Make It Positive
compiled by Elizabeth Tucker, Deb Pfister and Cheryl Thompson
During the recent Oley Foundation conference, consumers,
their families and clinicians met to discuss how to cope with the many
challenges associated with HPEN. Suzanne Appel, MD, shared her insights based on
her work as a clinical psychiatrist and personal experiences as the mother of
children on HPEN. Below are highlights from the two sessions. A DVD of the
sessions is available from the Oley Foundation’s Video Tape/DVD Library (see
form or call 800-776-OLEY).
Words of Wisdom from Dr. Suzanne Appel
Dr. Appel began both sessions by sharing coping tips. Things she and her family found most helpful are to:
• Attend an Oley Foundation Conference or Regional Meeting. Just the process of
attending helped her family realize traveling was possible. Good planning is the
key and now they have traveled outside their state and the country. Also, seeing
other HPENers doing “normal” things helped shift their thinking from “not being
able” to do something to “being able.”
• Make a conscious effort to shift from thinking “life revolves around HPEN” to
“HPEN as just one aspect of life.”
• Use what you have learned to help others. That can be with others who have
similar problems to what you have experienced or it could be in another venue
entirely. Some examples might be as a regional coordinator for the Oley
Foundation or a volunteer in your local hospital auxiliary. Other ideas might be
delivering meals on wheels or volunteering at your local food pantry/food shelf.
• Take an active role in your medical care. Be an advocate for your own or your child’s care. Most consumers or parents of consumers have learned the right and wrong ways for things to be done and the times when questions need to be asked. Use your expertise to make your health care experience better.
• Learn to deal with stress using “the relaxation response.” Many people can be
unaware of the impact thoughts and emotions, both negative and positive, have on
their lives; it is important to understand what triggers stress and have
techniques available to use to deal with that stress.
Obviously, some of Dr. Appel’s stress could be related to her children’s
hospitalizations. To counter the “stress response” researchers, such as Dr.
Herbert Benson at the Mind-Body Institute at Harvard, feel there is also a
“relaxation response” that can be learned. This response can help you resume a
more relaxed state. His web site:
www.mbmi.org has a number of simple
techniques.
One quick technique is: Making sure you are using your diaphragm to breath,
take in a deep breath and exhale out your nose. Counting backwards from ten, do
this slowly and deliberately. It will make a difference. Dr. Benson also has
books and tapes available. He says the basic steps to learning a “relaxation
response” are repetition, such as focusing on breathing and learning to
passively disregard everyday thoughts. By using a relaxation technique, research
has shown significant reduction in blood pressure and pulse, and changes in
brain activity.
Exercise is another effective method people can use to put their minds into a
more relaxed state. Other methods include meditation, tai chi or yoga. In
addition, gaining knowledge can be reassuring.
Taking personal responsibility was also discussed at some length. The age of an HPENer was determined to be a most important component.
0 – 4 years = total dependence on a caregiver
5 – 8 years = learning the processes required
9 – 11 years = taking over the process, with varying degrees of help
12+ years = total independence can be
strongly encouraged
Words of Wisdom from Consumers:
Counseling May Help
While not every HPENer will need a professional psychologist, one woman
suggested that the emotional impact of HPEN should be addressed. Her medical
doctor told her that every relationship she has will go through a transformative
process when she begins HPEN. Some relationships won’t survive, some will be
stressful and some can even improve. Although she didn’t feel she needed
counseling, her medical doctor insisted she meet with a psychologist that
specializes in critical care to help with relationship transitions and other
issues that may arise. This consumer was grateful that her physician recognized
the emotional impact of this therapy on the individual and all those around her,
and insisted she seek preventive help. In her sessions she was able to freely
express her emotions and learned to ask herself “what is really causing the
emotion?” Then she could evaluate what in her life could and/or should be
changed to alleviate the underlying cause.
This consumer also discussed that many women find it difficult to express anger.
Dr. Appel said that it can be harmful to suppress negative emotions that fester
if left unresolved. A person may also find it frustrating if they are no longer
able to participate in their previous roles as a woman/man, mother/father, etc.
The issues of how a person’s sexual identity changes were also mentioned, as
HPEN impacts all aspects of a individual’s life — physical, psychological,
sexual and spiritual.
Take Charge
One individual felt she learned to cope by taking charge of her own life,
specifically issues related to her health care. When she meets a new health care
provider, she establishes a collaborative relationship. She explains to them, “I
am the captain of the team”. Her primary care physician is the co-captain, who
helps to coordinate the medical care. His advice is very important but she will
ultimately make the decision on her own, which may or may not be in total
agreement with him.
Not everyone will find it easy to go from a passive to an active voice. She
believes that it is difficult to succeed in the current health care system if
you are passive about your own health care. Coming from a business background
gave her the ability to put the consumer/clinician relationship “on the table”;
almost like a contract so that each party knows his/her role and
responsibilities. She realizes that it can take a shift in perspective. In many
cultures men may find it easier to be assertive than women. In addition, male
clinicians may, at first, be unaccustomed to having a female patient “in
charge”.
Fostering good communication is critical to any relationship between the
consumer and clinician. Work to improve your communication skills, and if the
relationship is not working, do not hesitate to make a change. For this consumer
it is important to be able to call her physician by his/her first name. Although
using a doctor’s title is a common courtesy and sign of respect in the hospital
culture, she feels that they both must be relaxed and able to speak about
emotional topics with openness and not hiding behind a title or position.
Developmental Differences
Developmental aspects of growing up with a chronic condition were discussed in
both workshops. Some concerns that parents expressed need to be understood in
terms of stages of development, for example:
Disclosure of information can be especially challenging for teenagers. Teenagers
who require HPEN face additional challenges. Denial and difficulty accepting the
need for the therapy were two challenges that were mentioned. Often the teenager
is very self-conscious and embarrassed to let others know about his/her need for
HPEN and does not disclose this information. This can be a problem if other
family members divulge this information when it might seem to the teenager that
the person really didn’t need to know. Other teenagers may hide all of their
supplies, not want to dress in front of other kids or skip a day of therapy to
keep from seeming different from their peers. The need to be like everyone else
also should be understood as developmentally appropriate in early adolescence
but usually diminishes in later adolescence; so even though a teenager will be
secretive that may change with age. Two mothers also commented that
teenagers may increase the rate on the enteral infusion pump to decrease the
infusion time.
The group members commented that, although teenagers are terrified of being
different, most kids are really more accepting than you would think. Most people
will treat you the same or don’t find you “different.” If a friend doesn’t
accept it, they may just be a shallow person. This is really a way to separate
superficial friendships from individuals who are interested in a deeper
friendship. Let the superficial friendship go, they are really doing you a favor
by leaving. The family should be aware that the teenager will want to be in
control of who is told, when they are told and how much information is shared.
They may be afraid that if you told someone about his/her HPEN before, that you
are going to tell others as well. Several people commented that although
disclosing this information to kids in high school can be difficult, friends in
college are at a different level and much more accepting.
Dining in a restaurant
For HPENers of any age, going to a restaurant can be challenging – just because
of the interaction with the waitress. The waitress may try to encourage you to
eat or drink at every course. [While it wasn’t mentioned in the group, Oley has
small cards available which can be handed to the server. It lets them know that
there is a medical reason why you are not eating. Call (800) 776-OLEY to request
a free dining out card.]
Transitioning Teens to Independence
One family mentioned that it has been difficult to handle the transition of
allowing their teenager to be independent with his nutrition care – not knowing
when to “be in his face” or when to “back off.” While parents and healthy
teenagers may have conflicts about curfews, medical “chores” will probably
become the focus when there is a chronic illness. Respecting the teenagers’ need
to establish autonomy while maintaining adequate medical compliance is a very
tricky process.
One young woman discussed how difficult it was for her when her mother tried to
make sure she remained in the hospital to receive the care she needed; yet the
young girl wanted desperately to go home. At other times she knew her parents
were pushing her to be independent and do her self-care – but sometimes when a
parent pushes, the child becomes resistant. She also mentioned that conflicts
would arise when her TPN nurse told her to do things one way and her family told
her to do it another way. It would have been more developmentally appropriate
for the TPN nurse to work with the family as a team. As she looks back, she
appreciates the things her family did to care for her.
Peer pressure was also a difficult issue for her. She was hospitalized so
frequently during high school that some of her friends were afraid that she was
contagious. Luckily, she had a boyfriend who helped to change her perspective
and appreciate TPN.
One family mentioned that when they couldn’t deal with the stress of their
child’s illness any longer, they started using destructive behavior, tobacco and
alcohol. After a period of time they realized that wasn’t helping them either so
they went back to their faith. This allowed them to stop the destructive
behavior and work on positive stress relievers. Avoidance, dissociation and
denial are other destructive ways of dealing with stress. Positive stress
relievers are faith, using relaxation techniques, meditation, exercise, a sense
of humor, support groups, involvement with others, and volunteering, to name a
few.
Many thanks to Suzanne Appel for facilitating these groups and Cheryl Thompson for taking such excellent notes on which we based this article.