Caregiving 101

Days On End: A Routine Ad Infinitum, Ad Nauseum

written in such a way as to bore you, in an effort to really hit home how monotonous and strenuous it is to be a caregiver for two parents at once.

my dad’s diagnoses include parkinson’s with lewy body dementia, kidney disease, a strangulated hernia (which we’re tending with “watchful waiting”), repeat ileus, a fractured hip, osteoarthritis, idiopathic pulmonary fibrosis, some kind of anemia (which i can’t recall at the moment, but which makes him susceptible to infections), thyroid disease, and prior TIAs. he is legally blind, having not tended cataracts. also, years ago, he broke the third finger on his dominant hand, but refused medical intervention. so, it healed broken, and would require surgery to fix. because this finger remains broken, and is now complicated by nerve damage, he has no grip strength in his dominant hand, making it difficult for him to participate in his care or to do much of his own care. holding cups or utensils is nearly impossible.

my mother’s diagnoses include vascular dementia, kidney disease, severe osteoporosis and osteoarthritis, three historical MIs, a historical TBI, a calcified aorta and prolapsed valve, COPD, raynaud’s, MGUS, thyroid disease, etc, etc, etc. she is also legally blind, having not tended cataracts. every finger on both hands have been broken and left untended. she has no grip strength.

both caught covid while hospitalized in january of this year. both developed long-covid.

everyday, an alarm on my cell phone sounds at 4:10-pm.

i leave my home and drive to my parents’ house, a distance of 1.4-miles, which takes between 4 and 8-minutes.

arriving at my parents’ house, i enter and immediately take my dad to the bathroom, grabbing a pre-”made” change of depends on the way. i wheel him to the toilet, set the brakes, help him stand, latch him to grab bars, cover him with a bath towel, blindly drop his pants, blindly remove his depends, and lower him to the toilet. then, i leave him long enough to push his wheelchair out of the bathroom, into the hallway.

i stand and wait. when i hear the end of his “stream,” i awkwardly reach over him, turn on the bidet, count 18 “mississippis”, then turn off the bidet. i kneel on the floor aside him, remove his shoes and pants, slip on the fresh depends, and help him stand. once he seems stable, i latch him to grab bars, pat his bottom and “undercarriage” dry, blindly pull up his depends (making sure the inserts aren’t crumpled), and blindly pull up his pants. i leave him for seconds, only long enough to pull his wheelchair back into the bathroom.

i wheel him backwards, stopping at the sink, and wait for him to wash and dry his hands. then, i remove him, and wheel him to the kitchen.

i gather my mother, and deliver her to the bathroom. because she can walk, but uses a walker, this is slow. she can toilet herself, so i stand outside the bathroom door and wait for her to finish, watching like a hawk for her to turn on the faucet. she hates to touch water, so tries to avoid washing her hands.

we walk to the kitchen, where my mother joins my dad.

then, i return to the bathroom. i clean pee off the floor and the toilet seat, if necessary. i wipe counters and any damp spots that were made by splashing water or shoes that stepped in pee, tracking wetness across the bathroom floor or through the house. i end my chore by taking out the bathroom trash.

before making dinner, obviously, i wash my hands. then, i prepare an “appetizer.” this is typically fruit. if i’m particularly tired, i microwave pre-made meals, all of which i—personally—cook for them in bulk every 3-1/2 days.

if my parents are cranky, and if i have even a remote shred of energy, i make sandwiches. this is their favorite “food.”

it’s “required” that their bread is toasted. then, it’s coated with mustard, topped with two different types of cheese and two different types of lunchmeat. on my dad’s plate i can add cherry tomatoes, carrots, cucumbers, and pickles. my mother refuses to eat anything with seeds, so… i can add only carrots and pickles to her plate. i always give them a bowl of potato chips to share. they each get to choose “fizzy or flat” drinks (seltzer or plain water), and they can order “rocks or no rocks.”

while they eat, i count out gummies: B12 cranberry, culturelle, maty’s acid & indigestion relief, senokot, electrolytes, manuka honey digestives. for my dad, i mix a lion’s mane drink and miralax. for my mom, i fetch pills and applesauce and a spoon.

sometimes they humor me, and they accept a bowl of soup to go with their sandwiches.

with what time remains, if they’re sitting quietly at the kitchen table, i prep the coffeemaker and mugs for morning. i put out water for the next day, 48-oz for her and 80-oz for him, a mixture of “fizzy and flat.” i also use a sharpie to label which bottles and cans belong to whom, and number them.

i prep breakfast, which is always a homemade egg mcmuffin with sides of fruit and small pastries, and a selection of milk and/or juices, leaving everything on a tray in the fridge for my wife or the caregiver. then, i check phone messages and make callbacks. i don’t care if i’m always calling back after hours; at least i respond. i also update my parents’ paper calendar daily, so they can check it each morning, reminding themselves of appointments.

once my parents finish eating, i help them clean their hands, and walk with my mother to the living room, depositing her in a recliner. i return to the kitchen and wheel my father to the living room, leaving him in his wheelchair aside my mother.

while they discuss what they plan to watch, i gather laundry, and carry it to the basement. i do the wash.

back upstairs, in the kitchen, i wipe the table, sweep and mop the floor, take out the kitchen trash and recycling, hand wash the dishes, clean the kitchen counter, and prepare snack plates for my parents. once the plates are delivered, with more “fizzy or flat” “rocks or no rocks”, i bring in their mail and sort it.

at approximately 6:30-pm, i once more take my dad to the bathroom, grabbing a pre-”made” change of depends on the way. i wheel him to the toilet, set the brakes, help him stand, latch him to grab bars, cover him with a bath towel, blindly drop his pants, blindly remove his depends, and lower him to the toilet. then, i leave him long enough to push his wheelchair out of the bathroom, into the hallway.

i stand and wait. when i hear the end of his “stream,” i awkwardly reach over him, turn on the bidet, count 18 “mississippis”, then turn off the bidet. i kneel on the floor aside him, remove his shoes and pants, slip on the fresh depends, and help him stand. once he seems stable, i latch him to grab bars, pat his bottom and “undercarriage” dry, blindly pull up his depends (making sure the inserts aren’t crumpled), and blindly pull up his pants. i leave him for seconds, only long enough to pull his wheelchair back into the bathroom.

i wheel him backwards, stopping at the sink, and wait for him to wash and dry his hands. then, i remove him, and wheel him back to the living room, near his snacks.

i gather my mother, and deliver her to the bathroom. i stand outside the bathroom door and wait for her to finish, watching and waiting for her to wash her hands. then, i deliver her to the living room and her snacks.

back in the bathroom. i clean pee off the floor and the toilet seat, if necessary. i wipe counters and any damp spots that were made by splashing water or shoes that stepped in pee, tracking wetness across the bathroom floor or through the house.

at approximately 7:00-pm, i leave. this is typically when i have time to pick up scripts, or time to have dinner with my wife.

everyday, an alarm on my cell phone sounds at 8:10-pm.

i leave my home and drive to my parents’ house. once again, traveling a distance of 1.4-miles, which takes between 4 and 8-minutes.

arriving at my parents’ house, i enter and immediately take my dad to the bathroom, grabbing a pre-”made” change of depends on the way. i wheel him to the toilet, set the brakes, help him stand, latch him to grab bars, cover him with a bath towel, blindly drop his pants, blindly remove his depends, and lower him to the toilet. then, i leave him long enough to push his wheelchair out of the bathroom, into the hallway.

i stand and wait. when i hear the end of his “stream,” i awkwardly reach over him, turn on the bidet, count 18 “mississippis”, then turn off the bidet. i kneel on the floor aside him, remove his shoes and pants, slip on the fresh depends, and help him stand. once he seems stable, i latch him to grab bars, pat his bottom and “undercarriage” dry, blindly pull up his depends (making sure the inserts aren’t crumpled), and blindly pull up his pants. i leave him for seconds, only long enough to pull his wheelchair back into the bathroom.

i wheel him backwards, stopping at the sink, and wait for him to wash and dry his hands. then, i remove him, and wheel him back to the living room in front of the tv.

i gather my mother, and deliver her to the bathroom. again, this is slow. while she can toilet herself, still i stand outside the bathroom door and wait for her to finish. as i’ve said, she hates to touch water, and tries to avoid washing her hands, so i watch her.

we walk to the living room, where my mother rejoins my dad.

then, i return to the bathroom. i clean pee off the floor and the toilet seat, if necessary. i wipe counters and any damp spots that were made by splashing water or shoes that stepped in pee, tracking wetness across the bathroom floor or through the house. i end my chore by taking out the bathroom trash.

i finish laundry, fold it and put it away. after which, i prep my parents’ clothes and depends for night, along with their day clothes and depends for morning. my mother wears pajamas and a depends with no inserts. my father wears pajama bottoms, refusing to change out of the shirts he wears throughout the day, no matter how dirty or stained they are. his depends require three inserts, artistically placed so none of them “bunch.” bunching inserts stick to skin and pull hair in delicate places. i pull their outfits for the next day, placing a plain depends for my mother, and prepping a half-dozen depends with inserts for my father. the prepped depends will be used throughout the day for changes that happen every two hours. if either develops diaper rash, a skin infection, or a yeast infection, there is special washing that goes with diaper changes, and then creams or antibiotics applications, which follows toileting.

i prep my mother’s bed. this involves turning on all of her plug-in nightlights and turning down her blankets. all 13 of her blankets. i prep my dad’s bed, which involves strategically placing six pads to catch his overnight accidents.

and… i wait for my mother to be ready for bed. she might go at 9-pm. she might go at 10-pm. she might go at 11-pm. and, she might feel chatty at tuck-in, wanting my attention until nearly midnight once delivered to her bed. when she’s ready, i take her to the bathroom. same routine… deliver, stand outside, watching like a hawk, encourage hand washing, blah, blah, blah. then, i help her change for bed, and walk her to the bedroom. she checks her plug-in nightlights, and also ensures she has a handheld flashlight in the bed aside her pillow. she also ensures that her cell phone is nearby, in her bed, aside her pillow. under the covers is an assortment of items, including a tissue box, three mismatched pairs of mittens, sometimes old cards from long-ago friends, and sometimes a no-longer-used crossword puzzle book and a few pens. i fluff two pillows, placing them crisscross atop a bed rest so she might be elevated once lying down. i also place a therapeutic pad under her backside. and, i pull all 13 blankets across her, one-by-one. i lean over her, give her a hug, tell her “i love you,” tap her knees and say “make good dreams,” then walk to the door of the bedroom, turn around and ask “see you tomorrow?” she always responds, “i want to be here.” and, i wave as i leave.

my dad usually goes to bed shortly after my mother is in bed. i take him to the bathroom, grabbing a pre-”made” change of depends on the way. i wheel him to the toilet, set the brakes, help him stand, latch him to grab bars, cover him with a bath towel, blindly drop his pants, blindly remove his depends, and lower him to the toilet. then, i leave him long enough to push his wheelchair out of the bathroom, into the hallway.

i stand and wait. when i hear the end of his “stream,” i awkwardly reach over him, turn on the bidet, count 18 “mississippis”, then turn off the bidet. i kneel on the floor aside him, remove his shoes and pants, slip on the fresh depends, and help him stand. once he seems stable, i latch him to grab bars, pat his bottom and “undercarriage” dry, blindly pull up his depends (making sure the inserts aren’t crumpled), and blindly pull up his pants. i leave him for seconds, only long enough to pull his wheelchair back into the bathroom.

i wheel him backwards, stopping at the sink, and wait for him to wash and dry his hands, brush his teeth, floss, gargle. then, i remove him, and wheel him to bed.

to transfer my dad from the wheelchair to bed, i use a turner. this requires me to help him stand, and to hold him steady, while turning him on a disc-like lazy-susan. once his backside is in place, i lower him to a sitting position, removing the turner and wheelchair from his reach. if he wakes at night, disoriented and panicked, having hallucinations, he tries to grab at them, pulling himself out of bed. this isn’t safe. so, to prevent him from trying to stand, and to prevent falls, i remove everything that he might use to pull himself up, and anything he can use to get himself out of bed.

my dad has pills to take before sleeping, so i get those, making sure he swallows them, and doesn’t choke. i tuck in my dad, telling him “i love you, and i’m proud of you. i know you did the best you could, and i appreciate you.” then, i hug him. he always returns the hug. and, i sit nearby until he falls asleep. this could be a few minutes. it could be a few hours. i stay because he sometimes starts his sleeps with hallucinations, and wakes fearfully or upset. i stay to help him orient, and then to calm him. once he’s in a deep sleep, i either wakefully nap near him, upright on a chair, or i leave him and in the dining room with my head down, like a child at a school desk. i can’t go to bed like a normal person, because if i hear either of my parents rustle, they must be tended.

for example, i get up to take my mother to the bathroom at least three times per night, an average of once every three hours. if i don’t hear her getting out of bed and go “running'“ right away, she calls for me. her yelling wakes my father, who then will want to get up and start his day, no matter the time. it could be my mother’s 1-am toileting or her 3-am toileting, my dad will decide it’s time to be awake and demand to start his day. i spend large amounts of time tending their bladders and their bowels.

once my father seems settled enough that i can leave him, and while my mother remains asleep, i return to the bathroom. i quietly clean pee off the floor and the toilet seat, if necessary. i wipe counters and any damp spots that were made by splashing water or shoes that stepped in pee, any tracks of wetness across the bathroom floor or through the house. i end my chore by taking out the bathroom trash, then returning to refill or replace anything that i find empty or finished (bar soap, hand soap, body products, toilet paper, tissue, paper towels, etc).

i do one more recyclables sweep through the house, and write notes for the day caregiver.

my wife arrives at 7:00-am to relieve me. and, the caregiver arrives at 8:30-am to relieve my wife. the caregiver stays with my parents until 1:30-pm.

between my wife, the caregiver, and me, my parents receive +19-hours of attention and care per day. this is much more than the 1 to 2-hours required by federal law for patients in nursing facilities.

when i am home, from approximately 7-am until 4:30-pm, i might get to nap. but, mostly, i’m cooking and packaging 16 meals 2x per week. i’m grocery shopping at three different stores 1x per week. i’m driving my dad to 4 PT and OT sessions per week. i’m sitting at my parents’ house on sunday afternoons, waiting for the eucharistic minister to arrive with communion. i’m driving my mother to the salon for some socialization and a hair washing 1x per week, and both of them—together, at the same time—once per month.

then… there’s the doctors… my dad’s neuros (2) and urologist (1). my dad’s gastros (2). there’s my mom’s cardiologists (2) and rheumatologist (1). my mom’s osteo (1) and endo (1). both of them see hematologists (2), nephrologists (2), ophthalmologists (2), orthos (2), podiatrists (2). there’s 23 total, including their primaries (2 with 1 PA). there’s only 12-months per year. some of my parents’ appointments are scheduled yearly, but many are scheduled “every 6-months.” and, still others are every 6 to 8-weeks. imagine how many doctor’s appointments this is, on top of the emergency room visits, the patient first visits, the hospital stays, and the rehab stays. we schedule all of their regular office appointments for times after the caregiver leaves, usually from 1:30 to 4:30, which means… we’re always sitting for hours as doctors run late.

https://www.livingbetter50.com/silent-killer-startling-number-of-alzheimers-disease-caregivers-die-before-loved-ones/

“Half of all family members who care for elderly people die before the patient, statistics show, or they become seriously ill due to self-neglect.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6292823/

https://www.brmmlaw.com/blog/2014/september/70-of-all-caregivers-over-the-age-of-70-die-firs.aspx