Wednesday, November 04, 2009

Which is worse, the terror of death or the terror of how I die? Part I

2:00 am and I am staring at the computer. Not knowing what to do. Not wanting to go to bed.

I hate going to bed. Not just because of the nightmares I have. I hate going to bed because I hate waking up in a world where my body and life is always worse than when I went to bed.

I wake in a room of total darkness, surrounded by sound bafflers, and I can’t move my arm, and when I can, I can’t touch my nose. Every part hurts; except those that don’t hurt, and those parts are getting larger every day. I found out I had frostbite in my feet; I had it for multiple days before I found out. I am so used to my black toes and purple toes and blackish feet that to see the dead cells, the destroyed flesh show up as the circulation returned in water; when I could feel a dull roar for a time. I can’t stop thinking about those cells destroyed forever.

If by magic, I was given IVIG right now, like I have been approved to be. I was given treatment this week and blood transfusions and care, if all that happened and everything stopped right where it was, what would that mean? It would mean that I still have three or four physical limitations as outlined in ‘The last stage’ of the caregiver handbook.

It would mean that I would have to never see a summer again, and not go outside during a winter. It would mean I would require constant care the rest of my life. That I would have oxygen and yet my fingers would be purple, I would have to guard against brain damage. I would have elevated costs due the amount of medications, and the materials to keep me alive. It means that the neuropathy, which has progressed significantly, into my hands, into my face, would always remain. I do not feel a slap on my face, or a frying pan on my face. Yesterday and the day before, there was more blood than I had paper towels to clean up how deeply I had bitten into my lip before the blood coming out told me it wasn’t the meal. I found the chunk of skin stuck between two teeth. It will always be like that. I will not have taste or limited taste. I will need assistance in all things, as I do now.
And that’s part of what dying is about. Degenerating and dying is not just the pain of you but it is living to see the people you love burn out in front of you. They burn out until they alternate between grief, hatred, frustration and exhaustion until they are sure which is which anymore. Why isn’t anyone else helping? Where are the extended friends and family? To see Linda burn out, or begin to burn out, is painful. It is one of the true exquisite pains I can still feel. The rest is just the unyielding fire that burns in my nerves and muscles, bones and joints for as long as I can remember. The first times they help you dress, it is new and interesting, then it becomes routine, then it becomes you waiting on a shower bench until they finish reading or writing and email because they have done it before so many times. And then just as each new symptom brings you horror, like the mass of scars, lesions or exploded veins which are now starting to cover and spread down my legs, bloody and tactile. To them, it brings frustration, “What next?”, “Where are the doctors?”, “How am I supposed to know what to do?” Any caregiver helps as best as they can until they can’t help any more.

Every sleep brings me closer to not only these emotional aspects, but my body doesn’t wait just because I am having an emotional crises; as more cells die, as the hands are more useless, as there is no more money to get equipment. Linda breaks down because it is just work and home care and she can’t get through all the ‘doing’ that needs to be done, all the paperwork piled up by people with full times jobs. And I can’t help her. I can’t suck it up anymore and pretend that this doesn’t matter, that I can deal with it. No, I need the assistance.

I live in fear.

Fear that Linda will leave me in the shower. Fear that a worker will. Fear that Linda will leave me on a toilet again, or stuck in a wheelchair waiting, and she has had it, and doesn’t want to come. Most people who are caregivers burn out. The irony is that the very thing that tips them over the edge that day, might be something that they see their work colleague needing help with; or their friend has emotional issues and they listen patiently. But their partner has emotional issues, part of their disease; not the person, but the disease; and the caregiver explodes at them, verbally abuses them. Not anymore. Not this time!

For me, there is just degeneration then death. There is no ‘burn-out’, only death is the break. Oh, I want to have burn-out, I want to have a ‘Respite’ where the cares goes away, where the pain goes away, where the paperwork and demands from various agencies go away. Oh I want that more than anything. But it is my partner who will instead put me in a place where I will NOT get care, or minimal care, not care for ME. Just your branded, off the counter care, like they have in jails. There is food, and if you can’t make it in time, you don’t eat. There are beds, but if you are woken by the bed checks, you don’t sleep. But the thing is that your caregiver, who DOES love you, has a vacation from taking care of you. Has a vacation from thinking about how they have to hurry home to help you in or out of bed; they can go off and have a drink, have a meal with a friend. Because they have accepted that YOU can’t join them, that I can’t, but that doesn’t mean they are dead or dying too. The reality of care-giving is that it takes a village of HANDS-ON people, of people who are there. There is no reason I could not have the same positive experiences as Linda, I could not have a spa, or other positive things. But the truth is, the system, the support networks are set up to save the care-giver, and to de-personalize, de-humanize the dying. “This is what they will look like….”, “This is a list of signs…..” – they are just another task to be completed, not a human being. Because somewhere a whole bunch of people decided that the best way to take care of the dying was to ask what frustrates the people who take care of them. NOT to ask what those who are dying need or want.

And meanwhile, I, who stood so strong a year ago, not knowing that half or a quarter of my energy was an abundance to what I would soon have, I was a fighter. And still I fight, even though each day, each time I sleep it is as if someone as a cosmic deli is taking slices of me, removing function. If I could freeze my condition, my brain would still be so damaged, I would be on a precipice the rest of my life.

And now, having seen myself in pictures: I look like crap.


And I look that way 90%+ of my waking life now. My heart so erratic I had to get more pills. Looking at those pictures is like listening to my voice on an answering machine: “That’s not me!”, “I don’t look that bad!” No, it isn’t, as the truth is, I often look far, far worse. My face is yellow or pale or drained of blood. My lips are blue and when they turn to purple that is better. And I look at those pictures and I think, “And then I get help to get up and I go and do a 10K and then I come back, and I chatter away while I am high on endorphins until they run out, And then I move a little still but I start moaning Then later, I start screaming. And I am broken for a week or more.

Breaking something so fragile is easy.

I think, “No wonder people think I am lying.” Everyone has so little understanding of dying and the different ways people do it.

And so, if my 85 year old grandmother went to sleep, and my 92 year old grandmother was put into a morphine coma, it must be easier to believe that this is a fake, right. That for some reason it is EASIER to believe I spend time taking pictures of me in a $5,000 and a $25,000 wheelchair. Easier to believe I rip out my hair than to believe that every week, with two people to help, I get help getting dressed, and that I leave, STILL on oxygen, and race or see squirrels or play badminton or do a 5K. And then come back and have pain beyond imagining. Truly, it is beyond what you can imagine. And you should be thankful. Because the fire of the time before is gone, all gone. I gasp for breath, the muscles of my lungs hurt. The warrior is broken.
So when I see those pictures and I too forget that I am only looking at the skin, at the body which has been shut down, stopped, and that inside is a mind, a spirit that lives and plots and plans. That for Cheryl, it is FAR easier to believe I would do something crazy/stupid than lie in bed for several days. So me leaving the palliative care center, going out on oxygen, do a 5K while on oxygen and then come back for the opium. That makes sense, when you know me. And that is how I will do the second to last stage of dying.

I don’t want to sleep. I would rather live on in a nightmare.

I wish I wasn’t dying. I wish I didn’t have to go UP in health significantly to be on the down slope toward dying. Who would want to sleep to wake up to a world of medications, heart and lung conditions, bleeding, pain and knowing you can’t make a single mistake? Who? I would rather forever be chased by the mystery man with the knife, while I run in slow motion, than wake to not being able to move at all.

I keep busy. Only keeping busy creates some of the pain I am in. I push myself to get dressed, so that Linda or a caregiver doesn’t have to always help. I push myself to type every day, even though that gets slower and more painful, in my forearms, in my triceps, in my shoulders, and scapula, all just for typing. Pain. Who would want to be in pain all the time?

But then, who would want to be alone, sitting by a computer, between a computer and a hospital bed. I go days without emails, without companionship, without anyone trying to maintain a standard of care except Linda. And Linda is only home a few hours a day. And she is tired of a life of working a full job, doing full care giving and not even getting enough sleep, not to mention some time off to herself. So she is surrounded by the tunnel vision of: not enough funds, not enough time, not enough done, more organization and people who tell her more forms to get signed, a new doctor to find and in it all she has to have her heart ripped out as her love for me hurts her anew each time. I pass out a hundred times a month, or hundreds. I am stimulated to breathe, or have someone breath for me dozens of time a month. A year ago, either would have been a crisis. Now she has to try and get me to breathe, and try to remind herself not to think too long about the shopping list while checking how many minutes I haven’t taken a breath. She sees the pain, she sees the fatigue. And it burns the skin right off of her heart. And then we go on. But medically....no. No quality of life. No quality of death. No dignity of dying.

I try not to think about how I make Linda’s life more difficult and stressful, how I have literally stolen YEARS from her, in taking me to tests, to doctors, in looking out for me. How I live knowing that my living, and struggling, my pain, my laboured breathing, my struggle to breath at all, my seizures all hurt her to watch, all hurt her to clean up after and take care of. But that dying would hurt her also.

In the small hours of the morning I think that with dying maybe she will move on.

In the times when she reaches burn-out, when she can’t tell the difference between the person/me, and my conditions, when she unloads her frustrations, her anger at being STUCK, and spending YEARS, spending all her money, all her TIME, and the costs! And how she walks out on me again, leaves the apartment to talk to someone. She tells others the good things, the parts she loves about being with me. I never get to hear those, only that I am helpless, both physically, and in our relationship to help her. She wonders out loud if there is a relationship, if there is an ‘us’ anymore.

I wish like Jeremiah that God had ripped me from the womb, so that I would never have been born.

But dying isn’t something I get to choose. Not now. If I had a doctor they could help me get into a palliative unit they would help kill me….I mean medicate me to the level of my pain.

In my mind, I am in my 20’s, ready to question life, ready to jump into new adventures. But my body is aging, has aged beyond what it should, I am older now, says my body. It is hard to look sexy when retaining water in your legs, your stomach, your heart. When there is mottling and bruising all over your body, and lesions. I want to be the warrior, the mental warrior, the physical warrior – I want that no one will ever have to fear a bully when I am around. I want that bullies know that while the police may not act, that bosses may not act, that in this society, we are so used to looking on that no one acts, but I will. And that if there is a bully, you will have someone by your side, to comfort you, to make sure you are safe. Except in THIS body I am the one who is scared, who is trembling, and who is abused, verbally, emotionally, physically, over and over. And I can do nothing. These act create triggers from rapes and physical brutality from years ago. Is there anyone among those who care the most about leaving at 4:30 who will stand up for me? Like a trigger of long ago, I believe I must deserve this.

I believe I am letting Linda down, that I am a failure somehow to be ill like this. Because I am not part of society. At best I am something to be pitied. The teacher and Dr. McClung is gone: I am the woman in the corner, sitting in a wheelchair, connected to a pumping machine that goes, chug-hisss, chug-hisss.

The people in the corner are not people we include in our lives, not the people we have as friends, not people we go to for help, not people we go to for ANYTHING. I do not get emails because people have LIVES: jobs, friends, commitments, kids, relatives, shopping, upcoming birthdays, anniversaries. I have those too, a birthday uncelebrated, an anniversary uncelebrated. I have an anniversary of a promise kept: That I would live to watch Bones on DVD with Linda; an anniversary of the first time I had to use the wheelchair as a mobility aid; a birthday of my new brain, my post stroke brain. I don’t have the strength to plan a celebration, or the energy to let everyone know. So the day passes, and maybe I am conscious for some of it, and maybe not.
When I am scared, I go online and spend, I buy a manga, or I buy some stickers, or postcards. Because when I can’t feel my own lip, when I can’t taste, when Linda says ‘I don’t want the responsibility of taking care of you’ to me, my world goes out of control. Knowing she is trying to find her way back to kindness doesn’t help. Nothing helps, but when I buy a DVD set, at least something happens. At least something arrives. While I wait to find out when I am going to a home, and what type of home it will be. But maybe I am not going permanently, just until Linda can stand to take care of me.

Before you judge her, live a year or two in her shoes, being the only person to transfer me, to lift me, to assist me, AND to deal with the mountain of paperwork AND to work a full time and demanding job which requires overtime. I would love to walk away from my body for a while, from having to always be so careful for a while. There are no respites for the dying. And the times we have, to share, when I am sane from only 'just enough' pain, and she not to fatigued from all she has to do are too few.
In the end, there will be a sort of brutality about it. I will not go peaceful, not at first, with the shallow breathing, the stop and then a bit more of shallow breathing and rattles in the throat that can go on for days, leaving nerves jangled as no one knows if that was it or not? But I am more likely to partially suffocate, to be gasping for air, tendons stretched on the neck and collarbone standing out like those on the cross did, reaching for the point to suck in oxygen. And again, and again. I may be covered with mottles, I will likely be bloated due to my inability to sweat. That’s why the palliative centers have it in shifts. So that they clean up after the foaming drool of my seizures and Linda come and sits with me when I stare out into the rain. She holds a plushie and tells me what Eiki Eiki is thinking and how the plushie misses me. She looks for the recognition, the facial expressions. This is the way the world ends. My world. It is NOT ‘flying’ away, or ‘slipping’ off and any of the euphemisms, it is suffocation, it is suppressed heart rhythms causing lack of oxygen in the brain, a slow death of minutes. Or more often brain damage, again and again, until the body is worn down to stop fighting and gives in. That is death.

It is now 3:00 am.

I am supposed to face tomorrow, and not talk about death, but be busy, always busy, even when it hurts me. While others emotionally break down, I must not. While others take a break, I cannot. Because the only respite I get at this point is the last one.

32 comments:

Neil said...

Evicted? That doesn't sound at all good. I shall be watching this space for further news, and sending as much positive energy as I can!

Love and zen hugs,
Neil

JaneB said...

Oh shit, Beth, what's happened? And how can we help?

Many hugs

wendryn said...

(((hugs))) I'm so sorry to hear things are getting that much worse.

I'll try to send something good this week.

Cereus Sphinx said...

Why???

and is there anything we can do?

Lene Andersen said...

What???

what's happening? Please give more details.

FridaWrites said...

I am worried about you and hoping that you will grace us with your presence as long as possible. You have brought so much to my life.

I don't know about the terror--I sensed it with my grandfather but he didn't want to talk about his impending death at all, just wanted company. It bothered me not to talk about it.

Gaina said...

EVICTED!? What the hell....??

Baba Yaga said...

Regret your terror, no matter what the cause.

FridaWrites said...

I can see you do have a lot you have been worrying about--I think I would not want to go to sleep then, either, wanting to prolong the function I had.

I am sorry about the frostbite. I don't know if there's a way to prevent more of it or not, but please be careful if there is.

I believe you and see what's happening. I don't think we can know for sure when your death will come--I want to be in denial that it is. I know and see you're able to do a lot less than you could last year, but I can also see what a fighter you are for life.

Caregiver burnout is maybe inevitable though I think it can subside for a while--we've had our bouts with it. I think of it as something that waxes and wanes--like waves rather than something linear. I hope you are not experiencing abuse but are just worried about the possibility--maybe I am in denial again. I don't like for you to be in severe emotional and physical pain. If you are able to, take a break from the emotional pain at least with me for a bit later on and let's talk about New Orleans via email. I have been depressed and am not pushing myself enough.

You don't look like crap to me, ever. I think the same of photos of me now and don't like to see them.

I feel like you are a part of me. You are a very dear friend.

Neil said...

Dearest Beth: 1:30 to 4 a.m. is definitely the worst part of any day for me. The nighttime voices start reminding me of all the doubts, fears, things that need to be done, things that should have been completed. And I lie there, knowing that I might get a migraine from lack of sleep, and wondering how I'll be bright and perk all day... Yeah, sometimes I hate the night.

Time is a thief; it steals away the flexibility, the health, the hair, the memory... And that's just for us "healthy" people.

Thank you for such an honest entry, Beth. Yes, some of the former Beth may be gone, But the night voices are wrong: you are not a failure. Yes, you were dealt a bad hand in the genetics field, and your body is messed up, but it's not a failure on the part of Elizabeth Fucking McClung.

You ARE still teaching, dear, through this very blog. Dr. McClung, as she was, has changed, and diminished, but you are still there, and you are probably remembered fondly by your students (or at least some of them), who would thank you for what you taught, if they could find you.

Unfortunately, you are also the woman in the corner making chug-hiss sounds. And you're the woman who is being tossed around by the medical profession, and ignored because you won't stop fighting and trying to live.

To the doctors who should be reading this blog: there's an awkward patient here with something to teach you! Who's brave enough to accept a dying woman who still wheels 5k races? Is one of you willing to take a patient who will most certainly NOT go "gentle into that good night? Could just one of you treat a woman who wants to live until she dies, rather than sitting in the corner being pitied?

To Cheryl: Thank you for including Beth (and Linda!) in your life. I do not have your level of training, and live too far away from them, or I would be willing to try to do what you do for them.

Beth: dear, wonderful teaching Beth. The last paragraph is something that you might discuss with Linda. I'm afraid that she might feel almost exactly the same way. But your last breath will not be her respite; she'll have the rest of her life to remember you.

You WILL be remember, Beth! I will remember you, and thank you, for the things you have taught me, the gifts and cards you've sent, the joy you took in LIVING until you died. I will remember you as someone who fought for others, when nobody would fight for you.

The Internet will also remember you; the 'net seems to keep everything, and someone will stumble across your the way I did, and will learn from you.

And maybe, just maybe, someone will read this blog and take action for those people with your symptoms, and start helping them. maybe your blog will give someone the push to become a doctor who cares. Maybe...

As for your question in the title, I definitely worry more about the method of death. While my mtoher died in a coma, the stroke and the hours afterwards, until she lost consciousness forever, must have been terrifying.

And on that cheery note, we have a medieval feast in two days to prepare for, so I must hie me off into the November sunshine and be happy and productive. Bleah!

Love and zen hugs,
Neil

Lene Andersen said...

dying is hard work, for the person who gives you care and for you. Two different type of burnouts, but burnout all the same and there is no respite for you.

I wish I knew how to give both of you respite from the reality that sucks so much there are no words for it. Have to say though that the words you did find to describe it were hard and true and beautiful. The writer is still there inside of you, even though she's accompanied by clug-hiss.

yanub said...

Beth, I wish I was closer, so that I could sometimes step in and help. I don't understand not wanting to help. Probably it is easier to not be there, to not see, to not accept the evidence of one's own eyes. But there is easier, and there is love, and those are two very different things. Linda, and Cheryl, choose to love. Love is the most horrible thing. It makes harsh demands of sacrifice. It is unpitying that you are tired or broke or ill yourself. It just says, "do," and you do. For all that it is celebrated, it is not welcome. There have to be laws on the books to allow people to act in love, to sacrifice themselves while everyone else averts their eyes and complains how the lover is damaging productivity and wasting resources.

As for you, you are already the hero you aspire to be. I do not think that your fight is without meaning or consequence. I believe that you have saved others and that your words and actions will continue to save people long after you have died. You can not know the countless times you have helped me. If I told you, you would think it was insignificant, but there is no such thing as insignificant help when it is genuine. And you, dear Beth, are genuine in all you determine to say and do.

rachelcreative said...

Elizabeth

It is brutal and terrifying.

I wish there was something more I could offer you than to say I don't know know what to say. Something more than to tell you I'm listening to you whatever it is you have to say.

Baba Yaga said...

Oh, Beth.
And oh, Linda.

When words run out (& I've used too many today), gestures sometimes fill in. But not across the ether. I can't bring you warm tea (ginger lemon, jasmine, or peppermint? - does your sense of taste still function reasonably?), or pass you the tiger I keep (or so I claim) for visiting children, or give Linda a break from the responsibilities of your illness and you a break from Linda's weariness.
(& on the evidence of myself and the world in which we live, if I could do that last, I'd do it less willingly than is honest.)

I know you need a break from your illness, too, and perhaps it's no wonder you do the crazy things.

FWIW, I wouldn't dare pity you. Such impertinence! I'm sorry every time I come a little closer to understanding how things are for you now, terribly sorry. But I'm sorry that you live such things. Pity, I think, takes the you out of the sorrow, and perhaps even the sorrow out of sorrow.

My gut says you are a member of society, whether society wishes to recognise it or not - and far more so from your wheelchair or passed out on the floor than many whose passions have never gone beyond the football pools. My heart says, when society declines to recognise it, how on earth can one know it oneself? & I'm sorry, for that's a lonely place to be.

Abby said...

I can't begin to imagine how frightening and painful this must be for both of you.

But I am glad that you weren't ripped from the womb - a lot of people's lives have been brighter for having had you in them.

Cereus Sphinx said...

Respite, that sounds good.

Burning out to a little fleck sucks.

Whatever respite you need, find some way of getting it if at all possible. Ask.

The final kind of "respite", the kind you you seem not to want. I hope you can avoid that too (as long as you continue to not want it).

Elizabeth McClung said...

Neil, Jane, Wendryn, Cereus Sphinx, Lene: We are not getting evicted from this apartment, but rather I would be evicted at $36 per day to a facility until such time when Linda would desire to pick me up again.

I don't know what is going on. I do know almost everything now that was hidden from me 'for my own good' - so diminished capacity has nothing on irritated and angry it seems.

I do have to wonder if I had a more simple language set would this occur in the same way - or would I be 'willful', and 'disobedient' like a child. Perhaps the dumping of issues in my lap is a backhanded statement of equality. Or a desire to make us even, the share the frustrated helplessness. Except of course, the outcomes occur to only one of us. But maybe that is the 'equity' frustration within caregiving, another part of not being able see the difference between the person and the disease: That I do not get care because the DISEASE needs it for survival and Elizabeth needs it for dignity, but that both are mixed together, so it becomes Elizabeth the burden.

Then when Elizabeth (the burden) is passed off to somewhere or someone else, the freedom and lightness comes from being free of all those chores (while I still must not miss one, due to the significant outcomes). That Elizabeth will have a lesser life while the 'respite' allows the other to recover is okay, because it was Elizabeth, not the disease which dragged the caregiver down - or adding more suffering to the person who is ill is okay because that is better than the loss of a caregiver - either way, I am pretty sure I know who gets the shit end of the stick.

Elizabeth McClung said...

Frida: I am not planning on taking off anytime soon, like Tuesday for example. But instead of the abstract 'Dying' there is a very clear and visable destination from where I am. Indeed, the question would be, 'Why not dead already?' which makes the terror more tangible - a bit like the difference between a dental appointment in a book and a man standing over you with a high whirring drill about to lower it into your mouth.

I want to talk about it, Linda does not. In a lot of ways our communication, even Cheryl and my communication has been stunted by my being ill - that most of the discussions revolve in some way around that - we don't have the experience of movies and lunches out as much, and what we do have I can't remember (another thing that has been brutally reinforced in phrasing and otherwise over and over again - it is all very well to tell someone who can't remember in a few days bad news, as the news might disappear, but the fear will remain).

Elizabeth McClung said...

Gaina: Indeed

Baba Yaga: Me too

Frida: Yes, what future is there but loss of function. If I had 10 years I could slow down, and be happy doing a few stories, some poems and some outlining for a book over the course of six months, so by three years, another book, another three years, another book - some sort of routine and schedule. But when so much time is spent trying to stay alive, and so little time is left, and so much taken by caregiving - what is left? Another day of isolation, another day of busy, slow, painful, but busy.

I think it does wax and wan, the burnout or frustration. I think that it would for others be a memory, for me, a terror, a cluster of fears, more fears about being left, about being walked out on, about being put away if I am not amusing, not compliant, if I am not always as healthy and as little a burden as I can be. And other fears.

If I don't look like crap in the oxygen photos then I will have Linda keep taking photos.

For frostbite, I have a couple pairs of thick socks, I cover my feet with a blanket, but this is not enough. Not enough it seems and how am I supposed to know that? I don't know.

Elizabeth McClung said...

Lene: Dying IS hard work. Are you still waiting for your respite? When is your replacement going to show up to give you your two weeks a year without RA and complications? I always feel a surge of anger when I get no care from a caregiving agency because, I am told later, X was sick, in tones that indicate I should be as concerned and sympathic. Oh my GOSH, an AB had the COLD! Oh yes, dump the crips into the ditch, leave them in the beds, don't bother to feed anyone, an AB has a COLD!!! Sigh. Yeah, that always irritates me, or if I have already done some digital fecal extraction, had a bloody nose and tried to shower and dress myself for the last 90-120 minutes I just sort of stare in the 'and this matters how?' department.

JaneB said...

Oh Beth, oh Linda. Hugs to you both. It seems vey unfair that life is so brutally hard.

Elizabeth, you teach, you are a friend and a helper and hero, beyond the limits of your apparent capacity. You matter.

But it's true that there's a lot of emphasis on care-givers... maybe because it appears to be possible to offer some help, some respite, for them, whilst for the dying... I don't know if reading, if trying to come along with you in imagination and by being here, is worth anything for you (it is for me, never doubt it), but it's all I can offer, all any of us can offer - to be here.

The path you are both on is so hard, so gruelling, it's not surprising you struggle. Going on afterwards will just be a different kind of struggle, for those of us left, you do know that? Praying for you both, because that I can do.

Elizabeth McClung said...

Yanub: too true about love- we have no place in this society, I keep hearing this phrase 'it takes a village' in talking about raising someone, but it is just as true for caring for them as well. Except now, to care, to love, that will get you laid off, that will get a black mark on your file - because you are not truely dedicated to the company - WHO IS? Seriously, most company positions are not ones which are created with the idea of worker joy in mind - so who the hell IS dedicated except those who have it as an ethos or a lack of another ethos. I envy your short way of summerizing the 'do' and brutality that love requires. We pledge sickness and health and think of health, we pledge rich or poor and think of middle class rich - or as my brother says, "Money makes things easier, a lot easier." and "I like money, that's why I want to have a lot of it and that's why I won't help anyone if it threatens that."

If I helped and it is genuine, then it would matter - right now, I help no one, and protect no one.

Elizabeth McClung said...

Baba Yaga: When society tells me I only have a negative value, when caregiver networks tell me that I am the enemy, when doctors tell Linda that I am the problem, when everything is set up as a barrier instead of kindess, then yes, how can I believe otherwise?

FridaWrites said...

You believe otherwise because we tell you otherwise, and you trust and believe us, right? You have very positive value, always.

wendryn said...

I just came to check on comments and saw a whole new post that didn't show up in the reader. I'm sorry I didn't see it sooner or I would have responded.

Society likes telling people they have no value. A lot of people I love are told that, in a lot of different ways. Society is wrong. Society is often peopled by idiots. You have value. You are an amazing person. You are, yourself, in your writing and your caring and your work to explain and in the book you wrote, you are important. You have changed lives for the better. You may not remember it today, but stick this up on the brain board: you have made a difference, and you are still making a difference.

I'm sorry it's so hard between you and Linda. Both sides of that relationship are deeply painful. I hope you find your way to communicating gently with each other again.

I want you to know that you have made my life better. You have made Xander's life better. You are a dear friend, and we will keep emailing every day and sending postcards. You matter to us.

(((HUGS)))

SharonMV said...

Dear Beth,

I hate this dilemma! The same one that Dennis & I face to a lesser degree. There is only the 2 of us, no one else to help. I can still do things for myself, though some days when Dennis gets home he asks me "did you eat today?" We have family, some who live within one hour's driving time. After asking & begging for help, we did get some - a few times a year. But they are still in denial - if they aren't constantly reminded that I'm sick they assume I'm "better". One of my sisters does help, she comes to stay with me when Dennis needs to go visit his family.

Dennis gets overwhelmed at times & burns out. He has no one to support him except me. And I can only give emotional support & sometimes not even that. And I too have mental & emotional problems that affect me & this causes fights & anger sometimes.

All that we go through is far less than what you & Linda are dealing with. Even though we are so much closer to "a normal" life, able-bodied people, non-sick people, those who haven't been care-takers to someone seriously ill just have no understanding of our life. How small it has become, how every day is a sick day, that no news is not good news, that we need help.

Oh my dear Beth, I wish you didn't have to suffer. I wish that you could stay with us & be in some comfort. I wish you could have the palliative care & support that you & Linda need. Where are the people who help?? Shouldn't there be people who care about the sick & dying? Where are you? We are here in your own country, your own communities, your own neighborhoods.

It's hard when you're the one who needs care. Sometimes, Dennis is just "done",for the day - that's as much as he can handle. And there are days when I'm home alone where I'm really not able to take care of myself properly, but I make due. It's hard to be the one who's home alone all the time, feeling outside of ordinary life, forgotten by society & friends. It's hard knowing that my illness is so expensive & takes so much of our income.

But you are not on the sidelines, Beth, or stuck in the corner. You have made a community here, for me & all your friends. And all those who may be reading & not commenting are certainly learning from you.

And you are beautiful always.

Sharon

Elizabeth McClung said...

What goes on with these things are like feedback loops - they just occur and it is hard to take a big picture when your life is all about small pictures. I totally understand Sharon, I haven't eaten now for about 50 hours, and I don't expect I will until Saturday. Tomorrow I have to try and go see a GP and try not to cringe for the rejection I anticipate.

God it hurts. Today a woman told me she was going to make sure I did not get any assisted home care - she was the team lead for VIHA - she said she was discriminating against me due to my disability - that I was 'too complex'.

FridaWrites said...

That's really awful of them. Complexity is to be valued, even medical complexity. I don't get how they think they can make these kinds of decisions--it's not right. Do you need us to put up a fight for you as they did for the other Canadian woman denied care a while back? She got it after a lot of political pressure/people calling the agency.

FridaWrites said...

Why aren't you eating? You need to eat, please.

Elizabeth McClung said...

When I can control nothing, then I try to control what I can control, which is what I eat. Plus, we don't have any extra food, and we don't have the extra funds, as our emergency fund and the food card is depleted as Linda used them right before she went on a sort of 'going away' respite. Since Linda is having a respite and I have to look after myself and I am trying to deal with all the calls and paperwork and stuff, it is difficult to even have a drink a day, much less food. The workers don't know what to make unless I tell them, so they make nothing.

Raccoon said...

Okay, this was a little confusing. I mean, the e-mail notification that I got yesterday. I was going to reply, yesterday, that it was confusing, and what was going on?, and came and saw a note saying that the post was being edited, so I didn't leave a comment, and I come back today and see this...

I'm sorry if that was confusing.

I remember the first time that I was conscious, in the hospital. I couldn't move, couldn't see, had no idea where I was, no recollections... Yeah, I understand that being scared.

I will contact the two of you tomorrow.

FridaWrites said...

For goodness' sake, Elizabeth, please tell them what to eat, about the shakes at least. I would feel guilty and responsible if you don't eat. I feel helpless that I'm not there to help you and wish that I could be.