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Wednesday, September 2, 2015

Dementia.... having someone taken away from you while there are still physically with you.



The onset of dementia upon someone you love and care for takes you onto a journey that asks more and more of you as time passes by. Time does not give you respite from the relentless advance of dementia. It may give you understanding of what your love ones are going through and maybe a stoic acceptance of what you will be facing in the years ahead. Only love will be your friend and comfort as you see dementia take your love one away from you with each passing day. Only with love can you cope with the reality of having someone taken away from you while there are still physically with you.

It has been over two years since my wife was diagnosed with Frontal Lobe Dementia - that dementia that takes away your ability to tell your physical body and your mind to be the person you once were. Imagine being a witness to someone who starts to disintegrate before your very eyes and imagine, if you can,  that it is someone you loved most in life.

How many of you have looked at that someone and ask yourself what would you do if that person changed?

I still remember waiting for my wife to finish work at Selfridges from our London days in the 1960's just after we were married. Those were happy times filled with the exuberance of a just married couple still oblivious of what life would bring. The cold of the London Winter was not felt. The hustle and bustle of London we ignored to hurry back to our flat at Acton to get dinner ready and to spend time with each other.

Today we are still together but how times have changed people. Not always for the better but certainly more wiser and more accepting of things that we cannot change...dementia for one!

It is now just past 5 on a Tuesday morning. My wife is awake in bed but she is in her own world. She knows I am in the room with her but I do not know if she knows who I am. She holds my hand, looks at me and at times smiles when I smile at her but she is in her own world. I cannot enter that world. I can only be there with her and hope that she knows I am there. But that is enough for me to be happy knowing that she is not angry, sad or troubled by anything - be it pain or stress and neither is she in need for anything. We take care of all that.  I like to remind her when she is receptive that she sits there like King Farouk while I and my son willingly attend to her every needs....and when I do she will look at me intently and say nothing. Maybe sometimes there is a smile...more a smile of indulgence at my attempts to connect with her than a smile that understands what I have just said.

I have stopped wondering what she is thinking about. Stop asking myself if she is happy or sad because most times words simply confuses her. What matters is that she is comfortable and that we are around her to keep her company and tend to her needs. That is why we want her home with us - not in an aged care facilities where strangers looks after her needs. 

Who would be patient enough to sit beside her throughout every meals that she has? Who would bother if the TV program that she is watching is to her liking? Who cares if her feet are cold and that she needs to be moved every couple of hours to keep her blood in circulation to keep her well? I do and my son does.....not only because we care but we are family - and family takes care of each other. Please, for those of you who have loved ones in need of 24/7 care, be sure that you have family around them all the time. Only then can you be sure that they are well looked after.

I do not know what the future holds. My greatest fear is that I too will eventually need 24/7 care and be unable to assist my son in caring for his mother, my wife. That thought haunts me often for I know that for all of us, that time will come when age catches up with everyone of us. 

Remember that....age catches up with everyone of us....and when it does the only thing that can make our quality of life decent is the care our loved ones will give us...I know....I am living it now.  



         


cakap cakap....we could do with a little more help.


These last few months have been difficult.....physically and mentally stressful for me. 

I have made a decision to care for my wife who is ill with dementia in our home because for me there really is no other option I would consider. 

Her month long stay in St Vincent have made me become aware of how great that responsibility will be physically and financially because her condition requires 24/7 care - one that is usually available only in St Vincent. To have the same facilities in our home would require money that I do not have - in total over Aud$7000. That was why I did request for donations from readers of my blog to help us out. 

There have been some generous soul out there who have helped but I am no where close to what I need.

Last week I hit my five million mark for clicks on steadyaku47. I get a daily average of between 3500 to 5000 clicks  - and so when I posted my appeal for donations to help us get the things that I needed for my wife stay at home after St Vincent I was hopeful that if a few good soul out there who read what I write could help, we would have what we need in no time at all. 

Honestly it did not happened. I was disappointed enough to take the donation request down because I just could not see it doing any good leaving it on the blog.

Life is hard....not only for us but for many others too...and I do understand that -  but after much thought I want to try and make another appeal for help for those of you who do read what I write. 

The physical and mental part of taking care of my wife is not a problem for me - I handle it well. What I am unable to handle is the costs of buying the medical equipment she needs for her comfort, her safety and to manage her condition adequately at home. Without them it is not fair to care for her in our home....and I really really want her at home with us.

Can you help?   

 If you can help please forward what ever you can to my wife account in Melbourne

  • Loukia L. Hussein 
  • Commonwealth Bank of Australia 
  • Account Number : 065126 10165979
  • BIC / Swift Code : CTBAAU2S 

Or you can donate through Pay Pal on the right hand column of this blog. 

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My belief that there are enough of you out there who will help is undiminished because I know there are enough good people out there. If all of those who read what I write can send me a few ringgits each - it will be enough. In fact one of you did asked me if he could send me some Malaysian Ringgit through the post because it was expensive to remit money overseas and he asked for my house address in Melbourne. If any of you are thinking of doing the  same then do send what ever you can afford in Ringgit to :

Hussein Hamid

Unit 413 / 150 Brunswick Street.
Fitzroy 3065.
Victoria, Australia.

It would be much appreciated.

John F. Kennedy
“We must find time to stop and thank the people who make a difference in our lives.”
John F. Kennedy
For those of you who have made a difference in our lives....thank you so very much. 


Thank You.
e mail : husseinhamid@y7mail.com



 

Monday, August 31, 2015

Yes I am for BERSIH 4...but.....




steadyaku47 comment : Yes I am all for Bersih 4 tapi jangan guna photoshop lah! Don't do like Rosmah do lah! Is the above images a true reflection of the crowd there or not? I stand to be corrected but I think it is not! Camna?

cakap cakap....Life.


I am physically and mentally tired.Too tired to think and write. Too tired to do anything but to let my finger writes what it wants. And my first thoughts are of my late Father.

We were never the best of friends. His generation did things different from ours. There was always love and respect between us - and all was good for as long as I know my place in the order of things....which is we do things his way or it is the highway for me!

He prays in his room and what I did in mine was my business. If I was in his house and he was getting ready to go to the mosque for Friday prayers...it was understood that I would tag along.

When he was home we never have our meals without his presence. I never sit when he is standing. Never sit at a level higher than he is sitting. And when we are walking, unless he indicates otherwise, I walk respectfully behind him.

In the morning I will take the Straits Time and place it where I know he will find it and leave it there until he has read it first. And when he is about to leave for office or comes home from work, we, his children, would rush to take his briefcase from him and carry it to his car or into the house as the occasion demands.  

When he passed away many years ago the lesson I have learned most about life from him is this : First above all else is family. Then go do what you want with your life and be man enough to take what comes your way. He lived his life that way and I have lived mine the same way. We would have much to talked about if we ever meet again in whatever world that is out there.

I am physically tired too. After my wife stay in St Vincent I have now been educated by all those wonderful nurses and doctors there as to how to take care of my wife they way that she should be taken care of - the right way. Unfortunately the right way means that I have to relearned almost everything that I have grown accustomed to doing for my wife before St Vincent.   

For a start while it previously took around forty five minutes to get her up from bed to being ready for breakfast, now days after St Vincent, it takes only twenty minutes. But twenty minutes of steady physical effort to do so. That asks more of me physically than the previous forty five minutes when I could stop, rest and even have a cup of Nescafe if I needed one to wake me up during that forty five minutes.-

No such things now....because the longer any activity takes the more it stresses my wife - so when I start anything I do not stop until it is done. My back hurts, by legs aches and my physical self is a wreck....but over time I know it will only get better  as I get familiar with the new routine. The immediate rewards for me and my son is to see her happier and more responsive to the things around her. The other day she pulled the towel to cover her body as I was giving her a sponge bath on her bed.....whether it was because she was feeling a bit cold or she wanted to be a bit more decent is beyond her ability to tell me....but she did react to a situation that was bothering her! And that was a good thing as far as I am concern!   

As tired as I am now I still cannot sleep. It is now 11.30 pm and I never go to sleep until much much later as these are normally my best times to write. But as I have said earlier I am too mentally tired to write about the things happening in KL and elsewhere...so I let my mind meander wherever it wants to do. 

Right now I am taking five and going to the kitchen to make myself a cappuccino. Whether I come back to write some more is moot. So I take my leave for now.