My birthday fell on a Sunday this year. As with most Sundays, that meant I went to see my Dad.
On the drive down, it dawns on me that I've forgotten to grab a lawn & leaf bag. I have a mind that I should stop at the cemetery, that the flowers left after the service are probably the worse for the frost and rain we've had since then. I don't know that I'm ready to go there, but something in there keeps driving me toward that first visit. I ask The Boy to remind me to grab a trash bag when we leave grampa's. Of course, we both forget.
I was nearly at the ramp to get on the highway after our visit, talking to The Boy about our afternoon plans, when I realized I'd passed the turn-off for the cemetery. I change lanes and go back.
As we pull into the cemetery, The Boy looks over at me. Somewhat hesitantly, he asks me if this is going to upset me. I answer him honestly: "I don't know."
At first, I can't see the grave. I think it should be obvious to me - fresh soil, the remnants of sprays and arrangements...but I haven't gone far enough. From the car, it's not upsetting. We both get out and approach, and it's a sad scene. Most of the flowers and greens are well past their prime, and I have nothing to put them in, no way to improve this situation.
But wait...that arrangement still looks pretty good, it's just tipped over. Stand it up, it's better. Pick up that glass vase and lay the flowers on the soil, cover the raw wound of her grave, put the vase in the truck. These two baskets, the flowers can cover the soil, the baskets can come home. We can wash the mud off, and they can come back in the spring with new, fresh flowers for her.
I move to the other side, and I kneel in the grass. I look at the soil, marking a grave freshly filled. I look at the remnants of the spray we had put on top of her casket, and the one - so big, so beautiful - from my coworkers. I come undone. I try so hard to hold it in and I can't...and The Boy sees and comes to me immediately, arms around my shoulders trying in his awkward, teenage, loving way to comfort me.
I pull myself as together as I can, looking down at the ground and I see footprints...fox, perhaps?...in the fresh soil. I start to pick up the handle of another basketed arrangement and see the tallest flowers have had the tops bitten off. I can't help but smile. Even here, even now, the animals come to her. Somehow, I'm comforted by this. The Boy and I continue our work. We leave the best looking arrangements upright, we scatter the remaining flowers over the soil to hide it, and we agree to come back next week with a couple big trash bags to do a better clean up.
It was harder than I thought it would be, and it hurt more than I thought it would. As we drove out, The Boy asked if we'd come often. I told him how Grandma used to make sure there were flowers on her parents' and Granpa's parents' graves for certain occasions...Mother's Day, or Christmas, for instance.
"Will we come on her birthday?" he asked, and the tears came again.
"Perhaps we will," I manage. The rest of the drive home was quiet, each of us lost in our thoughts.
As a family, I think we're still trying to find our new normal, our new
rhythm. Some things are the same, but some things will never be the same again.
Monday, October 31, 2016
Storm Breaks
Her energy is waning, she's becoming more and more confused. She asks what we're all waiting for and we tell her she's being moved to a quieter floor. No alarms, no monitors, she doesn't need them any more. A young man arrives from transport, an angel, as he disconnects and maneuvers her bed toward the door, he paints a picture of paradise on the 7th floor. "There is music and candles and it always smells like cookies up there. It's my favorite place to go in the hospital. You can have anything you want to eat, you can read books, or tell stories..."
"She loves to tell stories," I tell him.
He smiles, "I love stories!"
Faintly, from the bed, "Even dirty ones?" We all laugh. She's still there.
Her transfer from IMCU to Palliative Care is a procession. Her family, her entourage, accompany her and her angel from Transport and we get her settled in. She's used all her energy by now, and she's barely awake. We all sit quietly with her for a time, and like a collective breath, we know it's time to leave her be. One by one, we kiss her, say goodnight, tell her we'll be back tomorrow. She nods, sleepy, eyes closed, and we leave.
Friday morning, the first phone call at about 8am tells me that her respiration rate was elevated and she was given medication to help. I tell them I'll head in soon, and I start getting ready...shower, dress, coffee...and before I can get in the car, a second phone call. I know before I pick it up what this is about but I can't not answer. In that space between, she passed...and we weren't there.
In the days since, I've come to the conclusion that she probably wouldn't have let go had any of us been there. I look back at her advance planning workbook and one word comes forward, repeatedly..."family".
"What do you fear leaving behind when you die?" asks the workbook. "Family," she answered.
"What makes your life worth living?" asks the workbook. "Family," she answered.
"If you could plan your last day or hours, who would be present?" asks the workbook.
"Family."
She got the last day she wanted.
Waiting For The Storm 4
We talk to her - she hasn't had any pain medication but she's not moaning and whimpering like she had been. She's able to actually converse with us, although she sort of drifts off a little now and then. My brother has to leave for a bit, and while he's gone, I sit by her side, holding her hand and talking to her. She say she's cold, so very cold, so I keep bringing blankets in from the linen cart in the hall. She's buried under a mountain of blankets. Suddenly she turns her head to me. "Does Dad know?"
"Does Dad know what?" I ask.
"Does Dad know I'm dying?" I'm gutted. No one has even implied that in her presence, awake or not.
"Dad knows you are very sick. Do you want to see him?" She nods. "Okay, when my brother gets back, we'll talk about getting Dad here."
We talk about inconsequentials. I tell her about visitors that came the day before, when she wasn't awake. I pass messages on to her from cousins across the country who have been following her progress via email, messages and social media. She smiles to hear some of them.
I have to tell my brother what she said when he returns, and I can see that he is as gutted as I was to hear those words. His face crumples. "She wants to see Dad. Mom, do you still want to see Dad?" She nods.
She says, "I don't want him to cry. Tell him not to cry."
Before either of us can leave to get Dad, the the hospitalist comes in. She talks to Mom, makes sure that her words are understood, and asks her what she wants to do. Mom looks from my brother to me, and says "What do you think?" as though it is as mundane a decision as which paint color to choose, or which fabric on a recliner. "What do you think?" she says again, and again. And we tell her, "It's up to you. You tell us what you want, and we will see to it. It is not for us to decide for you." Offered her options, stop this, keep doing that, some combination thereof...she tells us she wants to stop dialysis. To be clear, I ask if she knows what that means. "Yes," she says, "I'll stop."
"You'll stop what, Mom?"
"My heart. Will stop."
"Is that what you are asking for?" She nods.
My brother leaves to get Dad. I text Himself, because now she is asking to see The Boy. The family begins to come together. I sit with her while we wait, and she keeps asking me to send in Dad, send in The Boy and I keep telling her they are on their way and they will come in as soon as they arrive. She then changes to reminding me that she doesn't want Dad to cry. Out of the blue she says to me, "I want to roll over." and I'm shocked - rolling on her side when they change her bedding causes her a great deal of pain.
"Are you sure you want to roll over? That usually hurts you."
"No. I want to go over."
"Go over where?"
"I want to go over." and she dozes a little.
I find the hospitalist and tell her we want to proceed with moving to the palliative care floor. They have a room waiting and just needed our word to go ahead. The palliative care coordinator arrives and I tell her that I think we're getting the signals we need from her. We agree to keep the antibiotics going another 24 hours and watch for any improvement.
Dad arrives first, and I talk to him in the hallway. I have to tell this man, who has been with her for more than 6 decades, that she isn't doing well and she is worried he will be upset. I have to ask him to be strong for her. We take him in and get him set up next to her bed, holding her hand. She turns to him and tells him she's dying, and he cries, of course he cries. He denies her - "No you are not, you're going to get better and come home." She is insistent, and he looks at me, pleading with his eyes, to make her stop saying that she's dying. I can't.
Himself arrives with The Boy and it's finally hitting home that she's called us all together to say goodbye. I have to explain this to The Boy and ask him to hold it together, and go in and see her. She doesn't come out and tell any of us goodbye, but you know while talking to her, she's staring at your face, listening to your voice and storing that all away. My sister-in-law arrives, and the staff come in to move Mom to the new bed for transport. They have to close the door to her room so her cries are muffled as they shift her...but we can still hear them. Once she's settled in her new bed, my brother gets his daughter live via FaceTime and grandmother and granddaughter see each other again. My mother says, "I will always think of you." and her face is alight. She is smiling. No, she is beaming, she is so happy to see her granddaughter...and my niece is crying. We're all crying but we're trying not to show it, so we don't make it worse for each other or make her feel badly about all of this.
<continued>
"Does Dad know what?" I ask.
"Does Dad know I'm dying?" I'm gutted. No one has even implied that in her presence, awake or not.
"Dad knows you are very sick. Do you want to see him?" She nods. "Okay, when my brother gets back, we'll talk about getting Dad here."
We talk about inconsequentials. I tell her about visitors that came the day before, when she wasn't awake. I pass messages on to her from cousins across the country who have been following her progress via email, messages and social media. She smiles to hear some of them.
I have to tell my brother what she said when he returns, and I can see that he is as gutted as I was to hear those words. His face crumples. "She wants to see Dad. Mom, do you still want to see Dad?" She nods.
She says, "I don't want him to cry. Tell him not to cry."
Before either of us can leave to get Dad, the the hospitalist comes in. She talks to Mom, makes sure that her words are understood, and asks her what she wants to do. Mom looks from my brother to me, and says "What do you think?" as though it is as mundane a decision as which paint color to choose, or which fabric on a recliner. "What do you think?" she says again, and again. And we tell her, "It's up to you. You tell us what you want, and we will see to it. It is not for us to decide for you." Offered her options, stop this, keep doing that, some combination thereof...she tells us she wants to stop dialysis. To be clear, I ask if she knows what that means. "Yes," she says, "I'll stop."
"You'll stop what, Mom?"
"My heart. Will stop."
"Is that what you are asking for?" She nods.
My brother leaves to get Dad. I text Himself, because now she is asking to see The Boy. The family begins to come together. I sit with her while we wait, and she keeps asking me to send in Dad, send in The Boy and I keep telling her they are on their way and they will come in as soon as they arrive. She then changes to reminding me that she doesn't want Dad to cry. Out of the blue she says to me, "I want to roll over." and I'm shocked - rolling on her side when they change her bedding causes her a great deal of pain.
"Are you sure you want to roll over? That usually hurts you."
"No. I want to go over."
"Go over where?"
"I want to go over." and she dozes a little.
I find the hospitalist and tell her we want to proceed with moving to the palliative care floor. They have a room waiting and just needed our word to go ahead. The palliative care coordinator arrives and I tell her that I think we're getting the signals we need from her. We agree to keep the antibiotics going another 24 hours and watch for any improvement.
Dad arrives first, and I talk to him in the hallway. I have to tell this man, who has been with her for more than 6 decades, that she isn't doing well and she is worried he will be upset. I have to ask him to be strong for her. We take him in and get him set up next to her bed, holding her hand. She turns to him and tells him she's dying, and he cries, of course he cries. He denies her - "No you are not, you're going to get better and come home." She is insistent, and he looks at me, pleading with his eyes, to make her stop saying that she's dying. I can't.
Himself arrives with The Boy and it's finally hitting home that she's called us all together to say goodbye. I have to explain this to The Boy and ask him to hold it together, and go in and see her. She doesn't come out and tell any of us goodbye, but you know while talking to her, she's staring at your face, listening to your voice and storing that all away. My sister-in-law arrives, and the staff come in to move Mom to the new bed for transport. They have to close the door to her room so her cries are muffled as they shift her...but we can still hear them. Once she's settled in her new bed, my brother gets his daughter live via FaceTime and grandmother and granddaughter see each other again. My mother says, "I will always think of you." and her face is alight. She is smiling. No, she is beaming, she is so happy to see her granddaughter...and my niece is crying. We're all crying but we're trying not to show it, so we don't make it worse for each other or make her feel badly about all of this.
<continued>
Waiting For The Storm 3
Transferred to rehab, Mom turns into a completely different patient than she is in hospital. Anyone coming near her dialysis machine is mistrusted, she's certain they will do something wrong, training notwithstanding. We field numerous calls from her about people in her room "trying to screw up my machine" and we do what we can to either talk someone new through the process or talk Mom down off the ledge of anger.
Her stay there is only brief before I get a call that she has a fever. Naturally, it's when my brother is out of town - it's that vacation magic again. They tell me her chest x-ray looks clear, they've drawn blood and the fever seems to be responding to treatment, and I will be kept apprised. No further updates. We visit the next day, I ask the results of the blood work and get simply "an elevated white blood count, but her fever is down and she seems okay." We carry on.
Less than a week later, I come home from work to a message from the rehab. The fever is back, they've taken her to the emergency room. I speak to the attending, he recommends admission to the hospital and I grant permission. It is September 29th.
By October 1st, the infection is affecting her cognitively - during my evening visit, she rants that she "just has a little fever" and that they are keeping her there for no good reason. "It's BULLSHIT!" she yells.
The next day, I see the doctor. They have determined that she has enterococcus causing bacteremia and endocarditis...in layman's terms, she has an infection in her bloodstream that has migrated to her damaged heart tissue. She has periods where she's lucid, and periods where she isn't, and the intravenous antibiotics keep going. Her doctor brings up the option of palliative care, which I take back to discuss with my brother. How do we know if it's time?
On the 4th, I decide to work from her hospital room for the afternoon. As I shut the car off in the hospital parking lot, the palliative care coordinator calls me. I'll be up to see her momentarily. When I arrive on the IMCU floor, Mom has company - and is awake for it. Seeing two of my cousins there with her makes me so very happy, and I drop my bag off before heading off to meet the coordinator. Because the mention of palliative care the day before had been on my mind, I had re-read Mom's advance health care planning workbook* to be sure I understood what her wishes would be. As a result, we were able to have an honest and productive conversation, and we left palliative care on the table when we (the family) decided it was time. I came away thinking about the statement the coordinator made to me: "There isn't ever a sign that comes down from above, telling us it's time for palliative care. We all just do the best we can." We agree on an initial plan of pain management, since narcotics are being avoided only to try to keep her lucid, and even without them, she isn't very.
On the 5th, I plan to work from her hospital room for the day, in the hopes of being present for any lucid moments she may have. There are none, but she whimpers and moans in pain, and I talk to the nurse about dilaudid, and she gets a dose. Her whimpering ceases, and she seems to be comfortable. Then, the respiration line on the monitor goes flat, the monitor itself alarms and I end my phone call with a frantic "gotta go, gotta go, goodbye". Before I can get to her bedside, she takes a hitching breath and says "gotta go......gotta go......goodbye". Unnerving? You bet it was.
The benefit of parking yourself in the hospital room for the day is getting to see each and every specialist as they do their rounds. Infectious Disease comes in, Nephrology, Hospitalist...updates make more sense when you talk to each of the specialties. Infectious Disease says they can find no source for the infection, they want to take another look at her hip, this time an CT - the prior x-ray and ultrasound were inconclusive. Nephrology says they don't like the cell count in the dialysate they've tested from her, and the Hospitalist asks what we think about the palliative care option, telling me that the white blood cell count isn't going down. I leave for the evening as they prep her for her CT scan.
On the 6th, I take the morning off to collect her belongings from the rehab. We agree that it's highly unlikely she'll be going back for physical therapy any time soon, and I coordinate pick up with the admissions director. From there, I head to the hospital where my brother is headed as well. He arrives before me, texts me that she woke up as soon as he walked in. I arrive less than half an hour later, and she's able to talk to us, the most alert she's been in some time.
<continued>
Her stay there is only brief before I get a call that she has a fever. Naturally, it's when my brother is out of town - it's that vacation magic again. They tell me her chest x-ray looks clear, they've drawn blood and the fever seems to be responding to treatment, and I will be kept apprised. No further updates. We visit the next day, I ask the results of the blood work and get simply "an elevated white blood count, but her fever is down and she seems okay." We carry on.
Less than a week later, I come home from work to a message from the rehab. The fever is back, they've taken her to the emergency room. I speak to the attending, he recommends admission to the hospital and I grant permission. It is September 29th.
By October 1st, the infection is affecting her cognitively - during my evening visit, she rants that she "just has a little fever" and that they are keeping her there for no good reason. "It's BULLSHIT!" she yells.
The next day, I see the doctor. They have determined that she has enterococcus causing bacteremia and endocarditis...in layman's terms, she has an infection in her bloodstream that has migrated to her damaged heart tissue. She has periods where she's lucid, and periods where she isn't, and the intravenous antibiotics keep going. Her doctor brings up the option of palliative care, which I take back to discuss with my brother. How do we know if it's time?
On the 4th, I decide to work from her hospital room for the afternoon. As I shut the car off in the hospital parking lot, the palliative care coordinator calls me. I'll be up to see her momentarily. When I arrive on the IMCU floor, Mom has company - and is awake for it. Seeing two of my cousins there with her makes me so very happy, and I drop my bag off before heading off to meet the coordinator. Because the mention of palliative care the day before had been on my mind, I had re-read Mom's advance health care planning workbook* to be sure I understood what her wishes would be. As a result, we were able to have an honest and productive conversation, and we left palliative care on the table when we (the family) decided it was time. I came away thinking about the statement the coordinator made to me: "There isn't ever a sign that comes down from above, telling us it's time for palliative care. We all just do the best we can." We agree on an initial plan of pain management, since narcotics are being avoided only to try to keep her lucid, and even without them, she isn't very.
On the 5th, I plan to work from her hospital room for the day, in the hopes of being present for any lucid moments she may have. There are none, but she whimpers and moans in pain, and I talk to the nurse about dilaudid, and she gets a dose. Her whimpering ceases, and she seems to be comfortable. Then, the respiration line on the monitor goes flat, the monitor itself alarms and I end my phone call with a frantic "gotta go, gotta go, goodbye". Before I can get to her bedside, she takes a hitching breath and says "gotta go......gotta go......goodbye". Unnerving? You bet it was.
The benefit of parking yourself in the hospital room for the day is getting to see each and every specialist as they do their rounds. Infectious Disease comes in, Nephrology, Hospitalist...updates make more sense when you talk to each of the specialties. Infectious Disease says they can find no source for the infection, they want to take another look at her hip, this time an CT - the prior x-ray and ultrasound were inconclusive. Nephrology says they don't like the cell count in the dialysate they've tested from her, and the Hospitalist asks what we think about the palliative care option, telling me that the white blood cell count isn't going down. I leave for the evening as they prep her for her CT scan.
On the 6th, I take the morning off to collect her belongings from the rehab. We agree that it's highly unlikely she'll be going back for physical therapy any time soon, and I coordinate pick up with the admissions director. From there, I head to the hospital where my brother is headed as well. He arrives before me, texts me that she woke up as soon as he walked in. I arrive less than half an hour later, and she's able to talk to us, the most alert she's been in some time.
<continued>
* I highly recommend this workbook to anyone with aging parents, or who may be responsible for the care of a loved one.
Waiting For The Storm 2
The running not-joke becomes vacations. Seems like whenever one of us goes away for very long something happens. We know it's not intentional, but it seems so predictable. My family and I go to Washington state for a week in April, and one morning I wake up to the text I hated to see: "Call me when you get up." Mom has somehow managed to pull the end off her dialysis catheter. I am wracked with guilt for being so far away while my brother handles the situation single-handedly. It's not that he isn't capable - he far and away is - it's the guilt of not being there to share the burden, of not having the option for him to handle one part while I handle another. Because that sharing of the responsibility has also become part of our rhythm. The crisis is averted, we fall back into our rhythm.
Spring turns to summer. Mom decides she's had enough of this limited life, and does what she can - she begins working very hard with the physical therapist who comes three times each week. We don't know how much progress she's making until one day we ask to see...and she stands up with the help of her walker. We are amazed, and heartened...until she announces to me that once she's walking again, she plans on driving. A conversation for another day, I think, when I have back up.
Late Summer. The Boy spends two weeks out in Washington with the same cousin we visited in April. We work, we have our weekly check-ins and visits with the parents, we enjoy the season. The last week of summer vacation is to be spent in Canada with my sister- and brother-in-law. We will come home on Sunday, before Labor Day, to ensure the Boy is settled and ready for his first day of high school that Tuesday. Not long after I wake up Saturday morning, I get the text: "Call when you get up." I make the call immediately.
"We are at the ER. She fell out of bed about five o'clock this morning. Waiting to see what they say. I'll keep you posted."
"Should I leave here now?"
"No. There's nothing to be gained by it."
The guilt sets back in. Once again, I'm away and he's dealing with her alone. Himself asks if I want to leave. I waffle but decide that if I needed to be back, my brother would say so. I lose myself in preparing a big dinner for the group coming to the camp that night, waiting for an update.
It comes via text. "Broke her right hip. Going to be admitted to Middlesex for repair." "Should I come?" I'm at least 6 hours away, in optimal conditions. "No, tomorrow is soon enough." I ask Himself if we can leave first thing in the morning rather than the planned afternoon and he readily agrees.
I phone Mom after she's out of surgery and tell her when we plan to leave. We have problems getting the boat properly trailered and after one thing or another, it takes us nearly 8 hours to get home. It's too late to go to the hospital, so we unload, unpack and settle in.
So begins a series of hospital visits, phone calls, alarms and decisions. Over the course of three days, she's had surgical anesthesia, codeine, morphine, Tylenol and oxycodone...but no dialysis. Her last dialysis cycle had ended when she fell out of bed. Monday night the hospital calls to say they think she's had a seizure - gave her Ativan, helped a little, then they tried Narcan. They finally realized that withholding dialysis while still administering narcotics was a Bad Idea. She recovers and is once again responsive to them. Now there are tests. What caused this? Well it seems obvious enough to us, but they do an MRI and CT scan to look for stroke or seizure indications. Finally they start dialysis. She improves, but she thinks she had a stroke, because she heard them talking about it. She struggles to communicate complex thoughts, but can express her frustration. We keep hoping that continuing dialysis while withholding narcotics will improve her state.
Tuesday my brother gets the call. "Does Mom normally struggle to put her words together." "No, she does not." They put her on Keppra for seizures, even though there is no proof she's seizing. They are reaching and we all know it.
After a few days, she's once again able to communicate with us clearly, although at times the sentences and thoughts wander, or are out of context. She's been through a lot. It's time to get her out of there and into a therapy program. She's matched up with an open bed at a rehab and we're told to get her dialysis cycler from her home to the facility so the staff can be trained. Now we are useful once again - we scramble and get the machine, and all the supplies we can load into my truck to the facility...and wait for Mom to be transferred there.
<continued>
Spring turns to summer. Mom decides she's had enough of this limited life, and does what she can - she begins working very hard with the physical therapist who comes three times each week. We don't know how much progress she's making until one day we ask to see...and she stands up with the help of her walker. We are amazed, and heartened...until she announces to me that once she's walking again, she plans on driving. A conversation for another day, I think, when I have back up.
Late Summer. The Boy spends two weeks out in Washington with the same cousin we visited in April. We work, we have our weekly check-ins and visits with the parents, we enjoy the season. The last week of summer vacation is to be spent in Canada with my sister- and brother-in-law. We will come home on Sunday, before Labor Day, to ensure the Boy is settled and ready for his first day of high school that Tuesday. Not long after I wake up Saturday morning, I get the text: "Call when you get up." I make the call immediately.
"We are at the ER. She fell out of bed about five o'clock this morning. Waiting to see what they say. I'll keep you posted."
"Should I leave here now?"
"No. There's nothing to be gained by it."
The guilt sets back in. Once again, I'm away and he's dealing with her alone. Himself asks if I want to leave. I waffle but decide that if I needed to be back, my brother would say so. I lose myself in preparing a big dinner for the group coming to the camp that night, waiting for an update.
It comes via text. "Broke her right hip. Going to be admitted to Middlesex for repair." "Should I come?" I'm at least 6 hours away, in optimal conditions. "No, tomorrow is soon enough." I ask Himself if we can leave first thing in the morning rather than the planned afternoon and he readily agrees.
I phone Mom after she's out of surgery and tell her when we plan to leave. We have problems getting the boat properly trailered and after one thing or another, it takes us nearly 8 hours to get home. It's too late to go to the hospital, so we unload, unpack and settle in.
So begins a series of hospital visits, phone calls, alarms and decisions. Over the course of three days, she's had surgical anesthesia, codeine, morphine, Tylenol and oxycodone...but no dialysis. Her last dialysis cycle had ended when she fell out of bed. Monday night the hospital calls to say they think she's had a seizure - gave her Ativan, helped a little, then they tried Narcan. They finally realized that withholding dialysis while still administering narcotics was a Bad Idea. She recovers and is once again responsive to them. Now there are tests. What caused this? Well it seems obvious enough to us, but they do an MRI and CT scan to look for stroke or seizure indications. Finally they start dialysis. She improves, but she thinks she had a stroke, because she heard them talking about it. She struggles to communicate complex thoughts, but can express her frustration. We keep hoping that continuing dialysis while withholding narcotics will improve her state.
Tuesday my brother gets the call. "Does Mom normally struggle to put her words together." "No, she does not." They put her on Keppra for seizures, even though there is no proof she's seizing. They are reaching and we all know it.
After a few days, she's once again able to communicate with us clearly, although at times the sentences and thoughts wander, or are out of context. She's been through a lot. It's time to get her out of there and into a therapy program. She's matched up with an open bed at a rehab and we're told to get her dialysis cycler from her home to the facility so the staff can be trained. Now we are useful once again - we scramble and get the machine, and all the supplies we can load into my truck to the facility...and wait for Mom to be transferred there.
<continued>
Waiting For The Storm 1
It's been awhile, I know. And I also know I need to write this, but I what I don't know is if I can...or how long it will take...or if it will be in the least coherent. So there's that.
My last post was a fluff piece about taking my parents to the eye doctor. Since then, life as a poster-child for the sandwich generation has been full. Full of amusing moments, charming anecdotes, difficult days, demanding parents, and gut-wrenching heart ache.
In the months following Mom's return home from the skilled nursing facility, we eventually found our rhythm. What in days past had been our casual Sunday morning family breakfasts has become "get the parents set for the week" event. Between us, we pick up prescription refills, gather mail to pay bills, fill pill cases, restock Mom's room with dialysate, review supply levels for reordering, and talk about meal planning and groceries. Sometimes these mornings are contentious, sometimes they aren't. Mom's propensity for food hoarding is stymied by my weekly review of freezer, fridge and pantry contents. When I began to thwart her wish for two more pounds of butter (because somehow, five in the freezer and two in the fridge were not enough for a week, in her mind) one too many times, she found a work-around...asking my aunt to pick her up 4-pound packs at the wholesale club. There is an unholy fascination with gravy.
But we found our rhythm. It was hard to go there and give up the whimsical conversations about which critters were seen by whom, and under what circumstances, and to lose the innocent gossip of what this family member was doing (or not doing) now. We are now task oriented. We each have our logical division of tasks, with appropriate back ups in place for the eventual vacation or - mandated between my brother and I - weekend off from the stress.
So week turned to month and month turned to year. We begin to recognize that some of the demands Mom makes of us are her way of railing against her limitations. She is captive in her own house, dependent on the Dial-A-Ride bus for trips to the doctor and unable to go out and do things for others as she is accustomed. She strives to find those things in her world she can control - from requesting that trees be cut down, or items moved around the house, rugs taken up. We accommodate as we can. We are task oriented. Did we forget anything that needed to be done? What else can we do? What do you need?
Meanwhile, in the shadow cast by Mom, there is Dad. Going along, getting along, doing his best to take care of her without acknowledging that he's not able to, not alone. We are grateful for their caregiver, who herself seems to become a part of the family. Mom rails against her as well - "I do the laundry, I make the dinner!" - not knowing we're okay with it. We want Mom to keep doing whatever she can still do, and not just sit in her wheelchair marinating. We live the reality that is parenting your parents.
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My last post was a fluff piece about taking my parents to the eye doctor. Since then, life as a poster-child for the sandwich generation has been full. Full of amusing moments, charming anecdotes, difficult days, demanding parents, and gut-wrenching heart ache.
In the months following Mom's return home from the skilled nursing facility, we eventually found our rhythm. What in days past had been our casual Sunday morning family breakfasts has become "get the parents set for the week" event. Between us, we pick up prescription refills, gather mail to pay bills, fill pill cases, restock Mom's room with dialysate, review supply levels for reordering, and talk about meal planning and groceries. Sometimes these mornings are contentious, sometimes they aren't. Mom's propensity for food hoarding is stymied by my weekly review of freezer, fridge and pantry contents. When I began to thwart her wish for two more pounds of butter (because somehow, five in the freezer and two in the fridge were not enough for a week, in her mind) one too many times, she found a work-around...asking my aunt to pick her up 4-pound packs at the wholesale club. There is an unholy fascination with gravy.
But we found our rhythm. It was hard to go there and give up the whimsical conversations about which critters were seen by whom, and under what circumstances, and to lose the innocent gossip of what this family member was doing (or not doing) now. We are now task oriented. We each have our logical division of tasks, with appropriate back ups in place for the eventual vacation or - mandated between my brother and I - weekend off from the stress.
So week turned to month and month turned to year. We begin to recognize that some of the demands Mom makes of us are her way of railing against her limitations. She is captive in her own house, dependent on the Dial-A-Ride bus for trips to the doctor and unable to go out and do things for others as she is accustomed. She strives to find those things in her world she can control - from requesting that trees be cut down, or items moved around the house, rugs taken up. We accommodate as we can. We are task oriented. Did we forget anything that needed to be done? What else can we do? What do you need?
Meanwhile, in the shadow cast by Mom, there is Dad. Going along, getting along, doing his best to take care of her without acknowledging that he's not able to, not alone. We are grateful for their caregiver, who herself seems to become a part of the family. Mom rails against her as well - "I do the laundry, I make the dinner!" - not knowing we're okay with it. We want Mom to keep doing whatever she can still do, and not just sit in her wheelchair marinating. We live the reality that is parenting your parents.
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