‘Trying to get through this life is not normal. There must be something else’
Families have had their lives turned upside down because there are no structures to help them, writes Wayne O’Connor
NIAMH had just learned how to cycle before she was diagnosed with leukaemia. She was already living with Down syndrome before the diagnosis last May. The 12-year-old spent much of her summer in hospital in Crumlin. She has since spent more than six hours every Tuesday travelling between Dublin and her home in Leitrim with her mother and carer, Mary Doherty, for treatment.
“Everything circles around Niamh at the minute,” said Mary.
“If Niamh is well, life is good. If Niamh is sick, we are all changing our direction to accommodate her. It becomes a focus in the family.”
Niamh receives oral chemotherapy at home. Her mother’s background as a nurse means she can get bloods and other procedures carried out without leaving the house. However, this leaves her tired and lifeless.
This is a different Niamh to the one who enjoyed running and playing with her sisters, Mairead (14) and Aoife (11), before her diagnosis. She loved school and attended a local Down syndrome group to mingle and play with friends.
Now, her mobility is limited. She uses a wheelchair, misses school once a week and has not been attending her group sessions because she cannot partake in any activities.
“That is a huge change,” said Mary.
“I haven’t seen Niamh running since May and prior to that I had spent a long, long time to get her pedalling a bicycle. She was doing that but she hasn’t been pedalling her bicycle or her go-kart since. Hopefully, longterm, we will see her doing that, but in the near future I can’t see it happening.
“It took her a little bit longer to learn how to cycle but we didn’t give up on it. We just kept trying it and trying different modes of pedalling and, eventually, got her there. She had her little bicycle and was very proud of herself but hasn’t done any of that [since May]. A walk through the house is the main kind of walking she will do now.”
Niamh’s treatment is being scaled down. The weekly trips to Crumlin will now happen every four weeks. However, they will continue in this format until August 2019. Niamh was 11 when she received her diagnosis and will turn 14 when the treatment ends.
“Niamh’s life is very much on hold. Because she is neutropenic, which means her immunity is low, I can’t bring her out to the cinema or get involved in the Down Syndrome group in Leitrim because I need to protect her from getting an infection.
“It will impinge on her. These are three very formative years for her. Hopefully she will get there, it is just going to take longer and a little bit more work. It is hugely upsetting.”
This has had a huge impact on Mary.
Before the leukaemia diagnosis, Niamh had a packed schedule that included a series of cares and therapies. Mary incorporated these with a work schedule and getting her daughters to school.
“She had a whole multidisciplinary approach to her care. She had physio, occupational therapy, speech therapy, psychology. All of those services were involved and, certainly, there was extra care at home doing speech therapy trying to improve her.
“I still wouldn’t look on that as care. It was just me, as a mammy, doing what any mammy would do for their child.”
The level of care Niamh needs means Mary has had to cut back her hours in work. After 25 years working for the HSE, she is now limited to 15 hours per week nursing at the orthopaedic unit in Sligo University Hospital.
This has come at a significant financial cost for the family. After going through a lengthy process Mary is receiving a carer’s benefit. However, the added costs associated with the care she is providing, aligned with the fact she is working less, means she has taken a significant financial hit.
“When Niamh was diagnosed I had to come out of work. What I found extremely frustrating was that I had to use my sick leave. There was no other leave available to take so that I could continue receiving pay.
“Our policy was that I could get full pay for three months and half-pay for three months. After this six-month period, there is no more pay. That is something that needs to be addressed.
“I was working for 25 years and never took sick leave. Now, my sick leave is gone. It is a big deal that after all those years there was no emergency leave. There was no way of saying: ‘This child is critically ill, she needs her mother.’
“We are very much propping up the system and family carers are saving billions of euro for the health system by caring for their loved ones at home. There is a financial story to tell. I am certainly taking home less money than I was. I am lucky that money is there and I can survive on it, but there are others who cannot.
“There are also extra costs. We are travelling up and down to Dublin a lot and that brings costs. The tolls, the parking, eating out — it all adds up. There is no comeback from that.”
Family Carers Ireland (FCI) has called for the introduction of a statutory mechanism that would entitle carers to support services.
“There is no consistency in the support services carers get across the country,” said FCI’s Catherine Cox.
“It depends on where you live and it depends on the budget in your area. That goes back to the fact that care in the home, and the support people get, is discretionary.
“A carer has no legal right to get support. We want a statutory entitlement to home care but that has to include a needs assessment of the carer and the person being cared for. Based on the assessments a care package should be put in place that would allow a carer to care safely for their loved one.”
Recent figures suggest there are 200,000 people in Ireland dedicating their lives to caring for a loved one. FCI has warned that many of these are caring for more than one person.
Fiona Kelly Campbell, from Gorey, Co Wexford, is a full-time carer for her three children, Jay (20), Sam (17) and Daniel (9). The recent passing of her father means she is also working to keep an eye on her 84-year-old mother.
“My caring started 17 years ago when my second child was born. He was diagnosed with cerebral palsy after being born very prematurely at 25 weeks. He went on to have a lot of surgeries and interventions. He eventually walked at four years old despite us being told he would never walk.”
Sam has daily physio sessions and wears a splint on his right leg. This provides support and raises the leg because it is shorter than his left one.
Daniel was also born prematurely at 29 weeks. One week after he was born, he developed a bleed on his brain and the family knew he also had cerebral palsy. All four of his limbs are affected. He is quadriplegic, non-verbal and can display episodes of challenging behaviour.
Shortly after Daniel was born, Jay, who was then 12, was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a rare disease that affects kidney filtering units and slowly reduces the functionality of her kidneys. It cannot be treated with a transplant and requires daily tests, monitoring and treatment. Jay is studying in UCD and tried to live on campus but had to move home in first year because of her condition.
The level of care Fiona provides means she cannot work. She was forced to leave a longterm job she loved to become a carer.
Her husband, David Campbell, does shift work for a cable manufacturer. She receives a carer’s allowance but this is capped at a rate of one and a half despite the fact she is caring for three people.
“The means test for carers needs to be looked at or relaxed,” said Fiona.
“Once you become a carer you are put into a box. Normally if you have a child going to college you have an opportunity to work overtime or save money. We cannot do that. The means test means if David works any more our carers benefit will be cut.”
The couple have had to start taking separate holidays with Jay and Sam and they rarely get out of the house together.
“We both got invited to a wedding in Portugal but David had to go without me because I had to stay with Daniel. He went with Sam. Jay and I got away on a cruise another time and that was handy because the ship was equipped with a hospital and linked in with hospitals along our route.
“These are the things we have to consider.”
She said it was vital more help was offered to carers. A lack of available services means they receive very little support.
An outstanding mortgage means they cannot afford to move to an area where there are more support mechanisms and, in the near future, their house will have to be adapted to meet Daniel’s specific care needs.
“Just because Jay and Sam are being cared for does not mean they can be an asset to the country in the future. In terms of help from the outside, no, we haven’t had much. Daniel’s [public] health nurse came to me and said we don’t have a budget for any respite for you. The Jack and Jill Foundation came here for a year for eight hours per week and that stopped in 2010.
“I am fairly calm and optimistic but I am not the one going through what my children go through, hours in hospitals and needles and treatments. I can’t complain but I need help.
“This is not normal. Trying to plod along through this life is not normal and there has to be something else out there.
“I am a mam first, before their carer. I have been doing this for the last couple of years because I thought it was normal. I haven’t known anything else.”
‘It was just me as a mammy doing what any mammy would do for her child’