CDC - not yet.

My interview with the provider about CDC was informative but unproductive as the only packages available were for low care. We have been put next on the list should a high-care CDC package become available.

Consumer Directed Care

Yesterday a service provider I talked with a few weeks ago rang to tell me they had some consumer directed care packages coming from the Commonwealth Government.  The lady will get a copy of Arthur's assessment and see if this may be suitable for us. She also sad another provider had one, and she will contact them as well. I spoke to our present agency but they do not do CDC packages but they were very supportive of me finding out more about them. I am waiting for a call back.

Crunch Time

The doctor rang and told me Arthur's pneumonia is better and he will be ready for discharge soon. The problem is that Arthur is so frail he needs to go to a nursing-home, and he does not want to. Arthur told them to ring me. I said Arthur was coming home - no ifs, no buts, no nursing home.

I asked about the TCP program to get him conditioning to improve his mobility, but the doctor said the physiotherapists concluded that he is not suitable. He is not strong enough anymore and he won't benefit from it, they said.

The doctor said they could not discharge him to go home but Arthur could discharge himself, so I assume this is to do with liability issues. I am going in tomorrow morning to talk to the physiotherapist and the occupational therapist. I talked about it with Arthur and I asked him to consider where he wanted the hospital bed, as he would mostly be using that, as it was the best for me to look after him. He said he would think about it.

I was shocked because the social worker talked to me about the TCP program and I thought that Arthur would do it and get back some mobility. I have to face that fact that Arthur has gone down another level and there are not many more left to go.

I am hurting, hurting, hurting. My soul feels as if it has toothache. I am fighting to hold back grief so that I can be positive for Arthur. I have been so sluggish since he came home in November. It is as if I wished to slow time. I need to find the energy to do the things I need and want in whatever time we have left.

Dear God, if you be, be with us.

American Vintage Cars and a Day Out.

Sunday was a glorious Summer's day, not too hot, but bright and cheerful. The American Car Clubs put on a show of their vehicles on a sporting oval and I paid my seven dollars to have a look. My son was supposed to be coming with me but he wouldn't get out of bed, more fool him.

The cars were spectacular, as only huge classic American cars can be. Everything from Model T's  and Ma &Pa Kettle's old farm truck, through Caddies and Chevrolet (including the stunning Corvette), stretch limos, pick-up trucks and more. I half expected James Dean or Marilyn Monroe to appear at any minute.

There must have been nearly 2000 of them and the gorgeous paintwork, shiny chrome, plush interiors., and space-rocket themed fins and tail-lights were incredible. If big was good, bigger was better. I am not sure how they would handle, though. I cannot see me taking a crisp corner in one of those; definitely cruising cars they are.

It was strange wandering around on my own. I enjoyed the outing but the beauty and light around me was surreal, of some other-world where I briefly wandered for a time. I felt the gossamer touch of a grey curtain of grief, which floated behind me as I walked. I also felt the non-presence of my husband and my thoughts flew to his side in his hospital bed, the days of him walking beside me to explore new things and delight in small discoveries now past.

I struck up conversations with strangers, hungry that I am for friendly light banter and human contact. It was easier than I thought, the hardest part being to judge when to cut it off and move on. Enough time to discuss a couple's vehicle and to share a story of the old one-cylinder car my mother used to drive in Blackall as a young woman, and to read the loss of interest in their eyes before I move on. I did not want to be seen as a slightly nutty and needy old woman, pestering others for human contact as a starving dog hangs around a camp hoping for a scrap of food. 

It struck me that I was practising being single. When I am widow, this will be me. Not for two hours or  day or a couple of weeks while Arthur is in hospital. It will be for the rest of my life.

Because of our difference in ages, I am used to doing things without Arthur, going it alone. For example, he never liked the cinema and mostly I liked to go without others interrupting my experience of the film with idle chatter. In contrast I loved to go with Arthur to live shows. I went to university and all its events without Arthur as that was my world, or outings with girlfriends, or alone. I can eat in a restaurant alone and feel no need of a companion. My traumatic, semi-nomadic early life probably made me some what of a loner, making me feel as though I was apart from others.

Arthur and I shared other things, intense local football (soccer) matches, dining out, taking my children to shows and on outings, staying in the caravan by the sea or going to the beach.

The loss of these shared experiences was hard. We both miss them and memories, while sweet, hurt. I walked around the cars and took pictures, but I did not tell Arthur about it, for fear of making him feel left out and incapable. That is what your life together comes down to, the things you experience, the sharing. I treasure the sharing of this end-time of his life. It is a rare privilege but one bought with emotional pain.

The Piper must be paid.

The outing to see the American cars was a good. At the end I got into my little HR V Honda, did a neat little u-turn past stunning long and wide vehicles and gave thanks that, through their interest and passion, people were adding beauty to the world, to me one of the most worthy pursuits.  

I might talk about it to Arthur after all and show him the pictures on my phone. That way we will still be sharing.

Arthur is looking better.

Arthur is sitting up and eating and drink, and watching the tapes of the football games. I notice he is not eating much, man only drinking soup and thickened milkshakes. I am worried he may have had a slight undiagnosed stroke recently.  I will talk to the doctor about it.

I think I am in some type of grief. I am in a deep gloom, I cannot get motivated to do anything and even leaving the house is difficult.  My whole world is grey. I worry that I am not happy enough to help Arthur.  Maybe I do need to follow -up the counselling sessions the Carers Association arranged for me.

So frail, so vulnerable, but I love him.

It is enough to break my heart, to see him lying in his hospital bed, so thin, so frail. Arthur is talking, he is eating vitamised foods and drinking thickened fluids, but he is so far from the strong and resolute man he was. He still has his sense of humour and quickness of mind, but he knows what he has lost. He laments never again drinking a bottle of beer, tipping his head back to enjoy a cold ale, when he sees the young men in the advertisements in the cricket telecasts on television. A small glass, tentatively sipped is not a man's way. Mind you, Arthur  was no great drinker of alcohol, and would like as not have me make an ice-shandy of beer and lemonade in a frozen glass the way I always made it, when the day was hot with the glare of an Australian Summer.  

I see bones with little muscle barely able to hold him up and hands that shake when holding a spoon. Arthur no longer reads, even though he only read one book in his whole life, a book about a soldier in World War One. I see his eyes are still the beautiful blue I love so much. I want to bring him home, to me, his dogs, his big TV with his football especially Manchester United, the three things most important to him now.

Arthur told me last week he would be leaving me soon. I said he wouldn't, the doctor had checked him over and he was still healthy.  I said to him that we must make this time be as long as possible, that we must make the best of what we had. He said, "I love you." I treasure that.

I am bit numb still. I have not been stricken with great grief; maybe because it is the background to my life, the hum just in the hearing, that fills any silent space.

Words cannot describe my love for this man or even why it exists, beyond all understanding. I will take him any way I can, frail, aged, needy, dependent. I will give him what he desires, to be at home for as long as he can, with us, his wife and his family of dogs.

This man is my husband, I am his wife. We belong together. We love each other.

I love him.

Arthur has pneumonia.

Arthur is in hospital, diognosed with pnuemonia from respirating food or fliuds. He was breathing shllowly on Monday so the nurse from the service provider called the ambulance for me. He is on antibiotics now, and is eating and drinking fluids so he does not seem in any danger.


I called the doctor out twice last week, and the ambulance for the paramedic to check hm out because I was worried about him. He was having difficulty walking, was not eating enough and or drinking enough fluids. He must have been developing pneumonia but showing no signs, not even a raised temperature, becasue they did not find anything to be worried about.

The Lyell McEwin Hospital is very impressive and all the staff seem to be on-the-ball. he is in a single room and the nursing staff are very good.

I am very flat emotionally and I am having trouble getting myself going to do things. I will be visiting him later and I hope to find him resting comfortably.  This will probably be a week or so hospital stay for him.