Monthly Archives: October 2013

Disabilities

guide dog 2

Every shop assistant, bank teller, waitress, to name a few, should bear in mind that people with disabilities, along with their families and friends, travel, shop, do business, engage in activities in the community, send their children to school and attend school events the same as the rest of us. So, by providing the help that welcomes them, we are able to offer then better service, so making their lives easier.

Do we all treat people with disabilities with respect and consideration? Do we show patience, optimism as well as the willingness to find a way to communicate even if it is not straightforward? Do we bear in mind that the person opposite us needs to experience helpful customer service? Dare we assume what type of disability or disabilities any particular person is experiencing? What if this person’s disability is not visible? Are we sufficiently patient? A person with a disability often takes a little longer to understand and respond.

Maybe it’s difficult to understand what the person is saying, so it’s okay to ask them to repeat their request. It’s important for all of us to listen carefully and to make eye contact but it’s not okay to stare. It is of the utmost importance to speak directly to the disabled person and not to their interpreter or caregiver. Very often these people are physically handicapped and perfectly able to speak up for themselves. So let’s refrain from communicating with the care-giver standing behind them. That’s so insulting and hurtful.

Let’s behave to others the way we would like them to behave to us.

disabled with tee shirt                                                                       disabled

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Misconceptions about schizophrenia

People with schizophrenia can’t be helped?

While long term treatment may be required, the outlook for schizophrenia is not hopeless. There are many people with this illness who manage to enjoy life and function within their communities.

Schizophrenia is a rare condition?

Schizophrenia is not rare. The risk of developing schizophrenia is widely accepted to be around 1 in a 100 people worldwide.

Schizophrenia refers to a split personality?

People with schizophrenia do not have split personalities. Rather, they are ‘split off from reality.’

Everyone with schizophrenia is dangerous?

Their delusional thoughts and hallucinations sometimes lead to violent behavior but most people with schizophrenia are neither violent nor a danger to other people.

Schizophrenia

‘The weather today will most definitely be schizophrenic,’ the weatherman announced with a big smile.

‘That man is a Time Bomb,’ the journalist wrote in the local newspaper.

‘It’s the Legacy of a Madman,’ screamed the headlines of another newspaper.

Insanity, what I prefer to call a mental illness, is usually equated with horror.

I saw the above and a lot more while I watched my son suffer. His diagnosis was  schizophrenia. I’d like to remind my readers what schizophrenia is. It’s a brain disorder that affects the way a person acts, thinks and sees the world. People with this illness have an altered perception of reality; often a significant loss of contact with reality. Thy may see or hear things that don’t exist, speak in strange ways, believe that others are trying to harm them, or feel as if they are constantly being watched. With this blurred line between what is real and what is imaginary, schizophrenia makes it difficult, even frightening, to negotiate the activities of daily life. In response, people suffering from this illness withdraw from the outside world or act out in confusion and fear.

We were told that most cases of schizophrenia appear in the late teens or early adulthood.  Although schizophrenia is a chronic disorder, there is help available. With support, medication as well as therapy, many people with this illness are able to function independently and live satisfying lives. However, the outlook is best when schizophrenia is diagnosed and treated immediately.

Unfortunately, the stigma accorded schizophrenia and mental illness in general, stops many from seeking the help they so desperately need as they are unable to deal with the reactions of others.

Who takes care of the caregiver? Part 2.

reedsPART TWO:

The second time around, I was caregiver for my husband when he was diagnosed with dementia, probably Alzheimer’s, our daughters were married with their own families, so basically, I was the lone caregiver. He needed me to be around for a large part of the day and I was. This was very different from caring for a son with schizophrenia. My husband and I had been happily married for 51 years and had collected five grandchildren, two grand-dogs and a grand-cat along the way.

Friends warned me to take care of myself because Alzheimer’s can be a long term illness. Joining a support group was a good  move as I found myself amongst people who were in the same position, felt free to ask questions and discuss relevant problem which left me less overwhelmed and far less alone. I made a very good friend there who has become like my family.

I made a point of inviting friends over in order not to isolate my husband and we went out a couple of times a week. He often dozed off, but he enjoyed seeing some night life on the outside of our apartment. He loved walking and never failed to point out a beautiful flower or a tree in full bloom. When the stress became too much for me and I felt the need to go out on my own, I made the necessary arrangements.

A myriad of emotions came into play when I was caring for my husband. I wanted what was best for him, wanted it with my whole heart. I remember the feelings of resentment – why my husband? It distressed me to see the expression  of disbelief on his face at times when he was unable to remember something, He had always had a phenomenal memory. There were days when I experienced a host of different emotions within a period of hours, like a see-saw.

My late husband’s geriatric neurologist barely glanced at me during our appointments and seldom asked questions. I feel that she should have done so as I might have been able to clarify many issues. But, my late husband’s family physician always inquired about my health and how I was coping. I wonder whether he realized how important it was to me that he cared.

mimosa tree

Who takes care of the caregiver?

A Greek Island  WHO TAKES CARE OF THE CAREGIVER?

Part one:

While our son was ill, my husband and I were around the clock caregivers. Before schizophrenia entered their lives, our three children had spent years of closeness, laughter and sibling secrets. During the years we lived with David’s illness, his sisters had shared fears and tears, wishing that they could escape the shadow of the illness, but always drawn back to listen to and try to help their older brother who, in his healthy years, had done the same for them.

Our daughters realized what a toll full-time caregiving was doing to us and even though they were still teenagers, they offered to take care of their brother so that we could take a short break away from it all. The first time we went away was to a Greek Island while David was in a psychiatric hospital which made it easier for them. They visited and took his many urgent calls although they found it difficult to listen to his accounts of the voices he heard and all the frightening things he believed people were doing to him.

The few short breaks that our daughters offered us were of the utmost importance because, for those precious hours, my husband and I were able to focus on one another as well as on subjects not associated with mental illness. We learned how good it was to spend time together again, to laugh and to love and enjoy a swim or a meal together, uninterrupted.

I made sure that our daughters would call in the case of an emergency. They knew what to do as they had been a large part of the mental illness process and undergone many traumas in our house due to the situation. To this day I wonder where they derived the strength to even offer to do something as awesome as taking care of a very sick brother with the diagnosis of paranoid schizophrenia.

Can the parents of someone with schizophrenia maintain a balanced life>

  • As parents, we tried hard to maintain a balanced life but it was not easy. We listened to our son and were always there for him.
  • We were accepting and encouraging yet whenever we came up with new ideas, David rejected them.
  • There were times when David spoke to us for hours at a time until we felt physically battered.
  • We spoke to him with the utmost respect and tried to include him in our activities but to no avail.
  • We tried not to be patronizing.
  • We tried not to show him how upset we were.
  • Arguing with him didn’t help so we tried to refrain from doing so.
  • And more than anything else, we tried not to criticize but as we are only human, we did not always succeed. I was less successful than my late husband.

We were unable to lead regular lives. The tension in our home was palpable and most of the time I felt as if I were treading on broken glass.

When a child has a chronic illness

The hardest thing about my son’s schizophrenia was missing out on seeing him fulfill his aspirations and dreams, as well as ours. After he became ill, he heard voices, was extremely vulnerable, and lived with us for many years. Only after trying everything, his psychiatrist suggested that he live in a group home, but they would not accept him as he was not working. We suggested that he live with someone but he chose to live alone.

Slowly, but surely, he became a stranger, not even a shadow of his former self. Once, he was a surfer, an athlete, and could have been so many things. When he went into the hospital for the first time, my husband and I felt we had let him down but hoped that he would come out of there well. Instead, we stood by and watched him get sucked up into an abyss, another world. At the darkest point in our lives, I remember sitting on our bed with my husband. He was hugging me and I was crying uncontrollably and neither of us knew what to do, though my husband, sure that David would get better, kept repeating; “It will be okay, you’ll see. He will get well.”

We joined a support group as fighting battles on one’s own seldom works. And this group worked for us. Then we realized that we could not stop the schizophrenia so we tried to help our son improve his quality of life a bit, but even that didn’t work. However, we did learn many coping skills that helped us keep our heads above water.