Wednesday, May 02, 2007

Advice please

We interrupt this 100-hour week (memo to my friends: I'm not dead -- yet -- and I need you to forgive me for not answering any of my emails for weeks and weeks) to send out a cry for help, precipitated by a sympathetic yet frustrated reading of this post by Lymphopo at As the Tumor Turns, formerly Liz/Grannyvibe, whose fortunes I have been following since before she was diagnosed with the aggressive Stage IV lymphoma which she seems, rather amazingly under the circs (or indeed any circs) to have beaten.

In this gruesomely funny post, Liz charts her meltdowns and the reasons therefor. It is, as her blog warns, not for the squeamish, nor yet for the faint of heart.

But here, on behalf of the more or less ongoingly well, is my question. I had my own long-drawn-out experience as an intermittent 'carer' last year and early this year, when my sister had a horrendous post-operative complication after surgery on her right hand. It involved acute chronic pain, a reasonably high level of impairment, serious work and financial worries and uncertainty, and a drawn-out series of treatments which were, if only for a few hours, worse than the condition, which is saying a great deal.

She suffered the tortures of the damned. She is my baby sister and my own empathetic, guilt-ridden, proxy suffering was quite bad enough to be going on with. I was the only person close to her who was in a position to do chauffeuse duty, home carer duty and so on, and I did, on and off for over a year.

She and I have sibling issues going back fifty years. We are very attached to and protective of each other, but if put in the same enclosure at a human zoo would tear each other to pieces within hours of our incarceration. Last time I was in Carer mode I was supposed to stay with her overnight after one of the ghastly treatments (think three injections deep into your neck, one after the other), but by about fifteen minutes after we got back to her place it took every ounce of willpower I had to stop myself storming out the door and going home.

So here's the question. What is a carer to do? What is the correct response of someone who's well to someone who's in a state of shocking pain and fear, and quite possibly gaga from their meds as well? How do you deal with emotional meltdowns, particularly (but not only) when they are directed straight at you? How do you manage your own vulnerability to attacks from someone you cannot possibly attack back? What are you supposed to say? What are you supposed to do?


Mindy said...

From what I have seen working with carers, suck it all up and try not to scream. Then when the opportunity arises have some respite by having someone else take them off your hands for a while (pun not intended).

I don't know, maybe write it all down in an angry letter and burn it, or rip it to shreds or something. Or maybe just tell her that she owes you big time, and leave her to wonder.

Zoe said...

Bite your tongue and vent later works for me with small children. In the meantime, you can console yourself with thoughts that you would handle things much better than she should the tables be turned. And that we'll all need our arses wiped one day.

cristy said...

Yes I am with Zoe - give yourself permission to really vent later to someone else (or even on paper). Currently I call Paul and vent to him. And, yes, definitely be sure to get some respite when it all gets too much.

steve said...

Be there and allow them to express whatever they want or need.

Stephanie Trigg said...

For me, the key phrase in your post is "Carer Mode". You don't think you're setting your own expectations of how you should behave, and feel, rather too high? You have to drive the car and stay overnight and feed the cat and all, but you don't have to feel like or behave like or look like the ministering Angel of the House to do so... Answering back - a little, in a controlle way - might actually restore a sense of normal sisterly relations, which might possible help her spiral down a bit. Yours very sincerely, Pollyanna.

Pavlov's Cat said...

Hello, dear Pollyanna -- hope you are home safely and the aching has been accounted for and the jetlag is easing.

'Answering back'? My baby sister? You are still jetlagged, aren't you. No, alas, the personality clashes at certain flashpoints are a big part of the problem. Answering the Leo Princess back is not an option, with or without meds.

Ampersand Duck said...

The problem is: can we be sure that we wouldn't be as bad if in as much pain? Actually, from the sounds of it, maybe the answer is yes, because most of this particular problem seems to be the sibling dynamic. I'd say Jahteh at Copperwitch would have a few things to say on this topic.

Anyhoo, I agree with Zoe, and I like Mindy's suggestion of the letter. Sounds like a short story as well... maybe that would be a cathartic outlet?

Pavlov's Cat said...

Yes. I don't blame her a bit (not for the pain part anyway). I'm sure I too would be hard to deal with, though I think not in the same way -- my memory of the last time I was seriously unwell was shrieking that I wanted people to leave me alone.

This episode is in the past, anyway, though the worst-case scenario is that there may be more of it. I was thinking about it more as a general question because of Liz's post about meltdowns, and it dawned on me that these days it's normal for people to receive back beloveds from hospitals when they're still heavily under the influence of drugs and still too gaga and damaged to do anything at all for themselves.

dogpossum said...

Sounds like my experiences caring for my mother a couple of years ago.
It was so difficult to at once be so worried and frightened for her, but also to want to strangle her.
I think it's especially hard when you're not in your home town, so you don't have your stuffs around you, or your friends to rescue you.

I found that I had to go out (I'd sub off with a family friend) and be with some of my dancer friends. I also met a lot of Antarcticans (this was in Hobart), and their experiences living in burrows in the snow with half-mad, alcohol-ridden boffins and tradies sounded strangely familiar...

But it was a difficult time. The internet: she is your friend.

Pavlov's Cat said...

'It was so difficult to at once be so worried and frightened for her, but also to want to strangle her.'

That's it exactly.

I was also very lucky in that my oldest friend, who lives here in Adders, is someone I've known since we were 13 -- so she knows the sister in question and is extremely familiar with my sibling dynamics, as I am with hers, over most of a lifetime. Having her around to vent to really was a huge help, because she knew exactly where I was coming from.

Meredith said...

I'm with Stephanie on this one - talk to her & tell her how she affects you. I've been rotten sick & still not turned nasty so I have little sympathy for her. Bad behaviour is bad behaviour.

shula said...

An excellent question.

To which I have no answer.

I can't answer my baby sister back, either, and she can be the most amazing bitch.

I usually throw a sacroiliac, instead, and experience 5 weeks of excruciating pain, instead.

Not a tactic I would recommend.

shula said...

Please scratch the second 'instead'.

Thank you.

JahTeh said...

Coming to this late, Duckie is right but I'm in the position of being parent to a parent who hasn't yet given up being the parent. I know she's going downhill rapidly and I know the best option is to agree with everything because she'll forget about it tomorrow but I can't forget my personality which is highly combustible in calm times. She's going in for respite care for two weeks which is great but already I'm dreading the return home. Breathe, calm, live in the now and I'm trying to diet ffs.