I have known Rosemary Musachio since we were in grade school so I think I can say I know her
very well. Rosemary has been using a manual communication board since she was about eight years old. I communicated like that as well until I received my first AAC device in 1993.
Rosemary and I have butted heads on many occasions about why she is still using a manual communication board. However, I have learned to keep quiet because Rosemary has accomplished a lot, and well if it ain't broke don't fix it! The decision about what type of communication device to use is a very personal one and what works for one person doesn't necessarily work for another.
Rosemary earned a bachelor's degree in Communications from
Cleveland State University. After
graduating she wrote a monthly column for Sun Newspapers of Cleveland and
published articles in the Plan Dealer and had a devoted following of
readers. Currently Rosemary is working
for a company named TecAccess that tests software and
web sites for accessibility for people who have hearing, sight, and mobility
disabilities. She has been there for ten
years and she is the Senior Accessible Analyst and Testing Manager.
Unfortunately Rosemary needed to be hospitalized earlier
this year and as you will read it was a very unpleasant experience. She wants to share her experience with the
hopes nobody will go through what she did.
-David
On April 2, 2010 I went to South Pointe Hospital’s emergency
room with severe back pain. After doing
blood and urine tests, the doctor said I had a urinary tract infection
(UTI). About an hour later I had a chest
x-ray without knowing why I was having it done.
Nobody informed my mom or me.
Then, about an hour after that I was taken for a cat scan of my
chest. Again, nobody told us why. My mom kept asking nurses, but they said we
needed to wait for the doctor.
Meanwhile, I was administered an antibiotic via IV. The nurse said “it’s for an infection.” My mom asked if it was for the UTI. The nurse said “probably.” The doctor finally came in and said I had
aspiration pneumonia. She explained that
a piece of food entered my lungs.
After the dose of the antibiotic in the emergency room
(around 4pm), I wasn’t given any more antibiotics until the next morning. I
also was not given any fluids the entire time I was in the hospital. Therefore, I probably became dehydrated. Finally, I made myself urinate. Otherwise, two nurses said they would put a
catheter in me. I actually prayed early
Monday morning with tears in my eyes to pee—and I did.
Because of the antibiotic and a dose of Milk of Magnesia given
to me on April 4, I developed diarrhea.
It lasted for two weeks. Because
the nurse/nursing assistant took 15 minutes or longer after my mom or I called
to inform them I finished using the bed pan, I laid in my fecal matter and thus
developed a bad rash that hasn’t healed completely yet.
I often slid down in the bed. During the day, nurses were usually good
about repositioning me in a prompt manner because (1) they were nicer than the
nightshift and (2) my mom was there. The
nightshift nurses, some more than others, treated me like a caged animal. She actually took the call button away from
me because I had pressed it accidentally while she was there. I literally yelled and cried most of the
night for her to come and reposition me.
When I tried to do this myself, I slid even more in bed. At the same time, I was experiencing side
effects from the antibiotics including insomnia and hot flashes. When she FINALLY came to my room, she glanced
my way and left. I even overheard her
telling someone, “She does this every night.”
On top of all this, a mentally disabled gentleman in the next room
yelled “nurse” every 5 minutes.
Lastly, although nursing assistants were informed they had
to cut up my food, they still tried to give me giant pieces. Eating in bed was more difficult. When my mom requested a wheelchair so I could
eat, the nurse said they did not have a “special wheelchair.” Ironically, a comfortable wheelchair was
brought up when I was discharged on April 5.
My recent hospital experience, to say the least, was not a
pleasant one. My story, while graphic and hard for me to tell, is an important
one because it truly highlights the struggle that people with communication
disorders face everyday. I wanted to share my story to continue to
bring awareness to the level of care being offered to people with communication
disorders. We are entitled to the same level of respect and care as anyone else
and yet, we fight to get even the most basic medical necessities and are
subjected to cruel and unfair treatment.
If each nurse, nursing assistant or doctor would have taken an extra 5
minutes to speak with me and my mother about how I was feeling and how I would
need to communicate, it may have saved everyone a lot of stress and pain.
Continue to advocate for yourself and for your friends and families that have
communication impairments. If you have been treated unfairly tell someone, they
will never give us a voice if we don’t start using ours.
To learn more about the communication experiences of
individuals who use AAC, check out one of the following resources:
1. Nursing the patient with severe communication impairment.
Hemsley, B., Sigafoos, J., Balandin,
S., Forbes, R., Taylor, C., Green, A., & Parmenter,
T.
Nursing the patient with severe communication impairment. Journal of Advanced Nursing, 35(6),
827-835.
Abstract
Background: effective communication with patients is
critical to effective nursing practice. Surprisingly, there is little
information on nurses' experiences in caring for patients who are unable to
speak. Purpose and method: this study provides descriptive information from
interviews with 20 nurses who cared for patients with severe communication
impairment. The interview protocol explored positive and negative experiences
of nursing patients with severe communication impairment. Frequency counts and
descriptive analyses were conducted to identify the major themes emerging from
the interviews. Results: the results suggest that nurse–patient communication
is difficult when the patient has severe communication impairment, although
some nurses discovered effective strategies to facilitate communication with
such patients. Many of the difficulties could be viewed as a breakdown in
understanding arising from the lack of a readily interpretable communication
system that could be used by nurse and patient. Conclusions: the results
suggest a need for training nurses in the use of alternative modes of
communication. Nurses also need access to a variety of simple augmentative
communication devices for use with patients who are unable to speak. Finally,
nurses should collaborate with speech pathologists on the development of
preadmission information and bedside training for people who are admitted to
hospital with severe communication impairment.
2. Without
AAC: The Stories of Unpaid Carers of Adults with Cerebral Palsy and Complex Communication
Needs in Hospital.
Hemsley, B., & Balandin, S. (2004). The Stories of
Unpaid Carers of Adults with Cerebral Palsy and Complex Communication Needs in
Hospitals. Augmentative and
Alternative Communication, 20(4), 243-258.
Abstract
Many adults with cerebral palsy and complex communication
needs rely upon the support of their unpaid carers when they are in hospital.
In this paper, the authors present some of the findings of a larger qualitative
study of the experiences of unpaid carers of hospitalized adults with cerebral
palsy and complex communication needs who did not have access to their usual
augmentative and alternative communication (AAC) systems. Drawing upon the
stories of unpaid carers, communication issues associated with cerebral palsy
and complex communication needs and the absence of AAC are discussed. Such
information can be used to assist AAC specialists, hospital staff, and hospital
policy developers to improve care provided to not only people with cerebral
palsy and complex communication needs, but also to other people who are unable
to speak in hospital.
3. Communicating with Nurses: The Experience of 10 Individuals with an
Acquired Severe Communication Impairment.
Balandin, S., Hemsley,
B., Sigafoos, Green, V., Forbes, R., Taylor, C., Parmenter, T. (2001). Communicating with
Nurses: The Experience of 10 Individuals with an Acquired Severe Communication
Impairment. Brain Impairment,
2(2), 109-118.
Abstract
Successful communication is integral to quality health care
and successful nursing practice. Ten people who had been in hospital in the 12
months prior to the study and who had no functional speech at that time were
interviewed about their communication experiences with nurses. Overall, these
individuals experienced difficulties, some of which appeared to be related to a
lack of augmentative and alternative communication (AAC) resources and a lack
of knowledge of AAC among nurses. In addition, the participants noted that
nurses did not always have the time or the skills to communicate effectively
with them. The participants suggested strategies to improve communication
interactions between patients with no or limited functional speech and nurses.
These strategies include pre-admission briefing and training nurses about
effective strategies for communicating with patients who are unable to speak,
including the use of augmentative and alternative communication systems.
4. Narrative analysis of the hospital experience for older parents of
people who cannot speak.
Hemsley, B., Balandin, S., & Togher, L. (2007). Narrative
analysis of the hospital experience for older parents on people who cannot
speak. Journal of Aging Studies,
21(3), 239-254.
Abstract
In this study eight parents aged over 60 years
participated in in-depth interviews about their experiences in supporting an
adult son or daughter with cerebral palsy and complex communication needs
(CCN) in hospital. A narrative analysis of the interviews provided insights
into the nature of the parent carer's experiences
in hospital. The results are presented as an interpretation of the participants'
perceptions of their roles in hospital and the impact of these upon their
health and wellbeing in older age. The participants' suggestions of how to
improve the hospital care experience for all concerned are included and
directions for future research are discussed.
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