Episode 25
Hope at Home
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HOPE on the Other Side Episode 25 Program Notes
HOPE: On the Other Side of the Door is a podcast designed to help the parents, relatives and the caregivers of a loved one who living with schizophrenia or hearing voices. Today’s episode is a preview of the 6 week video webinar series entitled “Hope at Home.”
In this Webinar series of approximately ½ hour long video presentations I will be presenting the wisdom of the podcast guests along with my own wisdom derived from over 20 years in the locked hospital working with folks living with schizophrenia, acute and chronic psychosis and working with their families and caregivers.
You, as the mother, father, sister, brother, other relative or non-relative caregiver of a person living with schizophrenia or related conditions will be able to move toward a more balanced, healthful, meaningful and respectful life. If you and the person with schizophrenia have been living with fears, troubling uncertainties, and disturbing experiences with false perceptions and false beliefs, misunderstandings, disturbing behaviors, and strife at home then this video series is for you.
The six videos will address several areas to look at, to examine, areas in which to grow. The talking or lecture part will focus on specific area discussed in the podcasts, and distill the key items that you may wish to embody in your home life. There will also be homework to help you and your loved one develop better habits and styles of living together. The goal will be to move to the new normal to create and to restore a caring family life.
The first section addresses compassionate communication style. With this condition or experience often diagnosed as schizophrenia, there are some general changes in a person’s ability and capacity to talk to others. Each person is unique and a specific case. Some neurologist and psychiatrist brain researchers have found changes in a person’s ability to filter sensations and experiences. This includes possible changes in all five senses, hearing, vision, touch, and more rarely taste and smell. There is a thing called “gating” in which a person filters out things unrelated to the conversation or situation, such as the sound of the air conditioner unit, the sound of a passing car, or the conversation in the next room. When the so-called symptoms are high, then the “voices” or auditory hallucinations may cause a distraction for example. Memory is a part of communication, too, such as remembering the things talked about yesterday. Memory is based upon the concentration and attention. It may be that the barrage of unfiltered sensations may cause problems with attention, and therefore with memory. This is not a primary memory problem, but one of attention. Part of the solution is to use clear and direct words, make good eye contact, and use a tone of voice and volume of voice that matches what you are talking about. Also, try to avoid overly complex sentences. Remember that any conversation is a two way street.
In the First Video there will be exercises which focus on some of the specific homework related to the daily practice of bringing awareness to the style you use to talk to your adult-child or relative living with schizophrenia. Next the recommended exercises will give you the opportunity to practice some of the solutions just mentioned and keep a little notebook, a journal or a diary for the weeks of this video series. This will help you to move toward a family life which is more balanced, healthful, meaningful and respectful for all involved.
The second section is about mindset and attitude, with the goal of building bridges within the family. This may be to repair and to re-build bridges in the family. After practicing communication styles, then the next step is to look at your attitudes and beliefs about the condition called schizophrenia, mental illness, and towards a person who reports living in the world with unusual and sometimes bizarre sensations, ideas and experiences. The solution here is to meet the loved one where he or she is at. Take an accepting attitude, be humble in your efforts to understand the person. Exercises here will focus on the skill of empathizing emotionally with the person’s experiences and emotional reactions to his or her ideas (which you may believe or know to be false ideas) and acknowledge those emotions and ideas. The delicate skill here is to acknowledge and accept the emotional reactions, the ideas and experiences, yet avoid validating the overtly false ideas or conclusions. One exercise is to notice how often you have the urges to “correct” the false beliefs, and to educate the person about the error of their thoughts. It is important to avoid judgmental, or condescending attitudes. This is a skill and will likely involved practice to get used to acting this way with your loved one who is living with schizophrenia. Perfection is not the goal here, but rather moving toward that more balanced, healthful, meaningful and respectful way of being.
The third video is about acceptance. Being in the “now.” The journey toward acceptance may begin with troubles present today. These may include fears, strife, strained relationships, anger, disappointment, guilt and shame. There may be a whole host of unexpected and undesirable emotional reactions. Old expectations put upon the young adult or family member living with schizophrenia will be examined, looked at and re-evaluated, re-considered. Grief and mourning for loss can be a huge part of the family life where there is a new diagnosis of schizophrenia, or the onset of long lasting profound changes in the inner mental life of a person. What are these losses? Well for the person living with schizophrenia or similar big changes in experiences and thinking ability there may be the dawning idea that they are different that other people, that they are acting at a level even different from what they were doing before. They may realize that what they had planned for their life seems to be impossible now. This represents a loss of a future vision or career goal. For the parents there may be the recognition that there young adult child in college or in a new marriage and household or in a new job just out of high school, is for the moment with the acute symptoms not able to do the school work, the house work nor the job skill. This is also a potential loss of the parent’s expectations of the future for their young adult child. These ideas and circumstances are seen as true losses. The normal human reaction for both involved in grief. Exercises here will involve writing to become aware of one’s ideas and expectations and emotional reactions. Other exercises will next be to identify possible outside support groups available.
The fourth section looks at the quality of “family time” at meals, with the aim to move toward a physically and emotionally nourishing experience, aiming toward joy at the dinner table. Attitude is everything, we tend to act from our sense of being, our inside thoughts, emotions, and attitudes. As the healthy caregivers for someone living with schizophrenia, it is important that we work at our own inner thoughts and feelings. Be gentle with yourself in the above grief process so that you can be supportive of your family member who is likely going through some sense of loss, too. And be gentle with yourself as you change your attitudes and grow in acceptance of the loved one in the “new normal.” As in the rather complex HOPE podcast episode #01, Todd Logan talks about nourishment in a variety of dimensions. Nourishment is not only food on the physical level, the quality of human relatedness at the emotional level, it is also at the spiritual level. Some humanists define “spiritual” as the combination of purpose, values and meaning. Many thinkers say that is about the journey and not so much about the destination, so living in the now is a great practice at mealtimes. Food is a great and also controversial topic what with so many diet experts out there promoting a bewildering variety of diets. There are a few associations and foods which seem to hold up to scientific scrutiny. Some of these are associated findings in large populations over time. The fancy words here is epidemiological associations and relative risk. A meat free and a very low meat diet is associated with longer lifespan and a reduction in the percentage of chronic illnesses, such as diabetes. There are strong theories about inflammation and brain health, so adding anti-oxidants makes sense, too. Gut health and mood seems to be an emerging scientifically valid thing as well. Mealtime family rituals and practices are for some pressured by time and over-commitments an impossible luxury. Decide what is important in your family life. Personal relations and personal support from trusted people is extremely valuable and useful to a person living with schizophrenia. Now we are mostly using the newer second generation anti-psychotic medications, the dopamine blocking meds used by modern psychiatry to help reduce and mitigate the positive symptoms of psychosis. It is important to note that very common side effects include weight gain and a change in metabolism that pushes a person’s body toward the so called “metabolic syndrome” a pre-diabetes state, and then onward to frank diabetes. There is also a drive toward weight gain. So getting into an ADA type diet could be really helpful, that is the American Diabetic Association diet. Spending time together at meals strengthens the family ties and trust at a personal level. Exercise here relate directly to meal preparation, food choices, and table time during meals.
Next, the fifth section addressed a different aspect of family time. This is about exercise and spending time for physical activities together. This function will help develop respect among the family members. It will help to restore dignity among the family members and between caregivers and the person who is living with schizophrenia. Unhappiness may be associated with the new onset of this schizophrenia condition. There is a spectrum of mood disorders that may go along with this diagnosis, when the mood disturbance happens within the timeframe of active psychosis then the doctor may correctly call the condition schizoaffective disorder. In the techniques for healthy mood states, regular physical exercise is very important. With full on major depression the person may have the drive nor the initiative to do any exercise of much of anything. The dopamine blocking anti-psychotic medications may reduce the capacity to experience joy and pleasure in some people. So sad and depressed – like moods can be seen in some folks living with schizophrenia. One part of solution here is exercise. Family walks in the neighborhood, or at a nearby park, a trip to the zoo, or lakeside or beach. Getting out in nature helps restore a sense of belonging in the world for most anyone. Walking for a 20 minute time is highly recommended, a mildly brisk pace is good, to get the heart rate up a little bit forms a simple and easily accessible form of aerobic exercise. Walks with some or all of the family not only helps build that rapport and trust we have been talking about, but also helps the mood, the metabolism, and fights against the pressure to gain weight from the medications. Homework here will focus on getting out of the house together at least once during the week. Also, exploring other forms of exercise available on educational videos will be another bit of homework. In many cities yoga, particularly the Hatha Yoga asana exercises involving physical postures and breath are quite popular and readily available.
Lastly the sixth section is first about education and experiences for both family members, caregivers, and for the person who is living with a diagnosis of schizophrenia. The aim of this section if to help develop and grow into that balanced, healthful, meaningful and then ultimately respectful life both for the family / caregivers and the loved-one. Having spent the prior five weeks looking at the state of the family members, the caregivers and the person living with unusual experiences & thoughts can be exhausting. This can be kind of like the “fearless moral inventory” done in the 12-step groups such as Alcoholics Anonymous. The journey here is to go from states of blame, shame, disappointment, and possible places of being “angry at God” for the disorder we call schizophrenia hitting so close to home to a better place. What is that better place? It is living in the now, it is being educated about the myths and the realities of schizophrenia. Please see my pdf document available at the DrKenCampos dot com website about the condition and about what we call psychosis. The quick re-cap is that schizophrenia is defined by what it is not by the physician. This seems to be completely opposite of the way general physical medicine works. That’s because the changes in brain chemistry and brain neurons are subtle and not readily tested in the modern medical clinic nor modern hospital. Research university centers have seen some real changes in brain structure and activity among those diagnosed with schizophrenia. Please be aware that like so many things in both medicine and in the world at large there is a spectrum of the condition from mild, moderate to severe. There is a spectrum in the functional disability of folks, too. So, most may be able to recover enough to grow into meaningful work, jobs, or artistic expressions, and develop personal friendships and relationships in the community.
Homework here will focus on starting healthful hobbies, visiting some social clubs or discovering computer based “Meet Up” gatherings and social clubs. For some there is even the possibility of looking into alternative work & employment, something less stressful than the typical 40 hour work week type job. This depends upon the employer, too. There are even “mental health club houses” in some cities. In Chicago and New York two such groups started in the middle 1900’s, namely Recovery Incorporated, and the Fountainhouse project. In many major cities there is a local chapter of NAMI, which was spoken of in HOPE podcast episode #09 with Suzette Southfox.
This home study and embodiment video series be available at the www.DrKenCampos.com website for a reasonable fee. The 6 videos are meant to watch and study sequentially. It is the aim of the Schizophrenia Care Project and its Foundation to promote and create a clearing for the balanced, healthful, meaningful and respectful lives for those living with schizophrenia and their caregivers.
Links Mentioned in Episode 24
See free pdf article on psychosis at the website:
www.DrKenCampos.com
NAMI list of 5 common myths about suicide:
https://www.nami.org/Blogs/NAMI-Blog/September-2018/5-Common-Myths-About-Suicide-Debunked
NIMH National Institute of Mental Health on suicide :
https://www.nimh.nih.gov/health/topics/suicide-prevention/index.shtml
Schizophrenia Care Project Foundation
www.SchizophreniaCareProject.org
Dr Ken’s support and accountability Face Book Group to assist mom/dad/caregivers grow into and embody the “new normal” attitudes and behaviors while living with and supporting their loved one living with schizophrenia, an open public group
https://www.facebook.com/SchizophreniaCareProject/?eid=ARAmD-RtedB0eorhDHFXFeasvKTMMQm8v20eG8Ib-Z0Rppi8RiApN8-GZ5xUVYEBzt_sI0EEi21Zg7di
The Foundation and Project website:
www.SchizophreniaCareProject.org
and open public group:
3-Project
https://www.facebook.com/groups/140778123234472/
