Thursday, November 17, 2011

Pain day lost

Pain day, day lost. I couldn’t sleep much, and couldn’t use my arms. The last pain pills ran out. The last two hours was just waiting, waiting. You didn’t like the reception, or didn’t realize that even light hurt, and sound hurt like someone punching my kidney. You said before sleep you did know those both hurt, but you walked out anyway, to the far end of the apartment. And me, still without able to use my arms.

The first thirty or forty minutes I thought you might come back, and resisted, until I started crying. I don’t know how long I wailed, but I knew you went to the far end of the apartment so as not to hear it. I called for help and even after the care worker came, they never came to the calls for help, or to check on me. You had them busy following orders.

I don’t know how, after 9 hours of being awake and five of awake, helpless and then knowing you choose not to do anything, your complaints on being tired and how I should go, go somewhere else to ‘amuse myself, while I sleep’ could hurt more than the physical pain. Or how many times the few people or workers I see, those who don’t even know the names of the pain medications I used, because they don’t have a single other client whose meds are so high complain about some pain, after leaving me waiting, or after dismissing my pain. It is hypocrisy to ask me to care about you, just because you know I will, or complain, and then ‘forget’ pain meds for me, or caring what happens to me at all.

The one common feature of care workers and medical staff is how callous they have universally become. It isn’t that they can’t bond with people, it is that they don’t want to bond with the likes of us, as there is no upside for them; just learn to take the money and go.

All 50 lots are up on ebay and
here, and if you know someplace near Victoria with a set of used tires with good tread, that is what much will go towards.


Displaced said...

Hi Elizabeth,
I so feel for you in this situation... You know the carers can't let themselves relate... they would not be able to survive and go on doing the job if they let themselves really get involved in every case, every heart, every soul...
We are here from a long way away

Baba Yaga said...

Beth, if ever there are times words seem inadequate... Pain is bad enough - an exponent of 'enough', at the levels you experience -, without being compounded.

Was it a temporary shortage of medication, and do you now have it?

I think you're right about the 'not wanting to bond with the likes of us' (not that one has to 'bond' merely to respect a person). Then, too, there's a prevailing attitude that certain classes of patient are always to be suspected of trying to exploit them: psychiatric patients and people on heavy-duty pain medication seem to be the prime suspects.

Displaced, I disagree with what I read you as saying - it's possible I'm partly misreading. There's a very big difference between 'relating' enough to treat someone as at least human, and being overwhelmed by the other's pain. It is not possible to 'care' unless you relate somewhat.

Frankly, I believe every last instance of abuse arises from a failure to relate; to see that "this person is as real as I". (Temporary failures sometimes as much as more permanent ones.)

It happens that people *are* overwhelmed by others' pain. All of us have breaking points, and points where our own pain is too close to the surface to allow us to respond quite as adults. Walking away may be necessary, if one can't relieve it or comfort it or hold fast in the face of it.

But only some people lash out at the person whose pain overwhelms them, utter cruel words, *prevent others from helping*. Frankly, RUN and leave the person alone, if you can't stay and control yourself.

(When to remove oneself is not something most people are taught. And society sometimes suggests that staying past the point where callousness emerges is saintly, whereas walking away can only be venial, rather than the least worst option available in the moment.)

JaneB said...

Oh Elizabeth, I'm so sorry.

As Baba Yaga said, is this a temporary lack (or you;d used your 'quota') or a glitch someone can help with?

Balancing caring enough to work well and yet NOT caring enough to stay sane and to do the job... it's hard enough as an academic with students to care for, no idea how medical people do it, but I wish they could! Or would tip towards caring too much because you deserve to be cared about and loved.

Thinking of you

Lorna, Bob and Liam said...

Beth, it's really a struggle to even know what to say anymore. We can't alleviate your physical pain; we can't make your health workers more competent and compassionate; we can't help Linda's stress by getting her better employment; we can't stop the progression of your dying.

God, all we can do is witness and love. Which sounds nice and squishy but doesn't really help in any tangible way.

Does it? Is there something we're all missing that we can give to you? Or is listening, caring, crying, laughing (you are still wickedly funny when you have the energy), learning, is it enough? Or at least, does it help at all?

Even if it doesn't... we'll still listen, and love. We can witness your living, and your dying. It may not be enough, it may not be much, but it is what we can do.

Much love,

Lorna, Bob and Liam

Elizabeth McClung said...

I have had workers who worked caregiving for 21 years, I have workers who only do overnighters and yet of all, none are familiar with Diliadid (a common end stage pain killer, a drug mentioned as Dawn bravely writes about concerning her brothers death). Nor Fentanyl, nor tramadol.

Tramadol costs, for me, between $60-100 a month. We can't afford it, so I am not on it (it releases pain killer over 24 hours).

Lorna, Liam, and Bob: as to what to say, I try to simply report, as capable as I can in the haze that pain can make, when able, what occurs, so that you may know what your own future holds.

If you wish me to make concrete suggestions, I can. If you know of a scrapyard that sells used tires, that would be a concrete help. If you wish to volunteer to caregive for even a few hours to give Linda competentant respite, that would be a concrete and much appreciated help.

I think perhaps many miss that I am you. Your chances of developing a serious illness in your family is significant over the next 10 or 20 years. You can read Brainhell's blog, and it reads the same as mine. If you don't want to emphasize to the point where you experience as I experience, or scream until your voice is gone, and people stand by and watch, then I recommend working on changing the system. Or accepting that this and more await someone you love, or yourself.

I write what I experience, becuase few else seem to. And because I think we should know the cost of all of our 'successes', that someone with chronic pain or degenerative pain's day out is always a success because this is often also a part.

Elizabeth McClung said...

Displaced: It is a hard situation. In the end stage now, caregivers desire the comfort of 'control' and 'routine', while for me, I would like ME, and myself to come first. I did not know why my arms and body were not working, perhaps the pain took up all the pathway signals in the spine. But the caregivers wanted ME to come up with a plan, and grew frustrated and then angry when I didn't. 'this isn't how it is supposed to be' is how they feel and say. Amen! But when 'tasks' is how care is done, personalizing and responding to the clients needs first and always, that is a rarity. I have had workers, two over the last three years who have done that, who need no instructions on how to care for me. One stood in front of EMT's, putting her hand over mine while telling them, "No, no needles" as that fear might cause a seizure, another told an authority figure that she was not hired to obey him, but to take care of me, and if he couldn't help in that, he should leave. But yes, those type of carers are rare. I do recommend reading BrainHell, as the comments on 'Hyde' - aka Jekkle and Hyde are oddly similar. There is a callousness which states that my pain, because I have it always, is nothing, so thus, when they have a headache, they can lash out, but I am always to be meek and mild.

Change the system. I am trying to.

Baba Yaga: I don't know, the day after exercise is always painful but this act meant I had six hours of constant pain, with nothing but a ceiling to look at, and no relief. I have reduced a medicine I can no longer afford.

I have found in service, whether it is a library, a DVD rental store, or a cinema - either the people are individuals, and a person looks to see how they can help, even if it means they are a minute or two late to lunch or leaving. Or they see them all as annoyances, and cattle, and wish them all gone. Caregiving, in many ways is a service industry. The worker who calls in to work an extra half hour to make sure I eat, sees my needs, while the one who spends the majority of time trying to hack the building's wifi, and leaves early is sadly, the norm.

I agree, I miss a worker who understands that pain can bring me to a state where tender care or only just being there is what is needed. They 'allow' me to be myself, while the more impatient want me to be the same at all times. IF anyone with any illness, visable or not, mental or phsyical can be always the same at ALL times, and NEVER need understanding, only anger that your disability displayed itself, then I suppose you are able to 'pass' - for the rest of us, in one way or another, we will run into this intolernace, so why wait until the palliative stage and then wish it away as 'glad I don't have that'. I AM you, I will BE you. If you don't like it, then change the system, have care agencies do 'satisfaction' ratings, the same as 'rateMD' or any other service industry. Why is poor treatment considered and unavoidable standard? Do we really accept so little of ourselves and our future worth? (unless you think that somehow you will avoid this, that you, like us, like those with ALS, like those with Cancer, won't run through the tens of thousands of dollars in the first year or two, and then, ta da, you are me.

Baba: I agree that caregivers, professional and personal do act in childlike, and spiteful, non-adult ways. The problem is that if actions don't have consequences, and people don't learn new patterns (in particularly, it seems like 'asking for help' is some sort of big no-no, but to me, it is a sign of REAL caring, to say, 'I need help quick, I am not acting rationally'), then these will continue and worsen.

Elizabeth McClung said...

Jane: Thanks. I do wonder what 'caring too much' looks like. This is a problem of the palliative unit, which only accepts people in the last three weeks. So 'stiff's' are brought in to die, but the annual millions of dollars are spent on the 'real' people who have lives the nurses and volunteers can relate to, who are there weekly, who may volunteer themselves, who have weekly walks together and breakfasts - as a community grief healing center, it is tops - as a place to die, it is like a horrid Kafka story.

wendryn said...

I keep getting angry at your "care" workers.

I have seen this and fought this for my own family, though not as badly as you are treated. I have also seen amazing caregivers; I wish you could end up with one of those working with you. They burn out fast, though, and are rare at the best of times.

I hope. I hope a lot of things, but I know that hoping doesn't help. We're here and thinking about you.

Karolina said...

Hi dear. I dreamed about you, you know? Like you were talking to me about something through the postcards you sent me. I still look through them. They are the most beautiful mail I've ever gotten. I feel sorry for you dear, I wish I could tell them to treat you differently, to make them change their ways. I'm learning to hate hospitals as well.. Must the world be like that? I don't know.

All my love,

Neil said...

Dear Beth: Lorna has said exactly what I would, only she said it better.

The amount of pain your body creates for you is beyond my comprehension; I'm sure that a mere migraine would be a blessing for you some days.

There are things that need doing by the workers - dishes, perhaps? Those are a daily routine, and while you are supposed to come first, if there's nothing that can be done for your pain, what else can they do but retreat to the routine tasks?

I do understand that sometimes just the presence of a caring person can help. When I'm lying limp in bed with a migraine, I can hear the daily life going on in the house; people seem to ignore me, and I feel so lonely. Just to have my wife come and hold my hand would help. But she's busy keeping the kids on track with homework, or making supper, or doing her own work.

Beth, when you're in pain, try to think of us around the world who read your blog and who truly care about you. We may not be in the same room, but we DO care' we're thinking at random, sometimes frequent, moments, wondering how you are right now, hoping you're able to function, sending prayer and hopes for you. I'm not there, dear, but I am here in the 'net, sending my best thoughts for you. I'm holding your hand right now, my dear friend, and I'll be holding your hand every time I think of you (which is often!).

Linda, I'm also here for you. Imagine, please, that I'm holding you in my thoughts and giving you all the emotional support I can.

With love and zen hugs for both of you,
Neil said...


I can afford to pay for your Tramadol, if you'd let me. Just say the word, and I'll send you my contact info to arrange a transfer. So often I have been able to do nothing to stop my pain. If you let me help yours, I'd be grateful. (or you can put the funds toward anything else that would make you feel better than the Tramadol).

Funny, you call Dilaudid an end stage med: that's what I was put on when the first med gave me epic, vomitous migraines. I think it spoiled me for all other narcotics.