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.
Tuesday, February 22, 2011
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.
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.
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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.
Sunday, February 20, 2011
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.
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.
Wednesday, February 16, 2011
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.
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.
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.
Sunday, February 6, 2011
Anthony's visit. Arthur sees his son.
Did I say Arthur has a son, Anthony, who has Downs Syndrome? Arthur often called him 'Ant'. Anthony lives in a community residence with 24 hours care, one of five people with intellectual disabilities who live in the house.
We had Anthony over for a couple of hour's visit today. It is the first in a number of weeks due to the hot weather. I gave him his presents which were still here from Christmas and cup of tea and lollies. He sat in Arthur's bedroom but did not seem to recognise him or even the dogs. I took him for a wander around the house and yard and he wanted to go out of the side gate. I assume he wanted to leave. He was sitting in a dining chair because there are no comfy chairs (no room) except the big lounge chair now, and l told Arthur I thought it might be a bit uncomfortable for him to be sitting for so long.
Arthur agreed and seem pleased to see him with his presents and drinking his tea and watching TV with him. I talked about the things I remembered, Anthony going to Barkuma's Coventry Road workshop, with us to the soccer matches at Elizabeth City Soccer Club and the dinner dances there. I talked about the way the house was, Anthony's big brown chair and then the green vinyl one I got him, the blue carpet and the venetian blind I always hated cleaning, Arthur's fitted shelves I took down to fit in a bigger TV when I painted the walls that time. I talked of bringing Chelsea home as a pup, and how we worried about how Anthony would react and then how they got on together so well.
When Anthony's worker came the really wanted to go and we couldn't get him to go to Arthur, who was in his bed, for a hug or handshake or wave goodbye. She said he must be tired and wanting to go back. I said to Arthur that Anthony must really like his home to want to get back to it and Arthur gave happy smile and said 'Yes'.
I said maybe he should have a shorter visit next time and that I still wanted to get Arthur into the wheelchair to go to visit Anthony's home.
I do not think Anthony knows his Father, this house, me or even the dogs anymore. I think Arthur did not notice as we covered it with excuses, and Arthur is more concerned with his son's welfare. Someone at the house told me Anthony has been diagnosed with Alzheimer's disease but I do not know they managed that, seeing 'he cannot talk, read or write' as Arthur has always put it.
I remember Arthur saying he could never explain to Anthony that his mother had died, when she passed away from heart disease in 1980, and that Anthony never again went into that bedroom. So maybe Anthony does remember, we can never know.
Arthur is relaxed about Anthony now he knows he is well cared for and happy. For years all his worry was when he died was what would happen to his son, Anthony? He hated him being in Strathmont Centre and wanted him in a house with 24 hour care. It was a blessing all round when the State government funded 10 of those houses to be built in the community and Anthony finally moved in to his new house in Salisbury.
I will have Anthony over again but for a shorter time and I will have his worker stay during the visit. Then Arthur can ask questions and Anthony will have someone familiar with him. When Athony was leaving the worker was nice, she must have seen I was fighting back tears. I said it was good to see Anthony even though I felt like saying "I have looked after these two for 29 years and I am seeing us all get old."
Arthur has seen his son and appears happy. He is getting on with watching the Perth One Day Cricket International between England and Australia.
I hope England win.
We had Anthony over for a couple of hour's visit today. It is the first in a number of weeks due to the hot weather. I gave him his presents which were still here from Christmas and cup of tea and lollies. He sat in Arthur's bedroom but did not seem to recognise him or even the dogs. I took him for a wander around the house and yard and he wanted to go out of the side gate. I assume he wanted to leave. He was sitting in a dining chair because there are no comfy chairs (no room) except the big lounge chair now, and l told Arthur I thought it might be a bit uncomfortable for him to be sitting for so long.
Arthur agreed and seem pleased to see him with his presents and drinking his tea and watching TV with him. I talked about the things I remembered, Anthony going to Barkuma's Coventry Road workshop, with us to the soccer matches at Elizabeth City Soccer Club and the dinner dances there. I talked about the way the house was, Anthony's big brown chair and then the green vinyl one I got him, the blue carpet and the venetian blind I always hated cleaning, Arthur's fitted shelves I took down to fit in a bigger TV when I painted the walls that time. I talked of bringing Chelsea home as a pup, and how we worried about how Anthony would react and then how they got on together so well.
When Anthony's worker came the really wanted to go and we couldn't get him to go to Arthur, who was in his bed, for a hug or handshake or wave goodbye. She said he must be tired and wanting to go back. I said to Arthur that Anthony must really like his home to want to get back to it and Arthur gave happy smile and said 'Yes'.
I said maybe he should have a shorter visit next time and that I still wanted to get Arthur into the wheelchair to go to visit Anthony's home.
I do not think Anthony knows his Father, this house, me or even the dogs anymore. I think Arthur did not notice as we covered it with excuses, and Arthur is more concerned with his son's welfare. Someone at the house told me Anthony has been diagnosed with Alzheimer's disease but I do not know they managed that, seeing 'he cannot talk, read or write' as Arthur has always put it.
I remember Arthur saying he could never explain to Anthony that his mother had died, when she passed away from heart disease in 1980, and that Anthony never again went into that bedroom. So maybe Anthony does remember, we can never know.
Arthur is relaxed about Anthony now he knows he is well cared for and happy. For years all his worry was when he died was what would happen to his son, Anthony? He hated him being in Strathmont Centre and wanted him in a house with 24 hour care. It was a blessing all round when the State government funded 10 of those houses to be built in the community and Anthony finally moved in to his new house in Salisbury.
I will have Anthony over again but for a shorter time and I will have his worker stay during the visit. Then Arthur can ask questions and Anthony will have someone familiar with him. When Athony was leaving the worker was nice, she must have seen I was fighting back tears. I said it was good to see Anthony even though I felt like saying "I have looked after these two for 29 years and I am seeing us all get old."
Arthur has seen his son and appears happy. He is getting on with watching the Perth One Day Cricket International between England and Australia.
I hope England win.
Tuesday, February 1, 2011
Heatwave. 48 Celsius in the Sun.
It was 48c degrees in the sun in my backyard on Sunday. It was so bad that it stuffed the thermometer. I thank the stars that I decided to put in a new air-conditioner last summer. Arthur kept cool and I made sure he drank lots of fluids. He went off his food, though.
I got a call from a lady from the Italian nursing home about my appointment to see the day respite program. I canceled the appointment as I didn't want any unnecessary travel away from Arthur in the heat. I told her I would call to make another appointment. I shall not hurry as I do not think their program will be suitable.
Savvas Cottage sent their forms and I will be doing them today. I know Arthur would just like to be left to be in his house but I do need some respite. I make decisions about going out and leaving him while I go to the shops and suchlike. He knows the risks which I reduce as much as I can. I turn off all power points except the fridge/freezer, his TV and air-con. I even turn off computer power points too. I leave his walker so he can get out of bed, which he could do if he had to, in an emergency. I make sure his emergency button is around his neck and my mobile number is on redial. Also he has my mother's number. (My Mum is not up to sitting in with him, with her health.) And the four yappping dogs will keep anyone out It is not ideal but it is the best I can do. I don't know any neighbours well enough to ask them to sit with him.
We talked about this, Arthur and I. To be perfectly safe and have 24 hour care, he needs to be in a nursing home. He will not go into a nursing home and I do not want him to, so some risk will always be there. I cannot provide the same level of care, supervision nor attendance that he would get in a home. He can only get the best I can do, as one person. So we balance the risk, and hope it turns out alright. It does not stop me worrying every time I go out, nor Arthur wishing I was home with him.
So I need the respite. I wish it could be in-home but there you go, beggars cannot be choosers so they say and in the aged care industry, the clients are definitely the beggars.
I got a call from a lady from the Italian nursing home about my appointment to see the day respite program. I canceled the appointment as I didn't want any unnecessary travel away from Arthur in the heat. I told her I would call to make another appointment. I shall not hurry as I do not think their program will be suitable.
Savvas Cottage sent their forms and I will be doing them today. I know Arthur would just like to be left to be in his house but I do need some respite. I make decisions about going out and leaving him while I go to the shops and suchlike. He knows the risks which I reduce as much as I can. I turn off all power points except the fridge/freezer, his TV and air-con. I even turn off computer power points too. I leave his walker so he can get out of bed, which he could do if he had to, in an emergency. I make sure his emergency button is around his neck and my mobile number is on redial. Also he has my mother's number. (My Mum is not up to sitting in with him, with her health.) And the four yappping dogs will keep anyone out It is not ideal but it is the best I can do. I don't know any neighbours well enough to ask them to sit with him.
We talked about this, Arthur and I. To be perfectly safe and have 24 hour care, he needs to be in a nursing home. He will not go into a nursing home and I do not want him to, so some risk will always be there. I cannot provide the same level of care, supervision nor attendance that he would get in a home. He can only get the best I can do, as one person. So we balance the risk, and hope it turns out alright. It does not stop me worrying every time I go out, nor Arthur wishing I was home with him.
So I need the respite. I wish it could be in-home but there you go, beggars cannot be choosers so they say and in the aged care industry, the clients are definitely the beggars.
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