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.