We have been married since I was 21 and she 23. I will be 65 this October and she was 68 just last week. A good life together with two wonderful children, our son Zack who is 33 years old and our daughter Terrina who, shall we say is no longer 30, with her Emmett and our two grand daughters somewhere in Canada. In all a good inning with more then our fair share of what life throws at us. Sometimes good sometimes not too good.
I write to day of life. About how insignificant are the things around us when those we love are facing personal challenges that refocus immediately our perceptions of what is important and what is not in our life. How what is happening in the Middle East, in Afghanistan or even in Kuala Lumpur now is put on the back burner when you know you have to deal with what is in front of you. Today, I want to write about the most important person in my life. My dear wife.
I was told this week that she might have Frontal/Temporal Dementia.
Behavioural variant FTD (bvFTD). Behavioural symptoms include lethargy and aspontaneity or oppositely disinhibition. Apathetic patients may become socially withdrawn and stay in bed all day or no longer take care of themselves. Disinhibited patients can make inappropriate (sometimes sexual) comments or perform inappropriate acts. Patients with FTD can sometimes get into trouble with the police because of inappropriate behaviour such as stealing. Recent findings indicate that psychotic symptoms are rare in FTD, possibly due to limited temporal-limbic involvement in this disorder. Among FTD patients, only approximately 2% have delusions, sometimes with paranoid ideation; hallucinations are rare.
Nothing uncommon for someone her age – 68 years old, but certainly uncommon for me. What it means is that a brain scan had revealed some shrinkage in her brain – the front part of her brain –and that explained a lot. First the change in her these last few months – not only the physical change but more telling, a change in character. You see the front part of your brain controls your inhibitions. We humans are ruled by our inhibitions and what we do or do not do to others and to ourselves are decided by the years of conditioning that we received from the time we came into this world. So imagine what happens when you start to lose your inhibitions!
My first inkling of this was when my dear wife told me that after many many years of being a housewife – cleaning, cooking, cleaning, cooking and more cleaning and more cooking …she wants out! And she proceeded to do just that. No more washing, no more ironing, no more cleaning around the house, no more cooking, no more anything!
Predictably I initially dealt with it the way any other male would. I took her physically to the sink and told her to wash the dishes. Made her iron the clothes and cook her own meals even as she stopped cooking mine. And that I continued to do until the Doctor told me that my wife is changing and the doctor explained why she was changing and that I would need to adjust to the changes.
And I did. I cook, I iron, I wash and I do what I have to do to keep the house ship shaped and our life in order. No ifs no buts about this - I just went ahead and did what I have to do ably assisted by my son. We all retire at 60 or 65 from work. So why not my dear wife who is now 68!
But then came the auditory and visual hallucinations. Nothing like “One Flew Over the Cuckoo Nest” where you have the inmates of that Cuckoo Nest communicating animatedly with people they can see and we cannot. No, none of those things but my dear wife startled me one day when she asked me to sit further away from where I normally would sit on the sofa next to her. Usually when I sit beside my wife even air would not be able to find any space between us. I love to sit close to her, hold hands and literally rub shoulders with her. But that day, about four months ago, she asked me to move further away as she had a baby sleeping beside her. And I did see a blanket folded into a sort of a cot placed beside her - and that, she said, was the sleeping baby. My first reaction was fear and even now as I write about it, I can feel the initial fear. Fear about the sanity of my dear wife. Fear about what why is she seeing something that I do not. Fear about the unknown.
And that feeling of fear of the unknown has followed me with each new ‘happening’ that my dear wife has had with her hallucinations – she see things that I do not see. hear things I do not hear. To her they are real and most times they are about good things. Most times that is…though the other day she said a python ate half of her face while she was sleeping – and all this she told me with a serene smile on her face. Then three weeks ago she told me that someone hit her on the head with a baseball bat –blood streaming everywhere – and still with that smile on her face. Not the maniacal crazy sort of Jack Nicholson smile – just a serene and peaceful smile that told me that she was fine with whatever that was happening to her.
It was after the python face eating incident that I took her to be looked at by our GP. Our GP immediately insisted that she be taken to the hospital for the necessary tests and checks – and that brings me to where I am today. A 65-year-old man who has been told that his wife may have Temporal/Frontal Dementia.
It is now 6.01 am on a Sunday morning in August and I am now alone in my room. It has been about two weeks since the initial diagnosis. My dear wife was admitted into hospital yesterday afternoon for about two weeks for further checks, scans and observations to try and allow the doctors to make an informed diagnosis of her mental condition.
There I have said it “mental”. That word “mental” has been lurking in the background until the doctor told me that my dear wife would need to be admitted to the “Old Age Mental Health Care unit” for observation. Again shades of “One Flew Over The Cuckoo Nests”…but my wife and me has never been happier!
A life with less inhibition is what I would recommend for most of us. My dear wife laughs when I tell her that they were doing a “Live” coverage of the Foreign Minister of Ecuador announcing his country’s decision to grant political asylum to Julian Assange. The thought of the TV being ”alive” tickles her….and me too when you think of it! We now laugh together at many things in life which we use to be serious about – like eating from our own plate of food. We all eat from our own plate of food whether at home or when eating out. My dear wife now picks from my plate anytime she feels like doing so – and now she has me doing it too! If I stumble while getting up after too long a period of sitting down my dear wife will have a chuckle and remind me that there are two invalids in the house! And we need to look after each other! More laughter and fewer inhibitions is good!
But it has not all been good. With fewer inhibitions you tend to not switch of the gas after cooking nor the television or the lights or anything else that needs switching off. You no longer clean and go (as they say in the fast food restaurant) my dear wife just goes! My son and me clean up! So we do need to keep any eye out for her in case what she does becomes dangerous to herself and to us.
It is a change in our lifestyle. A change we are prepared to do so that the quality of life for all of us is good and will continue to be so. This morning when I woke up at around 5am I had wanted to stop writing in steadyaku47 because, as I have said, the important things in life for me has now change. The important thing in my life has always been my wife and my children but now what has changed is the focus.
The focus is now my wife. I am coming to terms with what the future does hold for me. Nothing is certain but I know my son and me will cope. You can say what you want about the quality of life and what the future will hold when you know that your dear wife is going through these changes. All that I know is this – if in your life there is no love, what else is left when you are past 60? From the time we met in London in the 1960’s until today in Melbourne – we are blessed with an abundance of that. Much as I initially wanted to stop working on steadyaku47 I realized that steadyaku47 has always been about what is in my head and what I think and what I do. So is this. So I will continue writing about what is important to me – my dear wife,
Thinking of her now brings a smile to my face. I wish that you will all have the life that I have lived with this wife of mine – from the time we met in London, then to Seremban, Penang, Kuala Lumpur, Perth, Adelaide, Kuala Lumpur, Shah Alam, Perth, Sydney, Bangsar, Adelaide, Bangsar, Adelaide and now Melbourne…and the journey will continue together! It has been one hell of a journey and we will ride into the sunset together…or as I would prefer to say it…into a brand new day together!
What happens now? I do not know if I want to write, can write or continue to write about the things I have been writing in steadyaku47. As always I will go on my instinct. I did not know I wanted to write about my dear wife until I woke up at 5 a.m this morning and now that I have I feel good because as always I write what is in my head and in my heart. I hope to continue doing so for as long as I can. So for those of you who have become my friends through steadyaku47 this posting may go some way towards explaining why I have, to some extent, neglected my work on steadyaku47 for quite sometime. There are more pressing matters that requires my attention…my dear wife!