TOM and Netta Long had planned a holiday break in Scotland to celebrate their 25th wedding anniversary back in 2007.
Instead, they had to settle for a weekend in Westport because Tom’s deteriorating health didn’t permit a return to where he had previously worked.
While both of them did their best to enjoy themselves, Netta recalled at times it was akin to looking after a young child, as she was on constant alert.
Almost 18 months earlier, Netta had become a full-time carer to look after her husband’s medical needs in their own home.
“It was an awful change. No one applies for this job. Caring for Carers has helped me overcome moments of despair and low points,” she said.
Caring for Tom doesn’t upset Netta as much as watching a big strong man lose so much weight as a result of his condition over the last seven years.
A skilled carpenter, he loved anything to do with wood and when their two children were young, he enjoyed telling them all the things that could be made out of trees. He completed all the repairs and maintenance in the house for years.
If any Government minister looked after a high-dependency patient for 24 hours, Netta believes they would adopt a totally different approach to carers.
Tom was always very active but back in 2003, family members began to notice subtle but distinct changes.
The 63-year-old’s voice started to change and people found it difficult to understand him as he was no longer coherent.
Gradually, he got worse and a series of mini strokes resulted in a deterioration of his general condition.
The Scariff man hasn’t spoken for about five years and Netta rarely gets any reaction out of him.
If he is feeling a pain or an ache, this is detected by taking his temperature.
Tom has required 24-hour care since November 2005. In addition to Aphasia, he suffers from front left lobal dementia, which affects his voice and his general health isn’t good.
Netta didn’t want to place him in full-time residential care because his inability to converse would cause him huge frustration for himself and other patients, who may not understand the limitations imposed by his condition.
Confined to bed for most of the day, Tom has to be fed with liquidised food, washed, changed and dressed and constantly monitored to ensure he isn’t having a mini-stroke.
Netta kept listening to a monitor that was placed in a sitting room during the course of the interview on Friday evening last to ensure Tom wasn’t in any distress.
“It is a very lonely life because you talk away to him but you rarely get a reaction. I feel I probably talk more to him now than when he was well. When the carers and my children are gone home, you are left on your own for most of the time.
“I need people to come in and talk to me because I can’t get anything back from Tom, he is not able.
Nothing can prepare you for being a full-time carer because every patient’s needs are different.
“You are in and out the whole time taking care of his needs. You give up your own life, you don’t have a life. I have to get someone to stay here if I want to go out.
“The first time Tom went for respite care, I cried for two days because I felt so guilty. Now I realise I need a break.
“Tom was a great husband and father. Unfortunately, it has come to this stage where he requires full-time care. I feel I must do my best for him. I still have him, thanks be to God,” she declared.
Only for the home care package provided by Caring for Carers, there is no way Netta could look after Tom on her own in her own home. A care assistant helps Netta wash, change and attend to Tom’s needs a few hours a day, totalling 20 hours weekly.
He gets respite breaks in Raheen and St Joseph’s, where exceptional care has been provided. When Tom returns, Netta knows he is happy to be home. Occasionally, he provides a gesture to indicate he is happy and comfortable being cared for at home. He recognises the voice of Netta and his two children and will look when they come into the room. The care assistants are also great friends of his.
The qualified care in the home assistant also provides valuable interaction for Netta and a second medical about Tom’s wellbeing if his wife has any concerns about a possible change in his overall condition. Another care assistant comes in for about 30 minutes at night to help her put Tom to bed.
“The home care package is invaluable. You need two people to change him and put him to bed. I wouldn’t be able to keep him here. Without Caring for Carers, I would be totally lost.
“If Tom was in a nursing home on a full-time basis, they wouldn’t have the staff to give him the time I can give him here because they have other patients to look after. My whole day goes looking after Tom.
“You finish one meal and you are getting ready for the next one. He has to have regular drinks because he gets dehyradated very easily,” she explained.
“If Tom is awake at night, I am awake. If Tom is sick at night, I am up. My life centres on Tom at the moment. I can’t look beyond today, tomorrow is another day.
“Carers are saving this country millions of euro. We are leaving a place in a nursing home free for someone else. This seems to be forgotten by people making the cuts,” she said.
Her daughter drops in in the morning and evening before she goes back to Galway and her son calls when he is off.
Netta knew she had to put on an extension with a bedroom and wet room for Tom because he couldn’t go upstairs any longer.
Caring for Carers organised an information meeting in Derg House, Scariff with the aim of starting a group in the town in 2007. Having attended this meeting, Netta realised the best approach was to get an assessment completed by an occupational therapist of Tom’s accommodation and medical needs.
Elected chairperson in 2008, Netta stressed the emotional support provided by other East Clare carers in the group, some of whom have more challenging situations, has given her a timely boost when she was feeling down.
“It might be a guest speaker and a cup of tea. It gets you out of the house for about two hours a month. You can leave early if you have to go home in a rush. It is very informal but it provides very important support and information for members.
In addition to their monthly meeting on the second Thursday of every month, the group obtains guest speakers on a wide range of therapeutic issues and some hobbies for carers such as flower arranging for its 30 members.
A few members complete creative writing on a Thursday morning. Outings to places like Glór are organised on a regular basis and members look forward to the annual Christmas dinner.
Funding is provided by Caring for Carers, Ennis, and this is boosted by a coffee morning in Scariff.
Netta tries to attend the annual Caring for Carers’ conference and respite weekend and enjoyed the most recent one in Killarney last March.
“It is a great weekend. Even a simple thing like getting your meal served up to you is great. You come back refreshed and hearing other carers’ stories, you realise some of their cases are even worse,” she said.
She also found the 13-week free Caring for Carers’ course for a carer looking after a loved one in the home in Scariff very informative for both the carer and the patient.
The nurse-led clinic provided by the organisation provides great reassurance and advice for carers like Netta, who can speak to a friendly nurse about any concern or medical issue relating to their patient.
All the staff in the office also provide great back-up and assistance for carers.