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 Care 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 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.
Lisa: Right instead of you being the main focus, you would have the chance to spend the time with your father…
Lisa: …and go through the grieving process and be supported by others through hospice. And I’m so happy that you brought this up today because many people look at hospice as being a death sentence. That word is scary. But they don’t realize the wonderful support services that can be given. And you brought up such a great point the fact that people don’t have this because they start off with hospice it doesn’t mean they stay with hospice to the end. They might be able to then be on their own with their family, if they are doing better like you mentioned recovering.
Thank you so much. I really appreciate you being here today to share with others what you wish that you knew.
Lynda: Well I really hope that it helps someone to consider that you don’t have to do everything yourself, that there is help out there. And I know and I’m very grateful Lisa that you have this kind of service so that people can hear about it, because again without knowledge you don’t have the opportunity to make a better choice for yourself.
And so what I went through I hope nobody has to go through. And as I’m taking care of right now, the caregiver for my mom, I’m very grateful to have that information in my mental file. She’s doing well but it was never something that was necessary, even for other people I would tell them think about it, look into it, don’t be afraid. Just find out, just find out about it. So thanks again for the opportunity to share.
The Facts About Hospice and Palliative Care
Palliative care is specialized medical care for people with serious illnesses. It is NOT dependent on the prognosis. Palliative care gives you more control over your care with a plan of care that is reviewed daily by your team of doctors and other providers. It is an extra support in addition to your current care providers with your primary care physician directing your care and the team.
- Provide patients with relief from symptoms, pain, and stress of a serious illness.
- To improve quality of life for both the patient and the family.
- It is a team approach of doctors, nurses and other specialists who work together with a patient’s other doctors.
- It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
- It is a partnering of care with you, your family, and other providers.
- Expert management of pain and other symptoms.
- Help navigating the healthcare system.
- Guidance with difficult and complex treatment choices.
- Emotional and spiritual support for you and your family.
- You can have curative treatment with Palliative care.
Hospice is a philosophy not a physical location of care – the individual may be at home, a freestanding hospice center, hospitals, and skilled nursing or assisted living locations.
- It is about caring not curing
- Services include care management as a holistic approach for all aspects.
- Regular visits by a registered nurse with specialized training.
- It includes family support – focusing on the individual and the family rather than the disease.
- It promotes relief of the symptoms of the individual and promotes comfort to improve the quality of life.
- It also includes psychosocial, physical, speech, and occupational therapies if in the care plan.
- Often integrated services such as massage therapy, Reiki, aromatherapy and others are offered.
- Spiritual support if requested.
- Bereavement counseling during the illness and often support for many months after death.