Communicating your needs...

There is probably no other time in life when so many things can interfere with communication, at the same point when communication is so needed!   You don't feel good; maybe you are in pain as well.  Your illness puts you through "good and bad days," affecting how much and when you feel like talking.  Maybe you aren't sleeping well, leaving you tired and irritable.  You may be going through another round of feeling down because of the changes imposed on your life; some days you might be so depressed you really don't want to speak at all - to anyone!   Medicines might have side effects that make you confused, unable to focus, very tired, or other negative effects.  On top of everything, you don't want to alienate those who you need to help you -- but, often the helpers do not understand (although it is often obvious) what is causing your frustration, anger, depression.  Sometimes they don't even understand how you feel physically.  If you have a voice disability or symptoms that affect your voice, having to speak can be very aggravating (not just physically but simply irritating emotionally).

If you need a lot of physical help, you may find you need to actually speak more - at the very times you wish to speak less.   But if you live alone and must have home health aides help you, you find yourself having to give those helpers detailed directions about many things.  Where do you keep your clothes (which drawer? right or left? top or bottom?); shoes; dishes, silverware, and kitchen items; your favorite book; your medicines; your toothbrush and toothpaste.... just --- everything!  Helpers will want and need directions about how you want things done in your home, or in doing personal care.  Do you like hot-hot water in a bath basin or tepid/lukewarm water?  special washcloth? do you want to wash yourself or have the helper wash you?  where is your deodorant/aftershave/perfume/lotion?  The list is simply endless.... overwhelmingly endless....!

Sometimes when it is just too hard to talk every single day, writing notes helps.  For aspects of your care that never change, you can write out lists describing what items you need and how the person should assist you in doing a certain task (like a bed bath).   Try to keep your list simple but explain enough so that any person reading it should understand.  However, do not assume that all caregivers can read!   Most companies only require a high school education or GED and the fact is, some high school grads still do not read very well.   If your community is multi-cultural, an aide's first language may not be English or they may not be able to understand written English even if they've learned to speak it.   If in doubt, politely ask if they can read and understand your notes.  Ask if they have any questions about your instructions.   Type your lists if possible; your handwriting may get in the way of good communication, such as if you have a tremor for example.

Although nurses, doctors and helpers should understand and respect that you don't want to talk, or don't feel like talking, they often do not seem to understand this at all.  Try to explain some of your problems about speaking.  For example, tell them if it is harder for you to speak when you are in severe pain.  Or set boundaries you feel will help you strike a balance, like "I need quiet time for at least 30 minutes when I first wake up, so during that time, please do the dishes and vacuum/sweep in the kitchen.  After that, I'll be ready to talk."

You will need to develop your own ways of communicating and maybe include other ways of "speaking."  Written lists; notes of things you want or need done; hand gestures on really bad days; pointing; nodding your head yes or no; etc.   Just be sure to tell your helpers what ways you will use to communicate with them.  "When I think of foods I want you to get at the store, I will make a list and tape it on my bedside stand.  Please look for my list on Thursday so you can go grocery shopping on Friday."

If you have found other easy ways to clearly communicate your needs and wants, please submit them on the Guestbook.

Powerlessness obviously goes hand in hand with feeling a loss of control over one's own body and one's own life.  Some people's first major experience with powerlessness comes when a major accident, illness or injury affects their life negatively, restricting and changing what their "normal life" once was. 

When you must be dependent on others for your food, water, all personal care, and all aspects of day-to-day living, powerlessness is a natural feeling.   When helpers come into your home or an institution with bad attitudes about helping an ill or disabled person, powerlessness can almost become a "living entity," because it is so huge, so overwhelming and so completely takes over.

Powerlessness in this situation is not so much about expecting someone else to do MORE for you as in "I'm entitled," but it is about feeling powerless to get the helper to simply do the minimum -- which is being treated simply like a human being who should not have to beg for these basics (e.g. food, water, etc).   It would probably surprise most people if they knew just how lousy simple/basic care is for the chronically ill / disabled.  

Powerlessness is about the natural and inevitable inadequacies you feel in trying to accept and trying to find ways to cope with the fact that disability/ illness already HAS affected you, without succumbing to giving up.   

A person who is chronically ill or is bedridden can feel pretty dang-gone helpless.  One's body has betrayed them; they must rely on another person for the simplest things, for every need or want, whether it is needing cold water on an 80-degree weather day or needing someone to turn on the thermostat when winter comes. Or whether it is that you want a crossword book from the next room, or "want" a treat of an ice cream cone from the nearby Dairy Queen.  Everything you need for survival, from trips to the grocery store, to the drug store for meds, or to doctors has to be done by someone - you must rely on people who are often not very reliable , who often promise or say they will do the errand, but just don't do it.  This kind of helplessness also has little to do with expectations of getting "more" from someone, nor is it attention-getting, sympathy provoking, or manipulative; it is a daily issue for so many people whose body no longer allows them to "do" for themselves, and who want to do for themselves. Powerless and helplessness often comes in reaction to feeling demeaned when the basic needs of being a human being are ignored or just not met.   When a person undergoes repeated battles with a chronic illness, it wears on the body, the emotions, and even one's spirit.

Often, disabled folks feel there is too little understanding of what it is really like to be in a chronically ill-disabled situation (especially if you are bedridden but used to being independent before).   While this site does not address these issues from a chronically ill/disabled person's perspective, the site Coping.org does have some good general information about feelings and journal type-exercises which might help.  [Note: Coping.org is not specific to disabilities or medical issues.]

Frustration at oneself... and one's circumstances...

A huge issue is frustration.  It is NOT easy to be confined in one spot, or in one room, unable to come and go as you want.   This frustration easily and quickly slips to anger.  In fact, what most people will see is anger and will label a disabled person as being "angry, difficult, demanding, critical."  Ever had those labels thrown around about you?  If you have, you are not alone.  And, you were misunderstood by whoever labeled you like that.

How others view your anger...

Others view the anger of frustration towards other people or them. How inaccurate!  The anger and rage you feel has little to do with other people (except when they don't understand, or judge you).   Most often, other people (even caregivers) cannot put themselves in your place to understand your situation AND all the ways your disability would affect daily living.  Others lack compassion, empathy, and the imagination to put themselves where you are.

I've tried educating through a simple example.  I ask caregivers to imagine sitting or laying in their own bedroom, and that somehow they have become glued to the bed or recliner chair!  It is impossible for them to get up for ANY reason, not for the doorbell, to get a drink of water, to get a snack or meal from the kitchen, to get a sweater, to find their shoes in the closet, to open/close a window, to turn on a fan or heat source, to fix something important that needs fixed, or even something "unimportant," like getting a crossword puzzle book from the table 10 feet away.   Obviously, they cannot do anything outside the house either, from getting the mail or just going out to get some fresh air and sunshine.  I find that usually, this short description is already too much for an able-bodied person to comprehend!  But, I encourage them to stay with that image, and try to imagine what else would be difficult or impossible for them to do if their body no longer worked well.  I ask how comfortable they would be if a new home health aide came in their home, and the company sent a new aide every week (new equals "stranger"); how would anyone feel with allowing strangers in and out of their house like there is a revolving door?  How would anyone react to strangers touching and even moving their belongings to unknown spots in the house?  How would they react to having to rely on strangers for every basic need they have, including private activities like going to the bathroom or getting a bath/shower?  OK, at this point, the caregiver reacts as though they are grossed out.  My example is getting across the message, a little.  The message is actually many messages about just how hard it would be to go from someone able to do things on their own, to being dependent on someone else.  And how every day there are numerous things that can cause frustration and anger.

Why any caregiver thinks anger and frustration are somehow abnormal is just beyond me.  Worse, some people react as though these are not only abnormal feelings but that they also mean the person is "bad," "negative," or "difficult."  Heck no!  A person who is confronted with a life-changing medical or psychological problem is simply trying, as best they can each day, to adjust and cope with what life has handed to them.  

IF a caregiver suddenly became disabled, others would call them "angry, demanding and difficult" too!  They just don't realize now that they, too, are one second away from an unforeseen illness, accident, or disabling condition!!