it’s february 27th, 12:16 am. i know things will get worse, and i think about that a lot.
today when i got home from work mom was outside with the dogs. i dropped my work bag full of storytime books down on the porch to make room for her in my arms, where she sobbed. quiet, pained, high pitched, desperate, angry, sobs.
something has to change, she says. she can’t take dad being so sick. she needs more help.
the thing is, we have so much help, but no one can save us.
we have family and medical professionals at our door every day. we have so much help, but we are still drowning. we have no idea if anything we are doing is right.
i wish i could ask dad what was right.
monday is adam’s birthday. adam, who i have trapped. adam, who lives in this house with my dying father and grief broken, schizophrenic mother. with our animals who all need to go to the vet for various ailments. in our house which is filthy and has more broken things than functional things. in our house which has mice poop on the countertops, mold on the sunlights, dead light bulbs in every fixture, squirrels scratching in the ceiling.
yet adam remains here with me. they help me get through each day. i wish i had the energy, the money, the capacity, to give him a nice day on his birthday, something unforgettable to pay them back for everything they do. but i cant, so i will try to cook some things he likes and i will give him small gifts and i will try not to cry at all.
i will hope that when the worse times come and go, that he will be less burdened, that he won’t resent me for these months of constant agony and upheaval, that we won’t be too scarred to be happy.
everyday is very hard. i take dad breakfast and then i clean until i have to go to work or until someone arrives at the door. i make phone calls, i answer phone calls. “ok thank you ma’am we will expect you sometime between the hours of noon and 2pm, thank you so much.” “no, we still do not have those supplies” “what does pallative care mean?” “is occupational therapy coming this week?” “what is the status of the urology referral?” “we think dad has lost hearing in his right ear.” “adam baby please don’t quit your job” …after work i come home to mom and dad and adam and whoever else may be there and eat and help with dad and if i have any energy i will clean or put whisky in some soda and watch a movie (in which someone will inevitably have cancer) which adam may make it halfway through before they succumb to their exhaustion and then it’s time to lay in the dark and spiral.
when i sit in the room with dad i feel intrusive. he cannot speak to me. i’m afraid to turn on a movie or show to watch with him, for fear that he wishes for quiet or dark but cannot ask for it. afraid to talk to him because he has difficulty understanding. i don’t want him to have to try to understand. i hate talking to him like he is a child. i hate feeling like i don’t know how to talk to him. if i stay out of his room, i feel cowardly. stupid for wasting what little time i have left with him. there’s a knife twisting in my heart either way.
my mother needs help turning dad over to keep him clean. she will not allow adam or i to help. dad should be in a skilled care facility, but he wasn’t improving and they told us he would need to be transitioned into long term care. it came to the point were we would have to sell our house, so we brought him home. maybe we should’ve sold the house. maybe we still should.
mom is in charge of dad’s medicines, and currently every other aspect of his care as well. dad is bed bound. mom was a nurse, like him. she is in that room with him almost all day, every day. she is paranoid schizophrenic, and she is also on quite a lot of pain medication. so much that she falls asleep sitting up, falls asleep mid conversation, buys things in her sleep, eats chocolate in her sleep. i help as much as i can, but i have to be careful, she turns into a teeth bareing, hissing, hazard if you don’t play your cards exactly right.
you cannot ever show doubt in her ability to take care of dad. you may try to say something like “can i grab you his insulin from the fridge?” because you know she has forgotten to check his blood sugar before a meal. or maybe, “can i empty his cath bag for you?” because you see that it is full, but she will not be grateful, she will be angry. you have to though, and you have to suffer whatever she puts you through in retaliation.
dad married her to save her from her abusive family. he was always loyal to her, even though they are very different, even though they have opposite dispositions, even though she has always been difficult. he has been her protector and teacher their whole lives together. she has always been nonsensical, childish, stubborn, paranoid. i never knew she was schizophrenic until this year. i am so afraid of what she will become when he is completely gone.
we need so much help, but mom is suspicious of all help we receive. when people bring food over, mom begs them to stay longer. but she is upset and annoyed when we get a message from anyone asking to come by. when they try to help with dad’s care, mom feels as if they are over stepping, that they don’t think she can handle it, like they are going to take him away from her. maybe they should.
i thought my situation was bad before. before all this, i laid awake at night worrying about my job at the library. worried about managing my anxiety as i sang in front of families at story time, tried to manage my anxiety enough when interacting with patrons and my coworkers to seem stable. working at a library seemed so idyllic, but not only does it involve public speaking which i am borderline incapable of, but the local libraries are under attack from a hostile library board full of homophobic shitheads. everyday when i go into work i get bad news. more drama, more fuckers hatemongering in the community in order to say they are protecting children, when of course we know they just want to perpetuate a world where queer children would rather die than suffer the discrimination of the world their family enables. they’ve told us we have to remove as books containing “gender ideology” from our shelves. this is not hyperbole, this is what is actually happening in at least 4 libraries in east tennessee right now. books are already off the shelves and they are demanding more be removed.
now the teeth vibrating brain scrambling hands shaking anxiety which i’ve coped with for two years has a new companion. my dad has terminal brain cancer and i will never have another normal conversation with him again. i don’t know if he will ever get a little better again. mom and dad and adam and i will keep getting through each day and we know that things will only get worse. my brother has been sick for two months with a cold and cannot help because dad’s white blood cell count is too low. i miss my brother. i worry about him everyday.
i have missed so much in the time since dad’s diagnosis. it feels like i am still in september of last year. i haven’t been able to see my friends, haven’t been able to show up for them. i haven’t be able to leave my town. i fight tooth and nail to do the best i can at home and at work. each day is so long, but there’s never enough time to feel like i got enough done.
a home health social worker is coming tomorrow. i’ll be at work, so i am making a list of things for mom to ask about.
i will make a walmart delivery order to get ingredients to make adam bread and hummus and dolmas and spanakopita on monday.
it is now 2:23am february 27th, 2026.
i will get though tonight. i will not have a panic attack and wake adam. maybe at 4 am i will wake up enough to return the kiss they will give me before going to work. i will make mom and dad breakfast. i will finish the grocery order. i will finish the list of questions for the social worker. i will clean. i will sing to the babies at work. i will show compassion and patience with strangers. i will not give in to the desire to scream and collapse and break things. i will decorate the bulletin board at work with cheerful ducks for march. i will receive aunt judy at dinner time and hope dad eats some of the meatloaf she is bringing. it will be a friday so i will be able to see adam for more than 4 hours total. i will get through tomorrow. i will take it hour by hour.
gamechangershow
amandla
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