Posted By Alexandra E. Schmidt, D. Scott Sibley, & Caroline Dorman ,
Tuesday, November 29, 2016
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As we prepared to present this topic at CFHA 2016, our team quickly
realized that the therapists in the group used the term "family legacy” while
our physician colleagues used the term "family culture” to describe how
families impact health. We began to wonder, are they the same concept? Related?
Totally different? How could we apply both concepts in our clinical work to
connect better with patients, improve quality of life and daily functioning,
and work towards better health outcomes?
As Ernest Burgess wrote over eighty years ago, "Whatever its
biological inheritance from its parents and other ancestors, the child receives
also from them a heritage of attitudes,
sentiments, and ideals which may be termed the family tradition, or the
family culture.” Family culture encompasses values about what’s important, what
behaviors are acceptable, and what our relationships should be like. We believe
family culture extends beyond parents and children to extended family interactions
and families of choice, those not related by blood.
Patients’ decisions about how to care for themselves and how to
engage with the healthcare system are infused with multigenerational cultural traditions.
Family health culture provides the foundation for beliefs about the role of the
patient and the role of the physician, value and meaning assigned to
caregiving, causes of illness, and confidence to engage in health maintenance
and improvement behaviors. Culture also shapes routine habits and behaviors
related to eating, exercising, managing stress, and taking medications.
or detrimental, we don’t get to choose our family health culture since it’s a
composite of many family members’ beliefs and actions. We can’t change the
foods placed on our childhood dinner table, the ratio of our parents’ active
versus sedentary time, or how our families and communities have navigated
difficult decisions about how and where to care for sick loved ones. As we
acknowledge the role of family health culture, where do we honor the impact of
individuals’ personal choice on health behaviors and beliefs?
Family legacies, on the other hand, emphasize how individuals take
the past and craft it into current actions and use it to influence the future. As
Boszormenyi-Nagy and Krasner wrote, "It is the task of the present generation
to sort out that which is beneficial and
translate it into terms of benefits for future generations.”
In essence, we
funnel down the parts of our familial culture (beliefs, values, attitudes) that
we wish to pass down to future generations to create a family legacy – in this
case, our story about illness and wellness. Rather than passively receiving the
habits and beliefs handed down to us, we have the ability to craft our legacy into
a story we want others to remember. In addition, we can choose to emphasize health-related
habits and beliefs that offer us the most options for a fulfilling life.
As healthcare professionals, what is our role in helping patients develop
a healthier legacy? We recommend starting with one simple question: "If you
were to change one aspect of how your family approached (or approaches) health,
what would it be? How can I partner with you to work towards that goal?” Some
patients might need to be prompted with areas for consideration, such as
balancing work and self-care time, diet and nutrition, exercise, or
communicating with healthcare providers.
The question could also be rephrased
as: "What is one thing you learned from your family about how to take care of
your health that has worked well for you? How has this been beneficial for
you?” We also think it wise to begin asking these questions early with children,
rather than wait until they are adults to reflect on healthy habits: "What is
something you think your family does a good job of to be healthy and set up
good habits? How can you keep up that habit?”
If we want healthier patients who use our
valuable healthcare resources responsibly, we don’t have the luxury of ignoring
familial cultural beliefs that influence their decision making and goals of
care. We must take the time to inquire about patients’ beliefs and habits and
how those are influenced by their family culture, even when we feel pressured
with packed schedules and growing lists of clinical quality measures.
lead the conversation with patients in discussing how to harness the best parts
of that family culture to craft a strengths-based legacy that bolsters personal
purpose and growth, even in the context of disease, pain, and hardship.
Although not the only way, we believe this approach provides a powerful
starting point for helping patients and families enjoy as many days with fair
winds as possible and have the stamina to endure stormy seas.
Burgess, E. W. (1931). Family tradition and personality. In K.
Young (Ed.), Social Attitudes (pp. 188-207). New York, NY: Henry
Boszormenyi-Nagy, I., & Krasner, B. R. (1986). Between give
and take: A clinical guide to contextual therapy. New York, NY:
|Alex Schmidt, PhD, LMFT-A is an avid advocate of family-centered
healthcare. She received her PhD in Marriage and Family Therapy from Texas Tech
University and completed a Medical Family Therapy fellowship at St. Mary’s
Family Medicine Residency in Grand Junction, CO. She now works as an Integrated
Behavioral Health Advisor for Rocky Mountain Health Plans, where she partners
with primary care practices in strategic scheming and dreaming to sustain
integrated behavioral health practices and puts her graduate school research
skills to good use to track down relevant, practical resources for providers. |
|D. Scott Sibley, PhD, LMFT, CFLE enjoys teaching and researches commitment
in couple relationships. He received his PhD in Marriage and Family Therapy
from Kansas State University. He completed an internship at the University of
Nebraska Medical Center in the Department of Family Medicine. He is currently an
assistant professor in Human Development and Family Sciences at Northern
Illinois University. |
|Caroline Dorman, MD attended medical school at Oregon Health
Sciences University after receiving an undergraduate degree in Psychology. She
completed her residency at St. Mary’s Family Medicine Residency in Grand
Junction, CO. Post-residency, she modeled herself after Dr. Quinn Medicine
Woman and practiced in the isolated town of Craig, CO, where she did a little
bit everything including CBT and making house calls on horseback. She returned
to St. Mary’s to teach and mentor family medicine residents, where she has been
inspiring young physicians for ten years. Next year, she’ll enter a new phase
of her career providing hospice care. |
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Posted By Jeremy Yorgason,
Thursday, November 17, 2016
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This post is a reprint of a piece from the Families and Health Blog. Click here for the original post.
Health problems are generally seen as a stressor to those in committed, couple relationships. That is, when a partner becomes ill, it often puts a strain on the relationship through the ill partner (a) not being able to perform the same level of household chores, (b) losing time at work/earning money, (c) having to pay for doctor bills and prescriptions, (d) having less positive or increased negative mood, and (e) having fewer positive and more negative couple interactions. These stressors associated with poor health within couple relationships have been established in the research literature.
At the same time, there are a number of studies that have indicated paradoxical outcomes within couple relationships in the context of illness. For example, research has shown that some couples suggest that their relationship has become closer in ways because of one partner having diabetes, hearing loss, a disability, or arthritis symptoms. So which is the right answer? Does illness strain couple relationships, does it bring partners closer together, or can couples expect both strain and closeness? The answer may depend on how we view illness.
Our perceptions of illness provide the lens through which we see health challenges. From a health STRESSOR perspective, illness can present difficult challenges for individuals and couples. From a RESILIENCE perspective, some people are strengthened in their relationships when faced with illness challenges. In fact, some couples’ relationships may be stronger than they would have been had they not faced a health challenge together and bonded through that adversity.
Given that not all people respond to illness or health stressors the same way, and that some couples apparently develop stronger relationships through health adversities, what factors might more readily lead to "paradoxical” or beneficial results? Research suggests the following factors likely benefit couples:
- Having a strong marriage relationship prior to illness onset
- Communicating openly about health challenges
- Having empathy for an ailing spouse
- Having resources that can be tapped such as social support and appropriate medical care
Other studies suggest that being over-controlling and overprotective as a caregiving partner has detrimental effects.
|Relationship resilience is possible among all couples||There is so much more that we can learn about the bi-directional relationship between health and couple relationships. Future research ideas include examining partner flexibility in future life planning, relationship history of overcoming past challenges together, and whether healthy partners choose at some point during an illness to be committed to their relationship, to their partner, and to working through whatever may come regardless of the outcome. In short, the mechanisms of health challenges linked with stronger couple relationships are largely unknown.|
From a clinical perspective, relationship resilience is possible among all couples wherein one partner or both are faced with health challenges. At the same time, the reality is that health problems are nearly always a stressor on couples. Perhaps the acknowledgement of stress with the willingness to pursue resilience in response to health challenges will provide hope and courage to struggling couples. Perhaps even relationships that are "on the rocks” or experiencing a pile-up of stressors can emerge stronger when faced with health challenges. Clinicians might specifically encourage couples to:
- Communicate regularly about the health problems, and the difficult decisions and topics they may face
- See themselves as collaborators in facing illness, rather than as being alone in the process
- Consider the illness as not being part of the ill person’s identity or the identity of the couple relationship
- Discuss what is helpful support, and what, if any, types of support might feel overinvolved or controlling to the ill partner
- Try to balance autonomy in the patient, while allowing appropriate dependence or interdependence between partners
Hopefully with the encouragement of healthcare professionals more couples facing serious illness will experience the health paradox within marriage.
|Dr. Jeremy Yorgason is an Associate Professor and Director of the Family Studies Center within the School of Family Life at Brigham Young University. He is also a licensed marriage and family therapist in the State of Utah. His research is focused on marriage health in later life, with an emphasis on how couples manage chronic health conditions. His research often involves daily diary surveys as well as information from both spouses in the relationship. He has studied couple relationships in context of various health concerns including osteoarthritis, acquired hearing impairment, diabetes, arthritis, disability, and declines in self-rated health. |
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Posted By Valerie Ross,
Tuesday, November 8, 2016
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"If you are interested in applying for the BFEF fellowship, the
application can be found at the link here. You may also contact the
fellowship director Kathryn Fraser at firstname.lastname@example.org.”
The job of residency behavioral
scientist is complex. I was lucky to have had a mentor when I started. This was an unusual circumstance. Most
behavioral scientists work alone and training is limited. For example, one of
my colleagues was simply handed a box of old teaching files as his/her orientation
to the job.
About 7 years ago I was offered a
chance to be a small group mentor for a new program: the STFM Behavioral Science/Family
Systems Fellowship Educator Fellowship (BFEF). I felt honored and excited, and wondered what
would evolve. It turns out that agreeing
to be part of this effort has been one of the most rewarding experiences of my
professional life. The BFEF is a year-long
mentorship program for new behavioral scientists.
Since it began, more than 100
behavioral scientists have gone through the BFEF program. Fellows are coached in groups of four by two seasoned
faculty mentors: a family physician and
a behavioral scientist. Groups meet in
person at two conferences, and monthly through conference calls. Co-mentors strive to support each other, while
creating a space for professional metamorphosis for the fellows.
I have now coached two groups of
fellows. Each year when I meet the new fellows they talk about struggling to create
a professional identity and understanding the intricacies of the job. Throughout
the year together we celebrate successes, provide basic curricular resources, problem
solve around professional challenges, and help fellows develop a scholarly
By the end, having been initiated into a group of creative and
committed educators, fellows are more confident in their professional
identities. The mentees’ trust,
vulnerability and appreciation have helped me to become a better teacher and
more confident in my abilities as well.
My co-mentors have also taught me to be more skillful as a leader and
Over the years the roles of mentee and mentor
give way to that of colleagues and friends. I treasure my connection with this
growing community of dedicated people who share the vision of a more integrated
and humane medical system, aspire to lead, and are always willing to listen and
share resources. We continue to evolve and grow together in ways we never imagined.
Valerie Ross MS, LMFT,
has been Director of behavioral science for the University of Washington
Family Medicine Residency since 2003.
Her academic interests include:
relationship centered care, narrative medicine, direct observation for training
residents in patient centered skills and self-assessment, complexity in primary care, and mind-body
medicine. Her professional writing has focused on narrative ideas, direct
observation, and complexity care plans. Lately, she has been enjoying exploring
the application of theater improvisation in medical training (medical
improv). She loves spending time with
family and her wonderful 6yo golden retriever, playing cello, practicing yoga
and meditation, and hiking in the beautiful Northwest.
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Posted By Jess Goodman, Erin Sesemann,
Wednesday, October 5, 2016
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This post is a nod to the upcoming, opening plenary address at the 2016 CFHA Conference in Charlotte, NC.
health of children and adults who identify as lesbian, gay, bisexual, or
transgender (LGBT) has the potential to be greatly
impacted by their family, health care system relationships, and the broader
context of where they live. The research tells us this can be done in both
tremendously helpful and hurtful ways. Let’s take a deeper look…
Growing up, it was common to
have my mom accompany me and help me fill out forms detailing my personal
information when I went to see my primary care provider. The forms provided my healthcare
team basic background information like my demographics (i.e., gender, age, or
ethnicity) and personal/family medical histories (i.e., history of smoking,
heart attacks, or cancer). But, what if this basic information isn’t actually
so basic? What if my mom didn’t really know everything about me? What if it’s
because I couldn’t tell her everything about me?
Through all these background
forms we completed in my childhood, I didn’t tell my mom that I’m transgender.
I didn’t tell my mom I didn’t feel like a girl. I didn’t tell my mom that I
wanted the world to know and see me as a boy. No one knew the emotional turmoil
I kept inside me. No one knew about the anxiety and depression I felt every
time I was called a girl. The sigh I breathed and how I hung my head every time
I had to check the female box on my background forms.
doesn’t reflect all family dynamics and reactions to children who identify as
LGBT. There are many warm, accepting families that would adjust and support
Jenna sharing her identification as transgender. They might listen and validate
her struggles of being called, categorized, and labeled as female when she
actually felt and considered herself male.
A supportive family might even walk
with Jenna as she explores changing her name, preferring to be acknowledged by
the pronoun "he” rather than "she”, wearing different clothes, or beginning
hormone replacement therapy. They might, again, return with Jenna to the
primary care healthcare team to help start the conversation about what options
are available to address not only the physical symptoms, but also address the
anxiety, depression, and lifestyle changes.
what if our patients do feel similar to Jenna? What if our patients’ families
are dismissive or rejecting? What if they don’t understand and/or wouldn’t
accept their LGBT family members? Maybe there are some themes from Jenna’s
story that do apply to our patients.
If so, are there ways we can communicate
acceptance and safety in our offices to the LGBT community when they may be too
afraid to start that conversation? Are there resources/handouts available to
patients who might be secretly struggling? Are we, as the healthcare team, able
to offer patients safe spaces to begin talking about the issues that so far
they can only communicate about through their physical ailments?
primary care health care center, I spoke with a healthcare team that included 2
primary care providers (PCPs), a nurse, and case worker. Through this
conversation I realized there are many small acts that healthcare teams are
already doing that communicate care and support. This can be done in a more
indirect approach, such as asking teens about dating both boyfriends and
girlfriends at child-well checks, or it can be more direct, such as asking
specifically about a patient’s sexual orientation in relation to their physical
or mental health symptoms.
Within the family context there are also some ways
that a healthcare team can intervene to help restructure the family’s
communication about the patient identifying as LGBT. The specific intervention
or treatment approach will differ based on the personality and preference of
the PCP, nurse, or case worker but there are some general tips to keep in mind
when attending to patients who identify as LGBT:
Barriers to Consider and Possible Interventions
LGBT youth can lack power within the family system to
have control over their lives or access to their prescribed treatments.
ask LGBT youth about family reactions to their identity to assess for level of
family rejection, if any, and related health risks
- Ask questions such as: "Who are you out to”?
- If out to family, "How has your family reacted
to you coming out to them, or sharing this part of your identity with them”?
- If not out to family, "What do you think is
getting in the way of coming out to, or sharing this part of your identity with
psychoeducation to families of LGBT youth about the health risks associated
with lack of support for the youth based on sexual orientation and gender
identity, and ways to be supportive and engaged4.5,6,7,8
a safe, non-reactive space for LGBT patients to share through active listening
and empathic statements
- Become familiar with medical and behavioral health
providers in your are that have experience working with LGBT populations
- Provide information about LGBT community and
support groups in your area that can offer peer support and mentorship
on age, safety, and level of independence of patient, it may be appropriate to
help connect LGBT patients to public transportation, local community resources
that provide transportation, or mail-delivered prescriptions, if appropriate
and legal (Consult with PCP, pharmacist, and other health care providers as
- Refer patient and/or families to trained family therapy
providers, strength-based support groups or peer counseling, and on-line
credible resources for families of LGBT youth; follow-up with youth and
youth and adults may remain in silence
or denial about LGBT identity due to assumptions or fear of experiencing dismissive or rejecting reactions from the healthcare team, which may prolong
physical and mental health symptoms
posters or flyers in your clinics that include LGBTQ youth, same-sex couples,
all staff on LGBT health and competencies1
single stall, gender- neutral bathrooms1
gender identity and sexual orientation in non-discrimination policies1
patients to identify their sexual orientation and gender identity, as well as
preferred name and pronouns on appropriate forms1
office policy in compliance with local laws regarding confidentiality for
health history as a conversation, not a check list1
sensitive topics, such as sex and substance use, as routine questions for all
patients, using non-judgmental tone and body language1
youth, use the mnemonic H.E.A.D.S.2 for taking social and behavioral
questions about gender and sexuality, and don't make assumptions
- Use questions and statements
am going to ask you some questions about yourself and I want you to tell me how
you feel, not how you think others see you or how others think you should feel.
These are questions I ask all my patients.1
you attracted to boys/men, girls/women, or both? 1
do you feel about your attractions?1
words do you use to describe your sexual identity?1
gender do you consider yourself to be regardless of what body parts you may
- How do you feel about your gender? 1
patients may lack a social support
system due to family and/or community cultural values or religious beliefs that do not accept, tolerate, or embrace
LGBT patients quit taking medications for symptoms
(such as depression or anxiety) because they do not believe the medications
will help treat the root of their problems (i.e., stress of identifying as a sexual or gender orientation minority,
family rejection, community isolation, etc.)
for support needs in a respectful way by inquiring about the presence and types
of social supports of patients
opportunities for disclosure of relationships and supports, including respectfully
inquiring about patients’ relationships with others accompanying them at
appointments, keeping in mind it may or may not be family members or local
patients with LGBT community resources and trained behavioral health
specialists in LGBT care, as needed
patients with supportive online/social media LGBT resources
validation and normalization statements to increase LGBT patients’ communion
with others from the broader LGBT community and local healthcare center
Motivational Interviewing3 techniques to assess and promote
different ways patients’ may exercise their agency within their context.
Examples may include:
open-ended questions to help patients verbalize how they are making meaning
about the possible discrepancies between their personal identification and
cultural or family or religious values
- Provide affirmations to patients’ strengths
throughout the encounter, such as his/her courage to self-disclose in
respectfully curious about the reason they have stopped taking their medication
validation for patients’ experiences without expressing agreement
for possible additional personal or cultural biases related to medications that
may inhibit their willingness to adhere to treatment (i.e., medication =
patients on the health risks associated with stopping medication, stress, and
lack of social support
- Discuss alternatives to medication, including
journaling, meditation, increasing activity levels, individual and family
counseling, and offer LGBT community resources and supports
about a patient you’ve seen in the past that you may or may not have asked
about their sexuality or gender identity. How did knowing or not knowing this
information impact the care you provided? Were you curious about their sources
of support? Did you make assumptions about the sources of support they had, or
did you ask about it? How did it help to know the answer, or why do you wish
you would have known?
didn’t ask about these things, what do you think got in the way? What do you
think it will take for you to be able to ask these questions?
of our beliefs, we need to be prepared to have conversations that foster
openness and understanding with all patients. The healthcare team is uniquely
positioned to assess for social support needs and work with patients and their
families or families of choice to access the care and services they need for
whole health. Take a moment to think about your office and the ways you can
better create a safe space for your LGBT patients and their families, help
patients utilize social support for better health and healing, reduce the
health disparities and discrimination, and promote every aspect of our LGBT
Additional resources for
providers support LGBT adults and their social support networks:
- Fredriksen-Goldsen, K. I., Hoy-Ellis, C. P., Goldsen, J., Emlet, C. A.,
& Hooyman, N. R. (2014). Creating a vision for the future: Key competencies
and strategies for culturally competent practice with lesbian, gay, bisexual,
and transgender (LGBT) older adults in the health and human services. Journal
of Gerontological Social Work,57(2-4), 80-107.
- Lim, F. A., Brown Jr, D. V., & Kim, S. M. J. (2014). CE: Addressing
health care disparities in the lesbian, gay, bisexual, and transgender
population: A review of best practices.AJN The American Journal of
resources for providers supporting LGBT youth and their families:
- Ryan, C. (2009). Supportive families, healthy children:
Helping families with lesbian, gay, bisexual & transgender children.
San Francisco, CA: Family Acceptance Project, Marian Wright Edelman Institute,
San Francisco State University.
- Ryan, C., & Monasterio, E.
(2011). Providers’ guide for using the
FAPrisk screener for family rejection & related health risks in LGBT youth.
San Francisco, CA: Marian Wright Edelman Institute, San Francisco State
- Substance Abuse and Mental
Health Services Administration (SAMHSA). (2014). A practitioner’s resource guide: Helping families to support their LGBT
children. HHS Publication No. PEP14-LGBTKIDS. Rockville, MD: Substance
Abuse and Mental Health Services Administration, 2014.
1The National LGBT Health Education Center. Caring for LGBTQ
youth in clinical settings. Retrieved August 8, 2016 from http://www.lgbthealtheducation.org/training/learning-modules/
2Goldenring, J. M., & Rosen, D. S. (2004). Getting into
adolescent heads: an essential update.CONTEMPORARY
3Miller, W. R., & Rollnick, S. (2012). Motivational interviewing: Helping people
York: Guilford Press.
4The National LGBT Health Education Center.
Resources and suggested readings. Retrieved
September 19, 2016 from http://www.lgbthealtheducation.org/lgbt-education/lgbt-health-resources/
5Bouris, A., Guilamo-Ramos, V.,
Pickard, A., Shiu, C., Loosier, P.S., Dittus, P., Gloppen, K., & Waldmiller, J.M. (2010). A systematic review
of parental influences on the health and well-being
of lesbian, gay, and bisexual youth: Time for a new public health research and practice agenda. Journal of Primary Prevention, 31, 273-309. doi:10.1007/s10935-010- 0229-1
6Ryan, C., &
Chen-Hayes, S. (2013). 13 Educating and Empowering Families.Creating Safe
and Supportive Learning Environments: A
Guide for Working With Lesbian, Gay, Bisexual, Transgender,
and Questioning Youth and Families, 209.
7Ryan, C., Huebner,
D., Diaz, R.M., & Sanchez, J. (2009). Family rejection as a predictor of negative health outcomes in white and
Latino lesbian, gay, and bisexual young adults. Pediatrics, 123,
346-352. doi: 10.1542/peds.2007-3524
8Ryan, C., Russell, S.
T., Huebner, D., Diaz, R., & Sanchez, J. (2010). Family acceptance in adolescence and the health of LGBT
young adults.Journal of Child and Adolescent Psychiatric Nursing,23(4), 205-213.
|Jessica Goodman received her M.S. in Family Therapy from the
University of Massachusetts in Boston. She is currently a Ph.D. Student in the
Medical Family Therapy program at East Carolina University. Her present
research goal is to develop an evidence-based integrated care protocol for the
ED to reduce health disparities among minority and underserved populations
experiencing diverse concerns in an emergency setting. |
|Erin Sesemann is a current Ph.D. Student in Medical Family Therapy at East Carolina University. She has experience working in community mental health agencies, private practice, and integrated behavioral health care in primary care. She graduated with her M.S. in Marriage and Family Therapy from Oklahoma State University in Stillwater, OK.|
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Posted By Tina Schermer Sellers,
Wednesday, September 28, 2016
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Tina will host a Masters Lecture at the upcoming 2016 Annual Conference in Charlotte.
It’s 9 am and you are already
behind. Bob, 56, is on your schedule. It’s a follow up for his
diabetes and blood-pressure. You have seen Bob, his wife Anne, and their
three kids for over ten years. As you walk in, Bob seems anxious. You talk
about the local football team, how the kids and Anne are doing, and then about
his issues. You ask about how he is doing generally. Bob says he is
really slammed at work and has been traveling a lot.
He then says, "Hey doc,
we’ve been friends a long time, right?” "Yea, I’ve been seeing you for a long
time”, you answer. "Well”, Bob continues, "I need you to keep a secret. I need
you to run a little test for me. You see, I have this weird burning
sensation when I pee, and I haven’t exactly been faithful. But you can’t tell
Anne!” "Holy crap”, you think, "I saw Anne on my schedule for her annual
In the hamster wheel that is primary
care, clinicians master the art of moving and thinking fast - morning until
night – except for those precious moments when they give patients their
expansive attention. But the expansiveness stops there. If the provider is
impacted by an ethical dilemma, where is the time to process this? If there
were time, is consultation encouraged in the clinic culture? If it is, who is
available to consult?
Dilemmas such as these come in many forms, from patients
presenting lifestyles that conflict with the provider’s beliefs and values, to
being placed in a triangle. A patient might consent to something that puts
their emotional or physical health in danger or a loved one might make a choice
for a dying patient that you disagree with, or another family member disagrees
with. There are many situations that potentially fall outside the realm of what
is clearly defined by a clinician’s guild.
For example, do you know how to deal
with the kink couple who has a fetish that involves injury? Would you be able
to distinguish this from abuse? What kinds of questions would you ask to be
sure consent was being given versus coercion? How do you feel about treating a
transgender adolescent? What if their parent is against their transition?
How do you feel about treating a gender fluid teen? What if you had a patient
with a rare benign brain tumor that went metastatic and now looked like it would
be fatal, but she was refusing to tell her teen daughters and forbidding her
husband to tell them also?
Do you know how to deal with the kink couple who has a fetish that involves injury?
Since it is impossible to prepare for
all ethical dilemmas that might confront the clinician in primary care, the
provider must broaden their awareness of what triggers their reactivity in the
face of ethical dilemmas, and closes their curiosity and openness – a kind of
provider self-inventory. This is done through two primary avenues. First is to
explore key beliefs and values that inform their spirituality or sense of
truth, and examine the positive and negative sides of these beliefs with regard
to how they influence their work as a clinician.
Second is to stay focused on
their concern for the health and well-being of their patient and of the family system.
To do this, they ask open-ended questions about how well-being is or is not
being maintained, and the potential dilemmas being imposed. Beyond these two
avenues, it is important for the clinician to create strategies to support
themselves. These kinds of situations take an emotional toll.
Strategies both at the clinic, and outside of the clinic, must be in place to
restore and renew the provider if they are to thrive as a healer.
Come explore as we unpack the wild and
mysterious underbelly of primary care, where the clinician’s heart meets the
patient’s autonomy … and they don’t see eye to eye.
|Tina Schermer Sellers, Ph.D., LMFT, the director of the Medical Family Therapy Post-graduate Certificate Program in the Department of Marriage and Family Therapy at Seattle Pacific University. She has been a member of the Collaborative Family Healthcare Association (CFHA)since 1993, is a past board member and is currently on the CFHA Advisory Board. She is also a Certified Sex Therapist and Supervisor for AASECT. |
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Posted By Ryan Jackman,
Tuesday, September 20, 2016
| Comments (1)
I first met Nick (name changed) in May of 2016 in a rural
Emergency Department in Western Colorado as I placed a central line into his
neck after he had been intubated. Nick, like far too many others, had overdosed
on opioids. It was three days until Nick was extubated because of aspiration
pneumonia sustained during the episode, and it was three days until I got the
entire story – a story that unfortunately is not unique.
Nick had been working
on sobriety from prescription opioids and heroin on his own, and had managed to
endure withdrawal and cravings for three weeks before a relapse. When he
relapsed he returned to taking the same dose of heroin he had previously used. Without
the tolerance he had previously developed, his brain was overwhelmed by the
heroin and his respiratory drive was compromised to the point that when his
aunt found him the next morning and called 911 he was blue, unresponsive, and
Drug overdose is the leading cause of accidental death in
the US (having surpassed motor vehicle crashes and firearm related death in
20081,2), with 47,055 lethal drug overdoses in 2014. Opioid
addiction is driving this epidemic, with 18,893 overdose deaths related to
prescription pain relievers, and 10,574 overdose deaths related to heroin in
2014.3 Even more alarming are the number of non-fatal overdoses,
estimated to be 25-30 times greater. These
astonishing numbers have led the CDC and Obama Administration to name the
current opioid crisis an epidemic and one of the top four epidemics currently
facing the U.S. including obesity, heart disease, and cancer.4,5
addition, these numbers have attracted record media attention with numerous
research studies, news stories, and television documentaries all seeking to
quantify and characterize the problem; something that Scott Pelley’s recent 60 Minutes
monologue summarized well: "After 40 years and a trillion dollars, the nation
has little to show for its war on drugs. Prisons are beyond crowded and there’s
a new outbreak in the heroin epidemic. If it’s time for a change, it would be
One way that this change has come is in the form of naloxone,
or Narcan®. It is a medication that is well known in the field of medicine, but
until relatively recently was not endorsed to be prescribed to the general
public; a fact that research is now showing was a fatal mistake. 7,8,9,10,11
Opioids do their most damage during an overdose by decreasing
a person’s respiratory rate, which can ultimately produce coma, heart failure,
and death from lack of available oxygen. Thus, reversing opioid effects in a
timely manner is crucial when an overdose occurs. So crucial, that waiting for EMS to arrive and
administer naloxone may be too long. For this reason, a national effort is
being made to increase outpatient naloxone prescribing and training.12
At the Center for Dependency, Addiction, and Rehabilitation
(CeDAR) in Denver, Colorado, where I work, specific attention is being given to
train patients with opioid use disorder and their loved ones on the use of naloxone.13
This training consists of: Didactics on recognizing overdose vs
overmedication, the value of naloxone in an overdose, assessing breathing and
how to deliver rescue breaths if needed, administering intranasal naloxone, and
involvement of emergency services.
Beginning in 2014 CeDAR began training these
individuals in the inpatient rehab setting, and has received significant
positive feedback from patients, family members, and friends as well as a
report of an overdose reversal. Given the success of this program it was
quickly expanded to the outpatient setting where it was implemented in an
opioid support clinic that has been embedded into a local patient-centered
medical home family medicine clinic, complete with integrated mental health
Reversing opioid effects in a timely manner is crucial
This setting, with all of its services and team-based integrated care
has not only allowed for this program’s streamline implementation but has also
allowed for the program to be improved upon. Some of the ways in which this
program was improved upon and patient care was expanded through an integrated
care model include:
The flexibility of performing training in both
individual and group settings.
Recognizing that naloxone training naturally
provides multiple intervention/discussion points that are benefited by integrated
behavioral health co-visits where the team is able to point out that:
Naloxone offers patients and loved ones, who
often feel powerless, a tool and sense of empowerment in addressing a disease
that impacts every component of their lives. Additionally, it empowers the
patient to treat an overdose in another person if needed.
Addiction is a chronic disease with a
relapsing-remitting pattern, and prescribing naloxone is evidence of the
patient’s commitment to treatment rather than providing a patient permission to
A naloxone prescription further invests the patient
and his/her support team in his/her care
o Multiple team members available to contribute and
lead training which allowed for efficiency, including working with pharmacies
to have naloxone prescription available to distribute at the training.
o Continuity and breadth of care which help to
increase patient and his/her support team’s buy in.
o Advocacy by members of the team for patients and
within the medical community, helping to address misperceptions by other health
care providers regarding naloxone and addiction.
The bottom line is that opioids are killing people and
destroying social constructs, such as family, that are crucial for health.
Naloxone is a tool that has been under-utilized, but that integrated health
care is in the perfect position to effectively utilize and increase the number
of lives that are saved. Naloxone isn’t the "silver bullet” to the opioid
crisis, but like epinephrine in anaphylaxis; naloxone is the life-saving
"second chance” that patients like Nick need.
Imagine a scenario where Nick’s
aunt had naloxone on hand for immediate treatment and knew the symptoms of
overdose to look for. He may not have required the same level and duration of
care, and even if he had, the sense of purpose his aunt would have experienced
in the moment would be much preferred to the sense of utter helplessness she
experienced instead. When I met with Nick before he left the hospital for a
rehab intake appointment, a prescription for naloxone in his hand, he said
"Thank you. That was eye-opening. I’m glad I got to wake up.”
For additional clinical guidance the following online
resources are available:
SAMHSA Opioid Overdose Toolkit: https://store.samhsa.gov/shin/content/SMA13-4742/Overdose_Toolkit_2014_Jan.pdf
1. U.S. Department of Justice Drug
Enforcement Administration. (2015). National
Drug Threat Assessment Summary (DEA-DCT-DIR-008-16). https://www.dea.gov/docs/2015%20NDTA%20Report.pdf
Aleshire, N.,Zibbell, J., Gladden, RM. (2016). Increases in Drug and Opioid Overdose Deaths
— United States 2000–2014. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6450a3.htm
3. Center for Disease Control and
Prevention, National Center for Health Statistics, National Vital Statistics
System, Mortality File. (2015). Number
and Age-Adjusted Rates of Drug-poisoning Deaths Involving Opioid Analgesics and
Heroin: United States, 2000–2014. Atlanta, GA: Center for Disease Control
and Prevention. http://www.cdc.gov/nchs/data/health_policy/AADR_drug_poisoning_involving_OA_Heroin_US_2000-
Center for Disease Control and Prevention. (2016). Injury Prevention and Control: Opioid Overdose. http://www.cdc.gov/drugoverdose/epidemic/
5. The White
House, Office of the Press Secretary. (2016). Fact Sheet: Obama Administration
Announces Additional Actions to Address the Prescription Opioid Abuse and
Heroin Epidemic [Press release]. https://www.whitehouse.gov/the-press-office/2016/03/29/fact-sheet-obama-administration-announces-additional-actions-address
6. Pelley, S. (2016, June 5). A new
direction on drugs. [Television broadcast]. Fager, J. (Producers), 60 Minutes.
New York, CBS Broadcasting. http://www.cbsnews.com/videos/a-new-direction-on-drugs-2/
Maxwell, S., Bigg, D., Stanczykiewicz, K., & Carlberg-Racich,
S. (2006). Prescribing naloxone to
actively injecting heroin users: A program to reduce heroin overdose deaths.
Journal of Addictive Diseases, 25(3), 89–96.
Piper, T., Rudenstine, S., Stancliff, S., Sherman, S., Nandi, V.,
Clear, A., Galea, S. (2007). Overdose
prevention for injection drug users: Lessons learned from naloxone training and
distribution programs in New York City. Harm. Reduct. J., 4,3.
Seal, K., Thawley, R., Gee, L., Bamberger,J., Kral, A., Ciccarone,
D., Downing, M., Edlin, B. (2005) Naloxone
distribution and cardiopulmonary resuscitation training for injection drug
users to prevent heroin overdose death: A pilot intervention study. Journal
of Urban Health, 82(2), 303-311.
Sporer, K., Kral, A. (2007). Prescription
naloxone: A novel approach to heroin overdose prevention. Annals of
Emergency Medicine, 49(2), 172-177.
Tobin, K., Sherman, S., Beilenson, P., Welsh, C., Latkin, C.
(2009). Evaluation of Staying Alive
programme: Training injection drug users to properly administer naloxone and
save lives. International Jouranl of Drug Policy 20:131-136
Haegerich, TM., Chou R. (2016). CDC
Guideline for Prescribing Opioids for Chronic Pain — United States, 2016. MMWR Recomm Rep; 65:1–49
Fehling, P., Collins, S., Martin, L. (2016). Opioid
Overdose Prevention in a Residential Care Setting: Naloxone Education and
Distribution. Subst Abus; 0:0, 1-5. Apr 19:0 [Epub ahead of publishing]
|Ryan Jackman, MD is a
board certified family physician that is currently completing a one-year
addiction medicine fellowship at the University of Colorado, Denver. He
recently completed his family medicine residency in Grand Junction, CO. In
addition to addiction medicine, his clinical interests include full spectrum
medicine, obstetrics, rural medicine, and clinical-based research which
currently includes a joint project for STFM-NIDA focused on expanding addiction
medicine curriculum in family medicine residencies. He is married with two
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Posted By Laurelle Myhra,
Thursday, September 15, 2016
| Comments (0)
American Indians and Alaska Natives (AI/ANs) have the
highest prevalence rate of suicide in the nation. Suicide is the second leading cause of death
among AI/ANs between age 10 to 34, and 1.5 times higher than the national
average for ages 15 to 34 (CDC, 2013, 2011). Risk factors for
suicide include mental health disorders, substance abuse, intergenerational
trauma, and community-wide issues (Indian Health Services (IHS), 2016).
Additionally, social ills contribute to risk
factors, including experiences of systematic oppression, trauma, racism (e.g.,
mascot) and historical trauma practices (e.g., boarding school). These impede
the potential impact of protective factors and have been linked to the state of
public health (e.g., health disparities, chronic disease) among AI/ANs today
(Campbell & Evans-Campbell, 2011; Gone & Trimble, 2012; Walters et al.,
today, AI/ANs are victimized at the
highest rate of any other racial group, twice the rate of other groups, and mostly
commonly by strangers or acquaintance (80%) most of which are White (60%;
Perry, 2004). Resilience, one’s ability to quickly recover from these traumatic
experiences, is based on the quality and number of protective factors at play. Factors
that protect AI/ANs against suicidal behavior are a sense of belonging to one's
culture, strong friendship,tribal and spiritual bonds, feeling connected
tofamily, opportunity to express feelings, and positive emotional health
my life has not been untouched by grief and loss associated with suicide. As a half
Anishinabe and Caucasian woman from Red Lake, MN, I witnessed from an early age
mistreatment of AI people. In the education system, this was evidenced by education
gaps, and personally being called stupid by a teacher and who then told the class
"all Indians are stupid”. My second grade self was angered and knew I should
tell my mother.
My mother was my biggest supporter, telling me I could do
anything I put my mind to, and although I never knew the outcome on our local
education system, my mother went many times to the school to discuss her
concerns about how I was being treated. As I grew up incidents such as these
persisted, but presented in the form of microaggression, where people would often
apologize before saying rude and racist things.
While in the third year of my
PhD program, my 22-year-old brother committed suicide. We were devastated. I
tried to understand why this young, handsome, bright, kind-hearted, funny and
loved person would take his life. He never shared with the family about
negative experiences he had, as I had. However, he dropped out of high school
and when I would encourage him regarding his education he was irritated with
me, and once told me "I’m not smart like you girls are”. I realized many years
later that somewhere along his short life he internalized the negative messages
he heard regarding AIs.
Great efforts are being made to address the high rates of suicide and
heal from trauma in Indian Country. There are a number of tool kits geared
toward reducing AI/ANs suicides with community and culturally based curriculum,
which can be found at Substance Abuse and Mental Health Services Administration
Tribal Training and Technical
Assistance Center. Northwest Portland Area
Indian Health Board (NPAIHB) has launched a anti-suicide media campaign
including posters and a fact sheet with the Community is the Healer that Breaks the Silence and has published a Tribal Suicide Action Plan availableto download on their site.
In the Twin Cities, Suzanne Koepplinger, a respected
elder, is leading the Catalyst
Initiative at the George
Family Foundation, to support culturally grounded healing practices and
promoting community resilience. In talking with Suzanne Koepplinger, she
explained that her goal is to support the use of existing healing practices, done
by healers already in place, and through the language of the community. This
strength-based approach trusts in the human capacity to heal from trauma by
drawing on existing traditional knowledge. Koepplinger believes this healing work
will lead to an enhanced sense of wellbeing and deeper family relationships.
Family Foundation awarded Minnesota Indian Women’s Resource Center (MIWRC) a
seed grant to introduce integrative health and healing practices to communities
most in need. Elders Linda Eaglespeaker and Donna LaChapelle of MIWRC, have become
certified faculty with Center for Mind Body Medicine of
Washington D.C., and are working on Pine Ridge Reservation with the Oglala
Sioux tribal members to heal from trauma and suicide as a community.
its success is spreading quickly, and other local tribes such as Leech Lake and
White Earth are requesting these teachings. Koepplinger emphasized the
importance of taking from the trainings what is culturally meaningful and
making cultural adaptations were needed. For example, Linda Eaglespeaker, has
blended the safe place guided imagery with her traditional Blackfoot teachings
to heal both physical and emotional pain.
of my brother taught me that we need to do a better job of understanding and
addressing the impact of racism and other traumatic experiences on children. Locally
there is a grass roots initiative called Mill City Kids, focused on doing just
that, prevention against the effects of racism with both African American and
Mill City Kids is one of the initiatives selected by Silos to
to go through a process of Community Resiliency Planning, in which community
members identify goals and take action steps to address them collectively. Efforts
such as these are inspiring and provide hope for the future. There is not quick
solution to addressing these social ills but acknowledgement is a first step.
|Laurelle Myhra, PhD, LMFT is the Director of Health Services
at Catholic Charities of St Paul and Minneapolis. Her clinical work and research
has focused on families, resiliency, trauma, mental health, substance abuse and
integrated care among American Indians. She received her doctorate in Family
Social Science/Marriage and Family Therapy from the University of Minnesota. |
C. D. & Evans-Campbell, T. (2011). Historical trauma and Native American
child development and mental health: An overview. In: Sarche, M., Spicer, P.,
Farrell, P., Fitzgerald, H. E. (Eds.). American Indian and Alaska Native Children and Mental Health:
Development, Context, Prevention, and Treatment (pp. 1–26).Santa Barbara, CA: Praeger.
for Disease Control and Prevention (CDC). Web-based Injury Statistics Query and
Reporting System (WISQARS) [Online]. (2013, 2011) National Center for Injury
Prevention and Control, CDC (producer). Retrieved from http://www.cdc.gov/injury/wisqars/index.html
Gone, J. P. & Trimble, J. E. (2012). American Indian and
Alaska Native mental health: Diverse perspectives on enduring
disparities.Annual review of
clinical psychology, 8, 131–160.
Indian Health Services (IHS; 2016). Suicide Prevention Program. Retrieved from https://www.ihs.gov/suicideprevention/
Perry, S. W.
(2004). American Indians and Crime. A
BJS Statistical Profile, 1992-2002. U.S. Department of Justice. Office of
Justice Programs. Bureau of Justice Statistics. Retrieved from https://www.justice.gov/sites/default/files/otj/docs/american_indians_and_crime.pdf
Substance Abuse and Mental Health Services Administration
(SAMHSA, 2016). Suicide Prevention. Tribal Training
and Technical Assistance Center. Retrieved from http://www.samhsa.gov/tribal-ttac/resources/suicide-prevention
K. L., Mohammed, S. A., Evans-Campbell, T., Beltrán, R. E, Chae, D. H., & Duran,
B. (2011). Bodies don’t just tell stories, they tell histories.Du Bois Review: Social Science Research on
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Posted By David Ziobro,
Tuesday, August 23, 2016
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This blog post is a reprint of an earlier piece. Click here for the original post.
"Well, at least they went quickly and didn’t suffer.” That’s what people say when someone dies. I understand what they mean. But she didn’t go quickly. No, it was a long slow steady decline. Did she suffer? No, with the pain meds, and her loss of memory, she didn’t suffer, but I did.
When we were told that the cancer had spread to her brain, the clock started to tick. Life went on as much as it could. She was able to do some of the things she enjoyed like reading, crafts, and needlepoint. In time, those activities became impossible, and TV and the two hours a day with her aide became her life. Our aide was a friendly young woman; they would sit and talk about all kinds of things, and they liked to look at our photo albums. Our aide was planning a trip to Disney World, and my wife really enjoyed helping her plan it. The trip ended up being scheduled the week after my wife passed away. Her aide was not able to attend the viewing or the funeral. It was almost like my wife planned it that way.
As time passed, we entered the beginning-of-the-end dates. When we were given the diagnosis, the doctor simply would not give us a time frame. The internet however gives you lots of information--we were looking at a 16 month time frame, give or take. I was finally able to get the doctors and the hospice nurses to give me a better idea after many conversations. They were all given with reluctance, and usually accompanied by "everyone’s situation is different.” When we hit the beginning of the possible time frame, it got interesting. By this point I had taken the 90 day FMLA leave from work, and I ended up taking another 90 day leave of absence as well.As with most everything in her life, my wife exceeded expectations: she lasted 23 months.
During the final 6 months of her life, we were in the "anytime” zone. Every morning was difficult for me. Was today the day? Remember when you had your first child and, inexperienced and fearful, you would walk into their room at night and listen for them breathing? Well there I was, going into her room in the morning wondering if this would be the day. I would hope upon opening the door she would move in some way so I would know right away. When she didn't I would walk up slowly and listen, a mixture of fear and then relief, followed by disappointment and then guilt. I had six months of that.
In the last year, my wife’s mental capacity diminished to the point where we could no longer really converse. We still talked, but I understood that she was not there, and our conversation would be forgotten as quickly as it started.
The good part was that she was totally unaware of her situation. She knew she was sick, but figured she’d get better and return to work soon. My wife had retired from her position as an elementary music teacher four years earlier. She began to ask about school and I would explain that she had retired. "Oh really, when did that happen…I don’t remember.” We would talk and it would be forgotten. Every night we would go through the routine about how she was retired.
Each morning, we were up early and would go through the same conversation. I had to move her car to her mother’s house around the corner for fear that she would just jump in and drive away. She had not driven since her diagnosis in 2009. Then we had to hide the car keys for all our other cars. Notes on the mirror, on the door, nothing seemed to help. Sometimes she would call the school and arrange to get a sub. The administrative assistant, who knew my wife well, would handle these phone calls with patient understanding. It turns out she enjoyed just talking to her. The rest of the staff were also amazing; they understood and dealt with it.
Every morning was difficult for me. Was today the day? So when someone says, "well, at least they went quickly and didn't suffer,” understand what suffering is. There are all kinds of suffering. My wife passed away 23 years after her diagnosis of breast cancer. She did better than expected, and did things her way. She once told me "I’m a difficult patient, I know that. It’s my life and I want to know what is going on. I don’t care if they think I’m a bad patient.”
In reality, according to her doctor, she was a good patient. He understood why she was the way she was. When she passed, her doctor told me what a strong person she was. He also told me what a fantastic job I did in taking care of her. I tried the best I could. It was difficult. Her doctor gave me a big hug when he told me that. Men don’t hug usually. It was so special because it gave me the feeling that I did good. The patient is the one being treated; the well spouse is often forgotten. He was telling me I was not forgotten. That was special.
|Dave Ziobro, Former Well Spouse|
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Posted By Barry J. Jacobs,
Thursday, July 21, 2016
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This piece was first published by the Huffington Post. Reprinted here with permission. Click here for the original post.
During her moving eulogy for her husband, Muhammad Ali, at last month’s memorial service in Louisville, Kentucky, Lonnie Ali, in a face-obscuring bonnet but with a forthright tone, declared, "Muhammad wants young people of every background to see his life as proof that adversity can make you stronger.”
Much the same can be said of the life of this 59-year-old woman, the fourth wife for the past 30 years of the boxing great, civil rights activist and world’s most famous man. From nearly the outset of their marriage, Muhammad showed signs of Parkinson’s disease. As he steadily declined in his capacities to ambulate and speak, their marriage became one between a spousal caregiver and a care recipient. She spent most of her time and energies attending to his increasing needs.
But if our country’s prevailing cultural narrative about family caregiving nowadays is mostly negative—as evidenced by a stream of tragic memoirs and movies depicting caregivers as entrapped, beleaguered and depressed—then Lonnie Ali was an exemplar of positive caregiving. At the same time she played the role of the Champ’s champion, she became our national Caregiver Advocate, especially while working on behalf of Parkinson’s caregivers. By re-reading her interviews with caregiver websites and the general media during her now-completed caregiving years, we can glean lessons for reaping caregiving’s potential rewards.
The tale of their slowly blooming love has been oft recounted, recently by the New York Times, People Magazine, and other major outlets. Lonnie was a 6-year-old, hometown Louisville girl who met Muhammad when he visited his old neighborhood as a 21-year-old heavyweight contender. She was at first scared of his sheer physical size and then enchanted by his playfulness. Later, as an adolescent, she found him to be an excellent confidante and guide whenever he periodically returned home. Her childhood crush on him eventually matured into womanly ardor. That love didn’t die during years of grinding caregiving. Rather, it helped sustain her commitment to caring for him, even during difficult times.
But it is just as evident in a 2010 WAMU interview with Diane Rehm that Lonnie liked and enjoyed her husband. When a caller on the radio show shared an anecdote about Muhammad’s generosity signing autographs and telling jokes, Lonnie said appreciatively, "That’s Muhammad.” She was happy to be with him—to see his mock-angry stare and silly mugging for the camera—and to witness his genuine and unbridled love of people. Liking even a debilitated Muhammad must have helped sustain her caregiving, too.
Practice positive acceptance:
Lonnie wasn’t interested in pity parties for herself or any other family caregiver or even loved ones afflicted with illness. In a 2014 video clip for AARP, she said, "You really have to play the hand that life deals you. Either you can fold and just let it overwhelm you or you can stay in the game.” She clearly was committed to hanging in there every day and doing the best she could. In a 2014 interview with Future of Healthcare News, she said, "When I wake up, I make the decision to speak in a joyous voice, to nurture positive energy, and to make this a good day.”
Gain a sense of mastery:
In numerous publications, Lonnie related how important it was for her to learn about Muhammad’s Parkinson disease and its treatments, as well as to develop good working relationships with physicians with whom she could communicate often and easily. All this gave her knowledge that took some of the uncertainty out of the long, downhill medical course. She told caregiver.com, "[The disease] is not something to be afraid of; the more you know, the more empowered you become.” As with many caregivers, she seems to have gained greater self-confidence over time as she helped her husband manage his Parkinson’s disease and live vitally with it.
Seek support and respite:
Lonnie told Diane Rehm that, however guilty caregivers may feel about reaching out for help, "you need to get someone in there to assist you.” For her, that meant asking her sister to come live with her and Muhammad when they resided in Phoenix. Her sister spelled her at times. At other times, she was just good company for them both.
Find greater purpose and meaning:
Perhaps the most important positive lesson that Lonnie has exemplified is in seeing caregiving in greater moral and spiritual dimensions. According to the New York Times, she "leaned on Ali to become the face of Parkinson’s.” Both he and she spent years collaborating with Michael J. Fox to raise money for Parkinson’s research.
But their faith is what carried them most during these years. She told People Magazine in 1997 that "Parkinson’s has made [Muhammad] a more spiritual person…God gave it to him to bring him to another level, to create another destiny.” The same applied to her. "[God] put me here for a reason,” she said on the AARP video, and added, "He’s not going to let go of my hand.”
Caregiving with love, purpose, mastery, acceptance and support—those are the practices that can bring positive benefits to even long-term caregivers. Lonnie Ali lost her husband but showed us how to gain a richer life.
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Posted By Terri Corcoran,
Thursday, July 7, 2016
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This piece was originally written for the Mainstay Newsletter, a publication from www.wellspouse.org. Reprinted here with permission.
When my husband Vince took his last breath at 9:15 p.m. on January 17 of this year, he crossed over into heaven, while I crossed over from "well spouse" to "former well spouse." In that one moment, as my beloved husband was released from the burden of his devastating neurodegenerative illness, I was released from the overwhelming and excruciating burden of caring for all of his needs through the many years of his relentless physical and cognitive deterioration. But while Vince is hopefully at peace in heaven, my trials in this life have not yet ended, and I am left with the heartbreak of his loss and the need to eventually rebuild a whole new life.
I am very gratified that I was able to care for Vince at home until he peacefully passed away in his own bed, with me and his daughter beside him. But I must admit that there were times over the years when the caregiving was so intense and tortuous that part of me would feel some envy for those well spouses who passed over to the "formers" camp. I knew that I would miss Vince horribly were he to die, but the caregiving demands would sometimes feel unbearable.
Suddenly, in that one moment, all the craziness stopped—just stopped. Suddenly there were no more aides camping out in my house; no more incontinence to control or supplies to keep on order; no more meals to purée; no more medications to crush; no more wranglings with the healthcare system, insurance companies and pharmacies; no more daily schedules to maintain; no more research to keep doing on Vince's unusual genetic condition; no more injections, shaves and haircuts to administer; no more coughing to hear; ... and no more Vince ... no more holding his hand; no more reading prayers to him; no more showing him videos on the ipad in bed at night; no more talking to him and crying to him and singing to him, even though he hadn't spoken in years; no more having him next to me at night, somehow giving me peace at the end of a difficult day.
The usual semi-shock that seems to protect us after our spouses pass away and that gets us through the funeral, eventually lifts after a few weeks. Then it is just QUIET. Really QUIET. I realize I no longer have a daily routine, just hours and hours of QUIET. The memories begin to pour into my mind: not memories of the caregiving years, ironically, but memories of Vince when he was whole and healthy (which was mostly before we were married; he was ill for most of our 17 years together). I miss him, and I start to cry at the many triggers of memories of things we did together.
All the pre-grieving I did during the caregiving years and all the imaginings of what life would be like without him did not prepare me for the intense loneliness and lack of a purpose that I feel now. I am fortunate in having many friends to meet for lunch, a loving church community with activities for me to join, children and grandchildren, but there is still a huge hole in my heart which was occupied by the love of my life. I also mourn my lack of closure, since Vince didn't speak for many years before his death, and the communication we had in the earlier years of our marriage was not great because of the creeping brain illness. So, I am not only mourning his death, but I am also mourning the married life we never had.
I know I will heal in time, and I am functioning well, despite the spontaneous crying episodes and the strangeness of the QUIET. I trust that God has a plan for the rest of my life, and I am now trying to concentrate on recovering from the years of traumatic caregiving and loss, living at my own speed and doing what I feel like doing. I have my Former Well Spouse friends to help me along! You just never know what it's like on the other side until you arrive there—and it happens in one moment.
|For over 10 years, Terri Corcoran cared for her husband who was severely disabled mentally and physically by Fragile X Tremor Ataxia Syndrome. Before her husband became ill, she worked as a translator, editor and arts reviewer. She is co-editor of the Mainstay newsletter and chair of the Well Spouse Association Public Relations Committee. For more information visit www.wellspouse.org |
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