Ed Mehlenbacher, CareGiver

Ed, of Tarzana, CA, cares for his partner Don, who has AIDS.

I am not HIV positive, I am HIV negative. Donald and I have been together for twenty-four years, going on twenty-five. Our anniversary is May 14th.

How do you characterize your relationship in terms of care giving for him?

At this point in his disease, it's basically just making sure that he gets the right medicines at the right time during the day. There are some that he takes everyday, morning and evening. There are some that he just takes three times a week. It's just basically just making sure that he gets those at the time that he's supposed to get them.

Previously, between 1993 and 1996, there actually was more actual physical caregiving because he did have a couple surgeries. One for a Pericardial Effusion, which is a build up of fluid around the heart, and then a couple of years ago he had to have an incisional hernia repair. The first incision started to open up underneath the skin in creating a hernia. So he had to have that repaired. It was more actual physical caregiving that there is now.

I certainly don't feel any resentment or pride at being a caregiver in this case. To me that's part of the relationship. That when you commit to someone, you commit to taking care of them if it needs to be done. The certain amount of pride in the fact that he's overcome a great deal of adversity. He was very, very ill at one point -- as they said, he only had about three years to live, that they gave him, but he was able to physically what he was able to do, and I encouraged him to do that and not go beyond his means.

We did have some real lively discussions as far as him eating when he was able to. Sometimes he didn't feel like eating, but I still encouraged him to and to get the calories and nutrition into him that he needed. I think that helped. That was a part of it and I was fortunate enough to be stubborn and game to do it.

I think I was honored to be able to take care of him. That he trusted my judgement enough that most of the time he would go along with what I suggested or recommended. That shows a trust and an honor for me on his part.

If a person doesn't need physical support, very often they will need some emotional or spiritual comfort. So, you're there to listen, there to pray with them if they need it. If they do need something brought into them: candy, food, magazines, anything like that, you find out and you can bring it in for them. If you ever need the same sort of care, comfort and support, then they're there for you also.

How can a community support people with HIV?

Ed & Don at home

Just be accepting of people as they are. AIDS is no more communicable than Hepatitis. So you don't have to be afraid of catching it by being around someone. Don't stigmatize someone just because they've got a disease like AIDS. They're just like anybody else.

A lot of the people that were initially diagnosed really just withered away because they didn't have the support. They were isolated and on their own. Fear took over. People were rejected by their partners, by their families, they ended up on the streets. They'd come home with their clothes and things out on the lawn.

A big part of surviving with AIDS is the elimination, to the greatest degree possible, of stress. By gaining the support of the church and the other people with AIDS, you reduce that stress and you're able to survive better because you've got more calmness and understanding. So, you just generally do better. I've noticed that for a long, long time - that the people who have a more positive outlook and an overall more positive lifestyle do last longer - and this was even before the cocktail came along. But I think that's true with anything and not specifically just AIDS.

Next: Don's story