At what price pain?

I have someone who helps me–she helps me put a pain I cannot categorize into a context that I sometimes forget–because I am in such pain. She helps me find the evidence to disarm my fear.

I am insured through my employers, yet I see the therapist I have seen off and on for 15 years. I pay the full tariff even though I could retell the whole darned life thing and start over with someone I don’t know–at much less monetary expense. Even the paying is a struggle.

When my mother was ill I went a little bonkers. Alzheimer’s will make the people around you crazy too I have learned. At that moment, I could deal with the fact (for me) that I was unraveling and needed to find a bottle of clear fingernail polish (or its emotional equivalent).

I could not deal with reliving the whole “in the beginning…tell me about your childhood” thing. I went back to see Colleen because I WOULD NOT retell the whole pile-o-stuff I had already explored. She knew. She didn’t need life history 1-A and 1-B. I needed the context and the trust I have with her. One of the things Colleen helps me put into perspective is “what is enough?”

I did absolutely everything that could be done to make Lane comfortable and secure in his last months…and still in the dark of the night I wonder was there something I missed? There must have been because he is gone. My thought process takes an unexpected left turn from rational to magical. Nothing I could do would cure cancer. Cancer killed Lane. Not me. I was not even responsible for the Second World War–even though sometimes I am willing to take the blame.

I get wound around the axel over the difference between what I believe and what I know. I am learning that I can choose what I believe–what I give attention to and what I reject. It is hard work, staying rational, not going to places where there is no possibility of an answer. The grief, the pain makes rational thinking more difficult. I have to concentrate to decompose a thought or feeling from “Lane is dead; I am terrible.” To “Lane died and I was blessing to him while he lived.” All the rational evidence supports the latter.

Your life is yours. Your history is yours. I am 60 next month. I think I have at least a passing understanding of my life after high school. I have no understanding of yours. It is yours. So whenever I tell you what is working for me, it is just that…working for me (at least most of the time) and that not perfectly. “Advice is worth what you pay for it” is an old adage–I have heard it for years. I just want you to know that the advice–or more correctly–the testimonyI offer is not free. It came at a price, which I have paid. I am willing to share whatever might make your load a little lighter.

The Witching Hour

I could learn to hate midnight. At midnight the pill that brought blessed unconsciousness some hours ago is history and there isn’t a back up (as in what do I do now that I am back up?) plan.
The television is full of war news and pervert news and unexploded ordinance in East County neighborhoods. Oh, and now they are talking about how little we know about our retirement plans. It isn’t polite to preach to people who cannot talk back to them.
The 401K is now a 101B. I have no clue what I need to do to survive the economic disaster. I do know who to ask for help. It is just one more of the things I cannot change–particularly at midnight.
It’s a smokescreen. I could give a rat’s left testicle what the stock market is or is not doing with my money today. I can’t spend it today anyway. I cannot retire for at least 7 more years and I may be working until much beyond that.
All the plans have changed. I won’t be retiring at 63. We will not both receive the social security stipend we earned together. Thank you Uncle Sam. If I work until I am 67 I will be able to collect a promised sustenance based on Lane’s earning history. He earned more that I for longer.
I get angry in the middle of the night with people who are just doing their jobs. The laws that rule their actions do not consider that terminal means dead soon. It isn’t the people who are without heart. The law is without heart, courage, and brain–and it is absolute. I know how close I am to becoming a statistic–at least I am afraid I know.
Midnight used to be my favorite time of day. The quiet warmth of a comfy bed; strong arms to hold me; kisses in the night; the warmth of his body to curl around all made night time a blessing and a refuge.
It isn’t midnight I hate even now. It’s death and loneliness and the newness of it all. I don’t ask why. There is no answer that will suffice.
I think a glass of water may help. Perhaps a half hour listening to the guided meditation that shows me truths I only half believe will call back sleep.
I miss the growly voice of months before–the one that called out “Babe, are you okay?” to my midnight wanderings. No, right now I am not okay, my love. I miss you and I love you and I am glad that you are not hanging in the limbo you were in. I only wish that the kind and gentle finish to your life would be as kind and gentle to the continuation of mine. Somhow it’s harder at midnight.

After Waiting

Yesterday the past four months seemed like an eternity in Hell. This morning it seems like just minutes ago we were walking out of the doctor’s office incredulous that cancer had such an invisible strangle hold on his life. We both waited to wake from what had to be the ultimate nightmare. When we awakened, it was not a dream at all. We went on with our lives as best we could, trying hard to live rather than wait to die.

Cancer is insidious. The day came too soon when the waiting won out over the living. The chemo hurt more than it helped. Weakness–physical weakness–beat out our firm resolve. Day by day the hours asleep stretched longer. The ability to move diminished. Dependence replaced self sufficiency. Cancer transformed the stronger of we two into the more dependent and I do not know all the ways it changed me yet.

This evening Lane died. I know it is polite to say he passed but in every way he more than passed. I think he aced this life. The name of the end of this chapter is death. Only that ugly final word gives me comfort. My darling has died and the wait for his last breath is over.

There is a new challenge for the morning. I am not sure what that challenge is. I am not sure how to meet it or name it or recognize it. I know I will not be alone no matter how lonely I feel.

Permission to Leave

First, I never wanted cancer. I never wanted to be a widow or celebate or sad or angry. I never wanted to explain to my grandgirls that Papa isn’t going to get better or that, soon, he won’t be here at all. I never wanted to hide Audrey’s note asking him not to die. There are so many things that I never wanted and don’t want now.
The sad truth is he has my permission to stop this futile fight. My big guy can leave and go on to whatever comes next in the universe. I told him so.
He is unconcious and I call it asleep. His eyes roll back in his head and only the whites show under the shrouded lids. He hasn’t been awake all day. For the first time, I gave him his morphine in the bucal space between his cheek and jaw. The nurse says the liquid absorbs easily through the mucosa. She says the ativan will disolve there too.
This week he winces when touched. His brow furrows at a kiss and he moans when I try to rotate him into a new position–bed sores, you know. He hasn’t any yet. I see it as my job to have him die with skin intact.

He is dying and there is nothing he or I can do about it. So as he sleeps I talked to him. I told him he has been the best friend a girl could ever want. I told him that I love him and I love being with him and married to him and I love the way we have been together for all these years. And I told him it is okay to go. It is okay to let the curtain fall on this act of the play that is forever. I will be alright. I will be sad but no sadder than I am waiting for his body to give up. It is alright to slip into whatever the universe holds for him. He should take it easy; be gentle with himself and, yes, he should be gentle with me.

He no longer moves to the side of the bed to make room for me to hold him. I think the holding hurts. I think there is little that doesn’t hurt as the time for more medicine approaches. I know the sight of his frail frame, holocaust wrists, and sunken cheeks hurts me. Eyes that don’t quite focus and the missing catechism response to “I love you” hurt me too. I want MY love back. I want him whole and hardy and ready to take on the 26-year olds. I want to promise never to complain of the cold at another soccer game or beg off another softball tournament. I want to commit to every Aztec game until the rapture, as if such promises influence cancer and its progress through his body.

My darling, you have my permission to leave. This party isn’t any fun any more. There is nothing either of us can do to make it better now. But remember, please, how wonderful it has been. Take that memory with you. Take my love with you. Feel my touch as you go wherever this last journey takes you.

Waiting Room

There is a room in my house where I wait. It used to be my bedroom and now I hardly recognize it. The old oak chests and bureaus line up in stairsteps across one wall. The queen-size sleigh bed hugs another wall and under the window a hospital bed holds my dearest love–and his feet are hanging out the end. Hospice didn’t bring an extra long bed for my big guy. The room isn’t for sleeping or loving any more. It is for waiting.
Sometimes I wait for his eyes to open. Other times I wait for him to speak. Mostly I wait for him to die. I wait because there is nothing else to do. I read all the literature about living every day until he leaves, but there is no living to be done here. He is too weak to sit up much less enjoy life. He doesn’t remember that he cannot walk until he tries to stand. He hates the rails on that wretched bed. The rails only keep him from falling out but occasionally he throws a leg over the top of one as though he really could just jump up and go on with whatever was happening in his latest dream.
He talks to people I can’t see. He talks in the slurred, barely audible voice that is so unlike his growly baritone that I often think that  there is someone else in the house. But no, it is just we two–and we are waiting.

In other houses, in other rooms, other people are waiting too. His sister waits for me to call and say that it is done. His mother waits for me to call and say it really isn’t all that serious–a cold, the flu–he’ll be fine in a day or two. My friends wait for me to call and tell them what to do or say. I cannot tell them because there is nothing to do or say. There is only the waiting–a week or two or three. No one seems to know how long he can live on a beer a week and no one can tell me how I will sleep in this room when the waiting is over.

What will I remember in a month? will it be the long quiet hours alone? will it be the hundred cups of coffee Joyce loveingly brings by? will it be Joe, pouring a beer for a man who hasn’t eaten in a week because the first words he has said all day were, “Joe, where’s my beer?” Will I remember that for every time I whisper “I love you” in his ear he says “I love you too” or sometimes “yes, I know.” Will I remember all the tears that wake me in the night or every change in breath or sigh? Will I remember that I have done my best to keep him comfortable, clean and warm? Or will I second guess myself from now until it is my turn to go? I am waiting to find out. I am waiting for him to need me and for him to leave me and to learn how I will live a life with him a part of history. I think my heart is a waiting room.

Quiet Time

It is a quiet time in this house. There are few noises to interrupt the silence. There is a snore from time to time, a groan, a creak, a gasp. Mostly it is quiet here–deathly quiet. I cannot watch the television while I wait for him to die. I read all the pamphlets that say this is a time to live rather than wait for death. It’s hard to make quality time with a man who sleeps 23.5 hours a day. Sleep is a generous term for that unrousable unconsciousness. It is more of a semi-coma that feigns sleep and gives no impression of dream or rest. And so I wait.

He has been on a 6-day cycle these past three weeks. He sleeps for 6 days, rousing only long enough to take a few pills and a sip of water. During those long days I come to terms with death. I come to terms with learning to live alone and learning again to pay the bills and take out the trash and fold the laundry with no one to talk to but the spider on the wall. I spend six days wrapping my head around the deadly fact that this is really happening. I won’t wake to find it has all been a nightmare starring Bob Newhart and Suzanne Pleshette. On the seventh day he wakes and asks for stew or beer or tapioca. If I waited 5 minutes he would fall back into his fugue but I scurry to fill the stated wish. He eats or drinks and then falls back to whatever dreamless place he has been. The waiting starts anew.

The hospice doc says one can live for only a week maybe two without eating or drinking at all. What change does a a tiny meal once a week make in that prognosis? Is it an act of kindness to feed the transient request or should I wait and see  if the will to eat lasts longer than the walk to the kitchen and back? I don’t know what is ethical. I don’t know what is kind. I don’t know what thread is holding him here in body when his essence has long since fled. So I feed him when he asks and I offer when he wakes and honor his wishes when he refuses food and drink. I hope he knows his needs better than I right now.

I searched the Internet for information on how to clean and dress him when death does come. I found traditions for Jews and Muslims and not a word about how a Presbyterian prepares an agnostic to meet eternity. I see it as the last physical act of love I can perform for him. It seems maudlin to say it here. It takes away the emotion behind the promise. Til death do us part–I don’t think I believed in death when I made that promise. I want to hold him for a few minutes more. I want to hear his voice, strong and clear one more time.  Last time we really spoke to each other he said he had a speech that would make me cry. I Wish he had taken the chance. Right now I could use the words.

It is a very quiet time.

Not alone yet

He coughs in his sleep. He sleeps a lot. When he is awake, it isn’t really him. The cancer changed his brain. The radiation completed what the  cancer began. He doesn’t remember breakfast or that he has a catheter that will not be removed for the rest of his life. He does not remember that he is in the bedroom we have shared all these years. He does not remember he is dying.

I remember. I am here in the day and in the night. I am here when he talks to people only he can see and I am the one who doesn’t understand the few non-sequiters directed to me. I am the one who hears “eucalyptus” instead of good morning and waits while he searches his mind for the name of what he wants to eat. I am the one who reminds him that he cannot get out of bed without assistance because if he should break a hip or leg I could no longer care for him at home.

He is still here even though he really left sometime ago. I am not alone yet and I am so very much alone. Friends come and do what all friends do. Friends say the words of understanding their mothers taught them to say and as the words leave their lips, they know how little they really understand. They try to instill hope when they know that hope has changed from hope of healing to hope that the end will come painlessly and soon. Because there are no words that make the slightest sense I listen to their hearts. I know we are all alone.

There is nothing to be done. There is no task I can assign a friend. There is nothing I can do. So I am here. I make him as comfortable as I know how. I find ways to give him the medication he refuses more because he is easier to care for when he has no pain–even though for now he believes it is the pain that reminds him he’s alive.

There are two beds in our room. That is new this week. I have not slept alone on purpose in 25 years–nor has he. He is there and I am here and we are both alone and not alone yet.

Who takes care…

A ribald old ditty from my formative years keeps whistling through my mind,”Who takes care of the caretaker’s daughter while the caretaker is busy taking care?…” I don’t remember the origins, but I probably heard it from my grandfather who was fond of double entendre and off key bits of mid-30s music. The words transpose themselves for me. Who takes care of the caretaker, while the caretaker is busy taking care? Who indeed.

Caretaker itself is an interesting construct. I don’t see myself as a caretaker. I see myself as wife, lover, friend, occasional nag, and sometime raving bitch. Is there care? Oh, yes. I do not believe that there is a body alive who could care more for the comfort and well being of my big guy. Most days, I don’t believe there is a body better qualified or capable of keeping him happy and comfortable than I. Other days, I am not so sure. I think I am much more of a care giver than a taker.

Is there a nurse who would bring him Russian Caravan at 3 a.m. and drink a cup with him–sitting at his feet? Who else would hold his bald head to her breast and kiss the baby-soft scalp? Who else loves him as well as I?

I am under doctor’s orders to take care of  myself. I want to scream that the only way to take care of myself  is to keep him comfortable when there is little real comfort to be found. Dying is not a comfortable situation. For that matter, living is not all that comfortable most days. Most of us do not have our mortality glaring back at us from the mirror.

A Trying Time

I try so hard to stay up.

I try so hard not to let the water get from the back of my nose to the front of my eyes.

I try to pretend that everything is as it should be.

I am not fooling myself. I doubt I am fooling anyone else.

 

I really want to laugh but I think that the laughter is stuck somewhere in the rubble of my heart.

I want to think about something—anything—except my life and I fall back into the darkness and lose focus on the light.

 

This is the hardest thing I have ever done. I thought sitting with Joyce was the hardest. Maybe it was. I thought prostate cancer was the hardest. Maybe it was. This, though, is devastating. I don’t think I could feel worse if it were me dying. I think I would feel better if it were me dying. Sometimes, I think I am dying—at least the me who has been Mrs. Carroll for 25 years and the me who loves Lane beyond all words. The me who can find his hat in a crowded mall or hear his voice across a soccer pitch—that me—is in terminal pain.

 

The book says there are 7 stages of grief. Colleen says I am angry. I agree. I am angry—but is that one stage or seven? Will I ever not be angry again? Will I ever not cry at the goofiest things? Will I ever be able to just get from Monday to Thursday without wishing the world would end? Will I be able to live with so much of me dying with him?

Okay

Am I okay? No not today. When will I be okay? I wish I knew. I have never done this before. In fact, I never want to do this again. People say that this is better than being hit by a bus. I am not so sure.

 

I am glad to know the passwords and the account information. But I am not good at waiting. I am not good at waiting for pleasant things and this is not a pleasant wait. I want to be doing something, changing something, making everything alright—and there is absolutely nothing I can do.