Thursday 22 August 2019

'We are both always on a high state of alert - because our son can become very agitated and unmanageable'

'I worry about his future care when we die' says dad of 20-year-old with profound mental health problems

'I worry about his future care when we die’ says dad of 20-year-old with profound mental health problems'. Stock picture
'I worry about his future care when we die’ says dad of 20-year-old with profound mental health problems'. Stock picture

Alan O'Keeffe

In a heartbreaking tale of the struggle born of parental love, a father has given a first-hand account of caring for his 20-year-old son, who suffers profoundly from mental health problems and autism.

His son can become so agitated and anxious that he is unmanageable. This is a serious problem for his parents as the young man is six feet tall and weighs 20 stone.

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In the past, he threw his mother to the ground in a fit of extreme agitation. Another disturbing incident involved the troubled young man saying he wanted to cut out his own voice-box to repair it because he did not like that his voice had changed.

Luckily, they stopped him and he did not require stitches for a self-inflicted wound in his neck.

His father has revealed some of the pressures he feels while trying to cope with the full-time care of his son at their rural home in Leinster.

His story emerged just a week after the publication of a report entitled The Physical, Mental and Psychological Impact of Caring. The report was a collaboration between Family Carers Ireland, the College of Psychiatrists of Ireland and the UCD School of Nursing, Midwifery and Health Systems.

The report revealed that one in every three carers in Ireland suffers from depression, a big increase in the past decade.

It also showed that two in every three family carers provide more than 100 hours of care each week. This is the father's account of a typical day caring for his son, as told to the Sunday Independent:

6.45am - "I get up while the house is quiet to do research and write emails in our constant search for a satisfactory care and support plan for our son. Most of my emails go to the HSE."

9am - "I begin making telephone calls advocating for help for our son. Sometimes the calls and emailing can go on for hours."

10.30am - "My wife gets out of bed after being awake long into the night with our son. He can remain awake until 4.30am some nights so she is just burnt out. She also suffers from an underlying medical condition."

11am - "When our son gets up, we go straight into distraction mode. We do this because if his thoughts are negatively impacted he can go into a crisis very quickly.

"Distraction starts by bringing in his dog so that his focus goes on the dog. Both of us will talk to him about his positive memories such as holiday trips. He is on three types of medication. This time of the morning is critical because we need to get him in a good mood and thinking positively.

"We tell him about his day ahead and we have alternatives in case we have to make changes so that he is happy with the plan."

11.30am - "Mam has his clothes laid out and he might go through a few different sets of clothes before he is happy, although he only wears the same type of clothes. He will not wear shoes or socks because of sensory issues and his clothes are oversized because he cannot tolerate any tight clothing.

"We try to brush his hair but this can be very difficult as it is a constant battle with his self-care issues, like showering. He does not get his hair cut so it is very long."

12 noon - "Our son likes to go on long drives to towns and cities and likes to visit heritage sites, so I will often take him away from home for the day. We will eat out as he tends not to eat at home.

"I could spend the whole day driving around with him. I bring him to places of interest to kill time and keep him occupied. He loves Lego and we go to all the toy shops looking at Lego.

"We may drive hundreds of kilometres in a day. My car has an extra 55,000km on the clock in the first five months of this year.

"A man comes to our home for a few hours every second day funded by the HSE to help care for our son and he may also take him out for journeys. We also have funding for a woman to help give care once a week.

1pm - "My wife will have butterflies in her stomach while we are away because she will be waiting to hear how he is behaving. She will get the basic housework done and then spend a lot of the remaining day making phone calls and sending emails in our constant search for support and care for our son."

9pm - "I usually get home late with our son and then we launch into the evening schedule. If things are good he might play with Lego and might play his Xbox for a while."

Midnight to 4AM - "Our son stays awake and is up until 3am to 3.30am every night and often will watch the same programme on TV or watch the same movie night after night. Sometimes he stays up until 4.30am. I will get to bed around midnight while my wife takes the night shift. She washes his clothes when he goes to bed as, if the clothes he wants are not ready the next morning, this can set him off and he'll become extremely agitated.

"We are both on a high state of alert at all times because our son can become very agitated and unmanageable. We make very frequent visits with him to Saint Luke's Hospital in Kilkenny where we seek the services of a psychiatrist to help him.

"But we are kept waiting in the Emergency Department for hours on end to see a psychiatrist and sometimes we just give up and bring him home.

"I feel extremely isolated and I have suffered bouts of depression when I worry about his future care when we are too old or when we die.

"We are frustrated and disappointed that the HSE has not worked out an adequate care plan for him. We desperately want the health authorities to set up a mental health service for people with autism like they have in Britain.

"When our son was a child, the Ombudsman for Children examined his case and called for effective psychological supports and speech and language supports for him. But they were not provided."

Catherine Cox, head of communications and carer support at Family Carers Ireland, said the new report on the impact of caring showed the mental and physical health of carers nationwide had deteriorated in the past 10 years.

Respite services are vital, yet are now not available to 71pc of the nation's carers, compared to 43pc without respite services in 2009.

She said far more resources are needed for carers countrywide.

Sunday Independent

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