Petty humiliations are a daily occurrence
AN insidious by-product of being a carer is the ritual of daily battles and petty humiliations that are part and parcel of seeking help from the State for a loved one.
One of the most ludicrous is that carers must submit loved ones who suffer from incontinence to grotesque measurements of their daily excretions in order to secure free nappies.
This was divulged by Harriet Moran on Frontline last week. She is a full-time carer to her elderly, blind father and her mother, who suffers from dementia and is incontinent. Recently she asked for a different type of incontinence pad for her mother, and more of them. A nurse dropped in a bladder record chart for Harriet to fill in last Monday week. Over three days she had to measure the fluid taken in, in another the amount of urine passed, and fill in a third box in the event of accidents.
"I couldn't believe they were asking me to do this," she said. "How do you measure the amount of urine? You have to put the pad on scales and weigh it."
She rang the nurse. "I said this is disgusting and disgraceful. I can't understand why you are asking me to do this. She just said, 'tear it up'."
The State's rationing of nappies long pre-dates the recession, as recorded by writer Gaia Charis, who lives in West Cork. Her blog chronicles the daily humiliations of a mother fighting for entitlements for her autistic son. She only began claiming those entitlements after her marriage ended and top of the list were expensive incontinence pads. She explained his "gut problems" and the severity of his autism to a public health nurse and when the nappies were eventually approved, was told to pick them up at a clinic.
She was given a fraction of the nappies she required. When she queried this, there were two public health nurses there, "and they both proceeded to tell me that I was using too many nappies and grilled me as to why I was doing this", she wrote on her blog. She explained about her son's chronically adverse reactions to antibiotics and emphasised that leaving him in soiled or soaking nappies could set off a urinary infection.
"I was told I could have the 'standard' allocation, which worked out to an allowance of 2.4 nappies per day.
"Every nappy collection day was the same. I dreaded them and felt sick every time as I approached the clinic, knowing what was coming."
Gaia's son is now 17 and toilet trained and she cares for him at home. But her experiences occurred during the boom years and say much about attitudes to carers.
Money is a huge problem but it is not the only one, she says. Cutbacks are with us but it costs nothing to change practices and attitudes.
"Cutbacks will impact on carers. But with many carers it is not just the child's disability, it is their encounters with the system that is supposed to be there to help us."