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Hospice Care/My mom has stage 4 pancreatic cancer

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Question
My mom has had stage 4 pancreatic cancer that was diagnosed in may. She's getting worse and worse now that its Christmas time. They weren't sure if she'd make it to Christmas at all. She's not in hospice yet but it's getting close. What do I need to expect from here on? Chemo is starting to not help at all. Her numbers keep going up no matter what. She's fading away right before my eyes and its the scarest thing I've ever dealt with. I lost my dad in '99 and now I'm losing her. I was just wondering on a ball park figure how much time we have left together? I'm falling apart!

Answer
Dear Heidi--

I am so sorry to hear about your mother's illness, and especially since she is so close to the end and is not receiving hospice care.  Quality of life, enjoying as much as possible the time we have left, that's the goal of hospice.  Pancreatic cancer, particularly when it has spread, is not a curable illness.  If chemo is not going to cure her, then it is hard to consider what the purpose might be.  Most people like the idea of cure but if there is suffering without the possibility of cure, then most people look for ways to be comfortable, to manage the suffering so they don't have to experience it.

You have not told me anything about her symptoms or behavior, so I can't really advise you about how much time you might have left.  Even if she was receiving hospice care, there are no guarantees, just best guesses.  But with hospice care, symptoms would be related to the progression of her disease or side effects of medications meant to manage symptoms, and there would be someting I might be able to say to be helpful.

Talk to your mother about how she wants to spend her last days with you.  Find out about hospice.  If she is over 65, hospice is a Medicare benefit.  If she is under 65 and has insurance, there may be coverage.  Otherwise, you might negotiate with a hospice to pay for services (hospice is reimbursed on a daily basis, and that amount covers all the care for the patient's comfort--you can look up Medicare hospice benefit on the web and find out the details).  If there are no funds, all hospices are required to take a certain number of patients for free.

Some people, for whatever reason, spend their last days in the pursuit of cure.  Maybe they are afraid of dying, or maybe they are in denial about the state of their bodies and their illness.  And some belief that dying, if done right, is done in a hospital.  But many are coming to really appreciate and look forward to finishing their days free of tubes and chemicals, with their anxiety eased, pain managed, surrounded by the family and friends, people who matter to them, in their own homes--surroundings that are familiar and comfortable.  Find out what your mother would like and then do your best to give that to her.

If you need more specific help, please feel free to write again.  Sometimes people write me several times (thought mostly not, because their questions are simple and direct).  I am online several times every day in case there is a question from someone who needs an answer fast.

You must look toward your own future, and plan to care for yourself.  Your mother's death will be hard for her, but harder still is what she fears may happen to you after she is gone.  It is important that you can honestly assure her that although you love her and will miss her, it is OK for her to go, that you will be all right.  You can do that by finding the resources available in your community.  Hospices provide bereavement support for 13 months after the family member's death.  Hospitals and churches often know where groups are held for people who have lost someone they love.  There are free services--you do not need to pay a private counselor for what amounts to a normal reaction to a normal life event.

If you can think of any other question, any other way I can help you, please do write again.  You and your mother are in my prayers and thoughts.

Christine

Hospice Care

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Christine Johnson

Expertise

I can give suggestions, encouragement and direction on what hospice is and is not, when it is appropriate, and how to go about getting it. I am familiar with Medicaid and Medicare hospice benefits. I can answer general questions about disease process, what dying looks like, how hospice handles pain and other symptoms, what to expect from a hospice when end of life nears. I can provide support, direction and encouragement related to spiritual matters and psychological matters related to death and dying.

Experience

I am a certified hospice and palliative care nurse, and have been the director of nurses for three hospice centers, under two different companies. I have also worked as a contract hospice nurse for a large American hospice company. On a personal level, my father died without benefit of hospice (it was not popular then). I have taken care of dying patients in hospitals and recognize that for most of us, it is preferable to die at home (or in our residence, wherever that may be), comfortably and without anxiety. Also I had no support when my father died; hospice clients are the whole family (however that is defined by the "patient"), and support is provided at least a year after the patient passes. These are the sorts of things (and probably others) that I can help with.

Organizations
HPNA (Hospice and Palliative Nurses Association)

Publications
none yet

Education/Credentials
Registered Nurse (TX), Licensed Marriage and Family Therapist (TX) ADN Nursing, Excelsior College, Albany, New York (2004) 4.0 GPA BA, Psychology (minor Social Work), Oklahoma University, Norman, OK (1986) 3.67 GPA MHR (MA) Human Relations, Oklahoma University, Norman, OK (1988) 3.5 GPA

Awards and Honors
Phi Beta Kappa (and others)

Past/Present Clients
Unable to name as this would violate their privacy (and HIPAA....)

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