Tag Archives: be supportive

David’s Story

While my son was ill for 16 years, I kept scraps of paper where I jotted down all the crises we all experienced. Using all that information, I eventually wrote a book which I called ‘DAVID’S STORY’, even though his name was DORON. I have blogged for years about schizophrenia and the blame, shame, stigma and discrimination associated with mental illness.

Here is my last blog for this year.

DAVID’S STORY

This is the story of one family, the story of millions of families worldwide. My happy, busy, social son, changed. ‘A classic case of paranoid schizophrenia,’ the psychiatrist said. It took a long time before we learned that parents could not cause this illness; that we could not be blamed. We thought he would go into the hospital ill but exit healthy. Wrong. He tried psychotherapy, occupational therapy, dance therapy and group therapy yet he continued to be out of focus, angry, psychotic and paranoid and the army of psychiatric health workers and psychiatrists were unable to help him.

Our teenage daughters stopped bringing friends home. Fear crept in. We attended family therapy at the hospital, told them what transpired when he was home, yet, they sent him home for weekends. BUT, I noticed that in the hospital, the staff always walked behind him.

Meanwhile our daughters did without; without sufficient time from us, without vacations or extras as spare cash went into another prescription, another treatment, and for his psychiatrist’s fees. Our 13-year-old daughter summed it up. ‘IF David’s body were hurting, people would bring gifts and visit him in the hospital, but because it is his mind that is ill, they stayed away.

Our family remained together, took each day as it came, learned to find the positive things in life and even realized how lucky we were to have a father/husband who was so caring,  as well as parents who loved one another. Together, we forged new dreams.

 Our son could no longer bear the voices in his head and realized that he was never going to have peace of mind. All he had ever wanted was to hold down a decent job, have someone to love, and … peace of mind. So, he went to a place of beauty; a place suitable for the surfer he had been.

Our son’s name was Doron but when I wrote this book, I changed all our names and called him David.

In January 1996, three  months before his 34th birthday, we buried our son. On that dull winter’s day, the earth that had been dug out stood in a mound ready to be thrown back. For the last time I talked to my son, while in the cold, still air, I heard a thousand birds sing their songs of life.

All the people who loved my son said farewell, even those who had not coped with his schizophrenia but knew how to handle his death. So many friends, neighbors and acquaintances stood, shoulders touching, their breath mingling in the icy air into one great sigh for our loss. I whispered goodbye. So much left unsaid. I ached to see him on his surfboard There was a thud of earth, a marker – and he was gone. He didn’t even say goodbye. In a tumble of memories, I saw David’s superimposed on the painful image of his anguished expression.

I love you, David. Rest. 1962 – 1996.

David’s Story by Jill Sadowsky, can be bought as a kindle book on Amazon and Smashwords.

 

More tips learned along the way …

Get involved

 

  • When living with a person who has a mental illness, keep your sense of humor as it’s of the utmost importance.
  • I had to revise my expectations and forget about seeing my son graduate from the university, or become a husband or a father.
  • I remember the time when I had to acknowledge the remarkable courage shown by my son when dealing with his mental illness. Of course there were times when he felt despondent and even desperate.
  • Even though I knew that it was not a good idea, there were times when I felt I had to shut down my emotional life.
  • Mental illness causes a family’s emotional relationships to fall into disarray.
  • Relatives closest to our son found themselves becoming emotionally enmeshed with him while those more distant, tended to become estranged.

                                                                                                                                                                                               speak out

Holidays are here again … and again and again

 

 

Hanukah                                                                Christmas

hanukkah 2                                         ????????????????????????????????????????????????????????????????????????????????????????Most families with chronically ill relatives dread holiday time when other families are all happy and looking forward to yet another happy get-together, while they dread holiday time. Then, at these occasions, a (mentally ill person) a consumer, is expected to eat, drink and even enjoy the family’s company plus celebrate the fact that it is a time of joy and good will.

For me, times like these bring back memories and feelings of disappointment, resentment, sadness and a host of other emotions. For my family, holidays were not good times. Sometimes my son was in a psychiatric hospital, at others he was home but barely in a stable condition. There were occasions when he had to be taken to a psychiatrist during the ‘festive season.’ Once or twice the police came for him after ‘the voices’ had urged him to break the law in one way or another, so it’s no wonder I felt that way.

What did holiday time mean to my son? When a lot was expected of him, he was able to handle himself well for a few hours only, but then he would crash as the voices only he heard got louder and more insistent. He then retreated into his inner self, got agitated and even though each sibling present took him aside for a one on one chat, it only worked for a short while. He might have felt that we all cared about him but when dinner was served, he disappeared, quite sure that we had poisoned his food. He was also unable to process the noise of loud laughter and/or snatches of conversation. It was all too much for him. There were numerous times when he refused to join us even for a short while, but stayed home alone, which ruined any enjoyment we might have had.

Some relatives treated him like a child. While it’s impossible to tell  our guests what to do, or how to behave, we managed to take measures to keep a modicum of control and reduce our patient’s anxiety at those family functions. How? I found an ally; anyone in the family who was a supporter rather than a critic. If you have a friend who is able to accompany you to a family gathering, go for it but be sure to find someone positive and focus your attention and energy on that person. Together you can decide on the limits you want to set for the patient. Because we  can’t control the way others treat our ill relative, that doesn’t mean we had to let everything that was dished out pass without comment. I knew it was okay to speak out for my son. I made sure that he was kept away from the offending person and hoped that my ally would use distraction techniques.

It helped to bring something like a game of chess to help him escape. I suggested that he go to into another room where it was quieter and If that didn’t work, someone went with him for a walk, weather permitting. All we could do was to help him to focus on what was good. Of course I worried that there might be anxiety-provoking triggers at our family celebration, we found one or two positives. In today’s world, one would make sure that he had a smartphone or an iPad handy.

As anxiety can spike at any time particularly during holiday time, an understanding of what’s happening can increase our sense of control over the situation and so decrease anxiety levels.

I tried to be positive and to smile a lot. Did it work? Sometimes but not always.

 

Sanity, and the loss of it.

Sanity is something that we all take for granted and I sometimes think that sanity is lost on the sane.  When my son lost his sanity, it was difficult for us to grasp. ‘How did this happen?’ we asked ourselves over and over. We all grieved for his loss.

Whn bizarre behavior, once limited to adolescents, like extreme weight loss, public temper tantrums and exhibitionism, are splashed across the front pages of leading newspapers, we know that this behavior can be the start of a mental illness.

But, if we were able to break the deafening silence and get a program that includes mental illness into our school systems, teachers might be in a position to identify the first signs in their students and guide them toward a place where they will be able to get the help they so badly need.

What my life is made up of ….

wisteria 6

 


I seemed to spend my time dodging from work to family and to friends, as well as endeavoring to keep my health intact. If I missed a day’s work, I knew that I could make up that lost time. But, family and friends are made of glass and if I dropped one of them, our relationship would be irrevocably scuffed, nicked, marked or even shattered. It could never be the same again. Health? I knew I had to live at a slower pace, but could I? I am not sure.

So, what I’d been doing was striving for balance in my life. But, how could I achieve that? I tried not to compare myself to others because I thought it was the very difference in each of us that made us special.

I learned not to set my goals by what other people deemed important. After all, I was the only person who knew what was best for me.

I learned not to take anything for granted, especially appertaining to near and dear ones. I handled them with kid gloves as my life would be meaningless without them all.

I had learned how destructive it was to live in the past or in the future. By living life one day at a time, I hoped to enjoy all the days of my life.

Knowledge is weightless, a treasure that I could carry easily, so I was no longer afraid to learn.

While I still had something to give, I wasn’t about to give up. Nothing was really over until the moment I stopped trying.

For a very long time, I shut love out of my life, not wanting to expose myself to hurt again. Now, I no longer do so. Once again I have learned a lot along the way. The quickest way to receive love, it to give it; the fastest way to lose love is to hold onto it too tightly;  and the best way to keep love is to give it wings.

I very often admit how less than perfect I am and maybe it is this fragile thread that binds people together.

I’m trying not to run too fast lest I forget not only where I’ve been, but where I’m going.

I am no longer afraid to take risks. By taking chances, I’ve learnt how to be brave.

I’ll always be aware of the fact that a person’s greatest emotional need is to feel appreciated.

I now endeavor to use time and words more carefully as neither can be retrieved. Life is not a race, rather, a journey to be savored each step of the way. But, I still have a lot to learn, and one day at a time, I hope to enjoy all the days of my life.

Knowledge is weightless, a treasure that I can easily carry, so I’m no longer afraid to learn.

While I still have something to give, I won’t give up. Nothing is really over until the moment I stop trying.

I very often admit how less than perfect I am. It is this fragile thread that binds people together.

I’m trying not to run so fast that I might forget not only where I’ve been, but where I’m going.

I am no longer afraid to encounter risks. By taking chances, I’ve learnt how to be brave.

I’ll always be aware of the fact that a person’s greatest emotional need is to feel appreciated.

I now endeavor to use time and words carefully as neither can be retrieved. Life is not a race, rather, a journey to be savored each step of the way.

 

The blogging grandma

My journey toward becoming a blogging grandma started when I realized how much I had to say about mental illness, Alzheimer’s disease, the stigma associated with all brain illnesses, grief and a lot more. My late husband would have agreed with the fact that I have a lot to say, but in this case, he might even have egged me on to speak about it.

When our son was diagnosed as suffering from paranoid schizophrenia, I barely knew how to spell it. While attending a support group for parents who had children with a mental illness, I learned how many sectors of our society do not know how to relate to this large section of our population who are basically gentle and kind people. However, if a person with a mental illness, known as a consumer in the United States, becomes psychotic and then stops taking  prescribed medication, the trouble begins.

People find the subject of mental illness upsetting and threatening, but it is everywhere. The prevalence rate for schizophrenia is approximately 1.1% of the population over the age of 18 or, at any one time as many as 51 million people worldwide suffer from schizophrenia. About 1.5  million people will be diagnosed with schizophrenia this year, worldwide. The rates of schizophrenia are generally similar from country to country.

A person diagnosed with a mental illness is usually the very last one to speak out about it due to the stigma. Mental illness is far more common than diabetes, heart disease or cancer. It is NOT a character flaw. It doesn’t help to tell someone: get over it. But it does help to show compassion as they are struggling. Try and find ways to give support. Maybe it’s time to deal with it openly with the emphasis on kindness and acceptance.

grandma using an iPadThis blogging grandma’s favorite tool of the trade.

The Placebo Effect according to Dr. Ross Pennie

question markUse empathy, kindness, a gentle touch, listen to your patient, try using humor … instead of pills ????

 Narrative medicine again – the placebo effect.

‘It took me a long time to notice, but many of my patients told me “We are feeling much better now, doctor.” And this was said at about the time that our first half-hour consultation was coming to an end. They had not yet taken the pills nor received the shots I was about to prescribe for them, but their faces were more relaxed, their voices less strained, their eyes brighter and their pain less severe. Clearly, they were starting to heal before I’d done anything remotely medical . I must have been launching my patients’ healing processes even before reaching for my prescription pad.

What I am talking about here is the placebo effect.  To most of us, a placebo is a fake sugar pill that commands no respect and deceives only the naïve or the ignorant. But, thanks to new rigorous studies, researchers are learning fascinating things about how the brain works to heal the body through the measurable power of the placebo effect. Given an appropriate milieu generated by a kindly, knowledgeable and self-confident health-care professional, placebos can cure a variety of real but subjective symptoms.  These include pain, nausea, fatigue, muscle weakness, abdominal cramps, sadness and despair. Sophisticated imaging techniques show that when a person trusts the therapy they are being given, the brain can reroute its signals and cause the body to heal itself – the placebo effect once again.

Added to this, the patient needs a kind word, empathy and reassurance as well as a firm but gentle touch. Add a touch of humor too. Physicians have been using these tools for a long time: since Hippocrates and his oath, in fact. One hundred years ago, it wasn’t the leeches doctors put on your skin that healed you. It was the idea of being cared for that switched your brain into healing mode. Thanks to the placebo effect, many of the treatments and medicines we inflict on our patients seem to work, even though there is little or no physical reason for them to do so. The history of medicine – surgery, physiotherapy, chiropractice, and homeopathy are littered with discarded treatments that seemed a good idea at the time. Many therapies did not work as designed, but triggered surprisingly powerful placebo effects on the human mind.

According to his colleagues, Dr. Pennie had learned to optimize the placebo effect when caring for his patients. He harnesses the reassuring smile, the soothing voice, the gentle touch in ways that show he cares for his patient while in the process of diagnosing and treating.

So, to feel assured that we will all be cared for during our illness/difficulty/predicament, is a powerful human need, one that opens the doorway to the placebo effect.

Now what I need to know is:  will this work where psychiatry is concerned? I have a feeling that it might and am going to try and find Dr. Ross Pennie and get his opinion on that subject.