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Lost and isolated

A page in the diary "the carer got sick - no help for them"
Written by Faye Saturday, 3 July 2010 04:04

Every day a bit more of my beloved Jim goes missing, we went into work today and he wandered around like a lost child, this is the business he built from nothing, and now he does not know where he is, he does not talk much now he is afraid of aking afool of himself. I was in the top office looking down at him through the window, and he looked so lost, as the tears welled up, I fought again the anger and sorrow that seems to be my constant companion. This incideous disease and the ignorance of people bring out so much anger and pain within me. My daughter, usually so stoic, broke down last week in front of her father, and I have to sit there with a brave face, all the time wanting to scream at the injustice of having our lives so cruelly ripped apart. I am losing my soul mate, my love, bit by bit everyday, and the cruelest part is that he is so very aware of what is happening to him. He is becoming more and more reliant on me, and I no longer have lunches with friends (not that I/we now have any) or time on my own as he is my shadow (he can't help it he is scared of being alone). I long to have a girls day out, a haircut without Jim sitting beside me,or lunch but the guilt that I have in leaving him is unbearable, as he is so distressed even at the thought that I may not be there for a moment. Oh the doctors have told me to take care of myself, take it easy, but they have not walked in my shoes, NOTHING prepares you for the reality of Alzeimers, NOTHING!!!!!! Many play lip service to us carers but when push comes to shove they don't care, we are saving the "system" heaps of money because of our dedication and service it our loved ones at our peril, yet there is so little help out there in reality - just band-aids on a gaping wound.

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Comments from the community :

Yes,you are so right. Ray and I went to a Dramafest today to help out with staffing the serving area. I did that, Ray sat in his wheelchair in the corner and looked around him. That is what he does. Several of the club women, well meaning, loving and supportive people said: "Sue it is time". They know that looking after him with his physical and now mental problems is too much for me, I know it is too much for me, he probably does too. But he and I have been together for 42 years now.

Faye, you have to decide at some point where the future lies and what you will do when you get there. In the meantime just go on from day to day, making each day you spend together count for something. Forget friends, freedom etc, concentrated on what you can do, not what you can't do and you will find acceptance somehow of the situation you find yourself in.

Remember the saying: "What can't be cured must be endured". We can cope but it is only possible if you are strong,so we have to make ourselves strong. Only those who really want to keep their loved ones with them understand what you are going through. Keep courage my friend and you will be able to keep going.

Sue.

Written by  suew, Saturday, 3 July 2010 23:32

Hi Faye
We have just formed a Younger Onset Dementia Assocation Inc to try to help people like yourself. Our carers in NSW have told me that the health professionals they deal with can only talk about the medical details, not the reality of life whilst living with a person with younger onset dementia. My battle to get funding for programs for our carers in the last 3 years has highlighted the fact that decision makers arent even really aware the younger people get dementia - everyone still thinks of 85 year olds when they think of dementia.
Our new website is www.youngeronset.net if you would like to take a look.

Written by  alisone, Wednesday, 14 July 2010 12:36