Think Twice. We are all worthy of consideration

I read the following report in amazement.

Schizophrenia is a malady that can be treated. A malady? A MALADY? I have never heard of anyone calling another serious illness a malady, have you?

I am not proud of the fact that I tricked a nursing aide in a psychiatric hospital to believe that I was doing research and needed to sit quietly somewhere and observe the patients. She must have been new on the job, and complied. A teeny while lie, huh?

The aide told me that she had once heard a doctor say, ‘I don’t have time to examine him now. He’s a schizophrenic. He can wait.’ It bothered me that he used the word schizophrenic as it takes away the patient’s identity. I doubt whether anyone would describe a cancer patient as cancerous! Of course not. But, more than that, did he mean that because his patient had schizophrenia, he would be treated as a second class citizen and have to wait till the doctor was done with his other ‘more important patients’? Had he checked how serious the person’s condition was? Was it standard policy in that hospital or only that particular doctor’s attitude?

As I was getting ready to leave, the nursing aide and I chatted and then she said; ‘I have seen great courage shown by some families with mentally ill children, something that never fails to astound me, even when they are accused of giving birth to children who are violent, uncouth, loony, druggies and a lot besides. These parents are hurting and the loss they experience knows no bounds. They remain in a perpetual state of grief throughout their lives because everything has been altered in a way that most people simply cannot understand unless they too, have had personal experience of mental illness in a relative.  I believe that nobody HAS to understand it fully but they can become educated on the subject.’ When I said goodbye to her, I told her that I was one of them … one of the parents she’d been talking about and she shook my hand, then impulsively, gave me a hug.

If I were a fairy princess in a children’s story, I would wave my wand and make everyone accept the fact that every human being is deserving of attention. I have seen a video clip of man who stopped the traffic on a busy thoroughfare in the USA to let a mother duck lead her ducklings to safety on the other side of the street. I am sure that we have all rescued a dog or a cat.

I would also wave my wand over journalists’ heads to make sure that they change their language when reporting on these unhappy, people, one of them,  who was my son.

The third wave of my wand would be over researchers who are not moving fast enough to find a way to alleviate the suffering of all mentally ill people and over governments who simply do not allocate sufficient funds for research.

It’s time that mental health became top priority instead of reporting only on violence and wars. I am quite sure that most mothers will agree with me on this.

Should he be taking the Alzheimer’s medication?

What kept running through my mind while my husband was suffering the effects of Alzheimer’s disease was; should he be taking the Alzheimer medication, Exelon? And, for how long should he take it?

I discovered that there were five approved treatments to choose from but none of them could actually cure the disease. All they did was to slow down Alzheimer’s progress for a period of time from eighteen to about thirty-six months, and even that was ‘flexi-time.’

Our geriatric neurologist recommended that my husband take meds for the early stages but in fact, when she eventually diagnosed dementia, probably Alzheimer’s, my husband had been forgetful for quite a few years and although  I was aware of the fact that something was not right, it took a long time to persuade  his doctor as well as everybody else, as he was so smart. In fact, years had gone by and  he’d managed to cover it pretty well, playing bridge and going for long walks without getting lost.

Once he started taking the drug, I asked the doctor how she knew when to take him off the drug? Well, she didn’t, so she  kept on writing out prescriptions., insisting that if we stopped, my husband might become worse. There was no definitive test.

I would imagine that taking someone off the drug involves the caregiver’s inherent ability to take risks as he/she is the ultimate decision maker. But, this might create guilt in that person’s mind. As there is no clear indication as to when to stop meds, I learned as much as I could about the disease and about Exelon and couldn’t help wondering how two people in my family could have contracted diseases like Schizophrenia and Alzheimer’s, both illnesses without definitive tests for diagnoses and both without cures.

With hindsight, I think that the decisions I made with input from my children, were good ones and my husband had quality of life. Of course he knew that he was not well, aware that he forgot far too much for someone with his sharp mind. The things that he had left by this stage and the ones that played a large part in his life were classical  music, the outdoors and his family, who visited as often as they possibly could.

It seemed important to him to have company even though he didn’t speak much.  He needed to be touched and hugged and spoken to slowly and gently and most of all, he needed tender loving care. We all need love, don’t we?

A Mind in Crisis

A flea and a a fly in a flu, were imprisoned, so what could they do?

Said the fly; ‘Let us flee.’  ‘Let us fly,’ said the flea.

So, they flew through a flaw in the flu.

At 2 a.m. one morning, our son called to chant the above limerick that he’d found on the internet. If the time had been more appropriate, we might have appreciated his sense of humor more.

I can’t begin to imagine what it must be like to lose one’s sanity; something that we all take for granted. Our son, David never had a moment’s peace of mind. Those voices were excruciating and he was psychotic more often than not.  I vowed to continue searching for the ‘magic cure’ that surely, must be waiting over the rainbow ?

You are beautiful

TRUE BEAUTY

A little girl who is undergoing a series of chemotherapy, is drawing hair on her friend’s head – she is having chemo too. It made me cry.

If only houses could talk ….

Memories

Like the fields where I chased butterflies in my childhood, the mountain my husband loved to climb as a boy, or the beach where our children paddled and fished in tide pools, our house didn’t belong to me nearly as much as I belonged to it. I’d worked hard in the garden even though the roots of the glade of eucalyptus trees bordering our property drank the water greedily whenever I watered, leaving little to nourish the grass and plants.

Does a house have eyes and ears? If only it could  tell me all it has witnessed. Maybe that depends on how I ask and how much I’m willing to hear.

I am an early riser, so that day I chose to sit on the landing which was sufficiently large to house me and our black Belgium Shepherd, Bonnie. We sat together for half an hour or so; me in my pajamas, the dog warming my feet as we bundled up together under a rug to ward off the chill. I found myself replaying the past in my head. I returned to the time when my three children were getting ready for school, rushing about noisily, dressing fast, grabbing their schoolbags then eating breakfast on the run. The house, like my heart, was filled with thoughts of my lovely, happy family.

In the stillness on the stairs, it was as if I could hear them all again. It was the weekend and they were singing, listening to loud music, talking and the girls were giggling. I could hear the thud of footsteps in the bedrooms above me, showers running, toilets flushing, phones ringing, doors banging, voices rising and falling like wind through the trees. I heard lots of laughter filling the rooms and overflowing into a thousand empty spaces.

This house held countless memories from other times; times of want and times of plenty, good times, bad times, happy times as well as sad times. Our house is a memory bank that my late husband and I invested in, beginning in the days when our family was young, hoping for a good return someday when we grew older.

Starting to shiver on those stairs with Bonnie on my feet, I felt very rich. I stood up and went upstairs to get dressed and start another day.

                                  ………………………………………….

We sold that house in the year 2003 when my husband became ill. We bought an apartment that now rings with the sound of my grandchildren’s voices.

YIELD, FORGIVE

SERENADE 2 SENIORS

Since I have been widowed, I have spent a lot of time observing couples, far more than when I was a happily married woman. I smiled on hearing a conversation between a young man and a young woman in a coffee shop. She; ‘You are wrong, I’ve told you so over and over,  and if I agreed with you, we would both be wrong, you know!’ He ; he grunted.

In a supermarket, I heard a woman with long, blond hair and well-manicured blue nails, complaining about trivialities and it was her boyfriend’s response that impressed me. ‘Stop taking  yourself so seriously. No one else does, you know.’

A middle-aged woman to a friend; “If only I’d known that my husband was going to die in a traffic accident. If only I’d agreed to buy the new television screen that he had his heart set on.” Her friend’s reply, ‘Stop auditing your life. Get on with it. Move on. We all tend to say if only but it doesn’t help, you know. Make the most of it. All that really matters is that you loved and were loved, so consider yourself one of the lucky ones,’ and with that, they disappeared, wandering along the lines of well-packed shelves.

When I hear someone moaning about something insignificant, I am tempted to say, ‘No matter how you feel, get up, dress up and show up. Your life is a gift.’ My late husband taught me not to grieve for the things I did not have, rather, to rejoice in what I had. If the day was a bad one, it was simply that, and not necessarily a bad life. He often said, ‘Let your past make you better and not bitter.’ Not an easy task to accomplish.

When a retired man sighed and complained that his life was hard, I was tempted to ask, ‘compared to what? If you can walk, step outside at last once a day. Miracles are waiting everywhere.’

The empty chair opposite mine

Alzheimer’s disease,

Grief, Serenade 2 Seniors

THE EMPTY CHAIR OPPOSITE MINE

Before my husband passed away, my birthday had always been a day filled with love and giving. And, I was thankful for what I had. On the first birthday after his passing, his empty chair at the dining room table was a constant reminder of my loss. The knowledge that he would never again sit opposite me as we spoke about our blessings or our problems, caused me a great deal of pain and the effort to remain seated till the end of the meal required determination. Grief was my all-encompassing companion.

The following year on my birthday, the empty chair opposite taunted me, reminding me how alone I really was. It was also a constant reminder that my husband had gone forever.

A full 365 days later, the emotion that sat opposite me on my birthday was resignation, and suddenly, my husband’s absence was almost as much a part of my life as his presence had once been. Amazing as it sounds, I found some comfort in that.

My children missed their father too and we spoke openly about things he’d said and done. I think it was then that I became resigned to the reality of widowhood and was able to be grateful for the good things in my life. I was even able to enoy some of them. I am aware of the fact that many people are in less fortunate positions.

February, 2014, will be four years since my husband’s passing, and I hope by then that I might use the word okay. Missing my husband no longer consumes me as it has become a large part of my daily life. I realized this when I heard myself laughing the other day, and looked across at the empty chair opposite me without flinching.

Sharing is caring

How about saying the following when talking to a chronically ill person or a family in trouble?

I prepared too much dinner today. Can I bring some over for you?

Tell me what it’s really like to be you for 24 hours.

I bought flowers to cheer you up. Is it okay to put them in a vase?

I have no idea how you are feeling, but I will always listen to you.

Has your cleaner returned? If not, is it okay to bring mine over just this once?

It’s hard for me to sit still for long periods, so if there is any laundry for me to fold or throw into the washer, just say the word.

I cook on Fridays and this week I plan to make lasagna. I would like to make extra for you. But, if you prefer chicken I can do that. It’s no problem.

I’m going to the supermarket. Need anything?

If you need a good cry, I have plenty of tissues in my bag.

I want you to know how much I admire the way you are handling all this. I can imagine how difficult it must be.

The word schizophrenia in a political debate?

August 29, 2013. I opened the newspaper and imagine my surprise to see the following heading screaming at me. Schizophrenia in two state solution. I thought that the place to find an article on schizophrenia was in the Health Section of the newspaper.

To everyone out there, I am going to tell you what schizophrenia is and what it is not, once and for all.

Myth   It’s a split personality.
Fact    It’ not a split personality. These people are split from reality.

Myth   Schizophrenia is a rare condition.

Fact    It is not rare. The lifetime risk of developing schizophrenia is widely accepted to occur in around 1 in 4 families.

Myth   People with schizophrenia are dangerous.

Fact    Although the delusional thoughts and hallucinations of people with schizophrenia can lead to violent behavior, most people with the illness are neither violent nor a danger to others.

Myth   People with schizophrenia can’t be helped.

Fact    While long term treatment might be required, the outlook for schizophrenia is not hopeless. When properly treated, many people with this illness are able to enjoy life and function within their families and communities.

And how do I know all this? I did not get it from textbooks, nor from lectures or psychiatrists. I know all this because our beloved son suffered for many years from schizophrenia and I promised him that I would try to lessen the stigma associated with this illness. I vowed to help whoever needs my help because I don’t want a single mother out there to feel as lonely and uninformed as I did when our son was so ill.

 

More about the media

I always use the phrase, suffering from schizophrenia and NOT schizophrenic but recently I read about schizophrenic weather.

A phone company advertised; This is a crazy, generous offer.

On NBC’s America has talent; one of the judges commented that a group of contestants resembled people who had exited a mental institution.

Dr. Phil, the TV pop psychologist tried to reassure a woman with compulsive behavior that she was not insane because insane people suck on rocks and bark at the moon. I have no doubt that he regretted saying it the moment it was out of his mouth, but the damage was done.

Brian Williams, anchor on NBC’s Evening News, referred to a kidnapper and rapist as arguably the face of mental illness. He apologized.

CBS announced that they are about to premiere a new show called The Crazy Ones starring Robin Williams, who in real life copes with bipolar disorder, but after checking previews, it appears as if the show has nothing to do with mental illness. It’s a comedy where crazy ideas turn into genius.

 Is it necessary to hear this kind of thing? Think of how a person who has a mental illness must feel, please.