Vacuuming ants off the table. It’s what I do now. Daily, let me add. They are there not because of the flowers I cut for her yesterday, (as she chooses to believe), but, because there is always food on the table, or, around the table, or, under the table, (found a half an orange there yesterday, desiccated and chewed clear of its pulp). Food lies in small unbitten nibbles everywhere around her make shift hospital bed. All have been placed there sporadically, sprinkled throughout the day. There for encouragement. Should the fancy strike her. Which these days it rarely does. The ants keep her honest at least.
The hyporexic is my mom. She has stage 4 metastatic breast cancer. She needs a lot of help these days. The whole COVID crap has made dying a much lonelier event than anticipated. I have become the nurse and the house cleaner. My dad and my husband are the only others on her visitation list. It’s a small tight group. We all know too much about each other. It leads to fighting most of the time.
Hence, I vacuum. Or bide my oversight time cleaning, often.
Like all things in these days nothing is easy. To get to the vacuum I had to beat back the dust around and within the broom closet. To get it to turn on it had to unbury it from the cobwebs that quarantined it. To get to that I had to uncover the post Katrina WHO deposit of stacked bottled water that could serve Flint for the remainder of the year. This is the broom closet of a husband who never had to do housework before his wife fell ill, and, the paranoid couple who refuse to drink tap water after moving from a farm with well water. Trying to convince them that there is at least some oversight on the town water supply versus the farm well that I once saw a dead ground hog floating in is like yelling at the tornado to stop at your doorstep’s threshold. There is a mole hills mountain of poetic justice and politically driven pardons sitting here at my feet these days. I too often have to find the comic relief in the utter aging madness I have fallen into.
Quarantined with a dying person inside their house is a never-ending loop of t.v., feedings, medications, questions about if its ‘time again?” for medications, and self-checking her vital signs. The t.v. is tuned to CNN non-stop. It is her way she will tell you, of “still being a part of the world.” To which I remind her that that’s going to shit too. Maybe don’t turn there for joining society and being a part of the whole we left soo many weeks ago.
At her house I clean, like a mad person. It's my ADD that I cannot apply to CNN and the myriad of measured pills in their clock driven doses. Providing some degree of order, civility and modicum of acceptance that the world will go on around me is placed in sanitizing swipes at cobwebs too distant for her to see never the less attempt to reach.
Food is a battle. Like all aspects of her life now. She’s is wasting away. She is so thin and weak she can no longer stand without metallic wrap around support and hand grips. Shuffling from across the room to the small bathroom she exists between. My mom wants endless hours of all-day small talk. The escape she yearns for outside of the destruction her body is catabolizing. I am not a chatterer. I never have been, and asking me to figure that out for the last inning of the last game is too hard to go back to parochial school for. There is no room for normalcy here. I cannot seem to embed it in the cleaning to provide relief to the endless news cycles. And yet I continue to clean. Keep moving. Try to be productive and helpful as I uncover artifacts from a once functional home. Small items cause major melt downs. A half-eaten pie sitting useless in the fridge is a day long discussion on appropriate resolution. Obsessing on triviality and the time consumption it fills the day with is the reality of four people in too close proximity for too long already and no end in sight.
“I cannot always be just as you want me to be.” I know it is not what she wants to hear. She wants me to be like the rest of her cheering squad. Professing love, sending her peace and Gods warm embrace. Telling her ‘this too shall pass’ and reminding her of all the beauty that surrounds her. The blissful passivity to all things holy and predetermined. The baking squad sitting on the bench proud to be sitting this one out. Gleeful to let the uniformed players who actually showed up for practice and have a discipline to put the blood sweat and tears in. I am not one of them. I don’t even know if I could become one? A spectator in her last hurrah.
This is the horrible place I am right now. Standing at the intersection of letting go and surrendering the hope I felt I would never unclench. She has stopped trying. I am not sure if it is all exhaustion that caused her to surrender her hope, or, the pain that her fear gave up. But all are gone.
Today was the day I decided I had to come to terms with goodbye being only a few moments away. For as much as we are so similar, my mother and I, I am most assuredly the human of voicing and reasoning while she is the soul of submission and omission. She won’t ever tell you what is right at the tip of her tongue. She will never confess. She will never say she is dying. She won’t give that up. She will only remind you with her every single action that she checked out a long while ago. I can look back now and know exactly when that happened. We were all sitting around her hospital bed when the doctor came in to visit, one week into her hospitalization to manage pain trip, to break the bone scan findings to her. “It is bad…. (long,,,, long pause…..)…. Really bad. She has cancer everywhere.” Yes, these were his exact words. She swallowed the words slowly and lowered her pale worn face and gave up. She had her pass to never doing anything again that she didn’t want to and she has ridden that pony into where we are today.
That discussion and discovery was over two months ago. At that time it had been over two months since her biopsy came back as cancerous. We now knew she had advanced metastic cancer in all of her bones which no longer allowed her to be candidate for chemo or radiation. They gave up on her as being too late, and she gave up on them as offering too little. She left to go home to try to come to terms with the cards dealt.
Today we are at her monthly oncology check-up. She was wheeled in, after being carried from her home to my car. COVID screening threw a new twist onto today's visit. We were met at a distance by greeting staff to check our temperature with a forehead thermal scan and provided and required to don a mask and gloves and asked a series of questions to try to insure we were not infected, or around anyone who was. Even the hospital is afraid.
Two floors up we were met by the oncology nurses. Check in includes the cursory checklist on the clip board. They took her blood pressure and temp again. We collectively lifted her on to the scale and waited. As a veterinarian the scale is one of the most important diagnostic tools I rely upon. It doesn’t lie and it reveals a wealth of clues if you have been diligent in recording it. When the digital screen came to its stand still even the nurse wouldn’t say the value aloud. It was another long pause in a diagnosis of too many already. She recorded it and moved on. The scale read 76. As in 76 pounds. She is 74 years old. We started this collision course in December of 2019. Five months ago at 106 pounds.
I saw the blue numbers flash, swallowed my silence and gave up. Today I have lost hope for her. That hope for her chance to ever function again in the capacity that I have known her has passed.
It has been months of days that were up for as many times as they were down. She is painful, almost uncontrollably painful. She is on higher doses of opioids than I ever thought were humanly possible, especially for the fact that she barely ever hit a hundred pounds in her whole lifetime. She is not, as her oncologist put it today, “opioid naïve.” I was almost proud of her. It might be the first time she has ever surprised me with a title she didn’t earn from years of perfecting a skill. She is an amazing artist. She has always been an incredibly talented artist. She can sketch, paint, imagine any beauty into a canvas. Her work is all around us. At the vet clinic. Every room of my house, but a hard-core opioid aficionado I never saw destined for her resume. Today she was classified as becoming immune to their affects. Her body was acclimating to them. Starting to blow them off as inferior, paltry, innocuous. Today we carried her out of the house. Wheel chaired her into the hospital. Pushed her in a wheel chair into every room, every exam, and every treatment. She is a skeleton you can push without effort and pick up without exertion. She is bones and an oxygen pump spewing little hiccup-coughs into her nose. Her lifeline to failing lungs. She will need more drugs, at higher doses to get the pain at bay this time. Higher doses, shorter time frequencies and more side effects because of them. They will take away her pain as the collaterally steal her gut function, cognition, and conscious time.
There is nothing left for her to give up. There is only one last designation left to be made. No one wants to call it, although everyone mentions it. Hospice is all that is left for her. We can discuss a 24/7 assisted living home. A place that can help her with the things she can no longer do by herself. Bathe, prepare food, get water, manage stairs to get to her kitchen, her shower, or her bathroom. She is here. She won’t face it. She needs more than her family can give her. Once she lies down and cannot get up, which is likely at 75 pounds, that is the only option next to hospice. We got here so fast I cannot masticate the bitterness and the toughness of it. But the care facilities are all COVID magnets now. Sending her there surely leaves her a defenseless victim to this? Which is worse? I don’t even know?
My dad is seemingly un-phased by the whole thing. The unraveling and the diminished ambulatory, unhappy being she is now. He is short tempered, over-burdened, and oblivious. I don’t know if this is a self-protective measure of avoidance? He goes through the motions and yet he doesn’t see the changes within her. “Hey, have you seen that bump on her back?” he announced yesterday.
“It’s her shoulder blade.” She is misshapen, misaligned due to a lifetime of scoliosis and the aging of osteoporosis. Her spine is “S” shaped and her shoulder has always been left elevated and prominent. She now lacks the 30 pounds to hide it.
The vacuuming leads to laundry. The monotony of never-ending laundry. Put in the dirty, smelly old people funk, and, POOF! Out it comes anew. Refreshed.
“Mom, we have to figure this out?” I implore her. I don’t think she cares to entertain my burdened inquisitive agenda. I think I am just speaking out loud. I think I am being my own therapist. She already has her plan laid out. The analytical doctor used to non-speaking patients hiding their illnesses and masking their diseases is who I am at my best. She is another patient puzzle to solve. I can solve this. It’s a cancer patient like so many I have had before.
And yet, we haven’t figured her shit out. Not her treatments, not her desires, not her abilities, Nothing. That’s the truth. She won’t even talk about end of life stuff and I can’t let go of that. Doesn’t everyone plan? The finality exists only for me. I cannot ask her to apply any sense of wishes to an end that looms in front of us both. Her agenda is maximizing time into flowery closing scene experiences.
I’m venting now. I would do it aloud to try to mitigate my cortisol level, but I have to do it silently and furtively. The walker lurks too nearby to allow a release in the open forum of the room we are both imprisoned within.
No, I didn’t dissolution myself to believe this would be easy. But dying under house arrest in a pandemic that seems extra cruel. There is no way out. I could try my dads’ approach, be so caustic the best recourse is silence, and then do whatever I wanted to anyway, but then she would be completely alone. And she’s still dying without any chance of a better tomorrow so I type in hard puncture wound passes.
There are days that are bad. Days so painfully long and full of so much demanding angst that I want this to end. Days that are full of meaningless errands. Answering a barrage of demands for things I cannot find sense in. Like removing Christmas decorations in April. Always with the same preamble “can you just do me one more favor…?” The red bow on the mantle. It should have gone weeks ago. It drives her crazy, which then in turn, of course, drives me crazy too. I have a home I haven’t vacuumed, cleaned, done laundry in in weeks, and I’m at her house cleaning it.
There is a disconnect between her preferences and her immediate, vital needs. The clock is ticking.
Yesterday was a bad day. The second in as many. It was a day full of moaning, crying, and pleading for the only relief I can give her, short of drug advice, companionship. She is alone too much. The loneliness causes anxiety which manifests into sleepless nights and further exacerbates her fear of pain and loneliness.
She is afraid to fall asleep for fear of not waking up. We should all be so lucky to die so peacefully. Me, I don’t want to wake up in the morning. Find some quiet place to bury my head under the bedclothes, a mummy wrapped for the long voyage to the underworld. She cannot find peace while awake. Her pain refuses to relent, and yet she cannot find salvation in sleep. It is a never ending roller coaster of unfair and unyielding.
It took her 30 minutes to muster the courage to sit up. Shaking, eyes closed, willing herself into moving the tiny rigid structure that used to house her options of freedom and choosing. She is now a prisoner to a broken body breaking down without any reconstructive abilities.
She is melting into nothingness. Evaporating, decaying, just crumbling. She cannot stand up straight. Cannot sit in a chair and face her dinner plate without being bent over and buckled into her own lap.
Oxygen is a commodity she obsesses over. She is hooked into a clear tubing pushing her lungs to accept what they can no longer obtain independently. She has multiple redundant units and miles of spare tubing. She checks her own oxygen levels hourly, half-hourly, obsessively. It is a race she wants to beat herself at. I have decided asking, inquiring about her obsessions merely feeds the monster that dictates them. The questions are met with anxiety ridden hostility. She has no patience for reason any longer. I try to talk about what she does with the information she collects. The nurses regimen of monitoring her own stats? This is another battle with no end point suitable to perpetuate the understanding of her data.
“Is 99 degrees too high?” She wants to be ready to alert the front line should she fall victim to COVID. It's part of her vitals monitoring ritual.
“Do you know what a normal body temperature is?” I ask.
“No,”
“Then you’re fine. Don’t worry.
We spent months trying to identify the source of her pain while we also tried to get it under control. We are back at square one. She has returned to that place where everything is impossible. Moving is too painful to do. We are here this time with 5 medications, three of them opioids, and drugs to chase the side effects of the drugs. “It wasn’t any fun there the first time around. Was it?” She nodded with a dejection of reluctant silent admission. We can’t go back there. Back to that place without answers, suffering met but a struggle to plea for anyone listen, hoping without precedence that one person will stop their busy over burdened life and actually hold her hand and invest their talents, dare even themselves, into her cause. There is an impressive amount of competence and excellence in her doctors, but,, there isn’t much in the way of genuine heart break for her plight. Maybe they have seen too many before her? Made themselves into little fortresses of medical indifference? A short dismissive hello, here’s what we can offer, a keep in touch, and a farewell to another time. The only thing left is to increase the doses of everything. Add an anti-depressant to help her sleep. Make the fear of not waking up a thing forgotten. Sedate her. Medicate and sedate is all that is left. What will that cost her I wonder? It will cost her everything she has left. And she will willingly surrender it. Pain is unacceptable. Pain and fear is her deaths last demand. We gave in to it as I surrendered hope today for anything else.
I can tell you a few things about this journey. I didn’t expect it to be easy. I knew it would be grueling, but I had no idea how alone we would both feel within it. Helpless, well, I haven’t accepted that one yet. We both have some coming to terms with the cards life has dealt us.
For more on my moms journey see the previous blogs here;
Silver Linings Of COVID-19.
The Journey. Missed Pit Stops and The Pile Of Regret Souvenirs.
For more information on me, my vet clinic Jarrettsville Veterinary Center in Jarrettsville MD, or for our Facebook page, or, free pet care help please go to Pawbly.com.
Thank you to all of my dear friends and family for helping me through this. I sincerely appreciate everyone's support.
krista
The hyporexic is my mom. She has stage 4 metastatic breast cancer. She needs a lot of help these days. The whole COVID crap has made dying a much lonelier event than anticipated. I have become the nurse and the house cleaner. My dad and my husband are the only others on her visitation list. It’s a small tight group. We all know too much about each other. It leads to fighting most of the time.
Hence, I vacuum. Or bide my oversight time cleaning, often.
Like all things in these days nothing is easy. To get to the vacuum I had to beat back the dust around and within the broom closet. To get it to turn on it had to unbury it from the cobwebs that quarantined it. To get to that I had to uncover the post Katrina WHO deposit of stacked bottled water that could serve Flint for the remainder of the year. This is the broom closet of a husband who never had to do housework before his wife fell ill, and, the paranoid couple who refuse to drink tap water after moving from a farm with well water. Trying to convince them that there is at least some oversight on the town water supply versus the farm well that I once saw a dead ground hog floating in is like yelling at the tornado to stop at your doorstep’s threshold. There is a mole hills mountain of poetic justice and politically driven pardons sitting here at my feet these days. I too often have to find the comic relief in the utter aging madness I have fallen into.
Quarantined with a dying person inside their house is a never-ending loop of t.v., feedings, medications, questions about if its ‘time again?” for medications, and self-checking her vital signs. The t.v. is tuned to CNN non-stop. It is her way she will tell you, of “still being a part of the world.” To which I remind her that that’s going to shit too. Maybe don’t turn there for joining society and being a part of the whole we left soo many weeks ago.
At her house I clean, like a mad person. It's my ADD that I cannot apply to CNN and the myriad of measured pills in their clock driven doses. Providing some degree of order, civility and modicum of acceptance that the world will go on around me is placed in sanitizing swipes at cobwebs too distant for her to see never the less attempt to reach.
Food is a battle. Like all aspects of her life now. She’s is wasting away. She is so thin and weak she can no longer stand without metallic wrap around support and hand grips. Shuffling from across the room to the small bathroom she exists between. My mom wants endless hours of all-day small talk. The escape she yearns for outside of the destruction her body is catabolizing. I am not a chatterer. I never have been, and asking me to figure that out for the last inning of the last game is too hard to go back to parochial school for. There is no room for normalcy here. I cannot seem to embed it in the cleaning to provide relief to the endless news cycles. And yet I continue to clean. Keep moving. Try to be productive and helpful as I uncover artifacts from a once functional home. Small items cause major melt downs. A half-eaten pie sitting useless in the fridge is a day long discussion on appropriate resolution. Obsessing on triviality and the time consumption it fills the day with is the reality of four people in too close proximity for too long already and no end in sight.
 |
| My mom's painting of Lilly. |
This is the horrible place I am right now. Standing at the intersection of letting go and surrendering the hope I felt I would never unclench. She has stopped trying. I am not sure if it is all exhaustion that caused her to surrender her hope, or, the pain that her fear gave up. But all are gone.
Today was the day I decided I had to come to terms with goodbye being only a few moments away. For as much as we are so similar, my mother and I, I am most assuredly the human of voicing and reasoning while she is the soul of submission and omission. She won’t ever tell you what is right at the tip of her tongue. She will never confess. She will never say she is dying. She won’t give that up. She will only remind you with her every single action that she checked out a long while ago. I can look back now and know exactly when that happened. We were all sitting around her hospital bed when the doctor came in to visit, one week into her hospitalization to manage pain trip, to break the bone scan findings to her. “It is bad…. (long,,,, long pause…..)…. Really bad. She has cancer everywhere.” Yes, these were his exact words. She swallowed the words slowly and lowered her pale worn face and gave up. She had her pass to never doing anything again that she didn’t want to and she has ridden that pony into where we are today.
 |
| Cait |
That discussion and discovery was over two months ago. At that time it had been over two months since her biopsy came back as cancerous. We now knew she had advanced metastic cancer in all of her bones which no longer allowed her to be candidate for chemo or radiation. They gave up on her as being too late, and she gave up on them as offering too little. She left to go home to try to come to terms with the cards dealt.
Today we are at her monthly oncology check-up. She was wheeled in, after being carried from her home to my car. COVID screening threw a new twist onto today's visit. We were met at a distance by greeting staff to check our temperature with a forehead thermal scan and provided and required to don a mask and gloves and asked a series of questions to try to insure we were not infected, or around anyone who was. Even the hospital is afraid.
 |
| 4/14/2020, UPMC oncology |
I saw the blue numbers flash, swallowed my silence and gave up. Today I have lost hope for her. That hope for her chance to ever function again in the capacity that I have known her has passed.
It has been months of days that were up for as many times as they were down. She is painful, almost uncontrollably painful. She is on higher doses of opioids than I ever thought were humanly possible, especially for the fact that she barely ever hit a hundred pounds in her whole lifetime. She is not, as her oncologist put it today, “opioid naïve.” I was almost proud of her. It might be the first time she has ever surprised me with a title she didn’t earn from years of perfecting a skill. She is an amazing artist. She has always been an incredibly talented artist. She can sketch, paint, imagine any beauty into a canvas. Her work is all around us. At the vet clinic. Every room of my house, but a hard-core opioid aficionado I never saw destined for her resume. Today she was classified as becoming immune to their affects. Her body was acclimating to them. Starting to blow them off as inferior, paltry, innocuous. Today we carried her out of the house. Wheel chaired her into the hospital. Pushed her in a wheel chair into every room, every exam, and every treatment. She is a skeleton you can push without effort and pick up without exertion. She is bones and an oxygen pump spewing little hiccup-coughs into her nose. Her lifeline to failing lungs. She will need more drugs, at higher doses to get the pain at bay this time. Higher doses, shorter time frequencies and more side effects because of them. They will take away her pain as the collaterally steal her gut function, cognition, and conscious time.
 |
| 4/3/20 |
 |
| my moms Easter canvas circa 2015 |
“It’s her shoulder blade.” She is misshapen, misaligned due to a lifetime of scoliosis and the aging of osteoporosis. Her spine is “S” shaped and her shoulder has always been left elevated and prominent. She now lacks the 30 pounds to hide it.
The vacuuming leads to laundry. The monotony of never-ending laundry. Put in the dirty, smelly old people funk, and, POOF! Out it comes anew. Refreshed.
“Mom, we have to figure this out?” I implore her. I don’t think she cares to entertain my burdened inquisitive agenda. I think I am just speaking out loud. I think I am being my own therapist. She already has her plan laid out. The analytical doctor used to non-speaking patients hiding their illnesses and masking their diseases is who I am at my best. She is another patient puzzle to solve. I can solve this. It’s a cancer patient like so many I have had before.
 |
| D.C. |
 |
| Ambrose |
No, I didn’t dissolution myself to believe this would be easy. But dying under house arrest in a pandemic that seems extra cruel. There is no way out. I could try my dads’ approach, be so caustic the best recourse is silence, and then do whatever I wanted to anyway, but then she would be completely alone. And she’s still dying without any chance of a better tomorrow so I type in hard puncture wound passes.
 |
| Easter box painting 4/3/20 |
There is a disconnect between her preferences and her immediate, vital needs. The clock is ticking.
Yesterday was a bad day. The second in as many. It was a day full of moaning, crying, and pleading for the only relief I can give her, short of drug advice, companionship. She is alone too much. The loneliness causes anxiety which manifests into sleepless nights and further exacerbates her fear of pain and loneliness.
She is afraid to fall asleep for fear of not waking up. We should all be so lucky to die so peacefully. Me, I don’t want to wake up in the morning. Find some quiet place to bury my head under the bedclothes, a mummy wrapped for the long voyage to the underworld. She cannot find peace while awake. Her pain refuses to relent, and yet she cannot find salvation in sleep. It is a never ending roller coaster of unfair and unyielding.
It took her 30 minutes to muster the courage to sit up. Shaking, eyes closed, willing herself into moving the tiny rigid structure that used to house her options of freedom and choosing. She is now a prisoner to a broken body breaking down without any reconstructive abilities.
She is melting into nothingness. Evaporating, decaying, just crumbling. She cannot stand up straight. Cannot sit in a chair and face her dinner plate without being bent over and buckled into her own lap.
Oxygen is a commodity she obsesses over. She is hooked into a clear tubing pushing her lungs to accept what they can no longer obtain independently. She has multiple redundant units and miles of spare tubing. She checks her own oxygen levels hourly, half-hourly, obsessively. It is a race she wants to beat herself at. I have decided asking, inquiring about her obsessions merely feeds the monster that dictates them. The questions are met with anxiety ridden hostility. She has no patience for reason any longer. I try to talk about what she does with the information she collects. The nurses regimen of monitoring her own stats? This is another battle with no end point suitable to perpetuate the understanding of her data.
“Is 99 degrees too high?” She wants to be ready to alert the front line should she fall victim to COVID. It's part of her vitals monitoring ritual.
“Do you know what a normal body temperature is?” I ask.
“No,”
“Then you’re fine. Don’t worry.
We spent months trying to identify the source of her pain while we also tried to get it under control. We are back at square one. She has returned to that place where everything is impossible. Moving is too painful to do. We are here this time with 5 medications, three of them opioids, and drugs to chase the side effects of the drugs. “It wasn’t any fun there the first time around. Was it?” She nodded with a dejection of reluctant silent admission. We can’t go back there. Back to that place without answers, suffering met but a struggle to plea for anyone listen, hoping without precedence that one person will stop their busy over burdened life and actually hold her hand and invest their talents, dare even themselves, into her cause. There is an impressive amount of competence and excellence in her doctors, but,, there isn’t much in the way of genuine heart break for her plight. Maybe they have seen too many before her? Made themselves into little fortresses of medical indifference? A short dismissive hello, here’s what we can offer, a keep in touch, and a farewell to another time. The only thing left is to increase the doses of everything. Add an anti-depressant to help her sleep. Make the fear of not waking up a thing forgotten. Sedate her. Medicate and sedate is all that is left. What will that cost her I wonder? It will cost her everything she has left. And she will willingly surrender it. Pain is unacceptable. Pain and fear is her deaths last demand. We gave in to it as I surrendered hope today for anything else.
I can tell you a few things about this journey. I didn’t expect it to be easy. I knew it would be grueling, but I had no idea how alone we would both feel within it. Helpless, well, I haven’t accepted that one yet. We both have some coming to terms with the cards life has dealt us.
For more on my moms journey see the previous blogs here;
Silver Linings Of COVID-19.
The Journey. Missed Pit Stops and The Pile Of Regret Souvenirs.
For more information on me, my vet clinic Jarrettsville Veterinary Center in Jarrettsville MD, or for our Facebook page, or, free pet care help please go to Pawbly.com.
 |
| Me and my girl Seraphina, COVID 19 PPE prepared. |
Thank you to all of my dear friends and family for helping me through this. I sincerely appreciate everyone's support.
krista
