Ms Jane Johnstone:

There are a lot of unknowns. For any of us unknowns cause a lot of stress and when it is someone's life and soul it is more so. The past 22 years of my life have been completely dedicated to my sons. They are such a part of me and I am such a part of them. We appreciate the opportunity to speak to the committee. I can see that members want to listen to us and to family carers on how we can negotiate this together. At the best of times family carers can feel very alone and very isolated from society. If it were not for people such as Ms Cox and Family Carers Ireland it would be even more so. With all due respect to the committee it has been very good in welcoming us here and I appreciate that Senator McGreehan has even asked the question as to what the committee can do.

Family carers may not even have the time to sit down and read legislation never mind process it in our minds and then apply it to our own situations. I know that some people will say they cannot think about it because it is too scary but it is coming down the line and it will impact in their lives. We need clear information on the Act for family carers. Family Carers Ireland will do this and we would love the input of committee members, even with their constituents. We need something that is clear and concise that is easy to read and easy to understand, bearing in mind that these people are already very stressed and very busy. If carers are given the information they will be able to apply it to their own life circumstances and the people they are caring for. We are heading into an unknown after this. Communities, society, the political system, Family Carers Ireland and carer such as myself all need to come together. It is a powerful piece of legislation and we desperately want it. Senator McGreehan asked whether there is a feeling of carers being disempowered. I would have to say that there probably is. I certainly feel it. A lot of it is perhaps based on the fact that I do not have the knowledge and that there is a gap and we do not know how it may change in future.

There are unknowns with regard to physical issues. My son Evan is 22. When he started walking, when he was a year and a half, my late husband and I put a fence around the house so that he would not get out onto the road and be killed. We live in rural County Wexford. That fence fell down last year and I put it back up again. He is 22 and he would still go out onto the road. It is a country road and he would be gone in a minute. Am I impeding his decision to go into the front garden and go out onto the road? We are back to the issue of unwise decisions. He would be killed. I am questioning myself as to whether I am doing something wrong by keeping my front door locked because I am afraid somebody would get out. It almost brings in a little bit of guilt. I question things that I always thought I did in my son's best interests. There are all of these grey areas.