Monthly Archives: September 2013

Why I tell my story

end mental health discriminatiion

Someone asked me why I tell my story. That person also asked why I don’t give more information from the medical point of view. My reply, “I am neither a doctor, nor a psychiatrist so any information I give can only be presented from a mother’s point of view. There is no straight answer as life is neither black nor white.

  • I tell my story in the hope that others might understand.
  • I tell my story to make it more difficult for people to close their eyes and their hearts to all the mental illness around them.
  • I tell my story to gain empathy for all those people out there who are suffering from one kind of mental illness or another and to show them that they are not alone.
  • I tell my story to try and convince people suffering from a mental illness that with the correct treatment, their condition can be improved.
  • I tell my story to gain support for them. If they have the backing of their community and family, they have the chance of a life with a purpose surrounded by love.
  • If we all tell our stories, maybe some of the people out there will listen, believe, and even act on our behalf.
  • No politician truly believes that he/she will gain extra votes by devoting more time to the issue of mental illness, but maybe … that time is now.
  • I tell my story: the story of one family, but it is also the story of millions of families living with a mentally ill relative anywhere from Africa to Alaska.
  • I tell my story in the hope that one day, there will be no stigma associated with mental illness.

stop the stigma


56 ways of saying I don’t remember

(The item before the clip takes a few seconds. Please wait)

The above link was in the New York Times. Alan Berliner explores memory and forgetting in this documentary about his cousin Edwin Honig, a poet, a translator and professor as well as his journey through Alzheimer’s disease.

It made me cry as my husband went through something similar though managed to evade saying; ‘I don’t remember.’


i just wanted to be wanted


Stigma is defined as a sign of disgrace or discredit which sets a person apart from others. The stigma of mental illness remains a powerful negative attribute in all social relationships.

Stigma is a marker for adverse experiences, among them, a sense of shame, and is still perceived as a sign of weakness.

What my husband and I learned from our ill son was:

Stigma means not having access to resources.

Stigma means being reviled and becoming invisible.

Stigma brings with it intense shame, resulting in a feeling of

             decreased self-worth.

Stigma  is connected to secrecy.

Stigma causes anger which results in keeping one’s distance.

Stigma brings hopelessness, resulting in helplessness, and no

    Noone can live without hope.

 A civilization should be judged by the way it treats its mentally ill and its senior citizens.


Is it possible to have meaningful friendships despite having a chronic illness, a mental illness ….?

Is it possible to have meaningful friendships despite having a chronic illness, a mental illness or a handicap?

All of a sudden, when being L’s friend required them to actually visit more regularly and offer to help out more, it resulted in the dwindling of  friendships, which was hurtful.

While so many relatives and friends stood by L, losing people she’d considered close, was a painful process. Chronic illness forced her to see her world in a different way. Her life no longer revolved around trivia. She needed a calm and positive environment while keeping stress down and managed to create a  happy lifestyle in spite of the fact that she suffered from unbearable pain sometimes. I was under the impression that she cherished people who stopped by to chat, to suggest a coffee outing, or do whatever needed doing.

This got me thinking. Why do people let friends with chronic illnesses suffer alone? Can turning one’s back on them be good for them or for you?

I admire  L’s coping strategies:

  • She stays connected, potters in her garden and writes.
  • She remains positive and even made me smile when she told me that she’d ridden at the back of a motor cycle the other day; very slowly, I hope.
  • She knows how to enjoy herself when she is not in too much pain.
  • She is the most organized person that I know. Maybe this helps provide her with a feeling of stability amongst the uncertainty and chaos of her illness

I would like to see her friends pull together and make a roster so that there could always be someone around or on call. It’s not the time to drift away. This is the time to draw closer.

R was visibly upset when she talked to me about her 20-year-old son who was diagnosed with schizophrenia. She cried when she said; ‘Our friends seem to have forgotten all about us. I wonder where they are. Do they ever think of us and what an impossible time we are experiencing? R and her family feel abandoned but can do little about it due to the demands of their child’s illness, trying to grope their way through the maze of the medical system and worry about their other children who also deserve attention. They have no option but to cope alone.

Could the lack of commonly understood rituals for mental illness be the culprit? Could the persistent stress or sustained grief have something to do with it? One grieves for a very ill person even while they are alive. My husband and I noticed that people coped better with the finality of our son’s death than with his schizophrenia. While David was ill, some of the above applied, but after his death, hundreds of people attended his funeral, visited us afterwards in hordes, cooked food, baked cakes and other goodies, and if they were unable to cope with this, they sent cards.

But when loss is not final and stress is ongoing, it is a different story completely. No cards, not even a box of chocolates while David was in the hospital. No ceremony, no rules for handling the grief that keeps on popping up both for the family, supportive friends, neighbors and relatives. I know that I suffered from chronic sorrow for all those years that David battled against chronic, paranoid schizophrenia. We were not in a position to invite friends often, even though we both loved people. We had far too much to think about and to worry about. We were exhausted as we both worked and David’s calls and disturbances late at night did not allow for much rest. This is only one reason why families in trouble need support groups.

Our society teaches us to avoid unpleasant situations.  We are taught how important it is to work, make lots of money and then spend it in malls or restaurants. Many chronically ill people can no longer go to work so there is a lot less money to spend which is so unfair as they then have the added problem of making ends meet.

While attending two different support groups, we heard that there are husbands who walk out, leaving their wives to cope with mental illness in the family or leave their wives who are suffering from a chronic illness. Of course there are women  who walk out too; probably less.  This is the easy path to take but of course there are those who remain no matter what. ‘In sickness and in health,’ is an easy vow to make when both parties are young and healthy. Do they ever think of the implications for the future? Probably not.


The Memory Cafe plus Toolkit

This is the link to The neighborhood Memory Cafe Toolkit to enable you to start one in your neighborhood. It was developed by Carole Larkin, MA, CMC, Sydney Farrier, LCSW, Pam Kovacs and Pat Sneller. Thanks for allowing me to post this Carole.

The Supper Club by Judith Graham, Washington Post

The Alzheimer’s supper club

By Judith Graham,September 09, 2013
  • Barbara Thompson, left, Linda Imholt, Candy Luis, Kappy Lundy and Hallie Caswell of the Wild Bunch, an Alzheimers support group, gathered for dinner in Portland, Ore. in June.
Barbara Thompson, left, Linda Imholt, Candy Luis, Kappy Lundy and Hallie… (MILT AMARAL/ )

For eight months the couples met at the local offices of the Alzheimer’s Association learning about dementia, a diagnosis that had turned their lives upside down. They cried together. laughed together, told each other things they hadn’t told anyone else. And became close friends.

Then this group of dementia patients and caregivers finished the class and it was time to move on, association staff said. Support groups were an option. But that didn’t seem right, meeting with strangers to talk about this devastating illness.

Also, most Alzheimer’s support groups are for caregivers, not for people living with dementia. And these couples wanted to stay together, with those giving the care side by side with those receiving it. So they started a supper club, humorously called the Wild Bunch. Once a month, the couples meet at one of their homes, casseroles and wine bottles in hand, to swap stories, trade jokes and have a good time.

Staying connected to other people and combating loneliness in the face of a disease that steals a person’s memory and ability to care for himself is important, doctors and dementia experts say. Research shows that the lack of social contact has adverse consequences on the health and well-being of patients and caregivers.

When my husband was ill, I realized that he needed to be wih people, so every week, I made sure that I invited friends over. Sometimes for coffee, at other times, when I had the energy, I invited them for a meal, making sure that there were two other couples besides us. My late husband did not speak much, so when he became quiet, at least the others could keep up a lively discussion. The supper club is a far better idea and I hope that the readers of this blog try it out.

I intend approaching the ‘powers that be’ and suggest this idea to them as I am so impressed with it. If only there had been one when I needed it.

Emergency Services

Before starting a support group for parents with mentally ill children, I volunteered to work with the emergency services and during my first lunch break, I overheard a paramedic say; “I have to eat fast as I have two crazies to pick up.”

Another said; “Don’t talk that way. I suffer from a mental illness and whenever I visit my general practitioner and attempt to challenge his diagnoses or the meds he prescribed, I am met with a smug smile and a dismissal which leaves me feeling helpless and hopeless so I don’t need that kind of talk here.”

He continued. ‘My friend has a history of bipolar illness and she was left alone in a hospital bed in excruciating pain for 10 hours before a young doctor checked on her to discover that urgent surgery was indeed called for. The head of the department had ignored what she’d said as soon as he read her chart and found the entry, Bipolar.” He continued; “Some of us are denied treatment and told to go away and stop trying to get prescriptions for street drugs!”

There are healers in our society who lack compassion, which is counterintuitive and hurtful. Medical students must be taught not to deny medical assistance to individuals with a mental illness. They hurt the same way as the rest of us, you know?


wellness puzzleWhile mental and physical illnesses are both alike yet very different, they must be treated with equal seriousness. People who  are living with mental or physical illnesses must be accorded equal respect and consideration.

The central goal of the mental health policy is to create the best possible context for encouraging recovery. The focus on recovery places emphasis on WELLNESS as opposed to ILLNESS and sets the goal for facilitating the abilities of people living with mental illness to deal actively with the limits imposed by their conditions. Why shouldn’t they live meaningful and productive lives?

Promoting mental health and recovery from mental illness requires intervention that addresses the social determinants of health, in particular those related to income, adequate housing and employment, as well as participation in social networks.

Each person’s path to recovery is unique.

Giving a talk to psychiatrists ….

Giving a talk to the same psychiatrists who weren’t too keen to listen to me when my son was hospitalized.

I was asked to talk to a group of psychiatric professionals which I found very stressful and wondered whether it was worthwhile putting myself through that agony. I realized that  many parents felt the way my husband and I did but simply did not have the energy to speak up. So I agreed to do it.  Here are some of the points I brought to their attention.

Doctors, please talk to us. Answer our questions. I know that you are very busy and stressed but we need to understand what has happened to our children.  Are we to blame? Did we cause schizophrenia? We did not receive answers but finally read about this in a book written by an American psychiatrist: PARENTS CANNOT CAUSE SCHIZOPHRENIA OR ANY OTHER MENTAL ILLNESS. The parents who were blaming themselves for faulty upbringing felt a little easier.

We should have been told to join a support group early on but we did not even know of their existence.

We needed advice to help us through each day, not to argue with our son who suffered from paranoid schizophrenia, what to say when he felt suicidal.

We needed to know how to set limits and to establish a routine.

We needed to learn how to find our way through the maze of bureaucracy.

We needed to be told ahead of time when our child was going to be released from the psychiatric hospital as food had to be bought and cooked, and medications bought and organized.

We should have been given some indication of how to handle the stigma associated with mental illness. You could help on this point.

I ended with; Please give our loved ones the attention they deserve but most of all, leave them with hope. Without hope, nobody can survive and treat them with  respect.

Each one of your patients is someone’s child, someone’s lover.

Coping with Schizophrenia and Alzheimer’s

Although schizophrenia and Alzheimer’s are completely different, the coping process can be remarkably similar.

I had to learn that it was not what happened to me in life that counted, but, how I dealt with it.

I learned that although pain is inevitable, extended suffering is optional. There was no way that I could change the cards my family had been dealt, so, in time, I learned to change the way I played each hand.

It took years, but, eventually I learned to take one day at a time.  I gained the ability to appreciate a beautiful sunset, a walk along the shore where I listened to the waves breaking and wiggled my toes in the damp sand.

I learned that my anger at Schizophrenia and Alzheimer’s were destroying me so, I learned to do something about that, and I did, slowly but surely. There were times when I felt that my heart had turned to stone and it took a long time to gain the ability to laugh, to feel even the tiniest emotion, and to be open to love again.

I was surprised when I drew up a list of the terrible things in my life as opposed to the positive aspects, and believe it or not, there were more entries on the positive side.  Amongst other things, I am blessed with two lovely, supportive and giving daughters, five lovely, healthy grandchildren and two wonderful sons-in-law. If I’d been the one to choose husbands for my daughters, I doubt whether I could have done a better job. How much better can it get than that?

I’ll end this blog with a quote from Charles Swindoll :

 Life is 10% what happens to you and 90% how you react to it.