broken record

i'm all out of sorts, again. AGAIN. i hate this feeling. A is back in town, and immediately my stress level rockets skyward. i realize it is her way of dealing with things, but i feel as though every thing i do is questioned and made out to be not as good as what she would have done. i'm trying to be really fine with it, becuase everyone deals with things differently. it's also a combination of realizing that the upcoming weeks/months are going to be fraught with the anticipation that we're going to fall downhill at any moment and then it's all going to be over, and i don't want it to be over. i don't want her to die, or have a stroke, or have any of these other horrible side effects that come with brain tumors. i just want my mom back; i don't want to lose her. i had a dream this morning that i was at a cemetery, and there was a cafeteria, and everyone was all happy and chipper,and even though i wasn't sure she was dead yet, i went and lay down on top of where her grave would be. and there were big fat snakes everywhere, and it was just so disturbing on so many levels that i couldn't shake the feeling all day. i don't want to keep going with school, or the internship, or anything becuase i feel as though it will preoccupy my time when i just should be hanging out with my mom and figuring out new ways to make her laugh and not take things too seriously. and i'm starting to lose my appetite, which i realize is psychosomatic but that doesn't make me want to eat. and i hate crying because it gives me a headache, so i fight the urge as much as possible until i sit down to write these entries and then i'm half-bawling, half angry with myself for crying in the first place. this is just such an awful situation, and the only thing that will make it go away is when she's gone, and that's not what i want, so i'm left in this terrible purgatory-esque state with nowhere to go but down, realistically.

i'm back

i'm back. well, i've been back, but staying at my parents' house while A was in nyc. i couldn't sleep on the entire vacation. one night i had a sleeping pill, but the remaining 7 nights were filled with anxiety nightmares because i wasn't at home. apparently i missed a bad episode, but then they called the hospice people, who swooped in and saved the day. i'm totally in love with hospice. i always had this nebulous idea that hospice was a building filled with dying people, like an elderly ward at a hospital. now i realize how wonderful they are-we're not alone in this anymore. but i still have problems sleeping. apparently D said that he could see changes in my face and my voice; i became more tense the closer we got to coming home.

but i made it home, dealt with my grandmother and her rampant favoritism towards my aunts, and held my tongue which was a personal triumph. school starts next week, and it has either the potential to be really challenging and rewarding, or a complete waste of time and money when i should be home with mom. hopefully the former, not the latter.

monday's questions

today was the second hard day in a row. today was phyically and mentally demanding, whereas yesterday was just mentally difficult. i'm starting to realize that perhaps the timline given very ubruptly last week by a very insensitive general doctor was more on the mark than i wanted to believe.

mom's body is beginning to shut down, and she's starting to realize this, which is devastating. we can really no longer move her, which cements her bedridden status which i took to be a choice, not a necessity. now i realize how wrong i was. we're headed into final stages, and i just don't want her to suffer. and i feel like she's suffering now, and my solution of moving her downstairs to minimize the nausea and vomiting is falling on deaf ears, just as it did last week. i'm really not sure what it is going to take: either we stop all treatment and keep her upstairs for good, or we continue treatment that is not going to work (realistically, honestly, and all that) and move her downstairs.

i was on the receiving end of some of up close and personal physical deterioration today, but missed the other major bout where she was crying and unhappy and realizing that her body is really incapable of functioning in a way she can understand. and that's really difficult to hear. i thought in the beginning that mom didn't understand what was going on; now i realize that she understands everything pretty clearly (some things not as well, but when she focuses she really gets it) and she knows that things are not good.

i just want to protect her from any type of hurt and sadness that i can, even though i'm the daughter and she's my mom. i hate this role reveral. it shouldn't be this hard this early in life. this is particularly long and drawn-out, and it's so very grueling to watch the erosion take place. i'm worried we're done with the plateau and are heading into a very bad landslide, much of which will occur while i'm gone. what can i do from 5,000 miles away? will they even tell me how bad it is while i'm gone? and will i even want to know, or prefer to pretend that it's going to be ok so i don't feel as guilty being gone?

forgetting about yourself

when you're a caregiver, you forget to take care of yourself. you're so concerned about everyone else that keeping yourself in shape and remembering to eat well that exerciseand diet flies through the window.

then one morning you wake up and cannot remember how you gained weight or why walking up stairs causes you to lose your breath. and then you remember that you haven't gotten a haircut in months, or purchased any new and nice clothing in ages, and certain garments are tight where they used to be loose. how did this happen? you pay so much attention to details. you're the one who makes sure the others eat right and exercise, and yet you've neglected yourself. you're so exhausted every night that you don't have the energy to move, let alone work up a sweat.

and you miss the old you, and would give anything to go back to before you had to be the caregiver, before the person you're taking care of was sick, when you had the money and the desire to make yourself look good, and the time to spend on yourself. and you wonder where it's all gone, and if you can ever get it back again without losing the person you are taking care of at this particular time, and it's another heartbreaking reminder of the emotionally and physically exhausting situation.

ps-i did exercise, and i felt phenomenal and rejuvenated and amazing.