~ ON FRUSTRATIONS 
IN CHRONIC ILLNESS & PAIN ~

FRUSTRATION GALORE

A Simple List in not-so-simple Daily Living

Anyone alive knows the endless list of frustrations that can happen in a single day.   It can be quite annoying, to say the least!

 Healthy workers might face: your car wouldn't start, just 3 days after spending $498.22 at the mechanic; getting splashed by a passing car on the same rainy day while waiting for a bus that is late (all because of the incompetent mechanic didn't fix your car right); babysitter cancels at the last minute; you forgot to pick up your dry-cleaning and you need your "best suit" for tomorrow's job interview; your boss in your current job pinned the blame on you for work they did not do; your spouse is being a souse (something derogatory in the slang sense - or if you prefer, a nit-wit); you tried a new recipe that ended up tasting so bad it was inedible; your grown kids want to move back in, while your pre-teen screams everyday how they can't wait until they are old enough to move out; every "customer service" worker you call today are surly with you; and so on, and so on, and so on...

When one is ill or disabled, and cannot do the most basic chores or meet your own wants and needs, the frustrations become intolerable.

How about these for starters:

• You want something to do but can't go get the item yourself (like a book to read).

• You look around and wish you could (do whatever), but you know you can't get from your bed/chair to where ever you want to go.

• You long to go outside and breathe fresh air.  But you need 1 person to help you get dressed and need 1 or 2 people to help you get outside.

• You wake up feeling GREAT - a rare thing in itself.  You feel just like your "old self" and have a list of chores and things you want to get done running crazy in your head.  BUT -- you KNOW if you get up you WILL fail, that your body will NOT let you do even one of the tasks.  Or you fear falling if you even try to get up.

• You wake up feeling lousy - again, it is so common - like you have a horrible flu.  You can't think straight, you can't remember things for even an hour, and your body aches and hurts and throbs and (insert here the words you use to describe pains you have experienced in your life).  BUT, it seems like everyone expects you to "be normal" and take care of responsibilities like all other normal people.  Yet, you can't concentrate long enough to even write one check to pay one bill you owe.

• The TV (or other appliance) goes haywire, which means "someone" has to physically go look at it to see what is wrong (maybe the cable is just loose on the back of the TV.... maybe an electric cord got knocked loose from the wall...).  But no one is with you to go check it, and you can't get up to check it yourself.

• Yesterday it was 75 degrees outside - so nice after the winter days!  The Aide opened your windows to let the fine breeze in.  But, she didn't close the windows and tonight is supposed to have thunderstorms and the temperatures are to drop to 28-degrees.

• It's cold tonight, but the Aide put your heavy blanket across the room the last time she changed your bed.  (Or, the weather has turned hot, but no one thought to get out the lighter-weight blanket from the closet!)

• And so on...and so on...

Things "helpers" are supposed to do just do not get done, like:

• You can't change your underwear or nightgown because the laundry was not washed - or was left in the washer (or dryer) in the basement (where you can't go).

• No one went to the grocery store (as you asked) and now it's a holiday, the store is closed, and there's nothing you can eat.

• YOU put a certain item in a certain place so YOU will KNOW where it is when you need it next time, BUT you find that one of the helpers (you don't know who) moved it to an unknown place in an unknown room.

• You must use a potty chair because you cannot get TO the bathroom and the Home Health Aide is supposed to empty it every visit, but long after the Aide has left for the night, you find the potty is FULL and you have to "go."

• The Aide ruins some possession you have (you name it, it has happened), but the company has no policy about replacing lost, stolen, broken items. [It's kind of like having an inconsiderate roommate, except you NEED your Helper so you can't get rid of them -- nor do they have real consequences you can impose, because then you risk the helper might not come back and you NEED THE PERSON TO HELP YOU. (Some "help" huh?)

• You tell the Aide to do 4 things.  You later find that they did the first one right, the second one was not done at all, the third task was done all wrong, and the fourth thing was only partly done!

• Not returning things to within easy-reach after the helper has moved them.  [When someone is bedridden, pretty much "everything" ends up near or on the bed - at the top or on the sides usually, or on tables (plural) next to the bed.  Things like:

  Bottles of medicines or med-tray(s), 
  pill cutter,
  alarm clock (and maybe 2 alarm clocks to remind one to take meds at different times),
  over-the-counter meds like Tylenol or Gas-X, 
  eye or ear drops if needed, 
  eyeglasses, 
  dentures, 
  toothbrush, toothpaste, floss, (and a glass or two for mouth care), travel-size bottles of mouthwash, 
  medicated creams, 
  other cream or lotions for dry skin, 
  a drinking glass, 
  drinking straws, water bottle/s, 
  food-stuffs, healthy snacks (like saltine crackers), 
  clean silverware for snacks (like jello, pudding, fruit-cups, or vegetables like a cut-up tomato)
  Kleenex tissues, 
  paper towels or napkins, 
  remote control for TV and VCR, maybe a TV guide or channel list, 
  note pads to write notes to caregivers, 
  scotch tape (helps to put those notes somewhere, like taped to the alarm clock or lamp)
  scissors, 
  writing paper, pencils, pens, 
  Bible, 
  books or something to pass the time like puzzle-books,
  CDs or cassette tapes (and the player for either/both, extra pillows and extra blankets, 
  a pair of socks if one's feet get too cold, 
  a bed-jacket if shoulders/back gets chilled, 
  a fan for hot days (if battery-run, you also need an extra set of batteries for the fan),
  comb/brush, 
  small mirror, 
  baby wipes or hand-cleaner for a quick freshening-up,
  deodorant for a quick freshening-up, 
  nail file, nail clipper,
  ANYTHING important to the patient or important that they have to DO -- like bills to pay, check-book, money,

  And so on.....  It is almost like packing luggage for a long trip, where you pack everything you MIGHT need along with things you DO need.  But instead of packing the items, you find shelves, tables and spots around your bed or on your bed so that you can reach ANY of the things, anytime.  "Within easy-reach" generally means putting items within 12-inches from the person's body, so they don't have to stretch to reach anything (just normal stretching can cause pain OR is impossible in some diseases!).  Buying a mechanical "reacher device" like a grabber can increase arm-length another 12-inches so the patient can grab an item that is too far away to reach easily.

• Seeing something that has fallen to the floor and being UNable to get it.  Then, watching a helper STEP OVER the fallen item or refuse to pick it up!

Obviously there is much, much more I could add to this list of intolerable frustrations that the chronically ill or disabled person faces every minute of every day.  

Society needs to realize just how it is to live when one is ill or disabled and begin to develop community outreach programs, especially from the church community.  Churches could do so much in volunteer outreach programs where persons commit to visiting home-bound patients once or twice a week, to visit and do the small things these patients need.  If you would like to read more about church outreach programs, please click to go to the index page for the Outreach section of this website.