It has not been a good day for my wife….and for me. She started coughing yesterday afternoon and it got progressively worse as night-time came. The coughing exhausts her and what was at the beginning merely an irritating twitch became a concern for me by the time visiting hours was over yesterday.
Today she has been coughing every few minutes throughout the day. They had taken an X ray of her chest this afternoon and while the Doctor did not find anything out of the ordinary, we are waiting for a second opinion from another doctor. And so we wait.
Today I decided to spend the night at the hospital. With my wife coughing away I know I will not be able to sleep at home so I might as well not be able to sleep in the hospital and be there for her.
And this is where I am now…it’s just past 8.30 pm. She had taken her medications and we are waiting for the nurse to do a change of her diapers to make sure that she is dry as she goes to sleep.
I know many of us have gone through periods like this in our life. Times of uncertainty, worry and a feeling of hopelessness in not being able to make things just that much better and easier for our loved ones during their period of illness or as old age takes them into that time of their lives when they are no longer able to care of the themselves and are dependent on us.
I have worried so much for my ability to cope should I be faced with the need to care for my loved ones. The doubt was more for what I know of myself. At 67 I know that for most of my working life I have never call a place home for more that a few years – five years at most. I am restless and the ordinary bores me to distraction. Ask my children and they will tell you that home can be in Tasik Titiwangsa, Bangsar, Adelaide, Perth, Sydney and Melbourne ……and for my daughter it is now Toronto. For my wife she takes moving between London, Malaysia and Australia in her stride and at most will ask why I chose to go where I said we are going to this time around. So how will I manage with something so permanent as dementia?
I don’t have the answer to that yet. It is a work in progress but If a mother can love a baby for whom she has to do everything…and I do mean everything…I guess the same happens when someone you love becomes dependent on you.
However people with dementia do not get better. So how do you deal with that reality?
With great difficulty. With great difficulty……
Sometimes when my wife has been looking at my face for a while I can see a tear in her eyes…and I ask myself…..is she thinking of our life together? Of the times in the 60’s when we were in London together? Or is she thinking of that vibrant independent mother that she once was who loved her children unconditionally and put up with a husband wandering between Malaysia, London and Australia looking for something even he would not know if he had found it? I know not what she thinks because I can no longer ask her what I want to know!
Ahhhh I just got a smile from my wife. I can see sleep in her eyes and as she yawned it dawned upon her that I was in the chair beside her…and she smiled at me. That smile will keep me comfortable until the morning!
The night nurse just made her rounds and told me that they will be changing my wife’s diapers twice through the night to make sure that she stays dry! I do not even do that at home! How good is that!
Its past 10 pm now and all is quiet in the ward. My wife is drifting in and out of sleep and I think she will be asleep soon. I, however, would prefer to stay awake writing my thoughts down until morning.
For me my life’s journey is almost at its tail end. If all goes well I may still have five to ten years of being able to do what I want to do – whatever it is that I want to do…..before senility and incapacity sets in. How many years more do you have? How many more years do you want to have? What are the things in life that you still want to do, have to do and hope to do?
When you have lived for over six decades these things crosses your mind. Not in any macabre or depressing way but it will cross your mind. For me the pasts are vaults that I open as and when it pleases me. I do not dwell on the positives or negatives of it….I only remember what I want .
What I remember most of the past are the good and memorable times with my wife and children. Driving for thousands of kilometers across the Nullarbor desert from Perth to Adelaide and then on to Melbourne and then back to Adelaide again –all within a period of one week. The times we spend on my late father’s boat, Widuri, while it was anchored at Port Kelang – spending weekends on the boat - just the four of us. It was always when the four of us were together doing things by ourselves that are the moments that stands out in my memory. And I know these are the memories that I will think about in the last conscious moment of my own life….so hopefully I will die with a smile on my face.
Ask yourself what you will recall of your life as life ebbs away from within you. I have seen enough people die in front of my eyes to know that death is not easy for most people. For many there is fear in their eyes. For a few I see an acceptance of what is about to happen to them. I have not seen anyone go to their death with a smile…never.
But enough of speaking about death. I intend to celebrate life…what I have of it and what is left of it for me. And10.30 pm on a Friday night sitting beside my wife in St Vincent hospital is a good time and a good place to start. I am one of those people blessed with a life that I want and sharing it with the people I want. Amen.
Its now 12.02 am Saturday morning and I just got home. My wife have been sleeping quietly since 7.30 pm last night and no coughing until close to midnight - so I decided to come home and get some rest to ready myself for tomorrow. And so to sleep!