Tom Curran, partner of the late right-to-die campaigner Marie Fleming, reveals the struggles of caring for a loved one and the lack of help from the State.
THIS year my faith in humanity has been severely dented by some things that have happened close to home.
Nonetheless, it remained intact. The decision of the jury in the case of Dr Scully has ironed out all the ripples that remained and my faith has been fully restored.
I feel for the mental trauma that she, her partner and her family must have gone through during the investigation and the trial and the shock she must have felt when informed of the decision to charge her.
But what really needs to be brought into focus is the continual anguish she had been going through in providing care to the daughter she obviously loved so much.
The sad part is, she is not unique. There are more than 50,000 full-time family carers in this country, many of whom are doing exactly what Dr Scully was doing. This care is provided 24 hours a day, every day of the year.
With Marie’s anniversary on December 20, just next week, it brings back so many memories of the years spent providing care to the best of my ability, but always worrying that I could be doing more or doing what I was doing better.
Neither I, nor many other carers, are medical professionals, but in our task to provide the best care possible to the people we love, we learn as we go on. We’re never sure that what we are doing is right.
There is some training provided by organisations like Family Carers Ireland but it tends to be very general and can’t possibly cover every difficulty that will arise. Considering the vast differences that exist in the conditions suffered by the loved ones we care for, it would be impossible to deal with every situation that might arise.
What also comes to mind is the lack of help provided by the State to the army of family carers who do this task, in most cases, without complaint, providing as many hours of care as all the doctors and nurses in the Republic of Ireland combined.
The big difficulty is that, as the condition of the loved one we care for deteriorates, the level of care needed increases, and at the same time we are getting older.
The level of services and help provided has reduced dramatically since the so-called crash and even prior to that they were far short of what was needed. The result of this combination is that the hours and intensity of care needed is constantly increasing but help provided by the State is either static or reducing, putting more of the burden on the carer.
Along with the physical pressure this causes, we also have the emotional and mental pressure of watching the person we love deteriorate, and in some cases like my own, move closer to death.
We must endure this without showing the person we love our anguish and our feelings of helplessness. In my own case, when I tried to get help with this, I was reminded of the pressure on the mental health services and more or less told I was acting like a big baby.
While writing this, tears are streaming down my face as I bring to mind some of the instances Marie and I got through over our years together, some frightening and many heart-warming.
Love is a wonderful thing. Many years before Marie died I was told more than once that she didn’t have long to live. I helped and cared for her through these years as best I could. One particular instant comes to mind. In the severe winter we had some years ago, Marie got pneumonia. This is usually fatal for someone in Marie’s condition.
After many sleepless nights I asked her, as per our agreement, if she wanted to die. She told me with her very weakened voice that this wasn’t the time as she had more to do. So, despite all the odds, with her determination and my care, she survived.
A consequence of this was that some weeks later, while I was out of the house, I collapsed and was taken by ambulance to hospital, where I spent several weeks.
This shows me that during a crisis we pull energy from somewhere deep to keep going but it will eventually take its toll. Lack of sleep combined with mental stress is probably one of the most difficult thing carers have to cope with and will, sooner or later, make its mark.
There is very little and in most cases no help given in emergency situations like this. If this was endured in different circumstances it would be regarded as torture. It is no wonder carers make mistakes in these situations.
This brings me back to Dr Bernadette Scully. How someone found it necessary to bring charges against her is beyond me. Common sense and humanity prevailed in the end but not before putting Bernadette, her partner, and those close to her through hell. It has a sad similarity to the Gail O’Rorke/Bernadette Ford case. The only thing Bernadette Scully is guilty of is loving her daughter and trying to care for her and ease her pain and discomfort. The State, on the other hand, has a lot to answer for.
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