We saw the surgeon this Friday afternoon for follow up. Having this appointment was the only reason I did not take Rich to the ER. That, and the fact that the slightest hint of going to the ER will reduce him to Fight/Flight mode in nano seconds.
Rich's confusion and hallucinations were a bit worse today. I've been trying to tell myself that we're dealing with severe sleep deprivation due to his need to urinate every two hours. With minimal effort I can reorient him. Up until today his hallucinations only occurred when he was dozing off. Today we seem to have graduated to a new level. I can reorient him to place—mostly, but not to time and his speech has become a bit more garbled, or am I just a bit more tired? It was a long damn day until 2:45 when we could head out for the doctor visit.
We walked into the waiting room and my heart sank. It was full to overflowing. There was a quick shift in intake and we managed to get seats. I sit frozen with fear that he will begin hallucinating that he is back in his high school play, dead friends have come to visit, circus performers are entertaining all gathered. I sit and knit—each stitch a prayer that I will not cry. I knit like I'm weaving a coccoon around us and Rich's imaginary friends. And the back up in the waiting room tells me we are running seriously behind schedule. I can't fix that. I focus on stitching the coccoon and using my witchy powers to manipulate time.
I remain existentially calm and subtly waft it in Rich's direction like a fart under the blanket. Now and then he holds his hands up like he's reaching for something and they tremble horribly, and I just reach over and pat his hands and he settles again. Just when I think I'm going to enter the next hour of waiting as peacefully as the first, another patient takes notice of Rich's hat and wants to engage him in conversation about his former employer. I knit harder. Turns out Rich used to pick up and deliver to this guy's former employer and the guy wants to connect all the dots of reminiscing. I have encountered this guy in this waiting room before. He needs to be in constant conversation with any hapless victim who doesn't know how to knit a force field. Rich struggles with the converation, but I quickly realize the other guy is clueless because his motive is not to hear but to be heard. I'm almost hoping Rich will introduce the guy to the dancers in the empty chairs.
Poor Dr A. He's expecting a routine post-op visit to remove the staples and check the J-P drain. I don't know if he feels my tension or reads my face. He asks “how's it going” and I reply “not well.” Despite Rich's distraction with the workings of his brain, I find it difficult to talk about him like he's not in the room. I'm trying to use my best ”nurse reporting to doctor” voice but there's a huge lump in my throat that's causing my eyes to leak. I can see that Dr A is listening to me and watching Rich.
We review the current med list and Dr A agrees it was good to stop the Reglan. He also agrees with Dr KP that nothing else on the list would be causing this. I practically beg him to tell me that this is just a matter of sleep deprivation due to having to toilet every two hours. All he can say is “well, that's probably not helping.”
Surgeons' exam rooms are for explaining the coming surgery and then checking their work afterwards. Any bad news is delivered in surgery waiting rooms or bedside in the hospital. Therefore, sitting in Dr A's exam room, I don't see a box of tissues anywhere. This is the one time I am without a handkerchief. I am never without a handkerchief. It is like an adult security blanket. I'm trying to discreetly dab my eyes with my sweater sleeve and focus on the little voice in my head that is screaming at me to TURN OFF THE TEARS.
Dr A is removing staples and checking drains and removing drains and trying not to look at me. He's very focused on Rich. Finally he explains that Rich might be peeing every two hours because he's not emptying his bladder. It's probably an enlarged prostate. Great. I was afraid the prostate was going to be left out of the problem soup! I wonder if it could be the MULTIPLE radiation doses between therapy, monthly CAT scans and x-rays. I say nothing. Then he addresses the elephant in the room. The first word started with an “M”, and as sure as I was that I would remember it, I don't. The second word wiped it out of my brain—encephalopathy. He explained it but it wasn't necessary. He said it was like the dementia a long-term alcoholic suffers with scirosis. The liver isn't working so the toxins stay in the bloodstream and effect the brain. Hence, the garbled speech, hand tremors and audio/visual hallucinations. THAT diagnosis really needs to come with a box of tissues. Of course, that's not an official diagnosis. That would require more tests. I wonder if he understands that my FMLA runs out in one week. Can we get all this under control in the next week?
Throughout the visit Rich interjects bright, lovely comments that have nothing to do with what's happening in our dimension. I get our prescription for Flomax, explain to Rich three times what is happening and we head home. I can finally let go with full sobs, and I'm still not the worst driver on the road. Rich is oblivious to the sobs which only ramps them up. Now and then he talks to his brother Ed who is sitting in the passenger side window.
God damn. We have jumped so many hurdles only to land each time in a deeper pile of shit. I'm falling, falling, falling. I feel the suction of the Black Hole of If Only, countered by the pull of the Black Hole of WHY?!.....perfectly triangulated by the Black Hole of What the Fuck?!? What is the spiritual equivalent of a Ph.D. In physics?
The doctors have been practicing for the last eleven weeks of my FMLA. Now I have one week to pick up the pieces and create a new world for us. Now it is Saturday afternoon. Rich is sleeping. He is sleeping like he's making up for every minute of sleep he has lost over the past eleven weeks. I trot up the stairs every hour or so to check on him. He wakes easily, no fever, I manage to get his meds and fluid into him. He sleeps peacefully, but with determination. Each time I head up the stairs I fear what I will find.
I struggle to understand the miracles that have brought us to this new room in Hell. As painful as this struggle is, I fear that if I stop struggling I will shatter. Truth is I'm not a fighter, I'm just stubborn. My father used to say “LisaRuth you are like a dog with a bone.” I just hang in, and keep on and wait. Rich has always teased me for my “lack of patience” because I can voice frustration to beat the band, but after all the venting, I continue to wait. My father said I “could wait a person to death”.
How crazy would I be to believe that there is another miracle in our future?
I have never felt this ground up in my life, and I've done serious time in the Grinder. I can't stop believing. “the nearer your destination, the more you're slip sliding away.....”
Saturday, October 2, 2010
Thursday, September 30, 2010
Memories
Memories are one of the purest examples of Balance. They are both blessing and curse. Sometimes in the same instant.
Memories carve your heart.
On November 7th we will celebrate our fourteenth wedding anniversary. It's been a VERY long honeymoon, and many people thought it wouldn't last. We laugh when we see commercials for online dating, certain that none of them would have put us together. It's hard to imagine that two people could be more opposite—Rich could make friends with a STOP sign; I can happily go weeks without human contact. Rich has the navigational skills of a homing pigeon; I would get lost in the bathtub if there weren't a faucet at one end. Rich has a Gestalt approach to organization; I float above the flow of chaos. Rich comes from a German family raised on the guilt of anything less than everyone up everyone's butt; I come from an Irish family that cherished the individual's privacy, sovereignty and autonomy. Rich worries about the future; I trust the Spirits to guide me. Rich reads and saves and catalogues the directions; I treat them like packing materials.
We met by chance, the circumstances are still a matter of wonder to us. Neither one of us wanted a relationship, we were both worn out from such effort and disappointment. Yet somehow we happened in spite of us, like two people standing apart in the surf until a strong enough wave comes along to smooth their rough edges and tumble them together. Freeze Frame!! It was nothing like “From Here to Eternity”. It was more like “When Harry Met Sally”.
Our first date was June 30th 1995. It was more the beginning of a friendship than a date—a playful joust that put us both at ease. Fast forward to our first Christmas, still “just dating”. It took me 2-1/2 hours to open my Christmas gifts. In becoming friends, we shared our childhoods and it meant little to me at this point in my life that my alcoholic parents stopped having Christmas when I was nine. In fact, I barely remember mentioning it in passing—truly, I had 31 years to get over it. Christmas to me was a date on the calendar, the sentimentality of Frank Kapra, and a hazy sense of hope and magic.
That Christmas I woke up to a room full of gifts. It was like a scene from “The Little Princess”.
The packages ranged from funny, funky, two dollar gifts to emerald earrings and matching necklace, and an amazing array in between. Each gift had significance—he explained why he had chosen each one, and each one was a testament to how he had listened to everything I'd ever said to him. And he had wrapped each one himself (quite well). I was overwhelmed to say the least, and speechless—which should be documented for posterity. When I was finally able to verbalize my question, he explained...”I just wanted to give you all the Christmases you never had.”
Holy mistletoe, Batman—what do you do with THAT?! The very next day he continued as if nothing remarkable had happened. A true gift since it was without strings.
Up until the past few months I have never opened a car door, or any door for that matter, in his presence. He has given me what my own parents were not capable of—unconditional love. He teases me, encourages me, believes in me when I'm afraid to believe in myself. He knows exactly when and how to take me by the scruff of the neck and sweetly inform me....”I love you, pupshn...and right now you're being an asshole.”
We have laughed our way through 98% of life's problems, and we have struggled, fought and clung to each other through the other 2%. We have marveled at, laughed at, learned from, accepted and thoroughly enjoyed each other's differences. In that, we have mined and cherished the Treasure of Us. I gave him the passion for gardening; he gave me a passion for golfing. He has taught me to be better with people; I have taught him to be still. We love to go garage saling together, to cook together, to enjoy British comedies together. We love to laugh together.
So now. 570 days into Stage Four Pancreatic Cancer / Neuro-Endocrine Cancer / Surgeries—Radiation—Chemo /This Room in Hell... how do I hold my memories without drowning in the pain of their misty, lavendar-scented fog?
Right now life with Rich is a surreal mix of a 3 year old with autism and an 83 year old with Alzheimers. I ache with the memory of being his wife as I struggle to be his nurse. In the darkest hours I curl myself around the tiny mustard seed inside me and refuse to surrender.
Memories carve your heart.
On November 7th we will celebrate our fourteenth wedding anniversary. It's been a VERY long honeymoon, and many people thought it wouldn't last. We laugh when we see commercials for online dating, certain that none of them would have put us together. It's hard to imagine that two people could be more opposite—Rich could make friends with a STOP sign; I can happily go weeks without human contact. Rich has the navigational skills of a homing pigeon; I would get lost in the bathtub if there weren't a faucet at one end. Rich has a Gestalt approach to organization; I float above the flow of chaos. Rich comes from a German family raised on the guilt of anything less than everyone up everyone's butt; I come from an Irish family that cherished the individual's privacy, sovereignty and autonomy. Rich worries about the future; I trust the Spirits to guide me. Rich reads and saves and catalogues the directions; I treat them like packing materials.
We met by chance, the circumstances are still a matter of wonder to us. Neither one of us wanted a relationship, we were both worn out from such effort and disappointment. Yet somehow we happened in spite of us, like two people standing apart in the surf until a strong enough wave comes along to smooth their rough edges and tumble them together. Freeze Frame!! It was nothing like “From Here to Eternity”. It was more like “When Harry Met Sally”.
Our first date was June 30th 1995. It was more the beginning of a friendship than a date—a playful joust that put us both at ease. Fast forward to our first Christmas, still “just dating”. It took me 2-1/2 hours to open my Christmas gifts. In becoming friends, we shared our childhoods and it meant little to me at this point in my life that my alcoholic parents stopped having Christmas when I was nine. In fact, I barely remember mentioning it in passing—truly, I had 31 years to get over it. Christmas to me was a date on the calendar, the sentimentality of Frank Kapra, and a hazy sense of hope and magic.
That Christmas I woke up to a room full of gifts. It was like a scene from “The Little Princess”.
The packages ranged from funny, funky, two dollar gifts to emerald earrings and matching necklace, and an amazing array in between. Each gift had significance—he explained why he had chosen each one, and each one was a testament to how he had listened to everything I'd ever said to him. And he had wrapped each one himself (quite well). I was overwhelmed to say the least, and speechless—which should be documented for posterity. When I was finally able to verbalize my question, he explained...”I just wanted to give you all the Christmases you never had.”
Holy mistletoe, Batman—what do you do with THAT?! The very next day he continued as if nothing remarkable had happened. A true gift since it was without strings.
Up until the past few months I have never opened a car door, or any door for that matter, in his presence. He has given me what my own parents were not capable of—unconditional love. He teases me, encourages me, believes in me when I'm afraid to believe in myself. He knows exactly when and how to take me by the scruff of the neck and sweetly inform me....”I love you, pupshn...and right now you're being an asshole.”
We have laughed our way through 98% of life's problems, and we have struggled, fought and clung to each other through the other 2%. We have marveled at, laughed at, learned from, accepted and thoroughly enjoyed each other's differences. In that, we have mined and cherished the Treasure of Us. I gave him the passion for gardening; he gave me a passion for golfing. He has taught me to be better with people; I have taught him to be still. We love to go garage saling together, to cook together, to enjoy British comedies together. We love to laugh together.
So now. 570 days into Stage Four Pancreatic Cancer / Neuro-Endocrine Cancer / Surgeries—Radiation—Chemo /This Room in Hell... how do I hold my memories without drowning in the pain of their misty, lavendar-scented fog?
Right now life with Rich is a surreal mix of a 3 year old with autism and an 83 year old with Alzheimers. I ache with the memory of being his wife as I struggle to be his nurse. In the darkest hours I curl myself around the tiny mustard seed inside me and refuse to surrender.
Wednesday, September 29, 2010
Enough!!
I saw my doctor Monday morning. MY doctor. The one who's looking out for ME. Our total visit could have been twenty minutes but it felt like two hours. She sits in a relaxed manner that immediately puts me at ease. The eye contact is amazing. At first I fear that if I open my mouth to speak I will burst into tears. The next thing I know I'm calmly telling her how sucky my life is and how frustrated I am that I'm failing on multiple levels. I HATE that I sound like I'm whining. She encourages every word. Instead of bursting into tears I relax. I'm not sure why. I find myself telling her things that I'm ashamed to admit; I allow myself to be vulnerable in the presence of someone outside my inner circle. A little voice in the back of my brain points out that she is not judging me. For the first time in months I feel that it's okay to need help. For the first time in 54 years I felt it was okay to be less than whatever I thought I should be and I was safe.
She's not a psyche doc. She's a GP. During her residency I felt she got short shrift because she was “too cute and too bubbly”. Her nurse knew she was good, but nobody—of importance—asks the nurses. On a couple of rare occasions I got to be her nurse when she did pap/pelvics. Once on a fourteen year old girl confused and frightened by the changes in her own body, unsure of her body image. I watched this doctor interact with this frightened girl, mother in the room, easing both of them towards transition. Another time with a frightened woman nearing menopause and all that entails, with family baggage of breast cancer and Alzheimers. Both times she blew me away with the effect she had on the patients—her knowledge, her skill, and when she doesn't know... she researches to beat the band. I watched her more closely than she knows and after three years determined that she is the doctor I want. And she's a blessing to me.
Today is Wednesday and I called her. Rich is hallucinating. It started a few nights ago with just talking in his sleep—not something he's done in the past. He went from zero talking in his sleep to long, one-sided conversations, off and on throughout the night. I wake up several times through the night to his soliloquy, grateful that he seems to be enjoying the encounter. Tuesday he came downstairs, and while I got his breakfast ready, he relaxed, closed his eyes and engaged in conversation with imaginary visitors. I woke him easily, he was slightly confused, and explained who was present that he was talking to. With a bit of effort I managed to convince him that it was just the two of us, and maybe he was dreaming.
Last night was non-stop interaction with his imaginary visitors. Considering the fact that he does not sleep more than two hours without needing to go to the bathroom, it's no wonder the man is suffering from sleep deprivation. When his bladder and bowel are at rest, he wakes up from the attempts to cough up a lung. He works mightily to bring it up, then it finally reaches the back of his throat and gags until it brings up his stomach. He collapses in exhaustion, his eyes are barely closed and he begins to converse with friends, family and strangers as he rides trains, drives trucks and wanders through familiar neighborhoods and foreign buildings. He narrates every step of his adventure, eventually falls silent for the long minutes that haunt me with thoughts and fears of the future. Just when I relax into the stillness, he races from the bed to the bathroom. He returns to bed out of breath and the coughing resumes.
This morning I was getting his breakfast ready when he begins to tell me about the goldfinch that just flew in and is sitting on the shelf above the TV. Again I try to orient him to his surroundings but this time he argues that he's right, and with his eyes wide open he points to the shelf and fails to understand why I can't see the bird. He gets up and moves closer and finally sees there is no bird. He begins to cry.
This is when I decided to call Dr P. I could understand confusion with sleep deprivation, but this was moving beyond the edges of sleep. Maybe it's some of the new meds? We talk and agree to hold the Reglan. The rest of the day continues close to the memory of normal.
Rich goes upstairs to get cleaned up and he wants to do it himself so I busy myself with long over due cleaning. I force myself to believe that we're dealing with sleep deprivation combined with Reglan, and I force myself to find the energy to clean. I vacuum, I scrub, I steam clean, and move furniture and try desperately not to think beyond the moment I'm in.
Hours later Rich comes downstairs, and seems bright and refreshed from his sponge bath and a short nap. His speech is still a bit mumbled, but better, and he's smiling. I fix him a fruit plate and his evening meds. I sit with him and we watch cooking shows on TV. Then he points to the treadmill in the corner and says, “look, pupshun....look at all those people coming in...” He's smiling in their direction, his hands move in gestures of stunted greetings and directions.
Gently I tell him I can't see them, and he looks at me with a mixture of fear and confusion. I'm rubbing his feet and finally he says, “I don't know what's wrong. I keep seeing people...all these people...maybe it's all these meds and once we're done with them I'll be okay again...” He's quiet for a bit and then he realizes that he forgot to shave. It seems to disturb him because he can't understand how he could have forgotten to shave. He seems to clear his thoughts and brightens and says he thinks that when the meds are done and his strength is back, things will be better....For a moment I'm relieved and then he points to the patio door and says, “Look pupshun, there's Billy Poston come from the dead to see me..... Why did you wait so long Billy Poston?” He's telling me to look at Billy's big smile, but I'm trying my best not to dissolve into tears. Billy Poston died years ago from colon cancer. I manage to explain that I can't see Billy Poston. Rich gets very quiet. I try to connect with him and I feel him trying to connect with me. Suddenly he wants to go up to bed. We make it to the top of the stairs and he begins to pant for breath. He says I'll have to help him because he doesn't have his glasses. I tell him he's wearing his glasses, and his fragile shoulders slump a bit more.
I get him into bed and he becomes cheerful and when I tuck his warmed rice pillow under his knees he jokes about being goofy, and tomorrow it will be better, and I gulp tears so that I can verbalize confirmation.
This is WRONG. This is so wrong. He was vibrant, strong and fighting for over 500 days. July 7th he had the chemo-embolism because he trusted those who were advising him. Day by day he deteriorated bit by bit, and day by day my concerns were dismissed. July 16th he was in the ER and I was advised to sign the papers to “let him go”. Day after day after day I have trusted and obeyed and done everything that was asked of me. What do I do now? What can I say now, that I have not said in the past that will get their attention? And I feel guilty for asking Dr P to help me deal with what other doctors have done. A doctor who listens will always bear the burdens of those who don't.
I envy Rich's delusions of friends and visitors and magical places. I wish I could be there with him.
I wish I could be anywhere with him.
She's not a psyche doc. She's a GP. During her residency I felt she got short shrift because she was “too cute and too bubbly”. Her nurse knew she was good, but nobody—of importance—asks the nurses. On a couple of rare occasions I got to be her nurse when she did pap/pelvics. Once on a fourteen year old girl confused and frightened by the changes in her own body, unsure of her body image. I watched this doctor interact with this frightened girl, mother in the room, easing both of them towards transition. Another time with a frightened woman nearing menopause and all that entails, with family baggage of breast cancer and Alzheimers. Both times she blew me away with the effect she had on the patients—her knowledge, her skill, and when she doesn't know... she researches to beat the band. I watched her more closely than she knows and after three years determined that she is the doctor I want. And she's a blessing to me.
Today is Wednesday and I called her. Rich is hallucinating. It started a few nights ago with just talking in his sleep—not something he's done in the past. He went from zero talking in his sleep to long, one-sided conversations, off and on throughout the night. I wake up several times through the night to his soliloquy, grateful that he seems to be enjoying the encounter. Tuesday he came downstairs, and while I got his breakfast ready, he relaxed, closed his eyes and engaged in conversation with imaginary visitors. I woke him easily, he was slightly confused, and explained who was present that he was talking to. With a bit of effort I managed to convince him that it was just the two of us, and maybe he was dreaming.
Last night was non-stop interaction with his imaginary visitors. Considering the fact that he does not sleep more than two hours without needing to go to the bathroom, it's no wonder the man is suffering from sleep deprivation. When his bladder and bowel are at rest, he wakes up from the attempts to cough up a lung. He works mightily to bring it up, then it finally reaches the back of his throat and gags until it brings up his stomach. He collapses in exhaustion, his eyes are barely closed and he begins to converse with friends, family and strangers as he rides trains, drives trucks and wanders through familiar neighborhoods and foreign buildings. He narrates every step of his adventure, eventually falls silent for the long minutes that haunt me with thoughts and fears of the future. Just when I relax into the stillness, he races from the bed to the bathroom. He returns to bed out of breath and the coughing resumes.
This morning I was getting his breakfast ready when he begins to tell me about the goldfinch that just flew in and is sitting on the shelf above the TV. Again I try to orient him to his surroundings but this time he argues that he's right, and with his eyes wide open he points to the shelf and fails to understand why I can't see the bird. He gets up and moves closer and finally sees there is no bird. He begins to cry.
This is when I decided to call Dr P. I could understand confusion with sleep deprivation, but this was moving beyond the edges of sleep. Maybe it's some of the new meds? We talk and agree to hold the Reglan. The rest of the day continues close to the memory of normal.
Rich goes upstairs to get cleaned up and he wants to do it himself so I busy myself with long over due cleaning. I force myself to believe that we're dealing with sleep deprivation combined with Reglan, and I force myself to find the energy to clean. I vacuum, I scrub, I steam clean, and move furniture and try desperately not to think beyond the moment I'm in.
Hours later Rich comes downstairs, and seems bright and refreshed from his sponge bath and a short nap. His speech is still a bit mumbled, but better, and he's smiling. I fix him a fruit plate and his evening meds. I sit with him and we watch cooking shows on TV. Then he points to the treadmill in the corner and says, “look, pupshun....look at all those people coming in...” He's smiling in their direction, his hands move in gestures of stunted greetings and directions.
Gently I tell him I can't see them, and he looks at me with a mixture of fear and confusion. I'm rubbing his feet and finally he says, “I don't know what's wrong. I keep seeing people...all these people...maybe it's all these meds and once we're done with them I'll be okay again...” He's quiet for a bit and then he realizes that he forgot to shave. It seems to disturb him because he can't understand how he could have forgotten to shave. He seems to clear his thoughts and brightens and says he thinks that when the meds are done and his strength is back, things will be better....For a moment I'm relieved and then he points to the patio door and says, “Look pupshun, there's Billy Poston come from the dead to see me..... Why did you wait so long Billy Poston?” He's telling me to look at Billy's big smile, but I'm trying my best not to dissolve into tears. Billy Poston died years ago from colon cancer. I manage to explain that I can't see Billy Poston. Rich gets very quiet. I try to connect with him and I feel him trying to connect with me. Suddenly he wants to go up to bed. We make it to the top of the stairs and he begins to pant for breath. He says I'll have to help him because he doesn't have his glasses. I tell him he's wearing his glasses, and his fragile shoulders slump a bit more.
I get him into bed and he becomes cheerful and when I tuck his warmed rice pillow under his knees he jokes about being goofy, and tomorrow it will be better, and I gulp tears so that I can verbalize confirmation.
This is WRONG. This is so wrong. He was vibrant, strong and fighting for over 500 days. July 7th he had the chemo-embolism because he trusted those who were advising him. Day by day he deteriorated bit by bit, and day by day my concerns were dismissed. July 16th he was in the ER and I was advised to sign the papers to “let him go”. Day after day after day I have trusted and obeyed and done everything that was asked of me. What do I do now? What can I say now, that I have not said in the past that will get their attention? And I feel guilty for asking Dr P to help me deal with what other doctors have done. A doctor who listens will always bear the burdens of those who don't.
I envy Rich's delusions of friends and visitors and magical places. I wish I could be there with him.
I wish I could be anywhere with him.
Sunday, September 26, 2010
I'm Trying
FYI...I AM painfully aware that my pity party is dragging on way too long. I'm working on it. The good news is YOU can opt out of this blog.
Every day I wake up and think “when am I going to get with the poopy program?!?!?!?” Seriously! At some point doesn't the sheer repetitious routine of this make it easier?
I must be a slow learner. Suddenly I can't seem to manage four times daily blood sugar testing. WHY? Because I'm an idiot who allows him to sleep undisturbed so keeping to a schedule is becoming increasingly difficult. Every doctor who saw him in the hospital advised that we do five to six small meals daily as opposed to three so there would be less stress on his digestive tract, he would feel better and probably be able to take in more nutrients. The hospital, however, continued to bring three trays daily and continued to threaten a tube feed because he wasn't consuming enough.
I am trying to serve five nutritious meals daily, with a bedtime snack. So riddle me this, Batman. When do I test the blood sugars and administer the insulin dosed three times daily?
I've been sleeping on the couch since he came home. I tell him it's because it's cooler downstairs and I can keep the window open without freezing him out.. The truth is, it's amazingly uncomfortable, but I can't stand sleeping next to the person I miss. I've tried and it just makes me cry.
Every morning I wake around 5 am, sit with my coffee and contemplate my nightmares. You need to be very careful what channel you sleep to. Obviously the Sci-Fi channel would be a “no”, but never underestimate the Learning/History/Science/PBS channels. Holy Shit they can run some seriously disturbing stuff at 2 am and without warning you're dreaming about reptiles, Nazi prison camps, diseases, wars—it's insane what your subconscious can do with that audio input! If I sleep with the music channels I dream about Rich, romance and lovely scenarios that make waking up an instant descent into depression. So for sleeping, my favorite cable flavor is the shopping channels. Totally benign input, it's all happy stuff, and no matter how much I spend in my dreams, I wake up with my bank account in tact.
Fully awake I can prepare for the day. I consider the fact that I should get on the treadmill, and sometimes I manage that. No matter how hard I try, each morning the entire day floods over me as a replay of the day before and I feel my shoulders begin to ache and weaken under the weight.
This morning Rich came downstairs. On his own. A full hour before I usually have to roust him to keep his meds on schedule. I get his blood sugar and give him his morning meds, and get more coffee while I try to wrap my head around the major shift in what I am trying to process as normal... Before I can figure out what to cook, he's up and getting himself the piece of pumpkin pie that Alicia brought him. He insists on getting it himself and not wanting me to “wait on him” so I sit. I hear him add Redi-whip to his pie. As the mother of three sons, I can hear the violation of a Redi-whip can from the other end of the house. Holy empty calories, Batman, that's a whopping dose of Redi-whip he's squeezing out.
I try to focus on the magical egg cooker now discounted with free shipping and handling while I listen to Rich put the whipped cream away, rattle through the silverware drawer and shuffle with his cane to the couch beside me. I'm trying not to hover, I'm trying to give him space, but I can't help but notice that he is sitting beside me dead stone still. I look over and see that he is holding a plate of pumpkin pie completely smothered in whip cream in one hand... in the other hand is a pair of scissors. I don't know whether to laugh or cry. I wait for him to decide for me.
When he holds the scissors up, grins and says “what was I thinking?” I know it's okay to joke about it. I get him a fork and we move on.
He wants to help me make the grocery list. He wants to be engaged, and he's trying to return to our routine of shopping and cooking together. I can tell that he's trying really hard to take responsibility and eat well and regain his strength. Once the list is complete he tells me he's going to get cleaned up and ready to go. Really?! Could you just sharpen a pencil and stick it in my eye?
Like to break my heart to tell him that he is so NOT going to the grocery store with me. Dude. I know you're not reading my blog, but you need to trust me on this. I could tell he was hurt but he quickly realized it would be easier for me if he stayed home. I told him that only one week from surgery we just couldn't risk him being exposed to germs. He pretended to believe that that was the reason, and I pretended to believe that he believed me. That's where we are now.
If you have to shop on the weekend, you need to go between 9 and 11 am on Sunday morning. I intentionally shop during this Heathen Window, when all the good Christians are in church because that's when the grocery store is the least crowded and the most civil. Sonovabitch, this morning they must have been busing in the heathens because I am struggling with the crowd. Or maybe I'm just cranky. It is NO fun grocery shopping without Rich. He made it fun. In the days B.C. (before cancer) he made grocery shopping a joy. If “Goodbye Girl” or “As Time Goes By” played, he would take me in his arms and dance me a time or two around our cart. He would make faces and noises at the toddlers in the carts that passed us and they would laugh. He was always smiling.
This Sunday morning the grocery store was awful, sad and lonely, but I managed. I don't mind the work, the effort, the struggle. He's worth all of it and then some. I just miss him. It is so painful to look at hm and see a stranger.
Wow. Way to fail miserably at folding the tent on the pity party.
I'm trying. And that makes me laugh. One of many of our inside jokes... When I was at the point of frustrating him most I would smile and say...“I'm trying....” and he would grin and say, “Yes dear, you're very trying”.
Every day I wake up and think “when am I going to get with the poopy program?!?!?!?” Seriously! At some point doesn't the sheer repetitious routine of this make it easier?
I must be a slow learner. Suddenly I can't seem to manage four times daily blood sugar testing. WHY? Because I'm an idiot who allows him to sleep undisturbed so keeping to a schedule is becoming increasingly difficult. Every doctor who saw him in the hospital advised that we do five to six small meals daily as opposed to three so there would be less stress on his digestive tract, he would feel better and probably be able to take in more nutrients. The hospital, however, continued to bring three trays daily and continued to threaten a tube feed because he wasn't consuming enough.
I am trying to serve five nutritious meals daily, with a bedtime snack. So riddle me this, Batman. When do I test the blood sugars and administer the insulin dosed three times daily?
I've been sleeping on the couch since he came home. I tell him it's because it's cooler downstairs and I can keep the window open without freezing him out.. The truth is, it's amazingly uncomfortable, but I can't stand sleeping next to the person I miss. I've tried and it just makes me cry.
Every morning I wake around 5 am, sit with my coffee and contemplate my nightmares. You need to be very careful what channel you sleep to. Obviously the Sci-Fi channel would be a “no”, but never underestimate the Learning/History/Science/PBS channels. Holy Shit they can run some seriously disturbing stuff at 2 am and without warning you're dreaming about reptiles, Nazi prison camps, diseases, wars—it's insane what your subconscious can do with that audio input! If I sleep with the music channels I dream about Rich, romance and lovely scenarios that make waking up an instant descent into depression. So for sleeping, my favorite cable flavor is the shopping channels. Totally benign input, it's all happy stuff, and no matter how much I spend in my dreams, I wake up with my bank account in tact.
Fully awake I can prepare for the day. I consider the fact that I should get on the treadmill, and sometimes I manage that. No matter how hard I try, each morning the entire day floods over me as a replay of the day before and I feel my shoulders begin to ache and weaken under the weight.
This morning Rich came downstairs. On his own. A full hour before I usually have to roust him to keep his meds on schedule. I get his blood sugar and give him his morning meds, and get more coffee while I try to wrap my head around the major shift in what I am trying to process as normal... Before I can figure out what to cook, he's up and getting himself the piece of pumpkin pie that Alicia brought him. He insists on getting it himself and not wanting me to “wait on him” so I sit. I hear him add Redi-whip to his pie. As the mother of three sons, I can hear the violation of a Redi-whip can from the other end of the house. Holy empty calories, Batman, that's a whopping dose of Redi-whip he's squeezing out.
I try to focus on the magical egg cooker now discounted with free shipping and handling while I listen to Rich put the whipped cream away, rattle through the silverware drawer and shuffle with his cane to the couch beside me. I'm trying not to hover, I'm trying to give him space, but I can't help but notice that he is sitting beside me dead stone still. I look over and see that he is holding a plate of pumpkin pie completely smothered in whip cream in one hand... in the other hand is a pair of scissors. I don't know whether to laugh or cry. I wait for him to decide for me.
When he holds the scissors up, grins and says “what was I thinking?” I know it's okay to joke about it. I get him a fork and we move on.
He wants to help me make the grocery list. He wants to be engaged, and he's trying to return to our routine of shopping and cooking together. I can tell that he's trying really hard to take responsibility and eat well and regain his strength. Once the list is complete he tells me he's going to get cleaned up and ready to go. Really?! Could you just sharpen a pencil and stick it in my eye?
Like to break my heart to tell him that he is so NOT going to the grocery store with me. Dude. I know you're not reading my blog, but you need to trust me on this. I could tell he was hurt but he quickly realized it would be easier for me if he stayed home. I told him that only one week from surgery we just couldn't risk him being exposed to germs. He pretended to believe that that was the reason, and I pretended to believe that he believed me. That's where we are now.
If you have to shop on the weekend, you need to go between 9 and 11 am on Sunday morning. I intentionally shop during this Heathen Window, when all the good Christians are in church because that's when the grocery store is the least crowded and the most civil. Sonovabitch, this morning they must have been busing in the heathens because I am struggling with the crowd. Or maybe I'm just cranky. It is NO fun grocery shopping without Rich. He made it fun. In the days B.C. (before cancer) he made grocery shopping a joy. If “Goodbye Girl” or “As Time Goes By” played, he would take me in his arms and dance me a time or two around our cart. He would make faces and noises at the toddlers in the carts that passed us and they would laugh. He was always smiling.
This Sunday morning the grocery store was awful, sad and lonely, but I managed. I don't mind the work, the effort, the struggle. He's worth all of it and then some. I just miss him. It is so painful to look at hm and see a stranger.
Wow. Way to fail miserably at folding the tent on the pity party.
I'm trying. And that makes me laugh. One of many of our inside jokes... When I was at the point of frustrating him most I would smile and say...“I'm trying....” and he would grin and say, “Yes dear, you're very trying”.
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