she ought to do a guest posting on what it was really like to be a 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.

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  1. Wow, what a hard hitting and emotional post! I have the utmost respect for your writing this Tracey and for your posting of it Dennis.

    It is unbelievably sad how people never seem to understand that it is not only the sick people suffering but their family and friends too. Your sacrifice to look after and care for your husband is so very admirable! True love. Your last paragraph was perfect.

    Continue doing what you do, so inspiring! And remember you have every right to also moan about your own problems - big or small- and to feel stressed out and emotional. We all do. Problems are all relative and I just wish more people would understand that!

    1. It is NOT a hard hitting and an emotional post. It is what happens. All Tracey has done is report what happens in being Carer. She has given you a report.
      I have been a Carer and it has happened in my life as well. That you Tracey for telling the world what a Carer's life is like. I quite because of burnout.

  2. Well, I was tearful on the way through, but cried at your last line "one day I will get to be a person too". It is not what you presently wish for, but that day will come, Tracey, and in the meantime all I can hope for you is that you stay strong in your love in an impossible situation.


  3. This is one of the best blog posts I have ever read. You express yourself beautifully and, though I have never met or, until now, known about either of you, I respect you both enormously. I can identify with some of your feelings as a mum of a toddler living far from home with a husband who works long hours. It can feel like you are everyone's last priority. I have found huge comfort in blogging - it is, as you say, very cathartic - plus I get a lot of support from people in similar situations. So I offer my support to you Tracey, my respect and my sympathy (if you'll accept it). You inspire me and I look forward to reading more of your articles.

  4. You are MORE than SuperWoman. It's the power of love. I can see you, thanks for sharing. xx

  5. I have just returned from helping nurse my gorgeous sister through the final stages of a GBM tumour. Unlike Denis, her disease was compressed into a few short months, rather than years. Being a carer means being there, and dealing with what happens when it happens. People would ask about a 'routine' -all you can be sure of is what happened yesterday. I have a dislocated elbow from trying to move her in bed, her husband has severe back problems from lifting her - yes minor 'in comparison' but painful. Hospice help always seemed to lag behind our home needs, but you do what you have to because you love and respect them. She drew comfort from having those that loved her care for her, even if we were amatuers who made mistakes. The loss of independence and dignity was very confronting, especially as it happened so quickly, and it was a small consulation that those who had shared the best with her in life were enduring the worst too. The hardest was not knowing what she needed or wanted after she lost speech and could only communicate by waving one hand around. A wave meant yes, a punch meant no. Those punches hurt more than anything we had ever inflicted on each other as kids.
    The words that Denis used the other day 'only those wearing the shoes know where they pinch' are just as applicable to the carer as the patient. Tracey, you are a strong and amazing person.

  6. These were my first responses to this writing:

    I cried with recognition.
    I don't think I've ever read, in my 18 years of being a Carer, a more important, more articulate, more truthful, more richly described sense of how it is to be in a Carer's skin. And I've read a bloody lot of 'em!
    You've nailed it, m'dear.
    All love to you, you astonishingly brilliant human being. . Love.
    And gratitude for writing these words."

    There is more...of course. There will always be more. And I intend to be sharing the "more" with you for the rest of my life.

  7. You are great and so is Denis. I am in awe

  8. Dying is not much fun. Neither is caring for a loved one who is suffering. And laying it all out for people to see as a reality, in the beautifully written and sincere way that you have been doing Denis, and that you, Tracey, have contributed to in so many ways, even, for example your wonderful photographs and now your own words of pain, make an enormous impression on us all.

    As one of the many who have visited Denis and who was warmly welcomed and had my visit facilitated by you, Tracey, I say a sincere thank you.

    My on going best wishes and admiration to both of you as you continue with you love, respect and caring for one another in these very hard times. Anne P.

  9. As the Mother of a carer, THIS carer, I feel the utmost compassion for Denis with what must be for him a feeling of absolute helplessness to change or stop any of this situation developing and progressing. For Tracey I feel absolute love and concern about her health and continuing ability to 'hold it all together'. And I feel useless in the face of this task, her task of 'being a carer’.
    Tracey, some people outside the situation may want to see displays of sympathy, but the person being cared for wants minimal 'that' and maximum LOVE of which every action you perform most competently is a manifestation.
    I feel for Christian who has this huge learning event at such a pivotal time in his life. Thank to all the powers that be that he is there to support emotionally, lift physically and dryly comment on things.
    Only today a friend asked me if Tracey is working and I realized how even caring intelligent people can be totally unaware of the realities unless they have experienced them first hand.
    What you have written should be printed out and handed to every carer, living this life. The care-giver paid the handsome indeed - sum of $57.70 a week. What is that supposed to cover do you think? You may feel invisible but the message in your writing shines like a beacon and should be seen by everyone, yes everyone.
    Thoughtless, blurted out comments sting, Injustice stings, and all I can offer is to say it mostly comes from people’s ignorance of what is really happening in the lives of people in the situation you and Den are in.
    You are not invisible to your family, or to so many others. I would be there if it were practical and I think of you constantly – big help!
    I love you. Beautiful soul, beautiful woman. <3

  10. Sincerely, thank you for all these wonderful comments. I don't feel like I deserve them because I have simply written what to me is factual. The one thing I will say, as Lena has mentioned, is that I could not be doing this without the support of Christian. He is THE person who has been here every single day, from day one from the age of 16. He hugs me every single day. A proper hug. He asks me, really asks me, how I am, every single day. He is the only person in the entire world who really 'knows' our situation and I can talk to him about anything. He is my Saviour.

  11. Tracey, I can't believe how people treat 'unpaid' carers. I hate to say this, but if you were a man you'd be a saint, inundated with casseroles and people to give you a break. Women are just supposed to do this stuff. My late partner was unwell for quite a long time, and I cared for her through various crises. Even when she was in hospital it was stressful, as I was working, so had to add an hour's visit to her at the end of each day, then drive home through heavy traffic which I could normally avoid. None of her/our friends ever offered to do anything, didn't even visit her on her prolonged hospital stays. When she died there was a huge funeral, then silence. I organised a get-together of friends about a month later, and I've pretty much never seen any of them since. Keep on doing what you're doing, it's the right thing to do, but it's bloody hard. You have friends and support online - stuff the rest of the world!

  12. Never mind, Mandy - you have a song by Barry Manilow, whereas Tracey only has a cyclone. kvd

  13. Tracey

    What you have said needs so much to be said. I am so grateful that you have not added the power of silence to invisibility - your super power. As a fellow (to Den) Recipient of Care, I know how much this all needs to be said. I hear Ros saying much of this but in private. You have "gone public"

    When Ros was working (she, like you, stopped work to Care) much of her time was with Carers and the sticky note on her monitor at work replayed a quote about "the psychological horror of being a Carer", a role that now pervades your and her life and, at a certain level, even if the whole world got with the plot and understood and acted in a carer-aware way, there is no answer. Love, as you emphasise, is the driver and all we can do, Recipient and Carer, is to struggle to keep finding that love. To externalise the evil, whatever it may be, that tries to grab the controls.

    What can we Recipients do? Not take the Carer for granted. Some can help to make possible (Den) a public voice. Always respite. Trying (but please not too hard - see my comment on the previous post) to do things ourselves. Watch out for disappearance of the Carer.

    What does the world do? Carers Australia needs a bomb up its bum to get beyond yoga and massage and into the minefields of grief, sympathy, exhaustion, disempowerment and guilt. NDIS?

    Ros and I will start our blog. It's you and me babe will focus on Carer/Recipient to about the extent that Den does on GBM. If Den had not done the right thing yesterday we would have invited you to guest-post. The invitation remains open.

    You two (three) are stars

    1. We, the Care Recipients, have a duty to care for our Carers in whatever way we can and it is very easy to say, ‘But what can we do?’ We have to show them in as many ways as we can that we love them and I fear that I don't do it often or well enough. I have a hundred excuses I can use but it is my shame that I feel bound to admit it here – there are always more ways I can do so.

      Thanks, Dave, there are very very few people who'll have a clue what an effort it would have taken for you to type that.


  14. You amaze me Tracey. What a wonderful strong lady you are, your honesty is admirable. I had never really thought too much about a carers life but your post has really opened my teary eyes. Best wishes to you both,

  15. Thank you so much for writing this post Tracey as it sums exactly how I feel at times... I wrote a post on my blog in April which is currently in the BTAA newsletter called What about the Carer?

    I am very fortunate as we are not anywhere near as far through this journey as you are and I find reading this blog both inspirational and comforting. Reading it gives me the belief that we will be ok when my husband is at the stage you are at.

    I totally appreciate what it feels like to be invisible but please know that when I read Denis' posts that I often thing of how the situation must be from your perspective.

    My best wishes to you both as you will never know how much your words have helped me.

  16. You are amazing Tracey. I have utmost respect for you. I'm so glad that you wrote that post.

  17. Thank you for writing this, and for posting it. I'll plead guilty to being fairly thoughtless about the lot of the carer. Hopefully that will change, in me and many, many others.

  18. Tracy
    I had to laugh when you talked about pyjamas at true. I am carer for my husband who was diagnosed with GBM Grade 4 Jan 2012.
    He too, is on the Avastin trail and obviously there are many similarities between our journeys. Keep strong, our good fortune is in the strength of our husbands.

  19. You mention Mother Theresa, whom I've never particularly admired. She chose her task. Yours chose you. It's a big difference. That's why I admire you more. How you haven't gone stark, staring, barking, moon-howling mad I'll never bloody know! I do know that nothing I can say can ease your pain or lessen your load. But you are not invisible to me, Tracey. Ever since I met you and saw how things were, you have been in my thoughts constantly; YOU, not just dear Denis, and though I can NEVER understand how you really feel I do realise how exhausted you must be in mind, body and spirit. Pyjamas at midday? I'm surprised you ever have time to get dressed at all! You seem to see yourself as stoic rather than heroic, doing what has to be done because what else CAN you do, and doing it sometimes, no doubt, through gritted teeth. But if I ever get famous enough (unlikely!) to be interviewed and I'm asked who is my favourite hero I shall reply without a moment's hesitation: "Tracey James"!!! Because if Denis is the waning moon around whom all things must of necessity revolve you, my dear, are the morning star!

  20. I am a Nurse Care Coordinator and work with patients and families affected by GBM and other brain tumours. Much of my day is spent talking with the carers about how they are coping with it all and helping them to find strategies to deal with the practical and emotional issues. People keep telling me I have a really tough job but really it is the carers and other family members who have the toughest job of all. Having to watch a loved one die, caring for their every physical and emotional need (particularly difficult with GBM and it's effects on personality, mood and ability to communicate and function physically), and all the time knowing that you will one day have to pick up the pieces of your life and get back to what others consider 'normal' must the be toughest job in the whole world. Hang in there.

  21. Tracey, you've said it so beautifully and so succinctly. You do this out of love. Those of us who haven't walked in your shoes simply cannot understand any of this. Many simply couldn't do what you do. Those of us who may have walked in similar shoes have perhaps experienced just a small part of it but STILL are unlikely to understand your particular situation.

    Every relationship is different, every illness is different, every palliative situation is different. Nobody can or should tell you what to do, how to feel, how to grieve or how to cope. The well intentioned words can seem as inane and ridiculous as the not so well intentioned words. We humans are pretty crap at preparing ourselves and supporting each other through death. It's still very much a taboo.

    I hope you write a book on palliative care one day. We need it.

  22. This raw and honest account of being a carer comes straight from the soul. I found it powerful and moving.


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