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Fair Winds and Squalls: The Health Impact of Family Legacies Across the Lifespan

Posted By Alexandra E. Schmidt, D. Scott Sibley, & Caroline Dorman , Tuesday, November 29, 2016

 

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.

 

Beneficial 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.

 

We must 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.

 

References

Burgess, E. W. (1931). Family tradition and personality. In K. Young (Ed.), Social Attitudes (pp. 188-207). New York, NY: Henry Holt.

Boszormenyi-Nagy, I., & Krasner, B. R. (1986). Between give and take: A clinical guide to contextual therapy. New York, NY: Brunner/Mazel.


 


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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The Health Paradox Within Marriage

Posted By Jeremy Yorgason, Thursday, November 17, 2016

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 couplesThere 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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Being a BFEF Mentor: Pathway To Fruitful, Ongoing Collaborations

Posted By Valerie Ross, Tuesday, November 8, 2016

 

"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 kathryn.fraser@halifax.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 project.

 

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 facilitator.

 

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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Creating Space: LGBT Patients and Families

Posted By Jess Goodman, Erin Sesemann, Wednesday, October 5, 2016

This post is a nod to the upcoming, opening plenary address at the 2016 CFHA Conference in Charlotte, NC. 

 

 

The 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…


Meet Jenna:

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.

 

This 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.

 

But 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?


At one 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

  • Gently 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 your family”?
  • Provide 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
  • Provide 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
  • Based 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 needed).
  • 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 families ongoing

 

LGBT 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

  • Display posters or flyers in your clinics that include LGBTQ youth, same-sex couples, and symbols1
  • Train all staff on LGBT health and competencies1
  • Offer single stall, gender- neutral bathrooms1
  • Include gender identity and sexual orientation in non-discrimination policies1
  • Allow patients to identify their sexual orientation and gender identity, as well as preferred name and pronouns on appropriate forms1
  • Develop office policy in compliance with local laws regarding confidentiality for un-emancipated minors1
  • Assess health history as a conversation, not a check list1
  • Treat sensitive topics, such as sex and substance use, as routine questions for all patients, using non-judgmental tone and body language1
  • With youth, use the mnemonic H.E.A.D.S.2 for taking social and behavioral history
  • Normalize questions about gender and sexuality, and don't make assumptions
    • Use questions and statements like:
    • I 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
    • Are you attracted to boys/men, girls/women, or both? 1
    • How do you feel about your attractions?1
    • What words do you use to describe your sexual identity?1
    • What gender do you consider yourself to be regardless of what body parts you may have?1
    • How do you feel about your gender? 1

 

LGBT 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 identification

  • Screen for support needs in a respectful way by inquiring about the presence and types of social supports of patients
  • Create 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 friends/family
  • Connect patients with LGBT community resources and trained behavioral health specialists in LGBT care, as needed
  • Connect patients with supportive online/social media LGBT resources
  • Use validation and normalization statements to increase LGBT patients’ communion with others from the broader LGBT community and local healthcare center
  • Utilize Motivational Interviewing3 techniques to assess and promote different ways patients’ may exercise their agency within their context. Examples may include:
    • Use 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 healthcare center

     

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.)

  • Be respectfully curious about the reason they have stopped taking their medication
  • Provide validation for patients’ experiences without expressing agreement
  • Assess for possible additional personal or cultural biases related to medications that may inhibit their willingness to adhere to treatment (i.e., medication = disease, illness)
  • Educate 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

 

 

Think 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?

 

If you 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?

 

Regardless 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 patients’ health.

 

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 Nursing,114(6), 24-34.


Additional 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 University.

- 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.

 

References

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 PEDIATRICS-MONTVALE-,21(1), 64-92.

3Miller, W. R., & Rollnick, S. (2012). Motivational interviewing: Helping people change. New 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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Exploring the Ethical Challenges in Working with Diverse Couples in Primary Care

Posted By Tina Schermer Sellers, Wednesday, September 28, 2016

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 this afternoon!”


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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Naloxone: Prescribing Like a Life Depends on It

Posted By Ryan Jackman, Tuesday, September 20, 2016

 

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 cold.


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

 

In 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 now.”6

 

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 services.

 

 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:

o 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.

o 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 relapse.

o 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:

· Prescribetoprevent.org

· SAMHSA Opioid Overdose Toolkit: https://store.samhsa.gov/shin/content/SMA13-4742/Overdose_Toolkit_2014_Jan.pdf

 

References

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

2. Rudd, R., 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- 2014.pdf.

4. 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/

7. 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.

8. 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.

9. 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.

10. Sporer, K., Kral, A. (2007). Prescription naloxone: A novel approach to heroin overdose prevention. Annals of Emergency Medicine, 49(2), 172-177.

11. 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

12. Dowell, D., Haegerich, TM., Chou R. (2016). CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016. MMWR Recomm Rep; 65:1–49

13. Pade, P., 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 little girls.

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American Indian Resiliency In the Face of Suicide

Posted By Laurelle Myhra, Thursday, September 15, 2016


 

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., 2011).

 

Still 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 (IHS, 2016).

 

Unfortunately, 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 (SAMHSA) 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.

 

George 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.

 

Word of 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.

 

The loss 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 AI/AN children.

 

Mill City Kids is one of the initiatives selected by Silos to Circles 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. 

References

Campbell, 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.

Centers 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

Walters, 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 Race,8(1), 179–189.

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It Took A Long Time, But She Did It Her Way

Posted By David Ziobro, Tuesday, August 23, 2016

 

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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Lonnie Ali: Our Caregiving Champ

Posted By Barry J. Jacobs, Thursday, July 21, 2016

 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.


Love—and like―matter:

The tale of their slowly blooming love has been oft recounted, recently by the New York TimesPeople 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.



Barry J. Jacobs, Psy.D. is a clinical psychologist, family therapist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the co-author (with his wife, Julia L. Mayer, Psy.D.) of AARP Meditations for Caregivers—Practical, Emotional and Spiritual Support for You and Your Family (Da Capo).

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Crossing Over: The View from the Other Side

Posted By Terri Corcoran, Thursday, July 7, 2016

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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