Siblings: My Brother or Sister has Schizophrenia - What About Me?

06/09/21 • 58 min

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Schizophrenia: Three Moms in the Trenches

Send a Text to the Moms - please include your contact info if you want a response. thanks!

In this episode, we talk with our own daughters about the lived experience of the sibling when schizophrenia hits the family. The emotional toll on this group of family members is often swept aside in the wake of the crises involved in SMI. We give them a chance to speak.

Guests: Our Daughters - Angela, Lucy and Ali

PAST:

What was it like for you growing up, as your sibling’s illness began?
When did you start suspecting something was wrong?
Did you second guess any things your parents were doing for him?
Did you resent your brother for needing your parent(s) so much? Did you resent your parent(s)? And how did you work through that? (Kathy Day asked)

PRESENT:

What is hardest for you about your brother's illness?
How do your friends feel about him? How do they best support you?
Has your life changed in any positive ways because of your brother?
Do you see yourself as a mental health advocate? If so, how?
What is it like now? Where are you on the “graph of emotions?
Do you feel cheated that your mom spends more time with sick sibling? (Cindy Grossman asked - fb)
Do you fear that you could also become schizophrenic at any given time? Or your kids? (Kathy Burchett, fb)
Do you feel guilty that he got sick instead of you?? (Laura Pogliano)

FUTURE:

1. What are your major worries about when we parents aren't around to be front-line advocates for your brother?

2. What do you see yourself being able to do and what will you need help with?

3. What help do you hope will be in place?

Final question: What do you most want other relative groups - particularly parents - to know about your experience as a sibling of someone with SZ? How can we best be of help to you?

Links for mentions:

NAMI Family-to-Family

Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guests: Our Daughters - Angela, Lucy and Ali

PAST:

What was it like for you growing up, as your sibling’s illness began?
When did you start suspecting something was wrong?
Did you second guess any things your parents were doing for him?
Did you resent your brother for needing your parent(s) so much? Did you resent your parent(s)? And how did you work through that? (Kathy Day asked)

PRESENT:

What is hardest for you about your brother's illness?
How do your friends feel about him? How do they best support you?
Has your life changed in any positive ways because of your brother?
Do you see yourself as a mental health advocate? If so, how?
What is it like now? Where are you on the “graph of emotions?
Do you feel cheated that your mom spends more time with sick sibling? (Cindy Grossman asked - fb)
Do you fear that you could also become schizophrenic at any given time? Or your kids? (Kathy Burchett, fb)
Do you feel guilty that he got sick instead of you?? (Laura Pogliano)

FUTURE:

1. What are your major worries about when we parents aren't around to be front-line advocates for your brother?

2. What do you see yourself being able to do and what will you need help with?

3. What help do you hope will be in place?

Final question: What do you most want other relative groups - particularly parents - to know about your experience as a sibling of someone with SZ? How can we best be of help to you?

Links for mentions:

NAMI Family-to-Family

Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Previous Episode

Rethinking Clozapine: Should it be the First Resort to Treat Schizophrenia? - with Dr. Robert Laitman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

In this episode, we talk meds with an MD. Specifically: Clozapine. Many of us are told that it’s the “last resort” medication, “when nothing else works”. Is that really true?

Guest : Robert S Laitman, MD, is an internal medicine physician at Bronx Westchester Medical Group in New York. Over the last 10 years, he has developed a practice taking care of people with psychotic disorders after his son, Daniel, received a diagnosis of schizophrenia in 2006.

Dr Laitman, his family, and his colleague authored the book, "Clozapine: Meaningful Recovery from Schizophrenia."

We talk about:

1. Why do you say clozapine should be the drug used first? Why isn’t it?

2. Why is clozapine used more in other countries compared to the United States? Why isn’t it marketed more here?

3. Why does clozapine take so long to fully kick in (a year in some cases) compared to other antipsychotics? Your son continues to improve, even after being on it for 9 years. In what ways does he improve?

4. How does clozapine can benefit patients, besides addressing the classic symptoms of schizophrenia, e.g., suicidality, illicit drug use, smoking.

5. Mitigating predictable side effects - e.g., weight gain, salivation, sedation. (Med therapy management and how it works)

6. We need Engagement, Access, Treatment, Support

7. What can families do, to advocate for their loved ones to get best treatment? What should practitioners know, and do? What can families do? Educate yourself about clozapine and talk with your loved one’s psychiatrist.

Links and explanations:

TeamDanielRunningForRecovery.org

Clozapine facebook page

Team Daniel facebook page

SZ 3 Moms Facebook page

Get on the mailing list:

[email protected]

Dr. Laitman’s Book:

https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X

New finger-prick Point-of-service test

Psychiatrists were once referred to as Alienists - Psych. Today article

Deborah Levy was director of the Psychology Research Laboratory at McLean Hospital and an associate professor of psychology in the Department of Psychiatry at Harvard Medical School,

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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Next Episode

Schizophrenia in Entertainment - Film, TV, Novels: Accurate or Insulting?

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Catch-up chat: re future episodes; people who call us “overbearing moms” and blame the family; patients’ “rights” vs. family caring;

Themes: What does entertainment media get wrong?

Lack of named diagnosis - UnReal, Girl Interrupted
Inaccurate/unresearched portrayal of SZ - Words on Bathroom Walls
Madness Always Linked to Genius - The Soloist, Beautiful Mind, Shine, Proof
Mistrusting Medication and Treatment - Beautiful Mind
Lack of Diversity - often male/white - no cultural differences in attitudes/traditions represented
Tendency Toward Violence - even serial killers - The Fisher King, Donnie Darko, The Joker
Hallucinations as mainly visual/romanticized - Beautiful Mind, Words on Bathroom Walls
Long/Lifetime Hospital stays - Love Actually
Blaming Family Dynamics/ Bad childhood as only “cause”
Treatable with Therapy alone - meds are bad - One Flew Over Cuckoo’s Nest
Romantic Love/ A Good Job can “cure” you - Words on Bathroom Walls
SZ Films “based on a true story” whitewashed for entertainment value -
Those with SZ are “possessed” by supernatural
Too Much Hope? Recovery? - Benny & Joon

Some things they get right:

Employment can be an important element of recovery - The Joker
Medication as often vital part of Treatment - The Joker, Silver Linings Playbook
The mental health system needs so much work - I Know This Much is True, The Joker
Family Emotional Reactions/Burdens - Silver Lining Playbook, I Know This Much Is True,
Other movies mentioned: The Snake Pit

Links:

https://thecinemaholic.com/schizophrenia-movies/

Next week’s guest:

Michael Mackniak, JD , Guardian Ad-Litem Services, Melissa’s Project

Helping Families Control the Chaos of Mental Illness at Home and at Work.

Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman