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.

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.

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.

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.

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.

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.