Sleeping on the Diagonal

While I plan for most of my posts to be more on the “see the lighter side” I felt compelled to share this that I wrote to cope with helping my grandmother die. If the whole point of this endeavor is to be honest and explore why I am exactly who I am, its important to share the times when there was no joke to be made. When there was no way for me to gloss over and crack wise to cover the pain.  One of the times it truly sucked to not have someone to turn over to at 3 am when I couldn’t sleep and I just wanted to be wrapped in someone’s arms.

30 HOURS

08:00                     I walk in the front door to find the rotting seafood smell is back. In the hospital you let them give you antibiotics and antifungals and a host of other remedies. Let them poke you and turn you, wheel you to X-Ray and ECHO. The briny smell of decay had faded. The bright lava skin stretched over your legs had dulled. But then you said “Take me home.” They said your heart was too weak without surgery and you said “Take me home.” So we did. Two days ago I sat with you here in the living room, perched on a hard kitchen chair, feeding you ice cream as you lay in your Hospice hospital bed wedged between the fireplace and the picture window. There was no smell then. I walk in that front door and when I smell the dirty underside of the bay I know.   One look at your catheter bag and my stomach clenches even more. Pale yellow is replaced with dark sludge, a coffee pot of color that had been left to burn. Put on a bright face. Kiss you hello.

09:00                     It started raining. I open the front door wide, letting the clean drops splash through the screen door. Secretly I am glad for the rain. Glad for the gentle breeze that wafts in the fresh air. I wonder how long it takes after the kidneys give up. Squash that down with a giant gulp of rain scented air and go back to my wooden perch tucked at your side.

11:00                     I can’t take the silence. Nothing but the steady beat of the rain and watching your chest to see if stops rising. “Grandma, do you want to watch a movie?” The eyelids flutter but don’t open. “You can put one in if you want,” you croak. I don’t want. I want to make you smile. I want to erase all the times I let your calls go to voicemail. I want to say I’m sorry. I want to tell you I never blamed you for the man your son became. Instead I say “How about some music?” I put on Elvis, songs of his thin idol years because I always thought he was your favorite. Remember how you taught me the twist on the orange shag carpet of the den at the old farmhouse. Suck it up and pour another cup of coffee.

12:00                     I’m washing dishes when my grandfather comes in for lunch. He needed to go back to his cows, to feeding heifers and baling hay. You’ve been home five days and he needed to feel grain slip through his fingers instead of hear his wife of 62 years whimper. “Elvis! Why didn’t I think of that!” he exclaims as he makes a sandwich. We try not to stare at the oral morphine syringes on the counter between us.

 

13:30                     The hospice staff pours in with the rain, three of them wiping their sensible shoes on the mat. The plan is to turn and clean and treat. I have never met them. I live an hour away and am here to fill in the care schedule because I’m not due at work until the night shift. It is the first time the physician assistant is here. I listen to them discuss the wounds that were present the last visit. One of them mentions the guilt your son felt about forcing you to go to the hospital in the first place. I bite my tongue. We gather around your bed, drawing the curtains closed, blocking your line of sight to the birds you love to watch. We turn you, three of us on one side, the bariatric bed lurching as we heft you to expose your back. I turn patients all the time working in health care, have smelled that briny smell of infection and death before. But I am not prepared. The edema in your legs has burst through the cell walls seeping out in a steady stream to soak the sheets under the blanket you wouldn’t let me move. It has worked all the way up your back, nasty little opportunistic fungi jumping at this delicious buffet. A trail of raw, red skin traces up your calves, over your buttocks and up to your shoulder blades. My stoic grandmother. All you said before was “My back itches.” Now you are screaming “Hurry! Hurry! Please hurry!” I bite my lip. Don’t let you see me cry. Don’t. Don’t. I can’t stop it. I can’t just suck it up anymore in this moment. I am helping to hold you, sobbing silently so you can’t hear me. I can’t stop the heaving of my shoulders though. The hospice nurse leans over and tells me to go if I need. I gasp and run. I’m sorry. I run to the sun porch with the hot tub you’ve never used. I can’t stop the sobs. I fling my arms around, flapping them up and down like I haven’t since I was eleven.   I would get so frustrated as a kid I would flap like a bird, not knowing if I was trying to shake out the anxiety or just plain fly away. I try to still my arms. I take my glasses off and rub the salt off them. I breathe. I breathe slower. I go back to the living room. You are resting on your back with the soiled bedding wadded under you, a brief reprieve until we turn you the other direction. Someone asks if there is antifungal cream in the house. I whisk to the bathroom wanting to be useful. Tear through the cabinets and come up with half a tube of Lotrimin with a questionable expiration date. The hospice nurse tells me its ok I had to leave. “We have to care for the caregiver,” she says. I feel like a failure. We finish the bath, the cream and tuck you in. Hospice asks if Elvis is your favorite. “No,” you say, “Everyone just thinks so, so they give me Elvis stuff.” I change the CD to Country Boogie. You fall asleep. I open the curtains and stare at the rain.

16:30                     Pop is home for the day. You are still asleep until we take up residence by your side, me on my perch and him stiffly balancing on the edge of the picture window shelf. We look at each other. We look at you.

17:20                     You start to hitch. I raise my bowed head to see your eyes fly open and flutter. The irises are rolling, pin-balling in the sockets. I offer you oxygen from the tank in the corner and you don’t respond. “We should call Junior,” my grandfather says. Inside I clench again.

17:50                     Your son bursts through the front door I had finally closed because the air had begun to chill. All 6’3”, 300 plus pounds of him with his fifth, or maybe the sixth, fiancé bobbing behind him. I lost track of his women long ago. He blusters. He accuses. I steel myself to deal with this man I spent the last decade avoiding at all costs. At the cost of seeing you. He demands. Why haven’t we called Hospice already?! His bulk looms over the foot of your bed. I release your hand. The fiancé had not given me any such instructions about doing that in the morning hand-off. Pop throws up his hands and my Mighty Mouse farmer retreats to his bedroom muttering that he can’t do anything right. I measure my voice. “This just started. He panicked and called you 15 minutes before you were due here anyway.” Your son mutters and walks away. The fiancé is already on the phone. I hear her murmurs, this to-be stepmother I just met. I don’t want to like her. I hate that I do.

18:30                     The hospice nurse from earlier is back. She listens to your lungs and belly, tells us you are filling with fluid in the abdomen but not the lungs for now. I sit there on my perch holding your hand. I picture the wash of fluids surrounding your liver, squeezing your dying kidneys to little beans, pressing up, up and away on your diaphragm. I text my half-sister and tell her to come sooner than she planned. Come now. My little sister, the one with the kind, open, forgiving heart I never had. The one that spends every week with you. The one that sends your son a Father’s Day card. The hospice nurse says it will be within the next 48 hours.

 

19:30                     I am in the guest bedroom. Steeling myself. Collecting myself. I think I am under control to call work and tell them I will not be in. A friendly voice comes on the line and suddenly I am a sobbing mess again. I didn’t know a person could have so many tears.

 

19:50                     My sister is here. I have to be the strong big sister. I spent so much time avoiding our father I didn’t realize how much of adult she has become. She is stronger than me and she doesn’t know it.

 

20:30                     Your sister is here. One of the thirteen siblings. My favorite. She tells you it’s ok to let go. I bite my knuckle now so you don’t hear my cry.

21:00                     Your other sister is here. The one that had an affair with Pop. My sister grips one hand and I grip the other while she sits on the couch behind us shaking her head looking for some kind of deathbed absolution for her sins. My stoic grandmother. You don’t give it.

02:00                     The siblings have left. Junior and his fiancé are sleeping in the guestroom. Sis is sitting on the shelf of the picture window holding your left hand. I am at my kitchen perch gripping your right. My stoic grandmother who wouldn’t so much as take a Tylenol is gulping down the oral morphine. Sis gives them to you, murmuring the encouraging words I can’t get out. I am closed up. Locked out. My throat constricts. Pop comes in. I try to move to give him the perch but he stops me. He leans over and strokes your hair. Tells you he will stay until the end. He didn’t always love you right but he always loved you. Keeps saying “I’m here. I’m right here.” I’m biting my knuckle again. You are nodding and almost smiling. A gentle bob up and down every time he says “I’m here. I’m not going anywhere.” We’re all crying now and you say “Don’t cry Jen.” Don’t cry Jen. Don’t cry my beautiful, kind, open-hearted sister. You can hear her. She’s the baby of the family, the youngest grandchild with the biggest heart. I can take care of myself. I’m the strong, oldest one. Don’t cry Jen. I bite my knuckle so hard I draw blood, a thin line of red, the saltiness filling my taste buds.

03:30                     I jerk awake, my back afire from hunching on this kitchen chair. My grandfather has retreated for a bit. My sister is asleep on the window ledge, her hand still entwined with yours. I tell her to move to the couch. She does.

04:00                     I hear a grumble from your bowels. I hope it is just gas. I hope every whimper will be your last. Please. Please. I get you a sip of water and your eyes close again to whatever world you are remembering. Junior is awake. He places a heavy hand on my neck and I let him because he is your son and he is grieving too. I cringe and still myself. I do not look up. I do not shake him off like every muscle in my body wants to. I let him pretend to offer comfort to his daughter and I tell you to squeeze my hand when it hurts. I am being squeezed on both sides and I don’t know if I can bear it. But I do. Junior leaves to go to work for a few hours. I’m too exhausted to seethe.

05:00                     I’ve retreated to a recliner. My back couldn’t take the perch anymore. My heart couldn’t take the ache. Pop slips into my perch and I close my eyes.

07:30                     We all drink more coffee.

10:00                     The house is full. Your sister that I like is back. She said she couldn’t watch another sister die but her love is stronger that her dismay. Even Junior is back, his girth over-spilling the recliner I had taken refuge in only hours before.   I had woken to Pop telling me again he couldn’t do anything right. I told him there is no right or wrong here. I hope I’m right. He said no one would come see him after she’s gone. I told him he was wrong. I hope I’m right.

10:30                     Hospice is back. This time it’s just an aide since its Saturday. I tell my sister if she doesn’t want to be here she should go. I don’t want her to see how awful and ravaged our grandmother’s skin is. How the infections have burrowed their way in, taking root and taking over. She says you would do it for her. I’m so proud and so sad I think I might burst. We tell our grandfather he should take a ride on his motorcycle but now he won’t go. He and Junior sit on recliners in the other room while the women turn you and clean you. The grumbling was more than gas. We run for warm towels. The hospice aide takes one look at your back with its red tendrils of fungi and decides we’ll go for comfort only instead of full treatment. It’s only a matter of time. We hoist you and turn you, bathe and powder you as quickly as possible while you shout “Hurry please!” in the desperate shrill little girl voice I’d only heard once before when we tried to turn you yesterday. After we are all exhausted. You sleep. Pop says “I don’t know how you girls do it.” I don’t know how he listened to it all. The hospice aide gives us details on what will happen when you go. How there will be a white froth, to turn your head and have a cloth ready.

12:45                     I am rank from the clothes I’ve been wearing since yesterday. I have medications I missed but a two hour round trip is too far. I don’t want to leave but I can’t stand to be here anymore. I need a shower. I need clothes that don’t reek of fear sweat and sorrow . It could be another 24 hours and I argue with myself. It is the 10^th anniversary of my maternal grandmother’s death. If there is any justice it won’t be today. Please let your suffering end but I will break if it’s today. I am selfish. I decide to go to my mother’s, only a five minute drive away. Shower. Hug her, this woman who gathered the courage to leave your son but made sure I still knew you. Five minutes away. That’s all.

13:17                     I miss a call while I’m in the shower. Miss Junior leaving a message that I should come back while I’m letting the weak water pressure wash away more tears.

13:20                     I am drying off when I notice a missed call on my phone I never took off silence. Throw on the borrowed clothes of my mother that are two sizes too big but don’t smell of decaying seafood and death. I try to get dressed so fast I’m tripping as I leave the bathroom. No time to explain, still listening to the message as I lurch my car into gear. Dialing your son’s foreign phone number, hearing him say you’re gone when I’m only 2 minutes away. I left for 15 minutes. 15 minutes. I barely throw the emergency brake on before I am ripping the keys out of the ignition. Here’s my little sister in the driveway, pacing and wailing. Our Jenny Wren looking so lost. I hug her with everything I have to give. My strong, kind, open forgiving adult little sister that’s so much better than me and she doesn’t know it. We just hug before she takes me in. “It’s like she waited because she knew how hard it will be for you today,” she says. My beautiful, tall blonde sister that looks nothing like me. My two grandmothers gone exactly a decade apart, the women who helped to shape me in this world. You are there in the rented hospital bed in your living room. Your sister had tucked a washcloth under your chin. I hug everyone. We are together in our grief regardless of what separates us. My sister and I sit on the picture window ledge holding hands when your daughter pulls up. She’s been driving from 4 states away for hours. She takes one look at us in the window and bows her head. Junior goes out to greet her. Hospice is here again. Your daughter gets a cup of coffee and goes out back to smoke. My sister, your sister that I love, my step-mother to-be and I help hospice turn your body to clean you for the funeral home. I didn’t know a funeral parlor wouldn’t take a body like yours if it isn’t cleansed. My aunt stands in the doorway with a cup of coffee in her hand while we bathe your cooling body and says “I don’t know how you ladies do it.” I try to let it go because you are her mother.

14:00                     Thirty hours since I showed up to fold a few towels and feed you some more ice cream. The funeral parlor is here already. Everything with the business of burying moves fast once the business of dying is done. It’ll be hours until I go home and collapse. The next week will be filled with packing up your clothes, holding Pop’s hand through the funeral, letting Junior hug me. Picking out flowers. Combing through pictures of you laughing for the memorial. But for now it’s just that the business of dying is over. It’ll be a month until I grieve fully. A month until I get past the business of dying and burying you. A month until I stop trying to distract myself and fooling myself with getting “back to normal”. In this moment it’s been 30 hours since I walked through your front door. It’s been 29 hours since I wondered how long a body can last after the kidneys give and 12 hours since Pop told you he wouldn’t leave until the end. It’s been 10 hours since your son left to go to work while you lay dying and zero hours since I’ve forgiven him for it. I lived and loved you for over thirty years so for now 30 hours doesn’t seem nearly enough to say good-bye.