steadyaku47

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Tuesday, 31 March 2015

cakap cakap...my wife, my life and dementia.

I sometimes do ask myself what the future holds for me? I ask myself if the life I now lead is fulfilling? Should there be more of life?

You see my life until about three years ago had been one where I did as my heart tells me to do. Never staying put in one place, in one city or even in one country for more that a few years. Never setting roots anywhere. Where I was living at any one time was home.

And where I went my family went with me. Money was never a consideration. I did not have money neither do I move to earn money. It was always about what I want to do and what I want to do was to move where ever and when ever my heart tells me to go - and mostly it was between KL and the cities in Australia : Perth Adelaide, Sydney and now, Melbourne. Shuttling between cities takes a certain kind of belief in one self - one that says that somehow, I will manage.

Going to or coming back to KL was easy for that was home to me and all it took was a few months before I am well and truly settled in KL. Australia was different for I always started at ground zero but having started at ground zero there is no other way but up - and within months we will have all that we need to make good of life.

Over two years ago my wife was diagnosed with Frontotemporal Dementia.

We were on one of our normal migration exercises - moving from Adelaide to Melbourne. We left Adelaide with all our things loaded on a rented truck and drove to Melbourne - with me, my wife, our son Zack and our cat Lea in the front cab. Previously in the weeks leading to the time we were to move I could see that my wife has issues with her memory and in doing things that she would normally do but I dismissed it as her being caught up in the preparation to move. It was while we were on that journey to Melbourne - (it took us a good part of the night and three quarters of the day) - that I begun to realize that something was seriously wrong with her. She had no idea at all of where we were heading to , where we were coming from and what we were doing in the lorry.

My first reaction was fear - fear that my wife was going mad even as we were traveling to Melbourne but fear turned to anxiety and then concern - great concern for her welfare. A few days after arriving in Melbourne I took her to see a Doctor and soon we knew of her condition. Since then my life is her.     

She will wake up when she has enough sleep. From getting her out of bed until she is ready to have breakfast I am there for her every step of the way - or should I say every inch of the way because I have to prompt her to do all that she needs to do from getting out of bed to sitting down in the right chair for breakfast to be served to her. And between my son and me we watch her, prompt her, guide her and hold her hand every time she moves around the apartment we have - and this we do until it is time for her to sleep. Once she is in bed I will be in the room with her either working on my blog or in bed with her holding on to her hand until she is asleep. I know she is comforted that I am physically close to her and holding on to her hand but in truth it is me that needs assurance that she still remembers me and wants me to be part of her life.

I am awake early every morning - usually by 6 AM. Between 6 AM and until my wife wakes up time is my own. These are wonderful moments for me because I know that my wife and son are near and asleep and I have time to myself to let my mind meander to where it wants to go. I say these are wonderful moments because I can sit there with nothing on my mind except to think of what I want to do for my wife, my son and myself. Nobody else and nothing else matters. Try it...no urgency, no stress, no appointments to go to, no appointments to make......you and time at a stand still...try it and you will be hooked for life.

But there are times when I ask myself what if? What if my wife is not unwell?  It has been almost three years or living in Melbourne and knowing myself this will be just about the time when I think of another place to call home, another city to go to or even another country. Am I contented with the situation I am now in? Having to care for a wife ill with dementia?

I have never been happier in my life. 

I am happy because the love and life that I have always wanted with my wife is the reality I now live in -  day in and day out. I am happiest when we sit beside each other legs intertwined under a blanket to keep them warm. We do not talk as my wife no longer can or wants to talk - except for a few words that she mouths every now and then. We communicate mostly through hand gestures - the one thumb up for good and two thumbs up for " I am OK and want for nothing". I am always asking if she is OK - much too often as she sometimes complains of me doing so  - but I cannot help myself. I want to be sure that she wants for nothing.

So sometimes early in the morning when I let my mind meander - like the Mekong river as it tries to pass through the delta - I do ask myself what the future holds for me in having to take care of my wife who has dementia? 

Surprisingly I look forward to being with her everyday even if all I do is to take care of her wants and her needs. Surprisingly I do not see it all as a chore having to clean, cook, wash and do all that any housewife will know have to be done in the course of the day to keep the house in shape. And contrary to what I had once feared - that of being at the beck and call to my wife for her every wants and needs - I can report in all sincerity that I am OK with it.

My hands are a bit rough having to wash dishes everyday  - the water here is not too kind to anyone who choose to do the dishes everyday. Nivea hand lotion helps.

I am begging to plan my meals a day in advance - this from a guy whose idea of a meal is putting a frozen butter chicken with rice package meal for 3 minutes in the Microwave -at then end of which I will have a hot delicious Indian meal. 

Taking frozen meat or fish to thaw for a meal many hours away is new to me. It is not yet a habit I do easily but I now know it has to be done or else my wife will not get a decent meal and my son and me will have to microwave a pie or some other frozen meal for lunch or dinner. Planning is the key to a good meal and when done well ensures that we all have a good meal.

So what is good about all this?

I have not yet found an answer to that. I just enjoy the life I have now. Life is good.