Sunday 13 September 2015

cakap cakap...Hope for the best prepare for the worst!

8.30 PM Sunday night.

The physical ravages of dementia is palpable. It is relentless in its advance and physically debilitating in its effect. First it takes your independence, then your ability to do things for yourself and what comes after that is total dependence on others as all the things you could once do for yourself you can no longer do. 

Two days ago I was talking with a Carer that comes in twice a week as part of the transition care that St Vincent has put us on. Liz, that is her name, is, like my wife, Greek and in her early thirties. Over these last three weeks we have become friends - any one taking care of my wife as she does deserves our gratitude and our friendship at the very least. I asked Liz about the other people that she is also taking care of....some in the early stages of dementia and some already bedridden and unable to do anything for themselves. 

I asked her what would the coming weeks, months be like for my wife?

She said physically demanding for me and my son! 

Emotionally draining.

 She told us to hope for the best and prepare for the worst. 

The only good part of it all - as if there could be a good part - is that as the dementia takes over the patient, the patient is not aware of what is happening to her. So as long as we make sure that she is comfortable and be with her when she needs us - my wife will be OK!

Even now I still shake my head when trying to get my head around the situation that I am in now. 

At night when she is asleep I watch her intently and try to make some sense of it all. Often she stirs involuntarily and starts to move her hands around as if seeking mine - for you see we do a lot of hand holding all the time. Whether she is sitting down or in bed and even as she is falling asleep, I hold her hand - more to reassure me that she is physically close to me than to comfort her...but I think she also wants that reassurance that I am near her. 

But I know that when we hold hands it takes her longer to fall asleep. So it is a fine balance between comforting each other and leaving her alone so that she can fall asleep. I still have not got it right yet....but I will keep trying.

These days I have to bend down, enfold her in my arms and lift her up if I want her to stand. For the first few moments she will tremble and shake as she tries to stay upright with both me and my son on either side of her supporting her....and it is all I can do not to shed a tear as I hold her in my arms and feel her tremble and shake with the effort of trying to stand. After a moment we will prompt her to start walking...and walk she will slowly and hesitatingly with us guiding her to where ever we want her to go. 

Sometimes when she is comfortable and relax in her chair she will smile while looking my way. And when I see her doing so I will rise from my seat and go over and giver her a hug and tell her that I love her.....very much. She responds by giving a few light slaps on my face and much too soon her attention goes elsewhere again.

It's now almost 9pm and I must get her ready for bed before she falls asleep on her chair. If she does fall asleep on her chair then getting her into bed will be physically demanding for me and my son. So before she gets too drowsy we get her to her bed. So I must stop for now and maybe write some more once she is resting in her bed before sleep.

9.15 PM: 
It just took us ten minutes to get her into bed! No dramas and we did not have to change her diapers this time because she is still dry. Once she is in bed it normally takes her only a few minutes before she is in dreamland. I can already see her yawning away beside me in her bed. 

For me the most difficult part of caring for my wife is letting go of the wife that I once knew. She has lost a lot of weight and of course she has aged a lot these last two years after dementia came into our life and yet in all things she is still the girl I married in London many years back in the 1960's. Of course not being able to hold a conversation with her is frustrating but what I miss most is not having our moments together. Yes we are physically together everyday but yet we are not together because her mind is elsewhere....and I am left wondering if it matters to my wife if I was around her at all....but only for a moment..... because soon I know she will look my way and give me a smile...and that is good enough for me to know that she knows me ...still!   
Enough for now. I must try to do some writing for my blog.                 

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