Saturday, December 31, 2011

Last Day Of 2011, My Last Year as Arthur's Wife.

I say goodbye to 2011, and I say goodbye to Arthur, for the first time. Goodbye, my Husband, goodbye our Earthly life as husband and wife. I loved you then, I love you now, I love you forever.

In the turmoil of grief this record stopped on 18 July 2011 because on 19 July 2011, the unthinkable happened. Two of our beloved dogs, the litter-brothers Ajax and Stamp, got out of the yard. Despite my desperate searching, I have not found them. The grief of their loss, the broken promise to Arthur in his final hours of life that I would care for our dogs, the endless fruitless search, has sapped me and brought me to the brink of total despair, and pitched me into endless pain.

I am still staying with my Mother. I have not the energy to move out. I know I must put my grief on hold to search for our dogs or I am useless to them. I know their Mum and Dad, little Chelsea and Trafford miss them terribly, as do I.

When I asked and prayed and cried to Arthur for help in finding them, and he was not able to help me, I knew finally how alone I was. I think his eternal energies are for keeping them safe and being with his son, Anthony. With his Downs Syndrome, Anthony sadly has dementia, and he is now in a special purpose nursing home run by the government for people with intellectual disability. It is a good place but I see in Anthony that failing strength I saw Arthur go through, though without any dementia. I know Arthur needs to use anything he can from Heaven for Anthony. He knows I am strong.

I miss Arthur like the heart misses blood.

Each morning, in the haze between sleep and wakefulness, my first thought is a prayer for the soul of my beloved Arthur, and the second a prayer that this be the day I find Ajax and Stamp.

Christmas Eve was too sad to write about until now. I always lit candles and by their light Arthur and I ate Arthur's favourite treat, fruit mince pies and drank  a glass of port wine as we listened to Christmas Carol records, with our dogs sitting next to us. In preparation I always decorated the house and set the Manger scene under the tree and a Star on top.

I would join in the carols and Arthur would hold me. It was a time for just him and me and our dogs with love. Christmas Eve was our special time together.

This year my Mum visited my brother on Christmas Eve. I was alone, with Chelsea and Trafford, and Mum's little dog Shep. I lit the big lavender candle that was at Arthur's funeral service. I found two fruit mince pies and a tiny glass of Scotch. I put on carols on You Tube with the laptop, the ones we always listened to. I held Arthur's suit jacket, the one he always wore on ANZAC Day with his medals that I had sewn in place many years ago. I sat Chelsea and Trafford with me, and just remembered.

I remembered the Christmases past, Arthur's smile, the children opening presents, Xmas dinners at restaurants for us all, baking for Xmas, decorations, trees, his arms about me, his kiss and the way he said he loved me.  I remembered holding him when he was too weak to hold me, and the last Christmas in 2010 when I sought the best seafood, Alaskan Crab, prawns and oysters, cold meats, salads and ice-cream, all set in a tempting cold buffet.

My Mother, my son Jason, Arthur and me, enjoyed a lovely informal Xmas lunch. Jason hooked up the laptop and I located You-Tube videos from England. Arthur saw his home town of Brightlingsea, historical videos of Manchester United Football Club, and many other things he was amazed and happy to see. It was a magical, special day, the last we Christmas we ever shared together.

This Christmas Eve I held his suit jacket to my breast and cried out the tears I have held back since the day he died, or at least some of them; the others are still behind the dam wall, that is flood I too much fear.

The year 2011 ends, a part of my life ends. I go from wife to widow and happiness has died within me.  The clock moves on and drags me with it, away from my old life, into the one I do not want.

The only happiness for me now is to find Ajax ad Stamp.

May 2012 bring that comfort.


Monday, July 18, 2011

The Mysteries

Yesterday was the 17th of the month and I spent it with my Mum. In the shower, of all places, I prayed for Arthur and asked God to care for him, and to let Arthur know I still remember him, and that I am trying hard to get on with life. I said I was sorry I did not care for him better, that in the last days I did not spend every minute with him that I could, that I got too tired and that I was not always there when he wanted me to be. I asked God through Jesus Christ to care for Arthur.

I thought about life and death, and the fear I have that my religion is wrong and there is nothing after death. It is the logical and scientific way, but it is so final and frightening. I do not understand how it can be though. It does not make sense that something as complicated and mysterious as life can just stop and all that we think and understand just stops. We must, I believe, transcend our bodies, because we are more than our body, which is limited in its existence. There are Mysteries to which we mere mortals aspire but cannot know fully in this life.

So my understanding is that Arthur is beyond my earthly reach, but I am not beyond his, that he has an awareness of me, but he is in the light of eternal love.
It does not dampen my longing, though. I long to go home, to go back. I am two calender months from when Arthur died, and my grief is still a frightening lake of dark water. If I go in too far, I cannot see the bottom and the other side is shrouded in mists. I fear I will float across the water, bobbing up and down as waves engulf me, and never see the shore again.

I could grieve and grieve and grieve until there is no more to be wrung from my wretched soul. What happens then? Where is Arthur in my life if I am not grieving for him?

Dear God, I miss his touch, his voice, his smell. After Arthur died, when I took the pillow from under his head, the little cylinder-shaped pillow he always asked to be put under his neck, it was warm with the last warmth his body ever shared. I held it to me and cried to the nurse. "It is warm, when it is cold he really will be gone."

I want to feel my husband's warmth next to me in my bed. I long to hold him close and feel his skin on mine, I long to touch him and hold him. I want to hear his strong heart, the heart that just kept going when all of his body was failing around it, the heart that loved me so.

Love is a Mystery.

Friday, July 15, 2011

Written on March 7th 2011, Arthur's Last View of the Sea.

The physiotherapist visited today. As she only is on-site on Monday's, this is the first time she has been able to assess him. Up until now Arthur had been in bed, as the hospital report suggested he was too weak to bear weight.

She is very good, we massaged Arthur's legs with a heat-rub cream and moved them around to warm up his joints. With the help of another care-assistant, Arthur was able to briefly stand, before sitting back down in a wheelchair. He stood up three times before finally laying back down on the bed.

The physiotherapist advised that Arthur would need to be transferred by a hoist for a the first week, to get his body used to assuming various positions and bearing the weight-transfers. They got him up and out of bed with a hoist and body sling, into a Princess air-chair. Arthur sat in the front day room where he could see the ocean. This must be the first time Arthur has seen the sea in at least five years.

He seemed very comfortable in the air-chair and went to sleep. Later I took him onto the front verandah which overlooked Semaphore Beach. A warm day with a cool sea breeze, the sun reflected off the slight choppy water like a million mirror shards tossing on the surface. The air smelled of salt and, while he slept beside me,  I listened again to Arthur's voice in my mind, "There is nothing like sea-air, it does you the world of good."

I suppose now that is how it will always be, the voices of the ones who are gone will come back, a scene, a sound, a smell, I wonder for how long that will happen. Always, is my guess. We used to go to those lovely beaches in Adelaide, including, in past years, the famous Maslin's Beach, not the ordinary end, but the bit way up the end of the cove, accessible by either a long walk along the sand or about a half-mile of winding wooden walkways down the cliffs.

We would get to the sign warning of imminent entrance to the Unclad Beach. Down in the sparkling white sands and beautiful water. At at last we could be free of all trappings and swim as free as dolphins, and sun-bake amongst people for whom modesty was the ultimate practice, where you see but do not see and the body has no sexual meaning. I have never felt safer, freer, more respected or happier than on that beach, as natural as the surroundings we enjoyed. This was a precious gift Arthur gave to me.

I am sitting with him now on the verandah and the breeze is gaining strength, and Arthur saw the clouds on the ocean's horizon and told me that a storm may be brewing.

You can take the sailor out of the sea but not the sea out of the sailor!

I can see that the grasses on the sand-dunes, planted to stabilize them, are well grown and look hardy. The Lags Jetty just up the street is one Arthur took me and my children to a number of times and, I would love to take him back there. If I can get his electric wheelchair here, I will try that, maybe with Jason to help. It would be a short ride down the street to get there. If Arthur ever has to go into a nursing home, I want it to be one like this, by the sea, but I hope it never comes to that.

Watching the ocean is so relaxing. I wish I had the wealth to be able to put Arthur into somewhere like this for a couple of days a week, regularly.

As I watch the sea my best friend's words come back to me. Having just lived through the trauma of putting her mother, who has dementia, into a nursing home, Jill reminded me that what is happening to Arthur is natural. It is part of life.

The oceans are also natural, the tides come and go, and never stop.

We cannot halt them, we can just take into our self the solace and comfort they provide.  

Thursday, July 14, 2011

Sandra, he always called me SAHn-drAH.

My best friend helped me out when I was feeling low. Jill is a wonderful friend. I give thanks for Jill, my friend,.

This sad time has opened big emotions for everyone. For my middle son, he suffers the effects of emotional trauma, for his two brothers, anger. They turned on him and castigated him for his faults, of which he has quite a few. There is no doubt his faults, which stem from his sad feelings, low confidence and self-centredness, impact on the rest of the family. However, the others were not here to see him rise to the circumstances, in ways which they did not. They shied away from the sadness and tragedy that unfolded, and my middle son bore the brunt. My daughters too, I kept most of it from them. My eldest daughter had already broken contact with me four years ago so there was nothing to say to her and, anyway, she lives overseas. For my youngest, I needed to shield her from it, and as she lives interstate it was easy to tell her little.

My other two sons spent this last weekend in furious electronic communication with me, trying to get me to drop my middle son in favour of them, citing his behaviour, The eldest son did some distressing things, including distributing photos of my middle son's messy house. It was messy in part because of the trauma of the burdens of the situation, and his brother's action caused great embarrassment and hurt. I helped my middle son to start seeing a counsellor, and just as he was starting to make progress, he was traumatised again by his brothers' rejection.

My Mother is shocked at my two sons' behaviour and tells me to ignore them until they wake up to themselves.

Neither of those two of my sons seem concerned with my immediate welfare. They think my long-term prospects are better if I am not trying to help their brother, but all they did was hurt and traumatise me. It unleashed a wave of grief and loneliness which took me days to control.

I am still fragile. I miss Arthur, I just want to hold him again. I want him to talk to me again. I want to hear him say 'Sandra' in that High English or Italian way he always did, "SARn-drAH'; Sandra and Arthur,

I am tired. I have withdrawn from my university subject and I will take it up later,

For now, I need rest.

Sunday, July 10, 2011

Is it better to fight against a sea of troubles...

I feel so bad, that if it wasn't for the dogs, I would rather join Arthur than go on.

Wednesday, July 6, 2011

Sons and Daughters

I visited my eldest son on Sunday, July 3rd. He made dinner for me, and we went out and walked his dogs. During the walk I spoke to him of that last day with Arthur. He was in Victoria on a job when it happened. He has been distant during this time, and even on Sunday he was more into solving practical things than giving me any emotional support, He seemed to shy away from anything emotional, which I understand. But it did make it plain to me that I no longer had someone who would put their arms around me and hold me, or tell me it will all be okay. I just wanted a hug. I wanted to get into the car and go to my best friend, just to get someone to comfort me. But I know I need someone like my son to think of the practical things too.

This week the local housing agency came and fixed the light switch in Arthur's place. He was waiting for months for them to do that, also to paint his bedroom. His windows and doors needed fixing and again, they didn't come. He always paid his rent on time too, for over forty years in the one house. That disappointed me, though they did put in a ramp for his wheelchair. Arthur would not move into my house, I wish he had, for I am sure I could have looked after him better there, but he wanted us to be in his place, so I respected that. It is hard though, because I have to let it go, the place where many of my memories were formed.

My second son moved his catamaran today, and this caused an argument with my eldest son, over the trailer. I am sure they will work it out tomorrow but truly I do not have the energy for my offspring's squabbles.

I have thought a couple of times that maybe soon I should have Arthur's ashes interred, but I am not ready yet. I had his funeral service too soon for me, I was not ready, but my children, or at least my daughter and youngest son pushed me into having it only seven days after Arthur died. They said I needed to get it over with and they could not stay, as they had return flights and jobs they could not be away from for too long They thought they were helping me, but it was not the case. In the end only my middle son went with me to the funeral service, so the others may as well have left me to have it in my own time. 

My middle son says he stills cries himself to sleep at night, and he is getting help from the doctor.

This has affected us all, in different ways.

Saturday, July 2, 2011


Six days ago, I stood in our old bedroom, so empty but for the bits and pieces strewn around, left after the removal of the furniture. I said 'thank you' to the house, to the room, for sheltering us. And then it came upon me, the waves and waves of memories; the sights, sounds, smells, words, touch, love, anger, laughter, desire. Longing tore at my soul.

I wept as I had not wept before, and memory held me hostage to my pain. I saw again every detail. I felt his touch, his voice. I heard my voice. I saw our dogs, I felt the air, the heat of summer, the cold of winter, the intimate touch of husband and wife, the caress to soothe pain and distress; his to me and mine to his. All this and much, much more cascaded from my memory, as clear as day and yet as distant as the fading moon that shone on our wedding night.

My blessing and my curse I name it, that so easily I can bring it all back, and it is very nearly real.

Friday, July 1, 2011


My son JD assembled his new bed today. I am happy to see him making progress and moving forward. We discussed some of the things we had been through. He said now when he sees old people on TV, he sees them so much differently.  He can see how frail or weak they are and he knows they have not much time left.

I said it was gaining more understanding of ageing than we ever wanted to have, and he agreed. He said one thing he learned, that someone getting slowly weaker and then dying like Arthur did was something he would not wish on his worst enemy.

JD was the only one of my children closely involved with helping Arthur and me, as the rest live away. I also did not burden them with my troubles, but JD and I have shared an intense life experience. It is even more remarkable because JD did not even very much like Arthur, differences in temperament being as they were.  That is what makes JD's effort so remarkable. It is one thing to do this for someone you love, it is another to do it for someone whom you do not.

JD wrote Arthur a letter and put it in his casket. I do not know what it said, but I know JD had great compassion for Arthur and I hope it helped JD.

JD also was a great comfort during the service. I know this all took an emotional toll,on him, but his character has shown through in all this and I am so very proud of him.

Friday, June 24, 2011

The Luxury of Tears.

Two days ago, I felt an internal shift. I had this tiny calming feeling, that Arthur was with me, in some way. I do not know if it is real or the result of my mind, desperate for relief, tricking me into thinking it is so. It was nothing dramatic, just a feeling that all was not lost, that Arthur knew what was happening to me. Is my psyche finding a way to care for me, or is there actually a link with Arthur, a thread so fine only a distant echo of our lost connection can traverse its span? I do wonder.

Today is one calender month since Arthur's funeral service and I have not contacted the director about interring his ashes. I am not ready yet, for that.

I applied for a part-time job this week. Arthur left me some money but I cannot stay out of work for very long. My children suggested I retire and they give me an allowance. I told them they need to save for their old age as having funds makes all the difference to quality of life.

I tell Arthur what I am doing,sometimes, am I being silly? I hope Arthur is with God. I fear the atheists' idea that death is the end;  it is a horrible thought.

I am keeping grief at bay, I tell myself not to give in to grief and I hold it off. I am not weeping all the time. There was a time when I could weep and there was someone there to comfort me. His arms would encircle me and I could cry my hurt into his shoulder, when the relief of tears was my privilege. Arthur is not here to do that for me anymore and I am afraid to weep alone.

Sunday, June 19, 2011

Driving Home

My friend's birthday dinner was nice, with about a twelve people attending. Her mother and sister were there but her mother has early stage dementia and my friend's sister took her mother home early. My friend's Mum remembered Arthur and said he was a lovely man. I appreciated that.

I enjoyed the company and especially I enjoyed talking to another couple who had a Tenterfield Terrier. We spent some time showing each other dog photos on our phones.

I stayed overnight with my friend and her husband. I sometimes did this over the years. I would stay the night because of the laws about driving and drinking alcohol. Arthur would always be glad when I got back. I would ring to say I had had a couple of drinks and would be coming back in the morning. He would get a bit short with me and not be too pleased about it, but when I came back next morning (or sometimes after lunch) he would be at first a bit grumpy. Sometimes I got a bit upset too, but mostly he was just glad to see me. Of course this was before he got sick and needed me to care for him. While he could still get out of bed and look after himself, I would be away for some hours, mostly with my son to do things.

As Arthur became frailer I could only be away for a couple of hours, while the workers were there. I once took a puppy to someone down the coast and was away for about six hours . He was alright, and I had made arrangements with my Mum for her to be on standby if he needed her but everything was alright. I felt bad about leaving him alone for that long. Now I wish I hadn't gone, because I rue any feelings of loneliness that Arthur had. However, Arthur was glad the puppy went to such a lovely home, with an older couple whose old dog had passed away.
In the last months I would just go out while the workers were there, down to the shops. There were even doctor's appointments I never attended, and if any of my family or friends asked me to anything I would say no. I told the Terrier club I could no longer help with fund-raising days anymore and I stayed in the home with Arthur.

This dinner party was the first time I accepted an invitation since 17th May, and it was only because it was from my best friend. Late at night we talked and she revealed to me that her first experience of death was as an eight year old girl when the family doctor's daughter was accidentally run over by her father driving his car out of the driveway, and the doctor committed suicide a few weeks later. Evey decade of her life she lost some-one she knew. I contrasted this with my situation, I told her that as my family is scattered across the country and I didn't have any contact with my extended family, this is the first time anyone close to me has died. I once met Arthur's cousin Dorothy when she visited Australia. We drove all the way to Queensland to see her when she came out to visit her sister Katie, Arthur's favourite cousin. Ten years later we visited England and Arthur's home village. Katie was still living in Queensland near her son, but Dorothy had passed away. I told my friend that was the first time I had stood at the grave of someone I had known in life. That was in 1994.

My friend told me she is impressed at how I am handling this. I told her it is because I am still in shock, still horrified, and I probably have post-traumatic stress. It did help, though, to talk and put it into words. 

On the drive back I took a detour along the seaside road for a while and gave thanks that Arthur got to see the ocean one last time during his stay at the nursing home for respite. I cried as I was driving. I was driving to my Mother's house, I was not driving home to Arthur. I should have been driving home to Arthur, to him being glad for me to come back home, to being greeted by the dogs and Arthur. I was always a bit worried that he would be a bit unhappy but he was always glad to see me. Now there is no-one to care if I come home or not, or to miss me and be happy to see me come in the door. I just wanted to go home to Arthur and I seem to be knowing it will not happen. I do not want to know this.

It is just over one month since Arthur died, and I am getting further in time from when I was with him in life. It is getting longer since I was with him alive and I do not want the time to go, I do not want to be further away from Arthur.

Like today driving back from my friend, I just want to go home.

Saturday, June 18, 2011

I want to go home.

My best friend has invited me to her birthday party tonight and I will be going. I have no reason not to, and I want to go, but it is strange to not be thinking of Arthur and of how long I can be away, to be arranging respite or just saying no to my friend's invitation. I have no reason not to go and no reason to rush back. I will not be ringing to make contact with Arthur and let him know I will be late or when he will see me coming in the door.

The guilt, the trade-off of the pleasure of an outing and knowing Arthur wants me with him all the time, the loneliness that I know he will feel until I get back, is gone. I have no reason not to go out and now I do not want to. I want to be home with Arthur, I want to go out and come back to him. I do not want to come back to emptiness.

Today I called in to collect a bottle of wine from the house, to take to the party. As usual, as soon as I went in I started talking to Arthur. I broke down in tears, the first real deep weeping. I told him I just wanted to come home. Please let me come home. I just want to come home to Arthur. Please let me come home to Arthur, I want to take care of him, to keep him warm in the cold winter, to make him soup, change his pads, make him comfortable on his pillows, to buy seafood for him; to be his wife.

I just want to go home.  

Friday, June 17, 2011

The 17th.

It is the 17th of June, exactly one calender month since Arthur passed away in my arms. I still cannot write of it or the service on the 24th of May, before his cremation.

Today, I sent the invoice from the Funeral Director to the Arthur's funeral fund.

Arthur is at the Funeral Director's Chapel. They said he could be there until I am ready to pick him up. I cannot deal with that yet. I will leave this be for a time. I am talking about Arthur's ashes and speaking as if that is him. I do not feel it is him.  How can a person come to just this? A life, a complex system of physiology, a mind, feelings, touch, hearing, sight, taste, smell, enjoyment, pain, longing, anticipation, love and it comes down to ashes?

I cannot comprehend it, I cannot understand it. There must be a soul to tie it all together, a soul that exists beyond the physical body. We must be more than the sum of our parts.

Arthur cannot be gone; he may be beyond my reach and beyond this life but I cannot accept he is just gone.

The 17th of the Month, it is my wedding day, and the day I became Arthur's Widow.

Thursday, June 16, 2011

Something and Nothing.

I moved our bed to my room at my Mum's place today.

I could no longer sleep in the single bed as it made my back hurt, so I paid a couple of men to move my marital bed here.

This is the first time I have gone to bed in it since Arthur died. I have settled the dogs under the quilt with me as usual: there is an overwhelming sense of familiarity and strangeness. Something I know well is forever changed. When do I roll over to talk to Arthur, when will I feel his weight next to me, hear his breathing, feel the heat of his body, or smell the scent of another human being that I know as well as my own? When will I talk about our beloved dogs or...but this is pointless because I know the answer. It will be never.

I am glad to have back a little of that which I had - the bed we shared; but I want Arthur back. I long for him.  If I think about it too much, it is truly horrifying, beyond endurance, so I cannot write anymore tonight.

Tuesday, June 14, 2011

Sorry, Arthur.

Today the hire bin was collected. Most of it was stuff that was water-damaged or broken. I found some photographs, and greeting cards and trinkets, and saved it all. I also found some of Arthur's first wife's things that I had stored away. She died before I met Arthur, he must have been in this kind of grief when he met me. I have carefully put those aside too.

I feel sad every time I pack his things. I say 'Sorry Arthur' over and over out loud, particularly when I lock up and leave the house. I say it as if he can hear me. I wonder if, and hope, he is somewhere where he can.

Last week's feeling that I had, that any minute I should be driving off to visit Arthur, has changed. That has faded, and is replaced by the regret and guilt of the things Arthur will not know or experience again. I just want to keep saying sorry.

I cannot look forward and looking back hurts too much, so here I am; nowhere.

Monday, June 13, 2011

It just stops?

Last week was bad, I felt that I was away from Arthur for too long and it was time to visit him, in hospital. I spent a few hours in each day at the house alone, packing. With a 'project' to focus on I could just remain numb and do one thing on a time. I held Arthur's Manchester United shirt, one that he wore so much in the last months, to my breast and cried as I remembered holding him to me, the hugs that had to be gentler as he become frailer, the last embrace as he died in my arms. I lay on the bed in his place and smelled the scent, fading day by day, of him on the pillows. I could not do it for long, with an ocean of pain lapping at the wall, like a flooded dam that needs only the gentlest agitation to send the water crashing over the top.

I despaired that meals I would never cook again for Arthur, the football matches we will never see together, the sweet tea I would never make for him again. I will never feel his touch on my hair again or a playful touch of my breast, followed by a cheeky grin.

I despair the things Arthur will not know, the Manchester United wins he will not see, the dogs he will no longer cuddle, the touch of my hand, the Christmas dinners and jokes we will never again share.

I do not understand this sudden severance, how can things just stop like that? I cannot comprehend it. Last week I was numb and just operating.

This week I am still not crying, I am just horrified by it all.

Writing is hard. Packing up a life is harder,

I flinch away from writing this diary, I fear to touch the wall of grief. I know I have an appointment with pain.

Today, my best friend and her daughter helped me fill the big bin I had delivered. We cleaned out the rubbish from the garage. For a long time I have been stashing stuff in there to make room for Arthur's equipment. We found many things, including cards, photographs and ornaments, which I have carefully put aside. It is so sad to see Arthur's little things being packed away, and to see the cards we gave each other and photos of us doing things together.

I found the letter that Arthur found in France in 1945, on 6 June, D-Day. He just picked it up, with no envelope, on the ground. I must find the family one day.

This is almost too painful to write. I have packed up a lot of things, and I have found a workman to move it. And all I can do is say sorry, sorry, sorry Arthur, that I have to do this, that I have to pack away your life. I am sorry I cannot stay in the house anymore, but I cannot stay there without you. I cannot bear it.

Wednesday, June 8, 2011

Arthur, I miss you.

I am numb, few tears flow. I am not giving in to grief, for tasks call me; only I can complete them. But I ache, a deep unrequited yearning. I want to pick up the keys to the car and drive to the hospital, drive to Semaphore, leave my Mum's place, where she is caring for me, and drive home, drive anywhere to see Arthur, to hear Arthur, to hold Arthur. I just want to touch his hand, feel Arthur hold me close, hug me, to feel his hair, his hand, to hug our dogs between us.

I hurt to the core of my soul.

Tuesday, May 31, 2011

Love and grief.

It is my birthday, seven days since the funeral service for my husband, 14 days from when he died in my arms, as our little dog Chelsea lay between us.

I am here, Arthur, in our room, the dogs are with me, and my whole being aches for you. You promised me when you lay sick in that A & E bed, that you would be here for my birthday. Now I know your body could not hold out that long, but I am here, I am having my birthday with you.

I love you.

Tuesday, May 17, 2011

Last Rites.

The hospital called at about 1am this morning to say my husband's condition had worsened and that they did not expect him to survive this hospital stay. I came straight in. The fluid has built up in his lungs and they think his kidneys are not working.

I must be matter-of-fact in writing this, I am in the room with him as he sleeps and I do not want to weep. I am determined he should be comfortable and have dignity. He has had morphine for pain. I instructed the doctor to recommence the i/v antibiotics as he cannot take the oral ones now. He has slept all night.

I do not know if he can hear me say 'I love you" and "I am sorry', or if he knows one of the dogs, Chelsea is sleeping by his side, or heard the Anglican give the Prayer for the Dying. I half-hope he did not hear the last one, or he will be frightened, maybe. Or maybe not.

He has a single room and caring staff. Last night he complained of an earache and the doctor said there was a build-up of wax and the EN&T could not do it till the next day. Arthur got distressed by the pain so he was given a shot of Fenadril??? and later had 1 and 1/2 Temazapan, and later some morphine so he is sleeping heavily. I am watching his catheter drain, and not a great lot of urine has been voided so my hopes are fading.

I played some of his music he lives, Handel's Largo, that he told me he played on the violin for his mother as a schoolboy. He had to give up violin studies to go to work on the fishing boats at 14 years of age. He really regretted that. Many years ago I bought him a violin and he played that Largo for me.

My son said he would come out from London to help, my mother and my other sons will help me too.

But now is the wee small hours, I am still his wife, I still care for him. I am writing this part of his story. Not an end, but a passing. I must pass him on, in his time, to his Mother, Father, only sibling - his brother and other loved ones who have gone before. I have taken a lock of his hair and tied one of mine to his wristband.

Our love will be forever.

 He is groaning a little, I must tend him now.

Saturday, May 14, 2011

The First Box Packed, and I Accept Reality.

Arthur is was eating and taking sips of fluids last night. His colour is better and he is talking. He complains of not being able to sleep and the staff woke him to reposition him, but otherwise he is looking okay.

This morning I started packing the kitchen up. I have finally accepted that this is nearing an end. Last night Arthur said he had not lot of time left and he wants to spend it with me. For the first time, I agreed with him. It was a profound moment. I have feared it for so long, cried bitter, frightened tears and told myself that we had years yet to live and love. Now I know we do not.

I am truly helping Arthur close his life with dignity and comfort, as much as I can. Today I packed up the first box, my kitchen implements and cooking pans I know I will not be using in this house again. I will cook Arthur no more pastries he so loved, much preferred to sponge cakes. His food is now pureed or soft. I will not be him cooking rock-cakes, roast dinners with Yorkshire puddings or pancakes, or mixing him a shandy or a gimlet drink.  When I made fruit mince pies at Christmas, when he would steal them from the cooling racks, trying to look innocent with mouthful of rock-cake.

Will these memories comfort or sadden me in the years to come?

Truly now, I am also helping myself to close my life as Arthur's wife. I am preparing to be his widow.

Thursday, May 12, 2011

Visit, Thursday.

Arthur is awake today, and his colour is better. The speech pathologist ordered moderately thickened fluids and foods for him. He has a urinary tract infection back and has pneumonia of the lower lung. I sat with him for about 6 hours then I visited my mother. 

While I was there, someone we knew from the soccer club came in, he recognised us. This man {beddall?) is 64 now. Arthur told him he remembered how good a player the man was for City in his hey-day.They talked and afterwards this friend said he would tell other people from the club.

I talked to Arthur and reminded him he has to be home for my birthday. I made myself appear happy around him. We talked about Manchester United and the EPL title. I said he needs to get back home to see the dogs. Arthur turned his head, and with his still-clear and beautiful blue eyes looking to mine, he said, "I just want to see you, you are all I want to see."

My whole body and soul aches with grief.

Now Arthur is in a ward.

I rang the hospital this morning, Arthur has had a good sleep and they are waiting for the doctor to see him. /He has a catheter in. I expressed my concern about him getting another UTI but the nurse said he had a dry pad and when the scanned his bladder, he had about 600 mls of urine in there but Arthur didn't feel it. I am now scared his body is ceasing to function. I need to get myself to a point where I can be with him when he goes through this, if this is finally his death occurring. If I am scared and horrified, what must Arthur be feeling when he is awake, although he is very sleepy. 

Last night I asked him to promise me he would be there for my birthday at the end of this month. He said "I promise."

I feel a part of me is being taken away.It is impossible to describe the deep devoted love we have for each other. We in a lot of ways were not compatible, the differences not just in age, but it is amazing what works when two people really love and care for each other.

Maybe I am being too pessimistic, I remember when I came out of an operation and I couldn't urinate. Maybe it is just the tiredness that is effecting him.

I am so sorry I never recorded his memoirs or wrote his stories down.

Wednesday, May 11, 2011

Back in Hospital

I had the locum doctor out last night. Arthur has an infection in one lung again, due to inhaling food or drink again. The doctor gave him an antibiotic and told me to call the ambulance to take himto hospital in the morning. I called Arthur's doctor this morning and she agreed so the ambulance came and now he is in a cubicle in casualty.

I told Arthur he will get an IV drip with antibiotics and fluids and will be back home in a week. I so hope I am right. 

He cam home and I am glad he is home and I do not want him to go away and now he is in hospital again. I rang my Mum and she was upset because she is guenuinely fond of him. She saiod he is fading and that it probably won't be much longer. I said I do not think he will see another Christmas and I agreed.

I am so sad.

This is heart-wrenching. I still cannot understand that life has to end. Why? Why must we be parted, how is it that all there is left is some water, minerals and electrolytes of tears? I am afraid to see him in hospital and I must get past this crying. I must be cheerful and optimistic. I must let him know that this is just a normal hospital admission for a course of antibiotics. I can't give into my fears, fear must not rule me.  

He must be so scared, death is so lonely. I tried telling him, a couple of nights ago, in the dark as we talked and held hands, he goes to wait for me and the dogs, he goes to be with his Father and Mother and brother, even his first wife who died so many years ago.  He goes to be with God, in Heaven as Jesus promised. He is not a great believer, but I told him he knows I am smart and I know it is right. My faith is shaky, and I ponder a death that is the extinguishment of everything, as the atheists say, a real end, a nothing. I hope they are not right.

He must be so frightened and yet he will not burden me with it. He once said a few years ago, talking about life, all good things must come to and end, and I said not yet.  I was right, and so was he  but I am no more ready for this than I was then.

He says little things to me, like so and so might be worth something one day, I must make sure I don't lose it. Always he worries that I will be alright, when I will have life and he will have left his here on this fragile earth.

He knows Anthony is alright, but he does not ask to see him. I will arrange a visit by Anthony when Arthur is on a ward and better. I think he doesn't want to be upset by saying goodbye to Anthiny each time he visits. Arthur hate saying goodbye.

So do I.

Saturday, May 7, 2011

So Frail.

I am truly sadly shocked at Arthur's condition. He is home, he came back on Wednesday. He slept two nights in the hospital bed in the lounge room. The day and night brought cold so I bought an electric blanket to put over him. Arthur took a sleeping tablet on both nights but it didn't help much. It was strange for us to be sleeping in different rooms.

My middle son, the only one of my children who helps me (the others live in other cities), came today and lifted Arthur into our bed and propped him up on pillows. He looked a lot happier. I made him some soft food (egg custard) and crushed his pills for him to swallow, and he had sweet tea to drink.

Arthur is sleeping a lot. He shows little interest in television, or what is going on in the wider world and that scares me. He did watch some of the news last night, though, but no programs.  Normally by Friday he has mapped out his weekend football viewing choices and set up the recording schedule on Foxtel IQ. I hope this is just tiredness from the move home. I fed him his food and passed him his drinks, and made him comfortable. He has me and the dogs for company and I hope he picks up soon.

The AXXXX co-ordinator and OT came out with the first service visit and assessed him. He is at maximum service level now anyway. The nurse came came today because Arthur had a dressing from the nursing home, on his bottom. She found a small skin break and applied a fresh dressing.

While the respite worker was here I went back to the nursing home to get Arthur's gear. At Arthur's suggestion I bought a bowl and filled it with fruit for David, his room-mate. David was younger, still mobile, and they were good together. They talked but respected each other's need for privacy. When Arthur was leaving, David gave Arthur a little Buddha statue and also a little clock and tried to give him his watch, until the staff stepped in. I bought David a little dog statue. They have each something that is important to the other. David wished us luck. He said he would not be leaving the home until he was dead. He said he was in another one before, but this one was nicer. David doesn't smoke, is very friendly and respectful. He has family who visit, and he talks of his mother, and what she was wearing when she died. David has a clear understanding of death and seems to accept it as a reality.

Arthur is sleeping now, without a sleeping tablet. He is next to me, with the dogs all around, under the wool quilt. I have my computer next to the bed and I can type in the warmth. I am more relaxed with him here, and for a little while I can pretend nothing has changed, just for a minute. As my memories fill in the present moment, they lure me into thinking tomorrow the sun will come, and Arthur will wake me with the sounds of vegetables being prepared for the evening's meal, the scent of the grapefruit he has squeezed and the aroma of coffee with toast. I remember those Sundays when Arthur would make me breakfast in bed, as I was getting up early for work every weekday.  Or maybe I will think it is a Saturday morning in the local soccer season, in the 1990's and we are going to get up early to pack the car to go to the soccer club (where Arthur was the Team Manager for over 25 years) for the day. 

But it will not be. We will wake to morning of the 7th of May, 2011, when the only thing we share is pure love, and pain.

Wednesday, May 4, 2011


Arthur came home today, by ambulance. We had a problem getting him in through the tight angles of the doorways and in the end, we put him in the hospital bed in the lounge-room. We couldn't get him into the big bed.

The first thing he asked for was a cup of hot sweet tea, and the first comment he made was, "This won't be for too long, I know it."

The dogs were all over him, and Chelsea was straight under his blankets. I took photos. His room-mate, David, gave him a little Buddha as a present and I am going to make sure David gets a copy of the photos of Arthur with the dogs. It just goes to show that you are never too old to make someone else happy.

Less than 24 hours to Arthur's Homecoming.

Arthur is anxious, I am anxious. We both do not know how I am going to get on caring for him at home.

I think now Arthur has an appreciation of how hard it will be for me to do alone what a team of people do for him in the nursing home. We both fear I will fail. I do not know if I can do it but I can only try.

I am surprised at how much I am stressed by Arthur coming home tomorrow. Am I reluctant to take up the load again? Maybe I have become used to someone else doing it all and me just being the visitor, bringing the special treats and taking the dogs to visit.

Depressive feelings have caused inertia and everything is not done yet. I have to travel to the other side of the city tomorrow to buy a second-hand manual patient-lifter. I can't afford an electric one that I would really like. Arthur will get back about 3pm so I have to be here by then. I need to mentally prepare myself and reorient back into the carer role. I wonder when I will be able to walk the dogs on the beach again? I wonder if I can get enough respite to do that? Three hours a week is really only enough for shopping and appointments.

I want Arthur to be safe and comfortable in his own home. Why cannot there be enough services to do that? It is almost as if they want him to be in a nursing home. He does not have to be, he just needs two personal care visits a day and some weekly respite.

On Anzac Day, 25th of April, I took Arthur's suit coat with his war medal sewn on, in to him and we watched the march, televised on TV, together. A couple of weeks ago, I tried to get Arthur to agree go to the Anzac Day March in his motorized wheelchair, but he wouldn't countenance it.

I went in to watch the Royal Wedding with him on 29 April but he wanted to watch the English Premier League match on the laptop, so I joined the residents the TV room until his match was over, then we watched the carriages going back to Buckingham Palace together.

I take the dogs every time and the other residents very much like them. Maria, who always drops hints about chocolate, looks for the dogs every time and Arthur's room mate, David, who likes Buddha statues, loves to pat them. I wish I could take the dogs for a visit occasionally but I suppose that will never eventuate, but I do want to print some photos of the dogs and Arthur and give them to Maria and David.

I must put that task on my list too.

Thursday, April 28, 2011

The Homecoming Approaches.

Wednesday, 4th May, less than a week away, is the date Arthur will be home again. Arthur is looking forward to it but the is worried about me. He does not know how I will cope. He keeps saying he is sorry for me. It must be so hard for him to be a burden to me, in his own eyes.

I am not doing so well. I am highly anxious about it all. I suspect the respite has allowed me to get used to Arthur's needs not being here. I am not on call 24 hours a day, I don't have to worry about arranging for someone to be here if I need to go out, I do not have to deal with agencies and service providers.

I visit him with the dogs, he is happy to see me, thanks me for what I am doing, there is no conflict and we are relaxed. When Arthur needs personal care or re-positioning, I go outside the room until it is done. His health and welfare are some-one else's responsibility, and we just enjoy positive and happy contact.

Even the ravages of my grief have eased, somewhat.

The question arises, do I want Arthur to move permanently into a nursing home? The answer is no, I want him home. I want him home for his sake, not mine. He does not want to be there, he is just waiting it out until he is home again.

I do not know how I can cope with him at home with so few services. Just one visit a day means I will be changing his pad at least once a day, and now it seems he is bowel incontinent too, so coping with that will be so hard. I hate personal care, I hate everything to do with other people's bodily discharges. I toilet-trained my children as soon as they were old enough. I have helped Arthur on the toilet and changed his bowel pad a couple of times. How am I going to do this every day? I know nurses do it, but that is the reason I never wanted to be a nurse!

Why is it life gives you what you do not want so often?

My anxiety is making me nearly immobile with worry, my muscles are sore and I have tingling in my limbs. I have a lot of things to do so Arthur can come home.

I have to get a mechanical patient lifter, as I cannot afford an electrical one. I have to make sure I have everything arranged for the day and that I have the shopping done.

I am looking forward to Arthur's happiness when he finally comes home again.

Friday, April 15, 2011

Arthur to come home soon. Reflections.

Arthur's discharge date is 4 May 2011 and I know he is looking forward to being home. I am both looking forward to being reunited and feeling scared about what the future holds.

It is nice to visit and take the dogs in, to leave the care and labour to someone else. I do not know how I am going to do it on my own with only 30 minutes of personal care support provided each day. I do not know how long before he gets sick again, with just me to care for him. He is alright, if rather bored where he is but that is because he knows it is temporary. I know if it was permanent he would just give up and die.

I have not been able to do much for myself because the fees for the respite have taken a lot of the income and I am too tired or stressed to out or I don't want to go anywhere alone. I did go to the hairdresser and have my hair done and I have visited by best friend every week. I enjoy seeing her and her support is wonderful.

The counsellor asked what gives me hope, but I struggled for an answer. There seems no hope, other than to make day-to-day living as comfortable as possible. My struggle to do my university course is my one way of keeping a door open for the future. I feel guilty thinking of a future as Arthur does not have one, I remind myself he has had a past, and I have yet to have as much of life as his past represents for him, but that is an intellectual argument, not an emotional one.

I need to prepare the house for his homecoming, when life will change once again.

Seeking Asylum Down Under: Robert Manne on a solution to boat arrivals - in the absence of compassion in Australia let's revisit Manus Island!

Seeking Asylum Down Under: Robert Manne on a solution to boat arrivals - in the absence of compassion in Australia let's revisit Manus Island!

Sunday, April 3, 2011

Arthur's Birthday - April Fool!

Arthur had his birthday two days ago, on April 1st, April Fools Day. I bought him an ice-cream cake and a wireless electronic weather station. My mother also visited and we had a happy time. At one time I wanted to make a birthday party of it, but I think it would have been very tiring for Arthur and we have lost track of so many people, and he has outlived his close friends. It is really just Arthur and me, now.

The kitchen staff made him a cake to share with everyone and a lot of the staff came in and sang 'Happy Birthday' to him in the morning (I came in after lunch) and lots of staff and some of the residents wished him a Happy Birthday too. I think it was a good thing that he was in the nursing home for his birthday as he got a lot more attention than he would have at home with no one visiting. It was a bit hard to go home alone but it is for the best. I was happy to see him smiling and seeing him talk cricket with my Mum was funny. Mum is Australian back five generations and he is English and of course the cricket rivalry is usually intense but as both teams are not doing well they were commiserating each other on the lack of good bowlers in each other's national teams.

On Thursday, my doctor found out I have low blood pressure at the moment so she took a blood test on Friday. Also my CT scan shows arthritis in my lower back so I have to go to physiotherapy. The pressure on my sciatic nerve gives me pain down the leg so I will have to strengthen my back with exercise.

Also my Chelsea has a little lump on her chest so I have to get the vet to check that out. Arthur and I will be devastated if it turns out to be anything nasty. I am not going to say anything to Arthur about it. I am hoping it will just be inflammation or a cyst.

I got a pass and a credit for my two practical reports for my university subject.

My sense of sadness is under control I think. It has not gone away but it is not as overwhelming. Thoughts that this would probably be Arthur's last birthday were pushed into the background. I could not afford to indulge in that kind of thinking. But here, I will face it. I also face the sadness that it was so little I gave. I wish it could have been a party at a restaurant, at home or in the nursing home day-room. I wanted family, all his friends, anyone who knew and respected him to be there, decorations, him the centre of attention, people thanking him for all he had done. I would have liked for him to say sorry to his daughter and 'buried the hatchet' on past hurt and tumult and for him to see his grand-daughter and great-grandsons. I wish they could have been there, for him. (To be brutally honest, I have been glad he had no contact with them; I didn't want to share him.) I wish his son Anthony could have been there and we all had a big celebration. But I am not up to organising anything like that, I cannot find people or magically heal his family rift.

I just think, that for all his faults, Arthur deserves more than this. We have each other though, and from what Arthur has been telling me, it is enough for him. For me, to give Arthur roses and a card that said 'To My Husband' was more than enough.

Friday, March 25, 2011

Visiting Today.

Arthur stood up and sat back down three times on Monday, with the physiotherapist. It is a pity she s only there once a week as Arthur is not getting daily exercise, only when she is there. He is getting leg massages and sitting out in the air-chair daily, but it would be better of they stood him on his feet every day.

I am visiting three or four times a week and I know Arthur wants to be home under my care. I am bracing myself for a lot of hard work. I feeling depressed this week and I do not know if it is the worry about how I am going to care for him or if it is my muscle soreness. I am having a CT scan of my back today so maybe that will identify any problems.

All the problems seem to be overwhelming and doing my university tutorial this week was very stressful. I know I have t keep going with it. I wish I had the money to just retire but I do not. I probably will never be able to retire. Giving support to my son, who has depression, is such a drain but then again he is the only one who gives me any support, really.

I just want Arthur to have a comfortable and caring place and that can only happen at home with me.  I am going to visit him today.

Thursday, March 17, 2011

Alaskan King Crab Mornay and Roses

To celebrate our wedding anniversary. I made a dish of Alaskan King Crab meat in bechamel sauce at home and served it to Arthur in the nursing home. I made a bechamel sauce without onion or garlic, but instead, as it was for a fish dish,  used lemon juice, grated lemon zest and parsley with ground black pepper and salt.

I made up a bunch of flowers from my garden for Arthur and made sure there was some roses in it, because at our wedding we had a Rose Ceremony where we gave each other a red rose. I also took the Chelsea, the Tenterfield Terrrier, in to see him and he watched his favourite team Manchester United beat Marseilles in the UEFA Champions League quarter final. 

My son also dropped by to visit with his friend. He brought along his little Tenterfield Terrier puppy, BeeBee.

Arthur and I really enjoyed the afternoon together and it was a happy wedding anniversary.

Wedding Annniversary

Today is our Wedding Anniversary and my husband is not here.  I so wish Arthur was home today.

Arthur has settled into the home in Semaphore and the staff seem very good. Even though it is only for a few weeks respite, Arthur had been worried that he would not be coming home again. I reassured him that no-one could make him stay there and that he is coming home at the end of the respite period.

I have been visiting every second day, taking recorded English Premier League games on my laptop for him to watch, as the home does not have cable television or internet. I hooked my laptop up to my smart-phone and connected to the internet so Arthur could read the Manchester United FC website.

The dogs have visited too, and Chelsea our female Tenterfield Terrier and love of Arthur's heart, goes under his blankets and sleeps next to him for a coupe of hours while I am there.

The physiotherapist has had Arthur up on his feet once this week, so he has at least been standing. He has adapted to being transferred with an electric lifter quite well and most days sits out in the Princess air chair. 

I am going to try to make something special for Arthur to eat today. His swallowing mechanism is not good so everything has to be ground up and thickened but I am going to try to make  a dish out of an Alaskan King Crab leg that I bought for him.

I want to make this a happy Wedding Anniversary. I am so glad we are husband and wife.

Tuesday, March 8, 2011

Mr S hits out with his walking stick.

Arthur has been moved to a nursing home for respite. It is in Semaphore which is by the beach. I looked at another one first but there he would have been in a room of five beds and I knew he wouldn't have liked that. The hospital said he was medically fit to discharge with 8 days of antibiotics to go, and that could be monitored by a General Practitioner. The hospital and nursing home organised the move by ambulance and I went down after my interview about the CDC package.
Of course all Arthur wants to do is come home, but I need to get some help in changing the house around, and I am hoping the physiotherapists there will manage to get him on his feet again.

He is in a share room with one other person, but unfortunately didn't get the window bed.

I stayed for quite along time that first day, which turned out to be a fortunate decision. When the new admission to the other bed, Mr S, arrived, there was an incident. When the care workers tried to help Mr S get into bed, he threw a punch to the jaw of a female care worker. On seeing this, I went to get the nurse, and made it clear to him that Arthur could not stay in the same room as a violent person. More workers came into the room and Mr S was moved to another area. The head nurse called the manager, and put me on the phone to her. She explained they had no other beds available and that if Arthur didn't provoke Mr S, Arthur should be alright.  I was horrified by that suggestion and flatly discounted it. I told the woman that she had a victim of a home invasion (in 1998) with Post Traumatic Stress Disorder in with a violent person who was unsuitable for this type of accommodation.  Mr S needed to be in a secure unit. As I could hear a commotion further up the corridor, I told her Mr S was still being disruptive. The manager said that the Department of Health and Ageing had not told her that Mr S had these problems. She said she also did not know Arthur had PTSD. I said I assumed it was in his transfer notes from the hospital.

I said I understood it was not the home's fault Mr S was there, but that it was unacceptable for him to be in with Arthur. She asked to speak to the head nurse and I went and got him. I went back to Arthur and told him I would stay alll night with him if necessary, but that I could hear the phone call and Mr S was being sent to hospital to be assessed and that he would be unlikely to return. I heard Mr S' wife mentioned and felt sorry for her. I wonder if she suffers from his violence at home. Maybe not, maybe Mr S just does not like facilities and nurses telling him what to do.

I wandered up the corridor to find out what was happening and the head nurse told me Mr S was to be taken for assessment at the hospital and that the police had been called to supervise the transfer. The nurse was very annoyed because Mr S had hit him across the neck with his walking stick and left a red mark. The nurse was quite a solid man, overweight with thick neck. I had visions of that walking stick crashing onto Arthur's thin frame and weak bones. The nurse was outraged, and said that he would not have any of his staff at risk. I politely agreed with him but I am not sure he picked up my point when I said that if Mr S had hit Arthur with the walking stick, Arthur would have been killed.

I stayed for a long time, and settled Arthur down. I asked that the locum doctor be called to give him a sedative if he needed it and that he be checked on quite frequently. As it turned out, I received a call to say Arthur was alright, but they couldn't call the doctor because they did not have his medicare card. I told hm the number should be in Arthur's notes, however I would bring his card in the next day. (They did find his medicare number in his notes the next day.) The home was very good at keeping me informed and responded quite correctly to Mr S when the manager understood the seriousness of the situation.

Arthur was upset by all this and it was not a good start to his stay.  I came in the next day with Jason to see how he was doing, and to check up on how he was being treated. Arthur was tired, but he was being cared for quite well and we hoped he could be moved to the window bed.  Unfortunately that bed was allocated to a man who was coming to live there permanently. He turned out to be quiet and friendly.

I stayed overnight at my friend Jill's place. We have been friends for nearly 30 years. Time does fly.

Friday, March 4, 2011

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.

Thursday, February 24, 2011

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.

Tuesday, February 22, 2011

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.

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.

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.

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.

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. 

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.

Better out than in.

Arthur was terribly embarrassed. He had been constipated and took a senna-type tablet the doctor prescribed. He took one two days in row, and had an accident, he couldn't get to the toilet in time. I changed him, he was apologising and I just dealt with it. I got him into the bathroom and showered him down. It was not as bad as the first time this happened when I got him into the bathroom and it just all kept coming and I had to wash everything down the drain before he could move. That time Arthur was upset, I was shocked but functioning and telling him it was alright and it was better that he had movement. I got him back to the kitchen for his dinner. I couldn't eat.

This time was not so drastic although Arthur was so embarrassed again and I lost my appetite again and he tried to apologise and I said it was alright, let's not dwell on it.

If I had the care package we wanted, there would be others to deal with this and Arthur wouldn't be shamed in front of his wife.

Thursday, January 27, 2011

Disappointed. A Carer's Lot.

The result from the Health Department Investigation Team came by registered post. They found myArthur's needs were being met, advised that I should be getting respite (which starts this week) and that nothing more need be done. (I will post scans of the letter later)

I was dumbfounded.'

Of course Arthur's needs are being met. And it is because I am making up the shortfall from the what I honestly believe is neglect of our needs by the provider! As their report clearly states!

It as cost me an injury to my back, a bout of depression, intense social isolation and chronic tiredness. I was told, when he came home from hospital, by the service provider,  in no uncertain terms that if I did not provide the shortfall that I had to tell Arthur he was going into a nursing home.

Arthur's program is now, per week:
Personal Care 7 hours
Nurse Care  2 hours (The nurse is here much less than this, so this must be a maximum)

Respite 3 hours

Total 12 hours.
And that costs the government over $42,000 a year!

I am considering my next step.

My friend said that I may want to consider the benefits of Arthur going into a home, our relationship won't be strained by this fight and my tiredness and injuries, I would know he will be getting the best of care and we can concentrate on enjoying the time we have left. It is a sensible option to examine, but emotionally, I told Arthur he would be at home as long as I had an ounce of strength left in my body.

Arthur is my husband; He will stay by my side until his death, unless I am too sick or hurt to carry one. I hope I am there when he passes. He is my husband and his place is with me. If the government, the agencies and the service providers will not honour our marriage and help facilitate what we want, to be together, so be it.

I will do it alone.

Monday, January 24, 2011

Respite or Cleaning?

The woman booked to do the respite came on Friday. I was told she could do some ironing and dusting etc while she was there and to make a list. I made a list of the things the cleaner does and the woman was shocked when she saw it. She told me she was booked for respite and does not do cleaning. She rang her agency and the service provider co-ordinator came out. We worked through our expectations, I expected the house to be cleaned (but only one of the bedrooms) and they thought I just wanted time out of the house. The co-ordinator was very helpful and now she is going to send someone who can do the cleaning for 1.5 hours and sit with Arthur for the other 1.5 hours.

I really did hurt my back and despite pain tablets and Celebrex I am still in much pain. I will need to see the doctor. As a result of not getting enough services I have sustained an injury trying to reposition Arthur after changing his pad all on my own. This is a disgrace.

Now the house is a mess because I am in pain and am avoiding lifting or moving things and that upsets me.

My daughter is visiting Adelaide in March. I will to get some dates so I can arrange respite care for Arthur so I can take her out. Things that used to be simple and straight-forward are a drama and a logistical nightmare.

I need to find some positives in all this but that is tough. At least I am here for Arthur when he needs me the most. It would be tragic if he had to go through this alone.

Friday, January 21, 2011

Respite At Last.

I am to get two hours respite today. The service provider called on Wednesday and said she could have someone in the house for two hours on Fridays. That is a relief, albeit a small one. She also said that the worker could do some housework; dusting or ironing or whatever and that I should make a list. I replied that there was plenty for the person to do while I was out. 

My other respite options are on the way. The day program at the nursing home was looking alright until we found out there are no actual beds. It seems this program is for more ambulant visitors. They have a no-lift policy so Arthur would have to get himself out of his wheelchair to go to the toilet and they couldn't do his personal care in his wheelchair. Later, I will comment more fully on the social justice aspects of not providing for frail people in an aged care respite program. We are scheduled for a visit to the facility and a talk to the provider at the end of the month.

The Cottage, which is further away in distance, is much more hopeful prospect. The manager who visited us in Arthur's home was much more accommodating. They can take Arthur overnight from Tuesday morning to Friday afternoon. He said they have an powered bed, ensuite, TV in the room and 2:1 staff to guest ratio. He was very positive and said the staff could assist Arthur with his personal care. I was very impressed with his attitude. A young man, probably early 30's he was very repectful and interested in Arthur and addressed his questions to Arthur while including me, ensuring Arthur was the focus of the conversation. I am going to have a look at The Cottage.

I have hurt my back moving Arthur.

Monday, January 10, 2011

Sarcopenia, the strong man brought down.

Another three red areas, this time on Arthur's back, signal the threat of bedsores arising again. This time the redness is higher up on his back close to his spine. Bedsores are the pest of our lives. These areas, very small but worrying were discovered by the care-workers when giving Arthur his bed-bath. The nurse will be called to apply a protective dressing and I am propping him up with foam wedges and pillows to keep pressure off these areas. As Arthur has lost muscle-mass and is bony, the spine sticks out.

It is getting difficult to get him to eat enough and he is very reluctant to walk, especially in the hot weather. I don't blame him for wanting to stay in the cool but I do worry that he will lose strength. It is a delicate balancing act to encourage him to move around enough but not to sap his strength. The loss of muscle mass, Sarcopenia causes so many health and social difficulties.

This is a wake-up call for myself, and I need to start a personal exercise program. How many times have I done that and it comes to nothing.

But now I have seen my possible future with my own eyes. 

Progress. The Department of Health Investigation Team

5 January 2011
That was a nice call from a senior officer with the Department of Health Investigation Team. She explained that she was handling my complaint and outlined the process so far and what to expect next. She was friendly and helpful and genuinely appreciated that I was happy with the progress.

She has requested all the documents regarding Arthur's care including his care-plan, from his provider. While they request a 14-day response, in effect it can take weeks.

Some of the areas they will be examining include Arthur's care-plan and it's adequacy for his needs and whether he is receiving the correct services.

I am pleased with this response and the way the Dept of Health is keeping me informed.