NAPWA

Harry

I have never dealt with the number of friends that I have lost over the years. I know one day I am just going to sit down with somebody and bring those issues forward because I think that it might be worth while to do that. I believe it’s important to move my life forward, and the grief about their deaths is an obstacle to doing that, but even after ten years I am simply not ready to look at it.

Grieving is very important. Grieving for lost friends is about putting them in a meaningful place. I have created a memorial garden at my home that will be a permanent fixture for the people who have passed on, so I have done something for them.

I think those people who went before us were real crusaders. They put up with an awful lot of crap, a lot of discrimination, a lot of harassment and some horrible stuff around treatments. Without those people who have gone before we would not be where we are today.

I do feel some guilt, in the sense of “why was it not me, why them, what was different?” I still don’t understand it, why some people have got AIDS so quickly and gone so quickly, but I’m still here. I lived the same lifestyle, I did everything they did. I find it very confusing.

Leo

When my partner died it was just like my whole world collapsed. I had no idea that grief was such a strong, devastating emotion. It is the most powerful emotion I have ever experienced. It took me a long time to work through that, with the help of friends. I don’t think you can ever underestimate what grief is about.

I coped with it by crying a lot, trying to keep myself occupied with my job and seeing friends and getting out and being busy. But inevitably it catches up with you. I used to find that I would get sad when I was having a shower in the morning. I don’t know why. Standing under a hot shower is such a nice feeling, you are very relaxed, and all of a sudden these thoughts would come and I would be crying in the shower. I would get out of the shower feeling better.

I would not welcome grief but it was a great strengthening experience. Thankfully, I am pretty much over that now, but that seven years since he died has been a long time.

Rob

My partner and I were diagnosed with HIV about ten months apart. I made a commitment when we were diagnosed, that we were in this together and that I would support him to the end. That was my driving force.

He had many long term hospital stays and that was extraordinarily exhausting. A lot of incredibly emotionally draining episodes occurred. Towards the end though, things did improve and he died with me holding him. After he died I did feel a sense of fulfilment that I’ve done my job and I’ve done it really well. The loss was immense, even with the problems we had. Then I had to move on and do my grieving and create a new life.

I think dying at home with the right support services is a sensible option, unless you are critically ill in intensive care in a hospital. Even then hospitals will facilitate you being able to get home. I think the familiarity of your environment, especially in my partner’s case when he was blindA randomized trial is "Blind" if the participant is not told which arm of the trial he is on. A clinical trial is "Blind" if participants are unaware on whether they are in the experimental or control arm of the study; also called masked., the constancy of support from the same people, all helped to make that easier. He was happy to sit propped up with pillows with people sitting all around the bed in the few weeks beforehand chatting away. He enjoyed himself and that was to me a very affirmative experience, very empowering.

You do get a good sense of closure. To have those last moments with someone is extraordinarily special and it enables you to acknowledge their death faster.