The Need for Communication
Being able to communicate is what makes being human unique. Communication is something we tend to take it for granted until
we, or someone close to us, has a problem. When we have a problem in communicating, whether short or long term, feelings of
frustration, anger, resent-ment, hopelessness, and depression can surface. People who have difficulty communicating even their
basic needs feel disconnected from the world.
In trying to help a loved one with Huntington's Disease continue their ability to communicate for as long as possible,
we look for ways to try and assist them. We can communicate through writing/reading, using gestures, body language, facial
expression, drawing, music, pointing, and making noises. We must look more to these other ways to help them express their
thoughts, needs, and feelings. It may be a real effort, but it helps keep them connected and communicating for a little longer.
To me, THE hardest part of living with Huntington's Disease is the loss of communication. That is the one thing
that always bothered me the most, perhaps because I know how totally frustrated and alone I would feel if I couldn't communicate.
My daughter, Kelly, was always very good at expressing herself. She was very articulate even from a very young age in both
verbalizing and writing her thoughts and feelings. To not be able to do that any longer, or have anyone who can understand
when you do try, is something I can't even begin to imagine or the loss of self-worth it must make you feel.
Oral Exercises
Oral motor exercises are occasionally necessary for weak articulators or muscles in the mouth and face for speech production.
They sometimes need strengthening, need to move farther and/or have better coordination. These can help a person make speech
sounds better as well as help with the eating/feeding/swallowing problems some people with HD may have difficulty with.
Kelly never lost her ability to say "NO" if she really didn't want something ;-) When her speech started
becoming more difficult to understand I had Kelly say each letter of the alphabet very slowly, to see which ones she had the
hardest time with. This showed me which letters/words that she just had too much difficulty trying to say them out loud. For
example W's, or any letter where you have to pucker up your lips to form the letter, were the hardest for her. This is due
to the damage to the muscles controlling the ability to move the mouth/lips and, also being bed ridden, from the lack of getting
enough oxygen into the diaphragm to force out the sound of a letter. Communication, or the effort to try so damned hard, just
becomes too much.
You can do exercises and practice making sounds, shaping the lips, speaking loudly, etc. Kelly had fun with the face exercises
we'd do, and I know they helped too. You act like a mirror and make the faces then they have to make them with you. Opening
the mouth wide, then puckering the lips and.........oh well, it's too hard to describe LOL! Here are a few sites that will
give you the idea:
Later Stages of HD
In his article Communication Strategies For Those With HD Jeff Searle wrote:
An individual in the advanced stages of Huntington's disease may well be non-verbal,
yet interacting with another human being may be the only connection the person has with his/her environment. One of the biggest
mistakes you can make is to assume that because a person has lost the ability to speak they have also lost the ability to
understand. We know that persons in the later stages of the disease have a high degree of comprehension of ordinary conversation,
therefore, maintaining communication at any level during this stage is extremely important.
Individuals in the advanced stages of the Disease still have much to share. It
is the caregivers' responsibility to see that non-verbal persons remain in touch with their environment and those around them.
It can make an enormous difference to that person's quality of life if they feel connected and affirmed as an individual.
We must always keep this in mind, especially during the later stages of Huntington's when it is not only difficult for
the person with HD to express their needs, but for their carer to understand them as well.
Nothing broke my heart more then when Kelly's speech deteriorated where even I, her sole source of communicating with the
world, could no longer understand her. Sadly, with her arms locked, she could no longer point. She even had trouble blinking
her eyes on command but would sometimes respond with a blink one for yes, twice for no........usually she'd just wink at me
and then start laughing LOL. It was easier for Kelly to shake her head yes or no then to blink.
With Kelly I could tell from her eyes that sometimes she just felt "why bother?". I'd ask her a question and she would
just stare at me, hard, daring me to read her mind (God how I wish I could have). I would challenge her and say "I should
know that answer huh?" and she'd shake her head "yes".
It does help to ‘talk’ about it. Tell them you understand how terrible it must be for them, not being able
to express their feelings or have others understand what they wants to say. Let them know how you miss hearing them speak,
wanting to knowing what their thoughts are. That you really will never understand what it's like for them to be "trapped"
inside their body, unable to express themselves, but you do care, very much and wish there was some other way for you two
to communicate. I bet you will get some reaction if you talk to them from your heart, letting them know how frustrating it
is for you too.
Sometimes Kelly and I would ‘talk’ about the lack of her responding to a question yet looking right at me knowing
she understood. I'd tell her how it must be so frustrating not to be able to just blurt out what you are feeling/thinking,
not being able to tell someone everything that you want too. She'd get tears in her eyes and shake her head "yes, yes, yes".
After one of these sad times is when I wrote the poem "If I Can't Talk, Am I Still Here?" for her.
In the very later stages Kelly had to resign herself to the fact she couldn't communicate, when her only "voice" (me) could
no longer understand anything at all she tried to say except for the occasional "Mom" or "I love you". This not only hurt
her deeply; it broke this mother’s heart. |
Indifferent/Uncaring Carers
It is unfortunate, but a lot of hired carers [aids or nurses] are really either uncaring and/or
have a pre-conceived notion that people who have trouble communicating do not understand. These individuals make no attempt
at trying to meet the person with Huntington's Disease needs.
The horror stories I could tell about aide’s treatment of Kelly while I was at work! Some
had their boyfriend over and sat in the living room all day ignoring Kelly. Worse, some would yell and scream at her to shut
up when she tried to tell them what she needed. Others ignored her except for her very basic needs, watching what they wanted
on her TV vs. letting Kelly watch her favorite shows, etc..
We were fortunate in that I could always tell when something occurred to upset Kelly while I
was at work. By asking her several questions, I could figure out what the temp carer did that upset her. Believe me, they
were shocked when I confronted them, then FIRED them...then reported their neglect of Kelly to their agency!
Kelly's Communication Book
For about 2 months Hospice was sending out different/new aids almost every day. This was frustrating
not only for Kelly, but for me too. Having to go over Kelly's needs in the 15 minutes before I had to leave for work always
had me concerned I left something critical out in her care routine!
Easy-to-use word or picture communi-cation notebook can be a big help. The special book I made
for Kelly (below) was made in one afternoon out of desperation. It was "refined" later (see Section II).
The book should be personalized to include what the person with HD wants and can really be a
BIG help in not only helping them communicate their needs, but for any substitute carer you may have. Even my Dad, who watched
Kelly when I was still traveling for work, had a hard time understanding Kelly. Once I made this book, he said his fears of
watching her were alleviated because Kelly knew the book well. Between the two of them, they usually figured out everything
she needed just from that book!
I always told new carers to arrive 30 minutes early so I could
show them where everything was, explain Kelly's schedule and go over the book with them in front of Kelly. This always made
Kelly comfortable, knowing they should now know what they needed to do even if they couldn't understand her.
The very first page of the one I made had an index of the following sections so Kelly
could point to WHAT she wanted to talk about. It was fairly uncomplicated. Some of the pictures were cut from magazines, some
from clip art. Then we had a special few pages of Picture Cards made specifically for Kelly. It was broken out into the following
separate sections for the temporary carer:
Section I - Emergency
This section had all the pertinent contact information for any emergency, including "Grandparents"
with their picture and phone number, my secretary at work, etc.
The very first page had a picture of a telephone with the words "CALL MOM". This was also done
separately and posted on the dresser next to Kelly's bed so she could just point to it. Kelly knew she only had to point to
that picture to have someone call me because the aide was doing something they shouldn't be or she was getting frustrated
because they didn't understand her. Everyone was clearly instructed they were to call me immediately when Kelly pointed to
that sign......no excuses!
Section II - Personal
This section basically contained the first few pages from the Special Care Instruction Handbook
The front part of it had several pages of things about Kelly where Kelly could just point to
them. I had her birthday, a picture of a book of poems with the words "Read To Me" meaning she wanted them to read her poetry
to her. "Cats" with their picture and names, picture of a TV with "schedule" indicating she wanted it changed. Her TV schedule
was printed out and taped to the TV in her room. "Friends" with their names and pictures who the aides were told they were
allowed to visit any time they came over. There also was an "album" where Kelly's prized family/friend pictures were kept
that she liked looking at now and then. "Videos" listing her favorites so she could pick which one she wanted to see. You
get the idea ;-)
Section III - Food
This section was used when Kelly could still eat. For Kelly's food preferences, I had cut out pictures
of her various favorite foods so she could "select" her choice by pointing to the picture or shaking her head yes or no when
given the choices. It also included instructions on how to prepare those foods. This section also included special drinks,
etc. she liked and, of course SNACKS which she ate tons of.
When Kelly started having difficulty swallowing or aspirating I made several of her special meals in
advance and the carer was told to give her a choice from those and to NEVER substitute!
Section IV Hygiene
This section contained pictures of some standard household items like a toilet (take me), toothbrush
& paste (brush mine), hair brush & comb, shampoo (Kelly loved her hair washed every day), wash basin, perfume, make
up and, back when she still had her period, tampex.
Section V Words
Contained a few pages of basic words like cats, potty, living room (she wanted to go in there
for awhile), etc. Then it had "POINTING" indicating a dresser/when Kelly pointed to it normally meant the cats were on it,
get them off, "door" meant she wanted to go to living room/take me to LR or bathroom, etc.
Section VI Clothing
This section was short, describing her favorite colors, clothes she no longer liked to wear, her
sensitivity to "rough" material, how she couldn't stand anything tight around her neck, etc. It also had instructions for
the carer to always give Kelly several choices of clothes to wear that day and let her decide what she felt
like wearing.
For Temporary Care Providers of A Person With Huntington’
Disease - The information on this form provides background on your loved one
to help temporary carers understand the individual needs and identifies any special limitations they may have. |
