Grieving Yet Grateful Families Tell Their Nurse: “This World Needs More People Like You”

Carol Williams was our first AIDS nurse when we started Community Health Network.

Carol Williams, right, in 1989 with Dr. Steve Scheibel, Dr. Bill Valenti and Rep. Louise Slaughter. Provided by Dr. Bill Valenti

Carol and I talk every week, chatting about the past, present and future, and sharing life events. She mentioned during one of our conversations that she had letters from patients that she had saved and she was going to give them to her children. I asked if she would send some copies to me so that I could have them for the archives we’re putting together for the UR library.

The letters are very touching and they speak to the close bond between patients and families and their caregivers. That isn’t always found today.

One letter is from a mother who had a family meeting with Carol when their son first came back to Rochester. He was having a lot of trouble coming to grips with his loss of independence and his illness that would likely take his life. The date is November 14, 1990.

A grateful mother writes to Carol Williams. Provided by Carol Williams

“Dear Carol, Bob and I would like to express our appreciation for your taking the time to see us, to explain what needed to be explained and to direct us to an informed source of information and just for being there to help us. We are facing a devastating situation as a family. And the only consolation is knowing that there are people like you who care.”

She closes by saying:

“This world needs more people like you. Sincerely.”

Here is a letter from Ron and Chuck. They write to Carol on Valentine's Day.

Ron and Chuck sent Valentine’s Day greetings to Carol Williams. Provided by Carol Williams.

“Dear Carol, Hope you have a day of relaxation and indulge yourself in sheer delight on the 14th. We wanted to say we think of you often and treasure our friendship. Your concern and help have made dealing with AIDS so much easier.”

Think of that statement. She really eased that journey and the pain because this was no easy disease to deal with. I remember these two patients, who were often very sick.

“Whenever we think of you,” they wrote, “We think of your bright cheery face filled with laughter, care and warmth.”

What triggered the note was that she helped get them ready to travel to visit Chuck's parents.

He says, “It's nice spending so much time with my folks. Thanks so much for your help and support to make this happen.”

Here's a letter from John Washburn to Carol.

We talked about John before.  John was a very fastidious consumer and expected that things were going to go right and that the health care system would be smooth and efficient. We all know that it isn't at times. And during the AIDS crisis, it was pretty much in upheaval a lot of the time. The date here is 1987.

John Washburn thanked Carol Williams for helped smooth his way through the health care system. Provided by Carol Williams.

“Carol, Thanks for smoothing out the edges that permitted me to be transfused today.”

He’s thanking her for helping arrange a blood transfusion. I mean, think of the sacrifices that people are making here.

“I'm thanking you for my blood transfusion and for all your loving, supportive competence. You are quite special to me and that adds to my joy. Love, Wash.”

That was a name that he used with only with people he trusted. Otherwise, he was John. But when you knew him as Wash, you had arrived.

A mother thanks Carol Williams and the doctors who cared for her son. Provided by Carol Williams.

Here’s a letter on a condolence card, a mother writing after the death of her son.

“Thank you for caring about my son, Bernard. He felt very safe knowing he could call you for advice wherever he was, I'll never forget you and the care you gave him.”

Trust and safety. Huge, huge pieces.

The last one I have is from a friend of a patient.

“It's only been a few hours since Wayne died. … I’m glad we let him have the good life that he had by not having to come to the office every week and how you came to the house, making house calls. … I wanted you to know how much Wayne and I appreciated all your help and everything you've done and I don't think he could have gotten any better care anywhere. … To everyone else, you and I appeared to be a team. But Carol, the credit is all yours. You were the only one I think who realized that I was in the unenviable position between a rock and several hard places.”

A grieving partner turned to Carol Williams in the hour of his loss. Provided by Carol Williams.

She eased the pain of not only the patients, but their family and caregivers.

In this last page, he says, “At the outset, we all knew what the final outcome would be of Wayne's illness. I believe he lasted as long and more importantly, as comfortably as he did. Thanks to you and your care. I will always remember you and I will always be thankful for you for making our lives just that much better. With all my love.”

That tells the story. It is the story of patients and caregivers and families.