Friday, December 31, 2010

Christmas was a success, now for New Year's Eve. Xmas Puppies!

Christmas Day was a good day. It was hot so we had prawns, Alaskan King Crab legs, cold meats and salads. My Mother and my middle son, Jason, came over and joined us. Arthur had a good meal, Jason and I went shopping on the day before Christmas and I bought seafood and lots of goodies and some new decorations.

Arthur originally said he wasn't much interested in Christmas, but when I put the decorations up on Christmas Eve he was very happy to see them. He enjoyed the seafood and the Rum & Raisin ice-cream for dessert. We had Xmas music and although there was not much room in the kitchen/dining room, it was a good meal. I was glad Jason was there to help and to share the day with us. Later Arthur told me how much he appreciated what I did. He said he enjoyed this Christmas, 'his last one' he said. My Mum also said it was a really good Christmas dinner, much better than a hot roast. I was pleased to have a happy day where we all had a good time.

Jason's Tenterfield Terrier dog had five beautiful puppies on Christmas morning. Mother and babies are well and so lovely.

We had a hot day today, and we are going to watch the Sydney Fireworks on TV for New Year's Eve. I am so glad Arthur is with me for this Xmas and New Year. We are happy and enjoying rest and relaxation. This is a very precious time for me.

Saturday, December 18, 2010

Seven Days until Christmas

Seven days to go until Christmas and I have not even got one Christmas decoration, no tree or anything. This has all come so fast. For a while I didn't think we would do much for Christmas this year, being so sad, but I have got some shopping in and my sister is giving me a frozen turkey so I had better cook it. I am behind in the house work and am very tired but I will catch up tomorrow.

I am now looking forward to Christmas Day, a bit anyway. I will try to make it a happy occasion for everyone who comes.  My Mum and my two sons living in Adelaide will be there so it should be alright as long as Arthur doesn't get too tired.

Arthur is watching the Australia v England Test Cricket matches on TV and for once I want England to win. Even my mother says she doesn't mind England winning if it makes Arthur happy, and that is saying something for Mum. She is usually red-hot to see the Aussies beat the Poms. If it is a good close Test then it will be good for everyone.

I fell down the front steps yesterday and ended up with a twisted ankle. I so hate steps. I think that the elimination of steps should be a core subject for architects.

I least I have bought a Lions Christmas Pudding,

Friday, December 17, 2010

Christmas Island Asylum Seeker Boat Tragedy.

The tragedy at Christmas Island yesterday when so many men, women and children were killed when their boat was dashed against the rocks in the high seas is shocking and so sad. The fear, pain and terror these people experienced before they died or were rescued is beyond comprehension.

The circumstances they are fleeing must be desperate indeed to try to reach Australia by so dangerous a course.

I am ashamed and appalled by the reaction of some people who are filling the talk-back radio airwaves and online comments sections with hatred and lack of compassion for the helpless, desperate, grieving and the dead. I wish we were a better nation than that.

I am going to ring some talk-back radio programs and challenge some of the misinformation that is being quoted by ill-informed people about asylum seekers.

Wednesday, December 15, 2010

Community Visitor Scheme.

Arthur's Community Visitor, Vicki,  was introduced to Arthur today when Lee, the co-ordinator of the scheme brought Vicki around to meet him. Vicki does not live all that far from us, and knows some of our nieghbours. Vicki is a nice woman and Arthur was happy to talk to her about his history.

Lee said Vicki had had all her Volunteer checks including a Police History Check and that Lee would be reviewing our progress periodically to see that all is okay.

I intend to tape some of the sessions when Arthur talks about his life so I can have a record. Maybe one day I can write a book about him. Vicki's children are grown and she has a grandson. Arthur seemed happy to have some-one new to talk to and the visit cheered him up. I am glad a volunteer like Vicki has taken the time to help someone else.


Complaints Team Returns Call.

The nice woman from the Complaints Team called me today. She advised me that she had spoken to the Program Team who have advised her that she can take my complaint. She said she would enter into the complaints system and that a letter would be sent to me. I am hoping I can get some answers about the administration costs taken out of Arthur's package.

Tuesday, December 14, 2010

The Nurse Arrives. Skin Integrity Scare.

Just when I thought all was well, Arthur has a tender spot on his bottom where his bone is close to the surface. The nurse came today and applied a dressing that helps to protect the skin from breaking down.We are worried he may get a bedsore.  I am going to use pillows to alternate the pressure points. Arthur can only lay on his back so I position him in such a way to change the weight-bearing areas.

He has a memory-foam mattress that was very expensive, which is supposed to help prevent bed sores, especially when I use positioning cushions. I am changing Arthur's position a number of times a day and encouraging him to release the pressure on his hips by raising them while holding the bed pole. Arthur still has strength in his arms and shoulders. I am getting a lot of information from the Mayo Clinic online.

After his wash in the hospital bed in the lounge-room the two workers were going to leave. One said she understood that they were wash him, make him comfortable in that bed and then leave.  The other worker, who is from a relief agency was happy to do anything Arthur needed. I referred to Arthur's care plan and advised that there was nothing to say they couldn't help nim get out of bed and walk into his bedroom where I could put him back in his own bed. They then did help him to do that, but the nurse who was there said she would check with XX service provider to see if they were allowed to do it. I explained I was trying to limit the number of Arthur's transfers I did on my own so I did not get exhausted too quickly.

It will all come down to time, depending on how much they can do in an half hour. The workers get really pressed for time.  I have had workers come who have been double booked and need to shortchange each client to get them both done, and workers who are booked for consecutive clients with no travelling time factored in to the roster and too little time allowed for the number of things they need to do for a client.  I am not sure how XX service provider's workers are treated, as they are in and out so quickly that I do not get to talk to them very much, and I shouldn't expect much to be revealed when there are two here together.

Arthur is comfortable now and as it will be 35 degrees Celsius today, I will put the air-conditioner on for him. 

(Note: I am not naming service providers, hence  XX, who is Arthur's current provider, a different one from X, our previous provider mentioned in earlier posts.)

Monday, December 13, 2010

Aged Care Complaints Investigation Unit.

I made a few calls today to find out about care at home packages. I called the Commonwealth Respite Centre and the very helpful officer gave me information on respite options. I also spoke about my experiences with X provider of home care services and my wish to speak to someone about it. I also asked her about administering our own EACH package. She told me about Consumer Directed Care packages, where a provider still administers the program but the consumer is much more involved in designing the program. She also gave me a complaints number.

I then rang the Aged Care Complaints Investigation Team in the Commonwealth Department of Health and Ageing. I explained that according to their website an EACH package provides a subsidy of $120.50 per day towards Arthur's care expenses. The package can give up to 15 hours care a week. This, from my calculations, is over $42,000 a year that X provider gets to deliver care to Arthur.

I explained that Arthur was getting about 15 hours a week care before he went into hospital and rehabilitation this year. When he came home his hours were dropped to 7 hours a week. This is made up of 2 care-workers giving an 1/2 hour of personal care each morning. (One half hour with two workers = 1 hour).

Arthur gets his creams a lotions supplied and incontinence pads, of which he uses 2 per day. He can also have a nurse to visit and provide wound care if he has a skin breakage that needs dressing. He has not needed any of that for at least a year or so as I am very good at taking care of his skin.

I know his equipment costs about $75 per week as that is what I was told would be freed up from the funds if we bought Arthur his own equipment. (Bed pole, bed grab stick, rollator, toilet raiser and two raised chairs etc.)

For his daily wash , Arthur is supplied with some wash lotion and moisturiser which could not come to more than $5 a week.

His incontinence pads are supplied. I checked, and the cost, retail, is about $1.20 each. Providers order in the thousands a year and must get them cheaper than retail, but anyway, that works out at $2.40 per day or just $16.80 per week. Lets make it $18 to be generous.

Looking at the industry award, an aged care worker on weekly wages gets between $580 (grade 1) and $862 (grade 9) per week depending on their pay grade. They get extra for weekend shifts and a 150% loading for public holiday work. Even at the highest grade that is only $22.68 per hour. The most they can get is $56.70 per hour for working on a holiday, plus whatever other allowances there are. If Arthur had two grade 9 workers for 1 hour on a holiday it is still only going to cost about 60 or 70 dollars. For an ordinary week for his 7 hours of services, the labour charge cannot conceivably be more than 7 x $25 or $175 per week as he probably would not be getting grade 9 workers every day or every week. Even adding an extra $20 pw to cover public holidays, it is still only $195 pw. Lets make it $200. No let's be really generous, make it $220.

He is entitled to a nurse for wound-care, though I was warned that if he needed a nurse too much, he might get his hours of personal care cut down from seven. To what I do not know, nil maybe? I will allocate $50 per week for that, $2,500 per year should be enough to cover the little he may need. After all it is zero dollars now for nursing.

So lets add it up, per week.
Equipment $75
Pads $18
Creams $5
Workers $220
Nurse $50

Total = $378

So I have $378 pw as Arthur's in-home services costs.
His provider is allocated $120.50 per DAY for his care. That is $840 per week.

(Am I, I ask you, entitled to ask where the damn hell the rest of his funding, the approximately $450 a week goes?)

So I gave the gist of the figures to the lady on the other end of the phone from the complaints team, and she pointed out they only dealt with complaints about his standard of care. I advised I did not think he was getting the level of care his funding provided for and that we were getting only one visit a day. I explained that challenging X provider resulted in a toxic relationship with the family being subject, in my honest opinion, to bullying and hostility on the part of x provider.

She took on board my complaint, that Arthur is only getting 7 hours care when he should be getting more like 15 hours of care. How the EACH program is supposed to meet its aims for the client in just 7 hours a week, is beyond my comprehension. My complaint that the Dept of Health and Ageing was paying over $42,000 per year for their client, Arthur, to receive care and that it looks like he is not getting adequate services for the money, was not something her area takes on. I pointed out that between the funds being disbursed by the department to the provider and the workers walking in Arthur's door, over 50% of the funds were gone. How could it be that any government program be administered in such a way that over 50% of the funds are taken up with program costs? How is that efficient for the government who is expecting the funds to address needs? How is it fair, just and equitable for the client?

I was assured my program level complaint would be sent to the Programs area of the department and the officer also took my phone number for a callback. I hope I receive one. My complaint about care hour reductions will be investigated.

I told the complaints officer I was concerned on two levels, both as it affected our family personally and for the wider community of aged people depending on government funding packages to remain at home and in good health.

Next I am going to look into Consumer Directed Care Packages, and I am formulating my complaint about our treatment by x provider over the last year when we have been advocating for Arthur to have his level of services retained.

I will keep this blog posted with the progress.

(Note: I am not naming the provider hence the X.)

Friday, December 10, 2010

Georgina, Social Worker Par Excellence.

The Social Worker from the TCP Unit visited today, doing a follow-up to see if we had settled back home alright. Georgina is a Social Worker's template on how to be a helpful and caring client advocate. She is very welcome visitor.

Georgina was a godsend to us in a very difficult and emotional time. It was a pleasure to assisted by some-one with such understanding, empathy, humour and a drive to help her clients. Too often when dealing with the Aged Services sector all you hear is what cannot be done. Georgina's approach is "What can we do? Let's see if we can do that, there is nothing lost by trying even if we don't succeed."

In the first meeting we had with the care provider, the Unit's staff and the health professionals, I was surprised and delighted to find someone there who was seeing things from our perspective and ensuring that our point of view was heard. To have a social worker supporting us meant so much Aged care is a sector where, more than any I have encountered before, a top-down service provision is the norm. The client fits in, the service does not fit the client. It is difficult terrain to navigate.

To have a positive and supportive voice in that meeting and the ones that followed, and the assistance with difficult negotiations over home support services, was a life-line for both Arthur and myself. Georgina really made a difference.

I do not know if you are reading this, but if you are, thank you, Georgina.

Thank You Flower

Rain, rain, and more rain.

Rain falling and more rain falling. We have had one month's rainfall in one day.  The garden is glowing, the zuchinni is ripening and there is a cool breeze heavy with the scent of fallen rain. My red roses are going into a second flush and this time I will take a photo.

The long drought is broken. In the Eastern states there is flooding, with rivers and creeks long sluggish with scarce water, are now raging, and tragically taking lives. People trying the dangerous action of crossing fast flowing water courses have been drowned when their cars were swept away. Others have had there houses, business premises or crops, such as cherries, damaged by the water. The brave people of our emergency services are doing a wonderful job to help people in need. This includes many volunteers as well as emergency service professionals.

The water will certainly boost the river and dam levels and take the worry of low water levels away for a time. I am very happy with that. 

All this blessed water had had one negative effect, though.  The polls are showing an easing of general public's acceptance of anthropological global warming. More people than during the drought are saying they are not sure about climate change. As we have limited time to respond and need to take the scientists' advice on mitigating the effects of climate change, it would be a shame if we took the increased summer rain as a rain-check on action.

Thursday, December 9, 2010

Volunteers. Our Friendly Visitor.

Arthur is to get a community visitor, a volunteer who will come and visit him for one hour a week, as part of the social inclusion program of the local council. The volunteer will be able to talk with Arthur. I am hoping that while the volunteer is here I can record some of Arthur's memories, such as his childhood in Brightlingsea, UK.  I tried it before with a video-camera but, although usually able to talk the hind leg off of a donkey, he was not very forth-coming. Maybe Arthur had stage fright.

Arthur had a lot of contact with the care-workers that came around, before he went into hospital this time. I quite looked forward to seeing them, too. One I got on with really well. After the hospital stay and the dust-up with his provider over decreased hours of services, we have a new agency and different workers. There are different ones every day and they are here for only 30 minutes a day. We hardly even know there names. When the care-workers provide your most social contact, you know you are getting isolated. "When the only friends you have are the ones paid to be your friends", was how some-one in the disability sector once described their life.

The friendly visitors scheme will help Arthur a bit, but I wonder about all the people he knew, all his friends from helping out at the local soccer club. I remember them saying thank you for all the hard work and how his offers of help were never tuned down, and their words of 'If ever you need anything, you only have to ask.'

I have left messages there and sent them details of Arthur's condition but I have had few return calls. Maybe there are all new people now who do not know him, and the people who did know him have just got on with their lives. Arthur loved that club.  He would be always out doing things especially looking after the players, as he was the Team Manager for 30 years. The Team Manager was the coach's assistant, the co-ordinator of everything to do with the team, their kit, keeping training and match-day records and organising the dressing rooms. In the 40-plus years as a member of the club and over 25 years as the team manager, Arthur knew everyone who played for the club in that time, along with many others in the SA soccer world, including coaches, committee people, volunteers and referees.

It has been said by many that Arthur was about the best volunteer that club ever had, along with another person about the same age who also did much work and important jobs about the club. I was very pleased when this other man had something in the club named after him. He did a lot of work for them. Both he and Arthur were made life members, but Arthur didn't get anything named after him. This, and the lack of any inquiries about Arthur,  has left me with a few hurt feelings on his behalf.   I once used to think that a lot of people would come to Arthur's funeral, but now I do not think so. I think he has been forgotten. But maybe it is just me being sad again.

I think I need a reason to smile

It is fitting though, that Arthur, who volunteered to do so much in his time has  younger volunteers to now help make his life a little happier.

Sunday, December 5, 2010

Instant wave of Echidna cuteness, guaranteed. :)

Just because it so cute I just have to post this link to this twitpic. They say it is a hedgehog, but it would be an Echidna in Australia.

National Broadband Network. I want it now, now, YESTERDAY!

The internet is my saviour and the National Broadband Network cannot some soon enough.
With my internet connection I am linked into the outside world. I use it for all the things I cannot do, now that leaving the house is difficult. The new media has almost totally replaced the old media as my window to the world. I do not buy newspapers anymore but keep up to date online. For instance, my favourite current affairs discussion site is Crikey.

I hope the naysayers who are questioning our National Broadband Network wake up from their bronze-age dreaming and join the rest of Australia in 2010, where people are falling over themselves to get connected. The worst thing about the NBN is that some people will have to wait eight years to get it. Australia being so huge the task so enormous, it will take eight years to install all the fibre.

Here is a thought.

Can we have a poll to find out how many Australians would be willing to pay a social-democracy levy to reduce the roll-out time? How much would it cost to roll it out in four years instead of eight? I know I would willingly contribute to a fund bringing the social and economic benefits of the NBN to all Australians ASAP.  Even though at the moment I do not know if I am in the queue at year one or year eight, I would still be happy to contribute.

I do know that if I was buying a house right now, I really would want to know when the NBN was being connected before I chose a place to live.

Will I connect to the NBN?

In a heartbeat.

Monday, November 29, 2010


Pillows and cushions are the casual labour of a household. We use them and discard them as the need arises. We can spend ages choosing covers, matching with the curtains or decorating them and then we stick them around the place ready to grab. They can line hard edges of a chair, stop a baby from rolling over or soften a hard floor for the unlucky who miss out when butts outnumber seats. A pillow-case can even be made into a girl's dress.What's better than hitting a pillow to relieve stress or the fun of a pillow fight?

 We cry our tears into pillows and dream our dreams on them.

There they sit waiting until we need them.

A time comes when pillows become essential to your existence. A little one to raise the feet to help prevent swelling, one under each hip to ease the pain in the coccyx, a couple to raise your head to see the TV and an essential wedge cushion to raise the upper body to ward of fluid on the chest, which can lead to deadly pneumonia, these all are needed for a comfortable and safe position. You are too weak to reposition yourself so your helper has to get the pillows and cushions just right.

Your life is your pillow.

Saturday, November 27, 2010

The Upside - I lost 4 kilograms. (nearly nine pounds)

I never knew I could be this weary. Arthur asked me if it was worth it to have him at home, I told him of course it was, and as long as I have breath in my body he is staying with me.

After the provider planned his program, he gets two people for half an hour in the morning to wash him and change his clothes. They will also shave him a couple of times a week, cut his nails when he needs it and put on his creams and lotions. He gets his incontinence pads supplied and his creams and lotions supplied. A nurse is available to apply dressings if needed. Everything else I do.

I have lost 4 kgs in two weeks, from doing Arthur's transfers in and out of his bed and everything else. He has to get into the hospital bed before they come in the morning, so I help him out of the queen-bed in his bedroom, using his walker (rollator) get to his seat in the kitchen to have breakfast and then I help him into the hospital bed in the front room. After they leave I get him out of the hospital bed, help him outside to sit on the porch if he wants, and I encourage him to take a walk down the path and back. Sometimes he does a walk after the evening meal instead, but he is only walking about three times a week.

After lunch, which is usually soup, I transfer him into the queen-bed. He watches TV or sleeps. Later in the afternoon I help him out of bed and into the kitchen for dinner. I heat up the Meals on Wheels dinner in the microwave oven and arrange it on our best plate with garnishes to make it look appetizing. He has his food ground to 2 mgs (puree) so I need to make it not look like mush. He takes a while to eat and during dinner Arthur watches TV or we talk. I try to get the kitchen cleaned and peg the clothes out onto the line so I am finished most of that by the end of the meal. I eat a little with him but I find my appetite is gone by then.

After dinner I help Arthur to the toilet if he needs to and then help him back to the queen-bed. I change his pad and make him comfortable. Each time he sits or stands up, gets in or out of bed or needs re-positioning in bed he needs me to physically help him move.

I need so much help now and I am getting so little. The attitude is that if I want Arthur home I have to do it, because the authorities won't help much when some-one gets too frail. It doesn't matter what the aged person wants or what the family wants, all you get is 7 work-hours a week, which is 1/2 a hour a day with two people.

I often have no appetite, and start eating food and can't finish it. I have gone from eating 3 Weetbix http://www.weetbix.com.au/ for breakfast to barely forcing down one. I am too tired to read books, crochet or much else. I cry a lot and fear the future when I will be alone.

My adult children are not much use, two live in London, one in Perth, Western Australia thousands of miles away and all live full busy lives, one son here is has a job that takes up all his time, and he can't visit without Arthur's condition upsetting him. The other son is my main contact but he has his own troubles that worry me. My Mother is a great emotional support but I am aware of her health problems and that I need to help her out too. I have to say I am lonely. I miss the times when Arthur and I used to go out, and I know he does too. I must say I as a young mother, I never envisaged a time when my children would not be there for me, but that is the modern family way, far-flung, fractured and distracted.

I said to Arthur we have to make the best of this. He says he has to come to terms with his life as it is. He is resilient and I must be stronger.

Wednesday, November 10, 2010

Bamix Forever

With myself almost numb from shock, we talked with  the Meals on Wheels lady who organised Arthur's deliveries of a hot lunch 5 days a week. This is more to get people into the house than to ease the load on me, as cooking for Arthur is not a problem, and to ensure if I am out, someone will be checking on him at lunchtime, as this is part of their role too. For $A6.50 a day Arthur will get his lunch delivered from tomorrow.

I bought a new Bamix hand-held blender yesterday. My own one, a secondhand 1970's vintage, stopped after 40 years of service in home kitchens. This Swiss made appliance is worth the extra money, $200 as apposed to about 40-odd  for lesser brands, a Bamix will last 25 years without missing a beat. This thing will probably out-live me. I must leave it to someone in my will.


Monday, November 8, 2010

Finite. All is finite.

Well that was a shocker, no denying it.

The service providers came around today to do an assessment for Arthur's home care. As he is weaker than when he went into hospital, he needs two people to do his personal services so he has to have his hours of care cut in half. He can only have half an hour in the morning and evening with two people to change his pads, wash and make him comfortable. There is no funding for anything more. We either buy in services, which is impossible because I can't work, and we spent a lot of money on stuff for Arthur (his electric wheelchair and other equipment cost thousands.) or I do it all. Arthur was a working class man in his day, and is not a wealthy. It would not take long for our savings to be eaten up with the cost of services these days.

Otherwise I provide most of the services myself, and that is what I will do because we won't have him go into a nursing home, not while I still breathe.

The shock came when Arthur told the social worker he will only live another year. He says he knows what is happening with his body and that is what he knows. I am distraught to hear this in such a concrete way,

I remember him telling me one day, "All good things must come to an end." I was frightened and told him that that day was far off. It was then. He was just starting to lose some of his mobility and independence. I was right, it was far off. The problem is it is not far off any longer. It is now.

I am in shock. I am in grief. I am stunned.

I expected to get him back much as he was before he went into hospital, but I was naively wrong.

I also thought that for the $3,700 every month these agencies get from the government for Arthur's needs, they could come up with more than some equipment and one hour a day for two people to come and change his pad, give him a sponge wash and two showers a week, and a podiatrist once every 8 weeks. If Arthur gets bedsores or anything and he needs nursing, he may get less personal care than that. They don't make any profit. Apparently after administration, reporting (paying all the captains and officers) there is nothing left to pay for many deckhands to swab the decks and hoist the sails, so the ship doesn't sail very far.

I doubt I will be able to work and I really do not know if I can keep studying for my qualifications, but the worst is the complete unmitigated sense of shock and horror at finally voicing my fear, knowing life is finite, that the separation of the five months, when Arthur was always coming home, will one day be final.

Sunday, November 7, 2010

A quick cry never hurt anyone.

I've just ducked out of the kitchen for a private moment, which is hilarious if I consider it as anything from zero to a couple of billion people could read this blog post; though I certain the number will be closer to zero than anything else.

I served Arthur the roast beef. He definitely wanted it put through the blender so I did. I also reshaped it with a biscuit cutter to resemble a solid piece of meat, as well as finely chopped cooked beef can do so. I took the half a baked potato and scooped out the middle, mashed it and put it back to it looked like a baked potato. Arthur wanted the broad beans minced too, but I said they were soft and he needs something in its real form on the plate.

I had cooked the rolled beef piece by browning on all sides and putting into a tall baking pot. I threw in half a bottle of good red wine, opened and left over from sometime or other in the last few months, some onions, a tomato, garlic, fresh parsley and a sprig of fresh rosemary (both from my garden) and seasoning. I baked with the lid on until it as done. I took the meat out and pureed the veges and pan juices into a sauce.

I poured the sauce over the meat and decorated it with parsley. After I gave it to him, I got so sad because Arthur has loved his food always and we ate some fantastic meals in our time, both in restaurants and at home. Giving that small meal made me so sad, it has me in very, very silent tears.

Okay, time to let go of that and go get my dinner and eat with Arthur.

Kitchen Scales. Cooking for the elderly challenges creativity, and other stuff,

Yesterday was a long day.

With only minimal services of one hour in the morning to assist with Arthur's care, I am physically tired. At least it  is free exercise. I don't have to pay for weightlifting, walking, or stretching classes and I don't even need to leave home.

Preparing meals is going to be a challenge. The rehabilitation facility (TCP unit) advised me on preparation of Arthur's food and I suppose I was still hoping he could eat his meals chopped finely instead of the pureed stuff he was bored with in their care. For his first meal home, I tried a lamb chop with the meat cut finely and re-arranged back next to the bone so it still  looked like a chop. He got through half of it and some veges but gave up and had a larger dessert. Yesterday I carved chicken off the bone into small pieces. I crumbed and fried them and served them with gravy and mashed potato and other mashed vegetables. Arthur tried hard but finally said it would have to be pureed, He said that he didn't mind it that way, just that in the TCP unit the food got boring. I am sure Arthur was disappointed he couldn't eat my food but just didn't want to upset me. He will keep things to himself to protect me.

Of course I feel like I am a failure. I have been taking a lot of time and care to prepare food that is interesting and that Arthur would like. When I was studying and working full-time, he did all the cooking,, shopping and most of the housework, as he was retired from the workforce. Then our roles reversed when I left the workforce to look after him. Now this one big thing I could do, feed this man and feed him well, seems to be gone, I am looking for the bright side, maybe there will be less washing up?

Yesterday was not good in that the facility was right again, when they said older people sometimes lose continence after a bout of illness and do not regain it. Arrangements have been made and the pads Arthur used to wear for outings in his wheelchair are now a permanent fixture. It seems to be an affront to this proud man's dignity but like a lot of things he appears to be accepting it, How much he really is upset by all this will only come out when he finally confides in me, which he will.

I hesitate to speak of the next thing as it is a difficult subject and not to Arthur's dignity to discuss it, but this blog is intended to be the story of this journey. It is to leave the story of Arthur and me here when it is finished and no real human story is a series of montages. Unlike the movies and television dramas our lives do not move smoothly from scene to scene, there are multiple threads, messy interruptions and inconclusive alleyways. Arthur for the first time lost control of his bowel, after he took a senna-type tablet last night.

I dealt with it, efficiently and pushing a veil of detachment on the process. I can remember thinking, at least there is no problem there, the little brown tablet worked. He was standing up so it was an easy one. For Arthur it was shocking, he was apologetic, embarrassed and in tears. I did not tell him it was nothing, because it wasn't but I said it was okay, it was dealt with and it was over and, 'let's move on'. I didn't have the heart to tell him all I cared about was that everything was working, "Hey, it's great, the drains are clear.'

Arthur keeps apologising for putting him through this. I reassure him and say it is fine, I am happy I am here for him. That is a great joy for me. That gets me to the kernel of my feelings. I am so very glad I am here for him, the thought of him going through this without me here to help distresses me terribly. To have to cope with this without me, to be dependent and alone, to have no-one to call on at night or be without someone looking out for his interests to me would be the greatest tragedy.  I worry now for when my kids get old, who will care for them, for by that time I will be long dead. I hope they have partners who will love and care for them when the time comes.  I am so grateful I am here for him now,

I almost left him a couple of times. I came very close when I was forty years of age, Our differences seemed greater than our connections and I thought about what I wanted out of life and it was not what I had. Arthur was of that very English style of conditional love, that drove me up the wall at times. He could not, on the other hand, understand how I seemed to put up with anything my kids did. "I would never speak to them again until....." he would say.  I would tell him that is not how I did things. But a crisis brings things into sharp relief. Breaking his hip in 1988 and becoming a victim of a home invasion in 1998, brought my feelings for Arthur into focus and I could not bear the thought of him being alone.

I know it will be better when our full services are restored. Just when you are at your lowest, the glories of the service from an outsourced service provider kicks you down one step lower, but that is a topic deserving its own page.

Yesterday was a long day. Today I am doing pot-roast beef and will try pureeing it and st\ill making it look like roast beef, I am not sure how, but we will see.

Today is not going to be a very short one either.

Friday, November 5, 2010

Be it ever so humble.

There is no place like home. Especially so if you are elderly and you have lived in it for 47 years.

Arthur set sail from England in January 1963 for Australia with his first wife (who died just 18 years later) and two kids. One daughter is long gone on her way and his son, who has profound Downs Syndrome, now lives in a community-based supported care home. Arthur moved into this house and has stayed here ever since.

Arthur left England saying goodbye to his Mum and Dad, and only sibling, an older brother. Travel then was not the easy and relatively cheap thing it is today. I am sure his Mother wept many tears for the loss of her youngest and probably favourite son, not knowing if she would see him again, and that his Father, who being English would rather have chewed off his own toes than be seen to cry, would've silently dispaired at his son's decision. As much as they knew that the move to the warm climate of Australia was the best for Arthur's constant chest problems (and the doctors turned out to be so right about that!) it would have hurt. I know the silent screaming heartache of giving your kid the last hug before they set off overseas, and wondering when or if you will hug them again.

Arthur's parents were not far wrong, they died in their old age never seeing their son again. Nor did they ever again lay eyes on their daughter-in-law or grandchildren  (And the same for the parents of his wife, too.) There lies a hidden human cost of immigration.

My mother experienced a similiar fate, although she never left Australia. She certainly left her home state with my step-father but her separation was courtesy of his controlling, bullying ways. He forbade her to contact her family and as she could not read or write, he was able to prevent from her sending even birthday or Christmas cards. Her parents lived in a remote rural Australian town and had no phone in the house. When I was in my teens my Mum found out her parents had died. They never knew what happened to their daughter or their grand-daughter (me) or ever saw my siblings. The most touching thing is that they must have hoped and prayed we were alive as they left a bequest in their wills for each of us. I was a teenager then but my step-father took both 100 pound cheques from the solicitor, got our signatures on them and used the money on himself. (He probably spent it on drink.)

Both my Mum and Arthur did not see their parents age. Arthur's plans to take his wife to England for their first visit back to the UK never happened as she died of a heart attack just a week or so before the departure date. Arthur did get to England in the next year, only to learn that his brother had just months left to live.

Arthur told me that never seeing his parents age meant he did not know what was in store for him. My mother remembers her familiy and friends as she last knew them in her twenties. Both Arthur and my Mum  have no role models for ageing. They have not seen a person they love become weak and frail or watched them relinquish the extremities of life until only the core things they love and care for matter, much like discarding the layers of wrapping on a gift until all you have is that one cherished item.

I grieved with Arthur for the loss of his lifestyle, his dispair at not being able to do the things he always did, like walking down the street, getting into a car and driving to a football match, just being the man he used to be. There is not much of that grief left now as it is all about what he has left, not what is gone.

I have not the ignorance of bliss. I know what is in store for me. I see it in Arthur. I see it in my Mum.

I too, lost contact with my Mother. I broke contact with all the family for fifteen years until I learned that my step-father had died.Then I found my Mother, reunited, and built a strong relationship with her. Now when I watch her age I see me in the years to come.

Arthur is home at last and so my active caring role starts again. I too have had my life stripped to the basics.  I cling to the core elements, the things we both share for now.

That is the gift for me, under the wrapping.


Saturday, October 23, 2010

Not quite yet, my friend.

A bout of influenza can keep a young person away from work for a week. For a frail older person, a week of flu can turn easily into six weeks in hospital, followed by 12 weeks in a rehabilitation centre. It does not help when the patient at first refuses to have the doctor in because they do not want to end up in hospital for months, and thereby ensuring they do. Need I say this is exactly what happened to Arthur, my husband. He went in during the worst of Winter in Adelaide and he will get back home as the grapevine bursts into Spring bud.

After all the antibiotics and exercises, the meetings with physiotherapists and my daily visiting taking in taped English Premier League games, all seemed set for a home-coming on next Monday the 25th of October 2010. All we needed was a care-plan written up by the home services provider (who shall remain un-named). All, you hear me say, all?

The social worker at the rehab unit delivered the bad news, not bothering to conceal her frustration and anger. Despite weeks rolling by while Arthur ate pureed food, struggled against pain and discomfort to get his walking strength back (Rocky has nothing on this guy), sitting through bored hours watching TV and waiting for me to bring in the latest Manchester United, Chelsea, Arsenal and Liverpool matches to watch, no care plan is ready.

Arthur has to stay put until the 3rd November. I did point out that some-one in a hospital bed is waiting for Arthur's bed in the rehab unit of the nursing home, and there is a person in the Accident & Emergency waiting for that hospital bed, and some-one is on a gurney in the corridor waiting for that A&E bed, and that some elderly person at home with the flu  is just about to come in with a chest infection that needed antibiotics a week ago, but they wouldn't call a doctor because they didn't want to end up waiting in beds in various nooks and crannies of our health system. The social worker agreed but told us the un-named non-profit provider delivering Arthur's government funded services couldn't be shifted. It is a bit like Scunthorpe Under 14's Boys trying to get past the Man United defence. No, it is worse than that because the Scunthorpe boys at least have hope and can try their luck. Arthur has neither hope nor luck to count on for getting home before the 3rd of November.

I am in awe of our health system and its many dedicated workers, especially the ones at the coal-face, However, some decisions of middle management are indeed puzzling.

By the way, who is that middle management bloke running around asking if anyone has seen the Scunthorpe team bus?