Friday, October 26, 2007

In Memorium

My mother, Marjorie L. Schwartz, was born on March 19, 1922 and died on October 26, 2007. There has never been a daughter who loved her mother more!

Next week, I will be writing a memorial service for my mother. I will resume posting on Tuesday, November 6th. To everyone who has posted comments about my mother or offered words of solace and support, my deepest thanks.

Thursday, October 25, 2007

Making God-Like Decisions

Yesterday was very difficult. Because Dr. Smith (the incompetent doctor) didn't respond to five telephone calls over a five hour period, we had to delay hospice for an extra day. Talk about a selfish "a**hole." Then the hospice representative was three hours late; it was a true emergency and she was very apologetic.

She was also very competent and empathetic. When she called to get directions, she could hear mother moaning in the background. Upon her arrival, she immediately ordered morphine for the pain, and within three hours had a nurse at my mother's side to administer it.

Still, it was a terribly long and painful day. On my way to Casa del Mar I picked up a song book at the guitar shop of folk songs from my youth that my mother loves. To calm my mother down, I played the autoharp for three hours or so. I had read that even when a person is totally out of it, they can still hear. I was sure that my mother heard the love in my voice, and it was very healing for me to sing as well.

In between I cradled my mother's head in my arms, and kissed her. She didn't respond, but it seemed to calm her down. However, sometimes she opened her eyes and when I looked into them, she seemed so frightened to me...or maybe it was the pain.

I sure hope this decision for hospice is the right one. I can't imagine mama would want to continue to live this way, but I also don't believe that we should make "God-like" decisions.

I know what I want for myself, and my husband and I have decided to make our decisions now and write them all down. But my mother (and my father) didn't want to discuss death and dying so it's all so very difficult.

Wednesday, October 24, 2007

Putting Mama on Hospice

It's mama's time to die. It's not because of the terrible medical care she's received. It's just that she cannot rally back one more time. I met with the hospice people today. I explained that they didn't need to "sell" me on the concept of hospice. Before I contacted them, I had done everything possible to see if mama could survive--with a quality of life that was worth living--and she can't.

It's time to let her go so she can join my father who's been waiting for her in heaven for 18 years and 8 months. Their marriage was a match made in heaven, and that's where she'll join him--for eternity.

For the rest of this week--in tribute to my mother, Marjorie L. Schwartz--I will share some of her poems with you and an essay and a few poems I've written to her. This afternoon, I wrote the short poem below while I sat on a bench on the bluffs overlooking the beach, near Casa del Mar, where my mother lives. Writing it made me cry because I knew my mother would get a kick out of it.

To Mama
Oh mama, I love you so!
I'm so sorry to see you go.
I know it's time to say goodbye
but I'll love you dearly until I die.

Tuesday, October 23, 2007

Writing to Heal

Although my blog is a form of writing to heal, I also write letters to people that I sometimes don't send. This is one of those letters I can't send for obvious reasons, but it makes me feel better to write it.

Just to give you a bit of the back story, I had another unbelievably bad experience today with my mother's doctor (a new one who replaced the two awful doctors that preceded him). I've come to the conclusion that there is something so wrong with the medical profession that unless we speak out, we'll only have ourselves to blame when our time comes around.

Dear Doctor Smith, (a pseudonym)
I hope that no one treats your mother the way you treated mine today. When we arrived at your office--after Dr. Jones (the orthopedic surgeon called you)--and we were waiting in the reception area, I know that you saw my mother and me and chose not to come out. How dare you!

Three weeks ago when you agreed to be my mother's doctor, and you told me that the care she had recently been given was terrible and you would take her on as a patient, what did that mean to you? Before she left the hospital, I specifically asked you to help develop a wellness plan because of the problem of dehydration, you said you'd handle it. But you didn't.

So today, after I had been on a vacation with my family, and I saw my mother and realized that once again, she was dehydrated, I was sure you'd take care of this. That's why I had the orthopedic surgeon call you.

We had a scheduled appointment with him to look at her broken knee, and when he said, "Is she okay?" I said, "No, she's dehydrated once again. Could you please call Dr. Smith?"

The reason I decided to handle it today is because: 1) My mother was obviously in bad shape; and 2) We were in your building. And while no one seems to care about this, it's been almost impossible to bring my mother to your building because I can't get her into my car with her leg brace. And the ambulance ride is very difficult for her because of her leg.

So we scheduled a Dial-A-Ride service, which we had to book a week in advance. And mother didn't fit into the first Dial-A-Ride van because of the brace on her leg and the way her legs were extended in the wheel chair. So they had to send a larger bus to pick us up. By the time we arrived at the surgeon's office, we were already tired.

However, after he saw her and called your nurse who said that we could come to your office, I just assumed you'd fit us in because my mother was clearly ill. But no...you peaked at us behind the counter and immediately disappeared. Why was that?

How can you care so little for a patient that she could be sick--and sitting in your office--and you chose to hide? Was it because we didn't have an appointment and you were offended by the lack of propriety? Or was it because she looked so sick? Or was it because she's old and you didn't know her when she was young, so you're marginalizing her? Or was it because your nurse suggested I take her to the ER and I refused.

Do you have any idea how exhausting it is for an 85-year-old woman to go in and out of the ER? Last time (three weeks ago) we were in the ER for eight hours before they took mother to her room. I couldn't put her through that again. And I was afraid that once she checked into the hospital, she would die.

At best, it's a difficult experience. People like mom who have Dementia get disoriented. And she's just now recovering from her last stay. By the way, perhaps you weren't aware--because no one at the hospital noticed--when my mother returned to her assisted living facility, she had two bedsores, which is a serious problem for someone with diabetes.

I could go on but suffice it to say that your treatment of my mother today defies description. I was so angry and disappointed that if I felt I had any other options, I would try and get my mother another doctor. But I don't think it will matter.

I now believe that most doctors hate old people as much as they hate the mentally ill. Surely, my mother has received as terrible medical care as I have. I'm not sure what to do about all this. I guess I may just have to write a book.

What I find so ironic is that you were appalled when I told you that I detested my mother's last doctor because she stood there and did nothing when my mother slid out of her wheel chair while she was being examined. Today, your behavior was equally appalling.

All of you who have taken the Hippocratic Oath and treat patients this way should be mightily ashamed. And you should be punished as well, but that's between you and God.

Today, I guess I'm really grateful that I'm not you, because when your time comes at the Pearly Gates, you're going to have a lot of explaining to do. When God asks you about how you treated my mother, I can't imagine what you'll say. But I'm sure glad I'm not in your shoes.

Sincerely,

Susan Bernard

Monday, October 22, 2007

Transition (Part 2)

I believe that sometimes we find books or people because we need them. Whether or not we recognize the need and embrace it is up to us. As my son will be going through his own transition to college, I began thinking about how poorly I have dealt with the transitions in my own life. Wishing to be a better role model and wanting to give him better advice (should he seek it), I have begun reading books on transition.

While I have already read Transitions by William Bridges, Ph.D., and it has had a huge impact, I decided to read Dr. Bridges' memoir, The Way of Transition: Embracing Life's Most Difficult Moments, which is having an even bigger impact. The following quote is from this book.

"Change can happen at any time, but transition comes along when one chapter of your life is over and another is waiting in the wings to make its entrance...You simply cannot imagine a new chapter, but the fact that letting go of one chapter in your life initiates the transition that concludes by beginning another chapter.

"Transition does not require that you reject or deny the importance of your old life, just that you let go of it. Far from rejecting it, you are likely to do better with the ending if you honor the old life for what it did for you. It got you this far. It brought you everything you have. But now --although it may be some time before you are actually comfortable doing so--it is time for you to let go of it. Your old life is over. No matter how much you would like to continue it, rescue it, or fix it, it's time to let it go."

Friday, October 19, 2007

Bipolar Mother

We're at my son's Student Orientation at Cal (he's starting college in January) and yesterday wasn't my best day. Yet, I'm proud of myself because despite my feelings--I was somewhat anxious and worried (UC Berkeley is where I experienced my first depressive episode almost 40 years ago)--I kept them to myself.

As a "bipolar mother," I feel guilty enough that I was sick for six straight years during my son's childhood. Now that I'm well (most of the time although like everyone else, I sometimes have a bad day or a few bad hours), I am vigilant about making sure that my moods don't affect my son.

So...despite a less than stellar late afternoon and early evening, once my husband and son returned to our motel, I took a long walk by myself--to a favorite bookstore. My goal was to walk off my mood and to spend time browsing, one of my favorite past times.

This morning, we all had a truly wonderful day. My son had a good meeting with his faculty adviser, we had a terrific lunch at this great Indonesian restaurant, and then went on a wonderful tour of the dorms. My son was really excited and my husband and I were thrilled for him.

I guess if I have any advice for other bipolar mothers--it's to put your children's need ahead of your own. Just because I had a bad few hours the day before didn't mean I needed to share my feelings. Instead, I took a positive action--walking and reading--and then posted my feelings in my blog (I've since deleted it), which is a form of writing to heal.

It feels great to know that I can not only quickly brainswitch out of my moods but that I've learned to control them so they don't affect the people I love most!

Thursday, October 18, 2007

A Mother's Lament

The photograph above represents my experience at Cal in the Sixties. While Joan Baez may have enjoyed participating in anti-war demonstrations, I was stunned when students ran down Telegraph Avenue throwing rocks at storefronts. I was speechless when some members of the police department hit some of them with billy clubs. And I was frightened when they tear-gased my dorm.

All of this and so much more caused my first undiagnosed depressive episode. Almost 40 years later, I'm here once again for the Transfer Student Orientation for my son. He picked the university that almost destroyed my life.

I made peace with Cal about five years ago. I've been so excited by the way my son (and I) have been treated. Nonetheless, today was very difficult for me. Perhaps, because of the stress of the last few months, there have been moments when I've felt like I could cry 40 years of tears.

I pray my son has made the right choice for himself. I can't bear the thought that he could be as unhappy here as I was--so many years ago.

Wednesday, October 17, 2007

Change

We're off to take our son to his college orientation; he'll begin in January. It seemed like a few quotes on change might be appropriate. They are from a wonderful new book I'm reading, The Way of Transition: Embracing Life's Most Difficult Moments, by William Bridges, Ph.D.

"There is no sin punished more implacably by nature than the sin of resistance to change."
--Anne Morrow Lindberg

"There is a time for departure, even when there's no certain place to go."
--Tennessee Williams

"Through loyalty to the past, our mind refuses to realize that tomorrow's joy is possible only if today's makes way for it; that each wave owes the beauty of its line only to the withdrawal of the receding one."
--Andre Gide

"I have begun to have an idea of my life, not as the slow shaping of achievement to fit my preconceived purposes, but as the gradual discovery and growth of a purpose which I did not know."
--Joanna Field

Tuesday, October 16, 2007

Bipolar Holidays (Part 2)

The more I thought about yesterday's post, the more convinced I am that holidays are a big problem. I want to thank JayPeeFreely and Syd for their comments. I hope that "anonymous" came back to read them.

I wonder why it is that holidays are so difficult for so many people. Is it because we have wonderful (or terrible) memories of holidays when we were children? Do we imagine that everyone else is having better holidays than we are. Is it that the cinematic view of holidays is so much better than reality?

Or is it because holidays--particularly in the United States--have become so commercialized that people forget the real purpose of the celebrations. When I was young, my mother wrote the following poem:

The Thanksgiving turkey
is still in deep freeze,
but the streets are lined
with Christmas trees.

I remember laughing at the poem, oh so many years ago. Now, it seems a bit sad to me. So far, two people have written comments about dreading holidays and I've addressed both of them in posts. But, rather than dwell on the negative side of the holidays, I'd like to hear the "good stuff" about your favorite holiday, be it Thanksgiving, Hanukkah, Christmas, Kwanzaa, or any other day.
  • What is your favorite holiday and why?
  • What do you do that makes it special?
  • What special memories do you have of holidays past?
  • What's your favorite holiday food?
  • What is the favorite gift you got as a child?
  • What tips do you have for making holidays less stressful?
If you share yours, I'll share mine!

Monday, October 15, 2007

Bipolar Holidays (Part 1)

I received the following comment from another post, but I'm going to address it today. If any of you have helpful suggestions, I'm sure that "anonymous" will appreciate your comments as well.

"I have a sister (age 45) who has bipolar. I am her 56 year old sister. I am already dreading the holidays. I dread going to see my parents on Thanksgiving and Christmas because I know she will be at their home. I get a knot in the pit of my stomach every time I think about going. She will be there all day on both holidays. She has not spoken to me in 6 months because I talked back to her last February when she called me out of the clear blue sky and swore and screamed at me for 30 minutes for no reason. Any advice would be greatly appreciated."

First of all, let me say that there's no excuse for "bad behavior," whether your sister is bipolar or not. Should an incident like the one you described happen again, i.e. she calls you and screams at you for no reason, I would say, "I'm sorry. This is not acceptable behavior. I'm going to hang up the telephone now. When we can talk together like adults, please call me back."

And then I would hang up. Bipolar mood disorder does not give anyone the right to be abusive. If your sister cannot distinguish between "appropriate and inappropriate" behavior, she should get help from a cognitive therapist.

From reading your comment, it's difficult to provide advice about what you should do about the holidays. I have no idea whether your sister was always unpleasant at the holidays, if her behavior is caused by her medication or because she's not taking any, what your relationship has been over time, what the family dynamics are, whether there are other extended family members present (other than your parents and sister at these holidays) who can act as a buffer, and so much more.

Knowing none of this, let me say this. I don't believe that holidays are the time to resolve family problems; for the most part I believe they aggravate problems. If you and your sister can talk before the holiday and resolve things, that would be great (although from what you've said, it's seems unlikely). If you can't talk with your sister but if you can discuss her behavior with your parents, and seek advice from them before the holidays, that would also be helpful. If none of this is possible, do you have a clergy member who knows your family with whom you could discuss the problems?

If none of these ideas work, perhaps my readers will have advice for you, or you can always contact NAMI and the Depression and Bipolar Support Alliance to see if someone there has advice, or perhaps Dr. Deb Serani, or John McManamy can help.

To see why your sister may have difficulties during the holidays, I googled "holidays with bipolars siblings" and got an interesting hit on WebMD, which might give you her perspective.

Best of luck!

Friday, October 12, 2007

Hope (Part 2)

After Dr. Jerome Groopman was healed from a 19-year-struggle with extraordinary back pain (which he discusses in his book, The Anatomy of Hope: How People Prevail in the Face of Illness), he set out on a journey "to discover whether the energizing feeling of hope can in fact contribute to recovery. I found that there is an authentic biology of hope. But how far does it reach? And what are its limits?

"Researchers are learning that a change in mind-set has the power to alter neurochemistry. Belief and expectation--the key elements of hope--can block pain by releasing the brain's endorphins and enkephalins, mimicking the effects of morphine. In some cases, hope can also have important effects on fundamental physiological processes like respiration, circulation, and motor function.

"During the course of an illness, then, hope can be imagined as a domino effect, a chain reaction in which each link makes improvement more likely. It changes us profoundly in spirit and in body. Every day I look for hope, for my patients, for my loved ones, and for myself..."

Thursday, October 11, 2007

Hope (Part 1)

I am reading the most wonderful book, The Anatomy of Hope: How People Prevail in the Face of Illness. The author, Dr. Jerome Groopman, writes, "Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that "things turn out for the best." But hope differs from optimism. Hope does not arise from being told to "think positively," or from hearing an overly rosy forecast.

"Hope, unlike optimism, is rooted in unalloyed reality. Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me. Hope is the elevating feeling we experience when we see--in the mind's eye--a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.

"Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them. For all my patients, hope has proved as important as any medication I might prescribe or any procedure I might perform."

Wednesday, October 10, 2007

Wellness Activities

While I'd like to be able to continue writing about the process of brainswitching that I talked about yesterday, I realize that I'm too stressed out to be able to do it justice. So, I'll finish this series next week.

In the meantime, I know that stress can cause a depressive episode so I'm doing everything in my power to focus on wellness. For me, that means the following:

1. I know that exercise is very important, so I'm walking every day, whether I feel like it or not.

2. I also know that thinking too much about depression actually causes it. So...I am consciously refusing to think about past depressions or to categorize what I'm feeling as depressive symptoms.

3. For me, music clears my mind. It's my version of mindfulness meditation. Thus, I'm carrying my harmonica in my pocket and playing it numerous times during the day.

4. I know that disappointment in people can cause a depressive episode. While the behavior of some people in my life has been shameful, I am consciously refusing to think about it. It's not that I forgive them; rather I refuse to think about them at all.

5. I am spending time outside because I know that sunlight helps stabilize my mood.

6. I am giving myself permission to refrain from doing any work that causes stress and to extend deadlines, whenever possible.

7. I am spending very little time online because for me--reading blogs that are not uplifting--has a negative effect.

8. I am writing to heal.

9. I am sharing my feelings with my friends and with my extended family members (who are supportive) and finding comfort in their responses.

10. I am spending time with people who love me.

Tuesday, October 9, 2007

BrainSwitching out of Depression (Part 1)

Yesterday was the most stressful day of all in a month of prolonged stress. It wasn't due to all of the effort (which was significant) that my mother's caregiver and I expended getting my mom back to her assisted living facility from the hospital. Rather, it was caused by the behavior of my siblings.

Still, I have vowed not to let other people make me sick. The new skill I'm developing that is truly a lifesaver is from the book, BrainSwitch out of Depression: Breaking the Cycle of Despair by A.B. Curtis who is a licensed cognitive behavioral therapist.

While I'm only on page 67 and it's a 306-page book, I've got to say that it's the only helpful book I've ever read on depression. The basic concept is that when stressful situations occur, part of our brain reacts in an automatic mode (usually this is called kindling), and our neurons travel the same paths they have before.

To be more specific, if a situation occurs where a lover, spouse, or sibling is dishonest, disloyal, or abusive, and we've experienced this behavior before and it's made us depressed, over and over, our brain reacts in the same way--unless we switch out of it.

Curtis believes that through conscious thought and practice, we can change the path of our neurons. And she should know. She suffered from severe bouts of depression (she was diagnosed as bipolar) for many years before she returned to school and became a therapist. And, since she's figured out this method, she's changed her life.

She writes, "Although I am a happy person now, for almost 30 years I was an unhappy one. Chronic depression devastated my life and almost ruined my marriage. In the last fifteen years I have been so little troubled by depression that I no longer think of it as the enemy of the spirit by as the teacher of the soul."

(more to come)

Monday, October 8, 2007

Harmonica Healing

With the last month being so extraordinarily stressful, once again I have turned to music as a source of relaxation. Everywhere I go, I carry my Lee Oskar "C" harmonica. Quite honestly, I'm still not sure why I've learned no songs whatsoever; I've been teaching myself to play for a few years now.

But blowing in and out on the harmonica is one of my best ways of reducing stress. There is a Zen quality about it. I stop focusing on the stressful events--whatever they may be, I calm down, and I only focus on the sounds I am producing.

When my mother, her caregiver, and I spent 10 hours together--much of it in the ER--and the caregiver finally left, and my mother was sedated because of her broken knee, my stress level was only exceeded by my level of exhaustion.

So, I asked the nurse if we could turn off the light so that my mother could rest, I put two chairs together so I could elevate my feet, and I began playing my harmonica. For the first time all evening, I could feel the tension begin to leave my body.

I closed my eyes, pretended I was on a ranch in Wyoming,and began a series of chord progressions. I play quietly because I have no idea how these sounds affect other people. Since I can't play songs, I'm not sure if what I'm doing qualifies as "noise" rather than music.

(more to come)

Friday, October 5, 2007

Mama's Poems

In appreciation of my mother, Marjorie L. Schwartz, I'm sharing a few more of her poems. What do I love about my mother? Among other things, her sense of humor, her passion, and her joi de vivre. She and my father were a match made in heaven and they deeply loved each other until he died in 1989. These were poems my mother wrote for my dad.

marriage is... (1960)
sharing...both joys and sorrows
caring
for now...and our tomorrows
loving with warmth and true compassion
understanding each other...in his fashion
empathy...one for another
the wonders of being a father and mother
mutual trust with a love for living
but mostly marriage
is the joy of giving.


Color Me Blonde
(1973)
Helene Curtis has kept me blonde
for more years than I'd care to say
but the problem has grown
my cool has blown
now that my pubic hairs have turned to gray!



A Diet...Try It (March, 1974)
We burn 200 calories
when we screw
but what in the hell am I going to do?
i'm so sad that I could weep
i get hungry and you go to sleep.


Happy Anniversary (November, 1975)
Where did we go right for 32 years?
Why was there more laughter than tears?
Come on Berny..what did we do?
Was it your expansive penis...
or my womb with a view?

Thursday, October 4, 2007

Ask Me

Ask Me
by William Stafford

Some time when the river is ice, ask me
mistakes I have made. Ask me whether
what I have done is my life. Others
have come in their slow way into
my thought, and some have tried to help
or hurt: ask me what difference
their strongest love or hate has made.

I will listen to what you say.
You and I can turn and look
at the silent river and wait. We know
the current is there, hidden; and there
are comings and goings from miles away
that hold the stillness exactly before us.
What the river says, that is what I say.

Tuesday, October 2, 2007

The Impact of a Diagnosis (Part 2)

When the psychiatrist diagnosed me as atypical bipolar II, and told me this was a "mental illness," I was stunned. Despite my semi-annual six week depressive episodes, I was one of the most "normal" people I knew.

In that first meeting, the doctor not only didn't provide very much information on bipolar disorder, but she prescribed Zoloft (for which she had no written material) rather than trying a mood stabilizer. Since all of this was pre-Internet, I had to hunt all over to find material on manic-depression and on Zoloft.

The details of my story are included in my upcoming book, Bipolar Depression Unplugged: A Survivor Speaks Out, and because it's copyrighted material, I can't repeat here what I've written. Suffice it to say, it was a terrible experience.

After a decade of illness, and extraordinarily bad experiences with four psychiatrists who prescribed 25 different medications in different combinations and dosages, I often wish I'd never been diagnosed.

I sincerely believe that even the psychiatrists who consider themselves bipolar experts know very little about this illness. In my experience, they "throw" medication at patients rather than helping them understand the triggering events and resolving them, developing new behavioral patterns to deal with stressful situations, recommending a wide range of adjunctive services, and providing hope, which I believe is the critical component for wellness.

(more to come)

Monday, October 1, 2007

The Impact of a Diagnosis (Part 1)

When my father was diagnosed with an advanced stage of prostate cancer--more than 18 years ago--I still can remember the look on his face. It seemed like the moment the doctor said the word "cancer," my father's face turned gray. It was as if a dark spirit invaded his hospital room, and robbed him of his spirit and zest for life.

Because I am a researcher by avocation as well as by vocation, I knew that the best way to help my dad was to find success stories that would give him hope. After a tremendous amount of research, I found a book, Recalled by Life, written by Anthony J. Sattilaro, M.D.

Dr. Sattilaro, who was the medical director of a major hospital, had been diagnosed with an advanced case of prostate cancer that had metastasized throughout his body--and was given no hope by traditional medicine. My father's prostate cancer wasn't diagnosed until it, too, was at an advanced stage, and he, too, wasn't given much hope.

In Dr. Sattilaro's case, he had to go outside traditional medicine to find hope. He met with Michio Kushi, a practitioner who believes in a macrobiotic diet, and by following Kushi's diet, Sattilaro healed himself. Ultimately, his MRI revealed that he was cancer free. After receiving a "death sentence," Sattilaro lived for 10 more years.

For my father who went to a Kushi disciple in California, the diet was not as important as the fact that Kushi's disciple told my father that he would get well. When my father returned from his week-long sojourn, he was renewed. Within weeks, his energy level improved, he was back to playing tennis, his eyes regained their intensity, and his zest for life reappeared.

I imagine that for some of us, hearing a psychiatrist say the words "bipolar mood disorder" affected us the same way the word "cancer" affected my father. In my case, after 25 years of undiagnosed depressive episodes, I was relieved to find out my periods of grave unhappiness had a "name," but terribly distraught to learn that I could possibly to categorized as a MIP (mentally ill person).

(more to come)