Tuesday 3 February 2015

cakap cakap : Living with Dementia. The quiet crisis that steals lives and tears at the hearts of families.


My wife, my son Zack and I have been living with dementia for the past two years. My wife is the one afflicted with dementia but we all live with it. It makes it easier for her with us being around and as far as we are concerned we will put up with anything to be with her. 

She will be 71 this year and I will be 68. We have been together from the time I was 21 – so do the sums and you see that we know all there is to know about each other - the good, the bad and the ugly!

These days there is less conversation between the two of us as dementia starts to intrude into that part of our life. My wife’s ability to manage her thought process and her ability to verbalize have become more laboured these last few months. Increasingly we have been reduced to using the universally acknowledged sign language for "approval",  “good”, “agreed”, “I am with you on this” etc etc…the “Thumb Up” . 

One thumb for good and two thumbs up for great! Whether one or two thumbs up, invariably it will done with a smile as our eyes lock in merriment at our present circumstance

  • Salmon fried with Egg Plant and Mushrooms gets an emphatic two thumbs up!
  • Going for drive with a stopover at the Central Market for a Seafood lunch of fried king prawns in crunchy batter - again an emphatic two thumbs up!
  • A sweater on cold Melbourne morning - one thumbs up!
  • And so on and so forth......

No thumbs down because life is too short for those kind of things in our life!

We go out for drives around Melbourne as often as we can. 

Invariably we start our drive through Collin's Street - which is to Melbourne what Jalan Tuanku Abdul Rahman (we old timers prefer to call it Batu Road) is to KL. Collin Street has only one lane for the cars to drive through on either side of the tram line. The tram takes three lanes and parking another two! Traffic is always at snail pace but this is our favorite street to drive through for time is on our side and the mixture of people, trams and shops from Prada  to Seven Elevens makes Melbourne what it now is - the most livable city in any part of the world. 


From Collin Street we go where our hearts tells us to go. 

For Indian snacks we drive all the way to Footscray where the Vietnamese and other Asians rules - there are more "Chinese looking" Australians here than in any other parts of Melbourne that we have been to. 

The esplanade in St Kilda is an all favorite "place to go" - a drive by the beach and a stop for snack at Maccas (as they call MacDonalds over here) has become a pleasant habit we intend to indulge in from time to time. 

All this with Neil Sedeka, Paul Anka, Elvis, Ricky much better can it get?

But there are also concerns.

We no longer go for our walks in the evenings because the physical effort of walking takes too much effort out of my wife to make it as enjoyable as it used to be. 

There is a constant effort on my part to understand what is happening to my wife: 

That when she will not swallow her pills it is not because she is being difficult - she simply does not know how to do so anymore.        

When she does not respond to my effort at conversation it does not mean that she loves me less...she hears me but her thought process cannot process what it is that I am talking about. 

She will say yes to almost everything....
  • Are you hot or are you cold? 
  • Have you had enough to eat? 
  • Are you tired?
  • Do you want to go to sleep?
  • Do you want to wake up?

We will have to make those decisions for her. We are getting quite good at doing so. Sometimes when I am tired it does take an effort on my part to get up and prepare dinner for her as I would rather sit and do nothing.....but so far her needs comes before mine. Ditto for my son - he has more patient for his mother than me for my wife. Between the two of us, my wife and his mother, is taken care of in the manner she is accustom before dementia robbed her of her ability to take care of herself on her own.

What does the future holds for us all? 

We will take it one day at a time. 

If I think too far into the future my heart aches for I know that time will not be kind to me and my son for dementia will take the person that my wife once was from us. But I am being selfish here for I am only thinking of my lot. My wife knows not what is happening to her. What we want to do is to be there for her and attend to her needs. When we do this....everything else will fall into place. 

Life is still good.  

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