Years ago my sister told me she had three months to live. She asked me to “help her die.” Stunned, I asked her what she meant and she gave me a list with the following:
–die at home
–no artificial means are to be used to keep her alive
–pain meds only to help her with pain
–a living will
–and, to die with dignity.
Diane Gilbert with photo of her sister
We worked everything out as she wanted; her doctor cooperated with us. A living will was drawn up, but at the time, a living will was not recognized in the state. She died at home with no tubes to keep her alive; her doctor or a nurse came in regularly to administer drugs for pain. My sister died with dignity.
The above is all provided with hospice care. But, my sister died in 1978, and there was no hospice as yet. Elizabeth Kubler Ross was talking about a different way of dying but it was not yet accepted.
I never forgot the experience of watching a loved one die.
Thirty years later, after I retired from work, I found I was tired of playing Bunco and cards. I wanted something more in my life. I contacted Casa de la Luz Hospice and became a volunteer. Now, I don’t think I have done anything more important in my life. I had been conditioned to think that my life revolved around the special moments—marriage, raising children, children graduating, more marriages, and then grandchildren. These things are all important and worth remembering. But, by becoming a hospice volunteer, I have learned that great moments can be what may be a small moment. I am thinking of being in the Casa de la Luz Inpatient Unit, sitting vigil. The harpist came in and began to play; I was near the patient. The patient opened her eyes and asked me, “Am I in Heaven now?” I replied, “No. Not yet.” That was a moment, small to others, but big to me that I will not forget.
It doesn’t take me long to become involved with a patient. It’s important to me to learn about the patient’s past, family, likes, dislikes, and what makes the patient smile. The patient learns that I am there to help, to listen, and to be quiet—whatever the patient needs. We share experiences, have new experiences, and all is confidential. I’m surprised, sometimes, at what I hear.
Each patient is different and has different needs. For example, if I am told a patient isn’t eating enough, then I arrange my visits around the lunch hour so that I can encourage the patient to eat. You’d be surprised how many patients now eat dessert first and then their lunch. On holidays I try to dress the season—maybe a Halloween shirt, a Santa hat, or red, white and blue for the 4th of July. Little things mean a lot to a terminally ill individual who is alone and has outlived his/her family and friends.
I am also a knitter. I love to knit prayer shawls and afghans for our hospice patients. I have a memory afghan that I knitted a couple of years ago. It is made up of 20 individual squares, each knitted with a different pattern and then sewn together. Each of the squares was knitted while I visited my patients. I treasure it.
I carry a hospice bag with me at all times. In it I have a book to read, crossword puzzles, snacks and water, and of course, my knitting. As a vigil volunteer, I never know how long my visit will be. I like to be available day or night to keep vigil with a dying patient. If I’m going for a companion visit with a patient, I try to keep it to one or two hours. I watch to see how the patient is holding up; is he/she looking tired? I will drive anywhere to see a patient. Distance is not a problem to me.
I cannot explain the reward I receive by comforting someone who is in need. I just know that the reward is huge, and I think my patients can “feel” my energy.
Being a hospice volunteer is not for everyone. But, to me and the other volunteers, our rewards are well worth it.
Often, I am asked, “How can you watch someone die?” My reply is, “I don’t watch a patient die; I believe that I’m there to help them pass on to the next stage of life.”
By Diane Gilbert, volunteer of two years
Learn more about the various volunteer opportunities with Casa de la Luz Hospice on the Volunteers page of our website.