it's almost like a blog in a blog. i'm planning on putting the entries on my 'regular' blog area and then adding them here, so if anyone feels the need to read it all at once, they don't have to go searching. i'm hoping to have this whole thing turn into an actual time line of my mother's illness, passing, and how i'm living without her.
i know, super depressing. deal with it. i don't feel like paying for therapy.
i know what parents must feel like when their kids leave home to be 'adults'. i know, it sounds silly. my high school guidance counselor always did say mom and i had this role reversal thing going on. but after my step dad died in 2003, my mom tried hard to maintain. she woke up, she went to work, she ate pepperoni and peanuts for dinner.
so we started going over every night after work, awesome husband and i, to cook dinner. mom wasn't ready to leave the comfort of her bedroom. i would lie on my step dad's side of the bed next to mom, watching wheel of fortune and smoking cigarettes. awesome husband would sit in a chair next to the bed while i made dinner. mom and i ate on the bed, he ate on his lap in that chair.
mind you, we had an entire house. there were a table and chairs downstairs. we ate dinner in her bedroom.
mom went to california to visit her sister and awesome husband and i moved in. we switched all the rooms around, surprised her when she came home. for mother's day, we bought a new fridge because i needed more freezer room. and the fridge in the kitchen was from like 1972. we were all together on the upper level of the house: awesome husband and i, my brother, my mom, our bedrooms all lined up like a proper family. we took care of each other.
we took care of my mom.
six months after we moved in, awesome husband and i finally got married. my father and mother walked in together. a good time was had by all (i'd like to think). i invited dad over for dinners, he'd invite mom out with us when we went out. we were a not a 'normal' or 'proper' family by any fucking stretch of the imagination.
but we were a family.
after a couple of car accidents that rendered me unable to work outside of the home, my mother losing her job, everything just changing - we picked up and moved to florida. our family was broken again, but it was our doing this time - we were growing up, becoming 'adults'. learning to live on our own. my brother and dad in new york, mom, me, and awesome husband in florida. my mom decided to sell her house in new york. my brother went off to grow up and become a brooklyn hipster who listens to better music than you - no, don't bother telling us what your new favorite pocket band is. he. listens. to. better. music. than. you. - and stop eating meat.
mom moved to florida so we could continue on our communal living adventure, we bought a house with a pool and a two car garage....
... and then mom decided to unfurl her wings and fly to california.
and it was one of the hardest years of my life. i mean, we had fun without mom. playing poker, drinking, naked pool parties, jello shots... good times, good memories. but i was just escaping. i started working from home for extra money. i thought about using again and was afraid when i was prescribed painkillers for a really bad bladder infection. i thought about not drinking anymore. i thought about killing myself. i thought about my mom. i thought about how after years of not having her because of my step father, after having him take her away from me, i finally had her back and i needed her. i remember just the thought - the stray, errant thought - of my mom dying would send me into a spiral of fear and shaking and terror. literal terror. i could not even contemplate the thought of life without my mom. surely, i would just kill myself because i couldn't live without her. i tried to be 'grown up' and not let her know how bad it was. that i slept 14 hours a day. that i didn't shower most days unless awesome husband made me. that i cried for her. i was 27 years old and crying for my mother.
through an odd string of events, my mom ended up coming home. we had her room ready for her, painted the color she picked out ("i don't remember it being so pink" she said). of course, she reorganized it immediately. she lamented the fact that she'd never been on a cruise before and booked one for us - just my mom and i. we scattered my step father's ashes off the ship on the way home from the bahamas. it was the only time my mother and i were totally alone for an extended period of time, and i loved it. we settled back into our communal living. mom worked from home with me. we went to new york for holidays and visits.
my mom and brother didn't talk on the phone too much. they both told me separately that talking just reminded them how much they missed each other. they missed each other terribly. i missed my brother terribly. he's my best friend. i know, it sounds strange. but he is absolutely my best friend. he always has been and always will be. i missed my ridiculous, diabetic dad and wanted to take care of him. awesome husband's parents (and grandmother, who's 90) weren't getting any younger. we had to keep flying up for graduations, holidays...
my mom didn't love working from home, but the job market in central florida is super lame. we started talking about returning to new york. we worked out some numbers. we looked at some options. we decided to move back to new york. and mom decided to look for a 'real' job first, then we'd sell the house and follow her up. she'd stay with my dad (24 years after their divorce, they were great friends) for a few weeks and then her and my brother would get a place together month to month. once awesome husband and i sold the house, we'd move up and get a house together. the way it is supposed to be.
the way it was supposed to be.
my mom went up to new york for a couple of interviews and was offered a job right up her alley: travel insurance. she spent 30+ years working in the health insurance industry and her most recent jobs had been in the travel/hospitality industry. i helped her choose appropriate clothes and shoes to pack. she took the two biggest suitcases we had. i helped her pack up her laptop and ipod shuffle. printed out all the bus schedules she'd need to get to and from work. told her how to sucker dad into dropping her off in the morning so she only had to get the bus home. we discussed options, outfits, the future, everything. she was nervous and excited. i was mostly excited - a new chapter for us all.
for a couple of weeks before leaving for new york, mom had been having a bit of a problem with her vision. she said it was like a small smudge on her eye, this one blurry greyish spot. but she could move her head or tilt it and see around it, those were her words. "i can see around it". she said she'd go to the eye doctor in new york, it was probably just stress.
mom was getting what appeared to be panic attacks. she was really nervous about starting the new job sometimes. she'd get a bit out of breath and get this spot of pain in her back. i'd help her calm down, we'd breathe together (since i'm practically the queen of panic attacks) and it would pass. she even said she could tell when she was getting upset - that spot in her upper back would start to hurt. it was probably just stress.
now we know better. it was cancer, cancer everywhere. in her lung, causing the pain in her back and shortness of breath. in her brain, causing the vision spot that would eventually result in a total loss of vision - less than a month after we had this conversation.
a fucking month.
mom's new job in new york started november 15th, so we booked her ticket the 13th. on the 12th a couple of friends came by to say goodbye and wish her luck. she went to bed early and we dropped her off at the airport. i spent the day with a good friend and then at epcot, hoarding all the bunratty meade that was left at the food & wine festival.
mom started her job on the 15th. everyone seemed nice. i spoke to her monday and tuesday. she hated the bus - hated taking it. hated the walk. we discussed alternatives. she was tired though - we had short conversations. on the 17th she went to the eye doctor - like we had discussed. my brother and sisterfromanothermister took her. the eye doctor kept her there forever, finally telling her to get an mri asap. mom was hysterical. we tried to be calm and to keep her calm. i talked to her on the 18th and mom seemed better. there wasn't anything that we could do now - just have to suck it up and get the mri. she was worried because she didn't have insurance, wanted to wait 22 more days for it to kick in. we wouldn't let her. i didn't talk to her on the 19th, that friday.
i got in touch with her saturday the 20th. she didn't pick up her phone, didn't call me back. finally i got an email from her saying 'call me now'. so i did.
mom was hysterical. she had fallen getting off the bus friday night. she couldn't see to dial the phone. she was afraid to cross the street because she couldn't see the cars. the difference from 7pm thursday night to 4pm saturday afternoon was terrifying. i consulted with my brother and awesome husband. i asked mom what she wanted to do. she said she wouldn't make a decision - she'd do whatever we told her to. i think she was scared: 56, re-entering the job market, sleeping on your ex-husband's couch, taking the bus to work - starting over. and now this?
"what do you want me to do?" mom kept asking me. she was scared: mom didn't have insurance yet. how would we pay for it? "it's not like they make you write a check on your way out of the ER, mom" i told her. "we'll do what we have to do - we would rather lose the house and have you".
we tried to call my dad, who was out on official revbobdad business. sisterfromanothermister got wind of what was going on through text and was immediately granted an early release from work. she and my brother ended up getting to my dad's the same time dad did, and they all trooped off to the emergency room together. by the time they got on the way, it was after 7:30pm. awesome husband and i tucked into some drinks and got on youtube to watch funny videos. nothing to do but wait it out, right? we figured worst case scenario, we had caught a stroke in time. awesome husband's mother had a minor stroke and had similar vision issues right before it happened. best case scenario, mom was super stressed out and it was manifesting physically. either way - we'd know. mom would know. she'd know what it was and how to take care of it and that alone would help her feel better.
around 8:30 i got an update from my brother: they had gone through triage, he went in with mom. he asked if i knew she had been spotting - i had, and was glad she mentioned it to the triage nurse. mom had gone through menopause like 7 years before (and i hope to whatever gods are out there that i have as easy of a time as she did with menopause) so the spotting thing was kind of strange. we joked about it before she left - "your uterus is probably just flushing the dust out" i told her. she agreed.
but her vitals were fine. everything was fine... except she couldn't fucking see enough to type or use the phone or walk across the street. i told my brother to keep me informed and let me know.
i think i got a text somewhere about an xray? cat scan? something like that. i was unperturbed - that's par for the course if mom's having trouble seeing. we had a few more drinks, and around 11:00 we went to bed. i put on venture brothers season 4. there's nothing on television late night saturday. adult swim goes all japanime.
it hasn't left the dvd player in my bedroom since.
less than two hours later, my life was about to change forever. i had no idea, punching awesome husband in the arm and telling him to roll the fuck over and stop snoring. fast forwarding through the first episode on venture bros. season 4 because i always stayed up for that one and fell asleep during the second. it's like every moment of that night ended up being etched into my memory. i mean, youtube. that fucking bed intruder song? the guys who did that have a whole load of songs like that. we watched most of them. and got sucked into the youtube vortex where you keep clicking and clicking and drinking and drinking. i was dirnking pineapple smirnoff ice. sounds horrible, i know, but it's like candy, i can't help it. like crack candy.
this was probably the last night i was 'steph gas'. i am, by nature, a planner. but all i do now is plan, make lists in my head, look at the sorted piles of mom-related things. it's like i have this picture: here you are, fat and happy, drinking horrible drinks and laughing at youtube vidoes with awesome husband. here you are, enjoying a stupid, simple moment of your life, snuggling with awesome husband on the couch singing along to the fucking bed intruder song. here you are, visions of moving to new york dancing in your head. already started holiday shopping. going to wake up a bit earlier than normal tomorrow to go see harry potter 7a. thinking about going to olive garden afterwards for their soup and salad lunch.
here you are, living your life the way you've been living it. trying to go according to a loose plan. drinking on a saturday night, getting ready for the holidays - the last ones you'll spend in florida - and planning your move back to new york.
here you are, you are here.
until the fucking map gets torn out of your hand.
awesome husband and i were snuggled in bed, visions of venture bros. dancing in our heads. we were both kind of drunk. i tend to sleep shirtless to let the girls run wild and free. also: because i hate that tight, clothesy feeling.
i know, i'm crazy. you should know that by now too.
so awesome husband and i were spooning, a couple of cats on the bed, warm and snuggly. i was half awake, in that state of coming in and out of wakefulness and listening to the venture bros. with half an ear. only a few hours had passed since we convinced mom to go to the emergency room, and my brother had updated me at around 8:30 letting me know that they'd gotten through triage. i think there was a text or two about a cat scan or xray.
we had gone to be around 11pm. at 12:38am that sunday, november 21, my brother called me again.
four hours. just about four hours had passed since mom went through triage.
i know i sound repetitive. but, seriously - four hours.
my cell rang and it was my brother. i picked it up and he just blurts out 'mom has cancer'. i was stunned and asked him to repeat himself. 'mom has fucking cancer' he said. i turned on my bedside lamp and sat up. i asked where and he said her lungs and brain. i then asked him if i could call him back in a minute. i hung up the phone and turned to awesome husband, who had woken up and was looking at me.
i don't remember what i said. i just remember crying and screaming and holding awesome husband. i do remember the warmth from our bare chests, my breasts smushed into his ribcage. i think i remember it because under the warmth, i could feel my heart breaking. it felt like my lungs were collapsing into themselves and a hole was being opened in my chest.
awesome husband and i clung to each other on the bed, crying, for a few moments. i remember my hands scrabbling on his shoulders, like i literally couldn't hold on. i remember yelling out, grabbing awesome husband like my life depended on it.
this was already the start of the grieving process for us, i'm sure of it.
i called my brother back for more details, what was happening now, how was mom, where was she, what were we doing. he informed me that they were moving her to icu. intensive care.
i told him i'd be there as soon as i could. this is where planning steph gas emerged (i'm not convinced she's ever gone back to wherever she emerged from). i was booting up my laptop before i hit 'end call'. we were suddenly wide awake. just about 1am i'm online and looking for flights, finding one for only $89 that day around noon. it wouldn't let me fucking buy it. i called one of my friends who came through with a credit card over the phone at 1am on a sunday. i have great friends. my dad called me around 2:30 after dropping off my brother and sisterfromanothermister once they left the hospital. it's the strangest conversation i ever had with my dad. he told me my mother seemed resigned when they told her she had cancer. we figure that maybe it's shock, maybe she's just not sure how to act yet.
awesome husband and i tried to go back to sleep. we put venture bros. on and cuddle with each other and the cats and tried to sleep. sleep eluded us for most of the morning. we spent a lot of the early morning hours staring at each other, staring at the television, staring at the ceiling. we finally started nodding off for a bit around 5:30am. once 8am rolled around, we gave up trying and i started packing. awesome husband drove me to the airport and kissed me goodbye.
i landed at jfk sunday around 3pm. my brother and sisterfromanothermister picked me up and we went straight to the hospital. my mom was in icu, hooked up to machines to monitor her heart rate and oxygen levels, an iv drip, and had those annoying oxygen tubes in her nose. but she was still 'mom'. as she saw me walk in with my brother and sisterfromanothermister, she started crying. then she got mad at me because i'd be missing classes.
of course, i didn't. my facilitators were really supportive and since the hospital had wifi, i was able to keep up with all of my schoolwork while i was up in new york.
we stayed at the hospital longer than we should have, spending time with mom. i learned that mom had a large mass in her lung and numerous lesions on her brain. that afternoon, one of the doctors stopped by and used the term metastasized. up until that point, we figured mom would be kept comfortable (we knew she wouldn't do the chemo thing) and we'd fight this bastard as best we could. once that evil fucking word was uttered, i realized it would be a matter keeping mom comfortable and enjoying what time we had left together - the holidays were coming up, and we'd definitely be able to fit one more family vacation in. no one was comfortable giving us a time frame yet - they had to biopsy the mass and determine what kind of cancer it was.
we left mom in the icu to rest and got taco bell for dinner. we talked about what we might be able to do for mom. we discussed who had to do what, who would call her job, how long i'd be staying. we talked about how we were going to fight this, how mom would stay in new york because we felt she'd get better care and all of the family is up there. how awesome husband and i would just dump the house and get to new york as soon as possible so we could all be together.
november 21st was a day my life changed forever. what i didn't realize, what none of us realized, was that it was only going to get worse. every day our lives change, i know this. but that week, every day changed our lives drastically.
part four really starts at day three of the journey. monday, november 22nd is 'day three', for all intents and purposes. late saturday mom went to the er, early sunday we got the first diagnosis of cancer, and monday morning had me waking up at revbobdad's after having slept in the same bed my mom was staying in. i packed up some underwear and tee shirts for her (in case they let her put them on) and asked my dad to drop me off at the hospital on his way to work. he obliged and i landed in icu with mom around 8:30am.
of course, not normal visiting hours. yours truly has devised ways of getting around those annoying visiting hours. they involve 'but i'm visiting from florida', 'but i can't come later', 'but the nurse said i could', etc. my technique with icu nurses is to be super cute and super nice and smiley and superhelpful. mom needs a pee? i'll grab the bedpan and ring when she's done. more ice water? i got it. lights on or off? done. after the icu nurses have seen me assist with 'their' job a few times, i mention that i really would like to spend time with mom while she's here, and i have my (book, computer, ipod, whatever) to keep me busy while she's resting. i usually do this while handing someone water or being otherwise helpful. icu nurse usually tells me 'oh, sure - just tell them up front that nurse fillinmynamehere said you can come back'. it's worked every time i have had a parent in the icu so far.
yes, it's happened more than once. revbobdad had a few bouts with ketoacidosis that landed him in the hospital/icu a few times now. yup.
anyway. so i set up camp in mom's little icu cubby and tried to get her to eat. she ate a little bit but was kind of weak. which is understandable because she hadn''t actually eaten anything useful since saturday morning. i got her some ginger ale and turned on the television. and sat with her all day. she was talkative and jokey some of the time, and resting the rest of the time. i'm sure this is the day they did the biopsy and some other tests, but i can't be sure without looking at the HUGE PILE of medical forms and bills that i'm steadfastly ignoring. my aunt came to visit that night and was like 'stay at our place, use our extra car' and i was all yes, please. so i had a car for a few days while mom was in the hospital.
monday was the day, if i remember correctly, where we heard the other organs were involved. originally we had lung and brain. monday we added liver and spleen to the list. no one was even mentioning chemotherapy, just radiation to keep the swelling in the brain down.
so, nothing for the lung mass? the actual cancery bits?
nope. and no one would give us a time frame. this is when we (when i say we, i really mean mom, my brother, and i - awesome husband and revbob dad figure into a lot of this too, but so much of this was really me, mom, and my bro) realized that the family vacation might not be an option. but we'd have the holidays - mom would stay in new york, awesome husband and i would dump the house and just settle the mortgage, and we could be together for the time we had left. we were kind of guesstimating a couple of months, three or four maybe.
tuesday i set off a bit later, and it was more of the same. except this day we had some visits from social workers. one who helped mom and i set up her healthcare proxy (me). one who started the paperwork for her medicaid application. we had long conversations with the worker who helped us set up the proxy. sharon. she was very nice, very smart, and cursed in front of me. i appreciate a professional who can say 'shit' in the right context and know it won't offend me. it makes me feel like i can be more like myself. my mom's best friend from childhood came by and made mom eat some cake. which was nice. mom was still not eating a lot, mostly sipping water and eating bits off the trays of food they brought in. but she was still 'mom'.
we knew we didn't have long. we were talking about being able to take her out for thanksgiving. her friend was talking about taking mom to her house to care for her because she would need help - real help, not the kind of help i could give her. mom's brother and sister offered rooms to sleep in, cars to drive mom to appointments, whatever we needed until we could all be together again.
my one aunt even offered to let our loud, shouty, obnoxious cat taylor come stay with her so mom could see him one last time. i would have liked that. i think taylor would have too.
we had that blow on monday, that the cancer had spread. tuesday was the first time anyone offered a stage - stage IV. lung cancer, stage IV, also attacking her brain, liver, and spleen. and gods knew what else at that point. we revamped our ideas - a few weeks, right? it was almost thanksgiving, we'd have till the holidays. the new year. we'd spend it together in new york, as a family.
yeah, our lives change every day. they change depending on choices we make, paths we take. saturday we had a mom that was freaking out because she couldn't see right. by tuesday night we had a mom in icu with stage IV lung cancer that had spread to multiple sites and was not treatable.
things were about to change again.
huh. that was a first. stage IV lung cancer, in the brain and wherever the fuck else, and just NOW she was in pain. okay, well when did she get it? EIGHT hours ago? shouldn't she be up by now?
the nurse looked at me. like, really kind of looked at me, and said that the morphine would have worn off for most people, but you know, depending on their tolerance.
oh, haha, i said, mom can't even drink a second rum and coke. so she's probably just, like, REALLY out of it from the morphine, right?
the nurse smiled at me and walked away. not a laughy smile either, kind of sad.
okay, we can deal with this. i booked a plane ticket for awesome husband to come up because we knew it would be the last thanksgiving we'd have together as a family. i was hoping mom would wake up and be coherent enough that we could convince the doctors to let us take her out for the day.
i don't have any real memories of this day. i'm sure some aunts and uncles and cousins came to visit. i know my dad was there at some point. doctors and nurses and bedpans and needles and whatnot. i don't have any real memories of this day because NOTHING HAPPENED. mom slept. all day. she would kind of wake up and grunt if i poked at her enough, but that was it.
i asked the nurse how much morphine they had given her.
not that much, was the answer i received.
not enough to keep her out for twelve plus hours. not so much that she should be this unresponsive. not that much.
well, you know. she's sick. and tired. we'll just let her sleep.
i would say 'i love you mom'. and she'd smile a bit, not opening her eyes, and say 'you too'. i said 'i love you mom' more times in that week than i think i have my entire life. i needed her to know it. i didn't know how to else to tell her without upsetting us all. 'i love you mom' never meant as much as it did that week in ICU, or the following week in hospice.
thursday morning i picked up awesome husband from the airport. my dad, brother, awesome husband and i trekked to the hospital. mom was still asleep for all intents and purposes. there was another uneaten tray of breakfast next to her bed, unsipped water. did she get more morphine?
no, the nurses told me. she'd just been asleep.
i approached one of the nurses, pressing for information. i live in florida, i have a house and cats that need attention. when are they going to start radiation? when will she leave the hospital? what's going on?
thanksgiving morning i was told 'i wouldn't plan on going back to florida' by mom's nurse.
when i heard that, i lost it. DAYS???? that means days. we have days?? just days? what happened to another family trip? even a weekend getaway? mom seeing the cats again? one last holiday season with her? radiation therapy to keep the swelling down and make her comfortable, her vision coming back until the end?? what happened to all that? where did it go?
i had to leave the hospital and go to the house my mother grew up in, where her brother and sister and their families were gathered, and ask to speak to them all in one room. i had to tell them that they told me not to go back to florida and that there was nothing we could do. i was 30 years old, my brother 26, and we had to tell everyone that chemo wasn't even an option, radiation wouldn't help, it would just make her sicker. that there was no operation or medication or anything that would change the fact that we had days. so few days that i shouldn't bother booking a ticket home.
they wanted us to stay there, and i understood. but there was other family there, the other side you know? my mom's brother's wife's family. not that i don't know them and whatever, but it was awkward - hi, we're all here waiting for my mom to die, but you all go ahead with thanksgiving. i couldn't do it. i wanted to go to my dad's brother's house. the small side of the family: 10 of us all together, including significant others. the house i could drink at without feeling funny or ashamed. the house i could cry and curse and hug at without non-family looking in (not NON family, but you know - not immediate family).
we went to my aunt and uncle's house. it was somber, to be sure, but in a thoroughly 'our family' way. we mourned, of course, but we laughed. we remembered mom, we talked about her, told stories about her. it was good, it was sad - but it was good.
until i finally got in touch with that one hold out family member. thanksgiving was already turning out to be a shitty holiday, but it was about to get a whole lot worse. thank gods i was with the part of the family i love drinking around. we were all going to need it.
after delivering the news to mom's brother and sister in new york, we went to my dad's brother's house for thanksgiving dinner. much drinking was done. we talked about mom and life and stuff.
i had been playing a strange version of phone-and-internet tag with my mom's older sister in california. they had been close years ago but had not spoken in some months. when mom was first in the hospital, i posted it on facebook and tried to call my aunt with no answer because i had the wrong number. i tried to get her to email me and all she did was email me her number. so i tried to call her and left her a message. mom had been in the hospital for five days already and her sister finally called me back around 10pm on thanksgiving night.
a bit of background here. no one else in the family really spoke to this aunt. my mother's other sister and brother had their own issues with this aunt that i don't have anything to do with. my mom, my brother, and i had always maintained a relationship with this aunt and my cousin in california. i used to spend summers out there to hang out with my cousin (she's only six months younger than me). my mom and this sister were close and not close over periods of their lives. this sister was not always nice to my mom, and we'll just leave it at that for now. but seriously - NOT NICE. my mom had spent a year living in california with my aunt and uncle. there are many reasons why she came back to florida, which again i won't get in to here.
still in background phase, my aunt and mother had a bit of a falling out in the spring of 2010. we all worked from home with the same company. i ended up starting my own company to save money (it's long and confusing, don't make me explain it. the company we worked under took a percentage of our pay, i didn't do that in my company). i was able to add my mother to my company as vice president and save her money too. i told the president of our old company i was leaving, then mom told them she was leaving. and the president of the old company contacted my aunt like 'are you leaving too?' this set my aunt off for some reason. she emailed my mother saying she was hurt that my mom didn't tell her about this, my mom wanted to call her because she doesn't like email, my aunt refused to take her calls. the emails went back and forth and back for weeks. the end of it was that my mother apologized, my aunt wouldn't accept it, and my mother decided she was not going to engage my aunt any longer. my mother decided my aunt was toxic (the same conclusion her other sister and brother had come to) and stopped talking to her. the only contact they had after that was when my mom didn't show up online to work for a few days, my aunt emailed her to make sure she was okay. my mom responded that she was, and that was that. when we decided we were moving back to new york, my mom sent her a quick email to let her know and my aunt did not reply.
fast forward back to mom in ICU. mom did not want us to tell this aunt that she was in the hospital. mom did not want us contacting this aunt. mom did not want this aunt to come or call or anything. my mom's friend and i convinced her that we should let this aunt know - i mean, they were sisters. so i had tried to contact her.
and on thanksgiving night, she finally called me back. it was after 10pm EST and we were done with dessert. i had had a couple of drinks and we were all sitting around the table, just bullshitting, when my phone rang. i took it into one of the bedrooms to have some privacy.
i told my aunt that my mother had stage IV metastatic lung cancer that had invaded her spleen, liver, and brain. i told my aunt that my mother had been sleeping for a day and that they told me not to bother flying back to florida. i told my aunt that my mother was dying.
my aunt told me that she 'doesn't do funerals'.
there was more to the conversation: my aunt telling me that my mother would only want comfort care, my aunt telling me that she knew what my mother wanted, my aunt telling me that she talked to my mother about this, my aunt telling me that she knew my mother best.
i didn't really register most of it past 'i'm not coming out because i don't do funerals'.
she never asked how WE were doing, my brother and i. she never asked if WE NEEDED HER. she only told me that she knew what my mother wanted, she only tried to make me feel like i wasn't doing what was right. she told me to tell my mother 'if she wants me, i'm here but if not, then go with god'.
my mother was lying in ICU, dying at 56. i was 30 years old, on thanksgiving night, having just told my mother's entire living family that my mother was dying. and my fucking aunt told me 'i don't do funerals' and 'if your mother wants me, i'm here, but if not, then go with god'.
i never told my mother that we called this aunt. i didn't want to upset her.
i have always tried to live by a motto of sorts: no remorse, no regret. what's done is done and we cannot change it. but if there is anything in this life that i might regret, it's answering the fucking phone that thanksgiving night and engaging my aunt. because this started months - MONTHS - of bullshit back and forth between this aunt, myself, and my brother. this begun MONTHS of fighting over money and possessions, MONTHS of this aunt holding money over my brother's and my heads to try and get things that she wanted that were my mothers.
i took a long time thinking about this post and trying to figure out what to write. i know some family members read my blog. and my blog is semi-anonymous, so anyone can read it and if they know me, they know who i'm talking about. including this aunt or her daughter, my cousin, whom i've tried to maintain a relationship with.
thankfully, after i got off the phone with this aunt my other aunt (dad's sis-in-law) had a large bottle of bailey's for us to enjoy. and enjoy it we did.
i was glad awesome husband had flown up thanksgiving morning. we stayed at his parents house, and i cannot express in words what it meant to have him holding me that night.
black friday was the next day. usually i'd go to the mall to make fun of people shopping, or do a teeny bit of my own shopping. instead i spent the day at the hospital - the last full day we'd be at the hospital. because mom was going to be moved to the palliative care unit and then, hopefully, they'd have a bed for her at a local hospice.
i know it's been a long time since i wrote about my mom. i don't know why. after i posted part six, my cousin (the one whose mother was mentioned in that post) left a lengthy comment about what i wrote. of course, she only knew her mother's side of the story. and i only know my mother's side of the story. i've seen the emails, i spoke to my mother about it. i can only write my truth. and i responded to her comment on my blog with that basic sentiment - i can only write my truth. after a day, i decided to delete both her comment and my reply to it because this is my damn blog. this is my place to say what i want - to speak my truth - and i'll be damned if i let someone else tell me what i can and cannot say here.
i'm sorry that what i wrote upset her. through everything between her mother and me/my brother, my cousin was supportive and caring toward me. we didn't discuss much about our mothers, but we still had a relationship. after that blog post, we no longer do. and that was why i waited so long to post that part. i knew that she would read it - i knew that there was a huge possibility that the aunt in question might read it - and i knew that i would have to deal with fallout. so along with losing my mother, i lost an aunt and cousin during this process. all part of life, i suppose. but that doesn't make it any awesomer - it just makes it 'life'.
i woke up black friday at my in-law's house, sleeping on a fancy air mattress and entangled with awesome husband. we had another long day at the hospital because mom was to be moved from icu to the palliative care unit. this was in the regular hospital and had a much different ebb and flow than the icu. i had already proven myself to the nurses in icu, and they were already used to me sitting by mom's bedside all day long. now i had new nurses to deal with.
and it did not go well.
mom was very sleepy at this point. she would wake up if we prodded enough, but she spent most of her time resting with her eyes closed. i asked her if she wanted water or broth or anything from time to time; the answer was generally no. awesome husband and i were at the hospital early, wanting to be there a soon as she was moved. we went up to the palliative care unit, where she was in a double room - i don't recall if the other bed was occupied. i was faced with a new set of nurses that i had no existing relationship with and i was not happy from the get go. for those not familiar with palliative care, it's about just treating symptoms and keeping someone comfortable. palliative treatment does not cure anything. my brother, husband, and i had decided the day before not to feed my mother any longer. we knew it was a matter of days, and we were waiting to hear from the hospice. we offered her water, which she sometimes sipped at.
icu nurses are different. i don't know how to explain it. my mom was in icu for a few days; my father's been in icu a few times as well as the 'regular' part of the hospital. icu nurses move faster and seem to smile more. everyone knows how shit's serious in the icu; these nurses seem to exude a ridiculous level of confidence and compassion while not taking any bullshit. i don't have nurses in the family, i don't really know what the difference is between nurses. but i've always felt a much different vibe from nurses in the icu than anywhere else. when i've had a parent in the icu, as long as i stayed out of the nurse's way and made myself useful, visiting hours didn't matter.
i've had nurses in the regular hospital units try to shuffle me off at the end of visiting hours. i've usually not listened to them. i'll apologize to nurses now for ignoring them. i stay out of their way and make myself useful by getting broth or water, or helping my mom with her bedpan (i think that's what endeared me to the icu nurses, tbh).
so. we get to this palliative level. at first there was a male nurse that seemed okay. he told me when my mom had been moved, that she hadn't really woken up or responded when breakfast came. WELL. then this other nurse came up at me, and this chick rubbed me wrong from the get go. i felt like she was rough with my mom and i didn't like it. mom was moving her mouth and i thought she might be thirsty, so i was kind of bugging her to see if she wanted some water. this nurse walks around me and sits next to the bed, opens this applesauce, puts it on a spoon, and PUTS THE FUCKING SPOON IN MY MOTHER'S MOUTH, telling me something along the lines of 'this is how you have to feed her, you have to put it in her mouth for her and then she'll know to eat it'.
this was probably the single most upsetting and angering thing that has ever happened to me in a hospital.
we weren't force feeding my mother. we weren't trying to get her to eat. we were trying to keep her comfortable. she was practically comatose. and this bitch was force feeding my mother. for one of the very, very few times in my life, i was speechless. i didn't know what to do. i think i may have started crying.
friday night, all of my mother's family came. her brother and his wife, her sister and her husband, and at least three of my cousins (i think all four may have shown, but i can't remember for sure...). this was the first time we were all together since i told them she was dying, that there was nothing we could do. this was the first visit during mom's 'end of life' phase. i remember one of my cousins really helping me feel better: she's a social worker and works with end of life cancer patients. i always wondered how she did that; it must be so sad, everyone dying. but talking with her, i realized it wasn't all sad - it was an opportunity to support a family and help them be strong.
black friday night. everything was happening so fast, and each day passed so slow. i don't think mom had opened her eyes in two days at this point. but it was the last night we spent at the hospital.
saturday i got to the hospital fairly early and parked next to mom. there was a nurse on this unit who had been talking to use about hospice inn, this wonderful unit on the grounds of a nursing home/assisted living compound. there were like 15 beds for end of life care. because we had *just* filled out my mom's medicaid application, she technically had no insurance or anything. this woman, this liaison, had been working on getting my mom accepted as a charity case. this woman, i think her name was marianne, along with the social worker named sharon and a medicaid liaison named ken, helped make everything so easy. sharon helped us fill out healthcare proxys and taught us about the law, ken helped me fill out medicaid applications and told me exactly what we needed to gather for mom's medicaid application, and marianne helped pull whatever strings there were to get my mother a bed at hospice inn on saturday. when the ambulance company said they wouldn't transport my mom without payment ($600+ of payment), she worked something out between ambulance companies and the hospital and i don't know who else and got it done.
i think it was early saturday afternoon when we followed the ambulance to hospice inn. it was amazing. she had her own room with a large hospital bed. there was a little radio with a cd player, a television with a dvd player, and a comfy reclining chair. there was even a cot that i could use if i wanted to sleep in the room with her. there were extra pillows and blankets. she had her own bathroom in the room (not that she'd use it, but we could - even the shower). there was a kitchen area where they had coffee, tea, and hot chocolate. the fridge was stocked with things for us and the patients, and some people brought in their own stuff and labeled it. apple juice, little ginger ales, water and milk. and we were told we could have any of it if we wanted. every day, someone brought in cookies or coffee cake or some kind of sweet treat. there was a common room with a computer that had internet access, a big screen tv with a video game system, board games, and books. they had a prayer room and a masseuse came in a couple of times a week to give the family members - the caregiver - neck and shoulder massages. at the other end of the unit was like a solarium. it was all windows with cushioned wicker furniture. the doors closed and it was big enough for an entire family (we once went to sit out there and saw just that - an entire family eating a take out dinner together. we went to sit somewhere else.) and it was always so warm in there.
it was november 27, 2010. my mom had reached the place she would spend the rest of her life. and it was a beautiful, wonderful, caring, supportive place. i could cry and the nurses would know. the had social workers to help. bereavement counselors called me to check in for almost two years after my mom's death.
in lieu of flowers, we had asked people to donate to hospice inn. they did all this for my mother and did not charge us a penny. they accepted her as a charity case and made the last week of her life comfortable and dignified, and gave us - her family - a supportive, loving place to be with her.
i was thrilled to see how many people donated to hospice inn in my mother's name. if you want to learn more about the place that took care of all of us when we needed it most, click here to learn about hospice inn.