Ten Tips for Helping Families and Friends Cope and Come Out on Top from schizophrenia

In This Chapter

Building a team
Partnering with professionals
Educating yourself
Supporting your loved one
Taking care of yourself and the rest of your family
Remaining hopeful and giving back
Never underestimate the value of family and friends in the life of a person with schizophrenia. The support you give and the advocacy you provide can make a huge difference in the quality of your loved one’s life. In this chapter, we list ten ways that families and friends can ease the challenges of living with schizophrenia.

Select Your Team and Choose a Captain

To help someone with schizophrenia, it takes a team of experienced and caring people who are willing to work collaboratively with you and your loved one to:
Diagnose the disorder.
Plan and manage a comprehensive plan of treatment including medication, psychosocial rehabilitation, and supports.
Help the individual achieve independence and move toward recovery. (Contrary to myth, a substantial percentage of people with schizophrenia are able to lead productive lives in their communities.)
Every team needs a leader. If your loved one is showing warning signs and symptoms of schizophrenia (see Chapter 3), seeing a psychiatrist who is well versed in treating schizophrenia is crucial. That person will be able to make the diagnosis and place your loved one on an appropriate medication regimen as soon as possible.
The earlier the illness is treated, the better the odds of recovery and the less chance for the illness to result in disability.
Finding a psychiatrist who specializes in treating schizophrenia isn’t as easy as it sounds. The vast majority of psychiatrists (as well as other mental-health professionals) in any community are more likely to treat people for less chronic and/or less serious disorders. But your loved one will receive the best care if he’s treated by people who work with individuals with schizophrenia all the time.
Like other hard-to-find medical specialists, the best way to find a psychiatrist is to ask other families or professionals (including your loved one’s internist) if they can recommend someone. Your local affiliate of the National Alliance for the Mentally Ill (NAMI) — a family group providing information, advocacy and support — can put you in touch with other families who can share their experiences with you and vet any names that you have; you can find your local NAMI affiliate by going to www.nami.org/Template. cfm?Section=Your_Local_NAMI&Template=/CustomSource/ AffiliateFinder.cfm (or by going to www.nami.org, clicking “Find Support,” and clicking “State and Local NAMIs”). You also may want to contact the department of psychiatry of a local medical school for the name of an expert in your area.
A successful first visit is vitally important because it can determine whether your family member is onboard with — or alienated from — her doctor and her treatment plan. Interview a potential doctor by phone before making the first appointment, just to get a sense of whether the person will be a good match for your loved one. Sometimes, it’s just a matter of making sure the person has the right style.
You also need to find out about the public and private mental-health programs in your community that offer an array of programs and other professionals — such as case managers, social workers, psychologists, psychiatric nurses, occupational therapists, and so on — who will comprise the rest of your team.
Your local NAMI group, the local chapter of Mental Health America (go to www.nmha.org/go/searchMHA to find your local chapter), and your city/ county mental-health authority can provide you with information on mental-health programs in your community.


Understand Your Loved One’s Diagnosis and Plan of Treatment

Decades ago, some people with schizophrenia were analyzed on couches for years on end as psychoanalysts looked for the root causes of their illness. Most times, parents (especially mothers) were wrongly blamed for causing schizophrenia.
With advances in medicine and technology, physicians, scientists, and much of the general public now know that schizophrenia is a no-fault brain disorder that is a result of both genetic and environmental factors. Medication has become the mainstay for treatment — along with cognitive-behavioral, remediative, supportive, rehabilitative therapies, and self-help and psychoeducational approaches.
Families no longer have to feel ashamed or worried that they did something to cause their loved one’s illness, or that they’re somehow part of the problem. In fact, families are part of the solution, because they can provide invaluable support and practical assistance to their loved one with schizophrenia.
When you and your loved one meet with mental-health professionals, you’re consumers who have the right to ask direct questions and get clear answers. The relationship is no different than the one you have with an internist. You’d never expect to leave the doctor’s office without some explanation of what he’s treating and how. Always make it clear that you’re interested and involved in your loved one’s care and that you have valuable information to contribute.
One complication that often interferes with family involvement in treatment is the federal Health Insurance Portability and Accountability Act (HIPAA), designed to guarantee patient privacy and confidentiality. If you find a doctor who hides behind HIPAA and is unwilling to discuss the nature of your relative’s illness and its treatment with you, find another. You’re not asking for personal details about your relative, but you are owed a clear understanding of the diagnosis and course of treatment. And, of course, you can always provide information! If your loved one is willing, she can sign a release explicitly allowing direct communication between you and her doctor. (see Chapter 14 for more information about HIPAA).
Even if your relative is reluctant to allow you to participate in her treatment now, her thoughts may change over time so don’t give up!

Become the Archivist of Your Loved One’s History

Because schizophrenia is a chronic illness, recognize early on that your loved one is likely to be seen by many different mental-health professionals and receive a variety of different treatments over the course of his illness. We all know how hard it is to remember the details of what happened years or even several months ago. For better or for worse, you’re likely to forget some of your loved one’s treatments over time.
Resist the temptation to write all the information you acquire on little scraps of paper that will get left in pockets, go through the wash, and get lost over time. Buy a hardbound journal or notebook so you can document your loved one’s major symptoms, diagnoses, hospitalizations, medications (including doses, which medicines worked best and which didn’t, side effects, and adverse effects, if any), and the staff who were involved in treatment.
Like other providers, mental-health personnel come and go. Close friends and family members are generally there for the long haul, so you can serve as the historian who documents and communicates which medications or other treatments worked or didn’t work in the past, and why. You provide the continuity over time and can best explain the events that preceded hospitalizations and the approaches that helped foster recovery.
In your little journal or topic, also be sure to keep a list of the names, titles, phone numbers, and emergency contact information for your loved one’s doctors and other professionals intimately involved in her care.
Mental-health emergencies can occur any hour of the day and any day of the week. If you plan ahead and keep information at your fingertips, you’ll be able to handle things more smoothly.

Feel Free to Get a Second Opinion

Don’t be skittish about seeking out second opinions if you have any concerns about your loved one’s care, if there doesn’t seem to be any improvement over time, or if you have a nagging gut feeling telling you something isn’t right. You’d get a second opinion if you were undergoing a surgical procedure or if a medical treatment wasn’t going well; don’t feel funny about doing the same when dealing with a mental illness.
As a common courtesy, let your current doctor know you’d like a second opinion; it’s always a good idea to leave the door open in case you decide to
return to him. If the doctor is defensive about your getting another opinion, run in the other direction. Most competent professionals are happy to be able to collaborate with a colleague over a tough case (see Chapter 4).
If your loved one is part of a mental-health program and you have complaints or concerns, first speak directly to the person involved in her care before you raise the issue with a supervisor. Be open and give the individual a chance to respond. If you aren’t satisfied with the response, direct your concerns to a supervisor.
Remember: No one knows your relative better than you do.

Oversee Medication Adherence

It can be hard to understand why someone would refuse to take medication that — to your eyes — obviously helps him. There are a multitude of reasons why patients don’t adhere to prescribed regimens of psychotropic drugs. These include:
Uncomfortable side effects Complex dosing schedules
Confusion and memory problems that interfere with the ability to independently manage medications
High costs
Lack of understanding of the importance of staying on medication ‘ Denial of the illness
Medication is the key to treating schizophrenia. If your loved one isn’t stabilized with medication, she’s likely to remain out of touch with reality. To the extent that your loved one allows you to do so, become a medication enabler. Encourage her to talk to the doctor about:
Simplifying dosing schedules
Changing medications that have bothersome side effects
Finding out about insurance, patient assistance programs, and entitlement programs that can help pay for medications
Helping your loved one set up and fill a divided pill container encourages her independence in taking the medication as it’s prescribed.

Become an Expert

Receiving a diagnosis of any serious illness for the first time is life-altering. The emotional impact of being told that someone you love has schizophrenia cannot be underestimated. After you’ve had time to regain your equilibrium, you need to ramp up your knowledge and understanding of every aspect of the illness and its treatment.
You’re taking the first step in your quest for knowledge by reading this topic! Depending on your appetite or needs at the moment, read it in its entirety or in parts. Then read everything else you can and take advantage of all the resources available on the Internet, in the library, and from mental-health organizations (see the appendix). You won’t have as much expertise as some of the professionals you’ll meet (if you do, find another doctor!), but you’ll gain enough wisdom to ask tough questions that need to be asked and deserve to be answered.
Familiarize yourself with the latest evidence-based guidelines and practices, which are available on the Internet at the National Guidelines Clearinghouse
(www.guideline.gov).
Read memoirs of people who have lived with the illness so you can understand it from the perspective of those who have experienced its symptoms first-hand and of family members like yourself who have struggled and found ways to successfully cope and move forward. A few such memoirs we recommend are
The Center Cannot Hold: My Journey through Madness, by Elyn R. Saks
Crazy: A Father’s Search through America’s Mental Health Madness, by Pete Earley
The Day the Voices Stopped: A Memoir of Madness and Hope, by Ken
Steele and Claire Berman
Divided Minds: Twin Sisters and Their Journey through Schizophrenia, by Pamela Spiro Wagner and Carolyn S. Spiro, MD
Hope’s Boy: A Memoir, by Andrew Bridge
Imagining Robert: My Brother, Madness, and Survival: A Memoir, by
Jay Neugeboren
Mad House: Growing Up in the Shadows of Mentally Ill Siblings, by
Clea Simon
The Outsider: A Journey into My Father’s Struggle with Madness, by
Nathaniel Lachenmeyer
The Quiet Room: A Journey out of the Torment of Madness, by Lori Schiller and Amanda Bennett
Enroll in a family psychoeducation course — free NAMI Family-to-Family courses, led by trained volunteers, are available in many communities. Attend lectures and courses offered by local organizations and educational institutions.
Don’t Neglect Yourself and the Rest of Your Family
Friends and family can easily get lost in the day-to-day responsibilities entailed in helping their loved one with schizophrenia. Don’t neglect yourself and the rest of your family. The surest recipe for burnout is to focus only on the person with schizophrenia to the exclusion of everyone else.

Make time in your day for:

Sitting down for regular meals with your family ‘ Getting enough exercise Spending time with your friends Relaxing

Continuing to do things you like to do

If you’re in a relationship, don’t forget your partner. Make time to do things together like going to the movies or visiting with friends. Often, relationships between husbands and wives suffer when a child has a severe mental illness because of conflicts over caregiving and the lack of quality time spent together as a couple. Recognize that you can be of tremendous support to one another.
If you have children in your household, don’t neglect them or leave them feeling unappreciated. It may be hard for them to understand why so much time is being devoted to one member of the family. But if you make an effort to focus on each child’s interests and activities, your kids will be more understanding when you have to spend some time helping your loved one with schizophrenia.
Reach out to other families and support groups. They can be invaluable in helping you realize that you aren’t alone and that other people are struggling with similar issues in their families and making positive headway. Just as important, other families will truly understand your feelings and be able to share the wealth of knowledge, experience, and resources they’ve learned about. Need a doctor who has experience with Clozapine? Someone in the
group is likely to know. Need a good CBT therapist? Ask the group for a list of three. Family members who have been there will be able to provide practical advice on how to react if your relative won’t leave the house or denies that she’s sick.

Familiarize Yourself with the Signs of Relapse

Not all the time, but often, relapse can be prevented. When your loved one initially became sick, what were his symptoms? When he had a recurrence, did he have the same sleep disturbance? Help your loved one spot problems on his own and take the right steps to get back on track. Talk calmly and openly about his symptoms so he feels comfortable doing the same.
Pride yourself on becoming a keen, but unobtrusive, observer so you can recognize the subtle signs that suggest the illness is recurring (particularly if your loved one is unable to do so on her own). Prompt attention often can help avert relapse and hospitalization.
Families find that the signs of relapse are the same, or very similar, for their loved one each time it occurs. These signs may include withdrawing from people, changes in eating or sleeping habits, severe mood changes, or changes in self-care and hygiene habits.
Even with good intentions, close oversight, and rapid treatment intervention, you may be unable to prevent your loved one from getting sick again or needing to be hospitalized. If that occurs, change your focus to how you can help him recover — and don’t blame yourself!

Remain Ever Hopeful — With Good Reason

For a multitude of reasons, this is a time of great optimism in the field of mental health and mental illness. With recent research breakthroughs in genetics and neurobiology, there’s never been a more hopeful time for people with schizophrenia and their families as we learn more about prevention, treatment, and rehabilitation.
In March 2008, the U.S. House of Representatives and the U.S. Senate approved mental-health parity bills that would help narrow the gap in insurance benefits between health and mental-health coverage and make treatment more affordable to many who have been left to fend for themselves. The proliferation of peer and family advocacy groups has gone a long way in educating the public and raising awareness of schizophrenia as a brain disorder that, although still not curable, is very treatable and manageable.
Families must maintain their sense of hope and optimism and convey it to their relatives. Your loved one may not live the same life you or she had expected, but she can live a “life well-lived,” one with a sense of purpose and dignity. You can take pride in her accomplishments and in your role in providing support. Try to minimize criticism and conflict; instead compliment success and find areas of agreement. Allow her to take some risks and make decisions on her own.
Many families and friends of people with schizophrenia find that the close reciprocal relationships they develop with their loved ones are extremely rewarding, as opposed to burdensome. They appreciate the opportunity to provide friendship and concrete assistance to help their loved ones overcome the loneliness and social isolation so often associated with the illness. In return, they find that their loved ones are there for them when they need them, too. When one young man’s father became very ill, it was the son with schizophrenia who drove and accompanied his mother to the hospital each day to be at his father’s bedside.
And as difficult as it may be when you’re in the thick of it, try to maintain a sense of perspective. As bad as things seem, it’s likely that today’s crisis will eventually pass and become a fading memory (although, of course, you’ll have documented it in your journal — see “Become the Archivist of Your Loved One’s History,” earlier in this chapter).

Give Back

Sometimes it’s hard to ever imagine having the time to give back to others or having the expertise to become a trainer rather than a disciple. Your journey as a caregiver will create new opportunities for you to contribute not only to your loved one, but to your community and to society. Many family members and friends of people with schizophrenia find rewarding roles as volunteers, case managers, and group facilitators working with individuals with serious mental illness.
When things are more stable with your loved one and you’re up to the task, become an advocate for enhanced mental-health literacy in every segment of your community. As an individual or as part of a group, go out to schools, libraries, civic groups, and businesses to teach people about mental illness and dispel the myths.
Tell everyone you know about NAMI and spread the word that severe mental illnesses are no-fault neurobiological illnesses of the brain. Distribute NAMI brochures so they are available at every office, clinic, hospital, and library. Even many professionals aren’t aware of NAMI.
Early recognition, diagnosis, and treatment can minimize disability and lessen family burden. People need to understand these disorders before they hit home. Engage legislators, public officials, and the media in a dialogue. The more patients and their families are willing to speak out and be candid about mental illness, the easier it will be for everyone to understand that schizophrenia is an illness that can strike any family.
Join the fight for mental-health parity and encourage support for psychiatric research at state and national levels. Participate as a healthy volunteer in a research project or encourage others to participate in clinical trials of new treatments. Most families and professionals recognize that research is the best hope for the future.

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