In the dialogue below, Lynda tells us about her challenges caring for her father who was diagnosed with Prostate Cancer. Like many of my clients who have not been familiar with the benefits of Hospice and Palliative care, Lynda struggled with understanding how Hospice could help her family and that is not about giving up on your loved one but rather focusing on their quality of life for them and their family.
Lynda: Well first off I’d like to mention hospice in orange county because it’s true that nobody can tell the future in advance. And the single most significant thing that I know we have control over is how we respond to things. And so information is key and my first thought when you asked me what I wish I knew was about the great benefits that hospice could have been to me and my family.
My father Lou was diagnosed with prostate cancer and passed away four years ago. We learned that he would not die necessarily from it but that he could potentially live with it. We didn’t realize how bad the disease could progress. We were kind of banking on him being able to function like they said with some measure of health, but in the last few months of his life the disease got really bad. He couldn’t eat, he had horrible time within incontinence and he was in pain most of the time.
Near the end my father’s nurse, he had a home nurse that would come in and visit, she told him that he should probably put his affairs in order. Now he was very good at hiding his pain and so we were kind of shocked to hear that, and we didn’t really want to hear it. I knew about hospice she hinted around about hospice, but what I thought was that that meant we were resigning my father to die. I thought that they would come in and would take over and that it would be frightening.
I had a friend who is a caregiver professional, and she would tell my family some things that he was experiencing as far as the behavior. And behaviors are those that are dying. And it was on point with what he was experiencing. But getting back to hospice I just was very against it because I didn’t really understand the concept.
We then started operating in denial that we could take care of him and we would do what he needed. Since that time, I attended a caregiver conference where I heard a presentation about hospice and discovered that I was very wrong in what I thought about hospice care. They not only support the person who’s ill with hands on care and additional monitoring, but they support the family by answering hard questions on how to prepare, how to cope with what’s going on, how to respond to the behaviors and the physical changes of the person that is dying.
Hospice even helps after you loose the family member by contacting the funeral home. I didn’t know that they did these very, very helpful precious little things that would work with the family of the person who was terminal. And then I found out that it doesn’t mean a death sentence. These individuals are diagnosed as terminally ill but depending on the disease and depending on a lot of different variables they can function to the point where they could be taken off of hospice care for a period of time.
I thought once you were in care they would again come in like gangbusters and just run things until the person died. And I didn’t like that idea. But like I said, I was wrong, wrong, wrong. Being the point person in my family and rejecting the idea of even looking into hospice, I wound up having to deal with a lot of things, on top of my own grieving, that I would not have had to deal with if I had the help of hospice.
I’m very grateful to know now, but Lord I wish I had known what I know now then so that I would have been able to have the handholding I needed. I needed direction. I needed everybody to stop looking at me and asking me what’s next.