The terror of dying, the facts of dying, the facts of caregiving

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.