AboutChristine 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....)
Question My aunt with whom I have been very close is dying of cancer how can I help to ease her pain. She is now asking to see me, I live three hours drive away and am planning to visit. I would like to tell her how much she means to me but I understand her decision to stop treatment. My problem is that she does not want to die yet, 'she says she is not ready, she says she never thought she would end up like this'. She has non-hodgekins lymphoma and is now paralused down one side, has deteriorating hearing, eyesight and is a little disorientated with slurred speach. I dont quite understand what is happening and ha happened. Her wish was to be in a hospice, where she is. I will feel lost without her, she calls me the daughter she never had. How do I help her when I visit, should I be there when she dies, should I ask her if she wants me to be there.
Answer Dear Amanda:
First let me say how sorry I am that your aunt is so ill, and how happy I am to know that she has you! What a blessing, not just for now, but for all the time up to now.
I do think you need to visit, and while no one can predict when someone will die, from what you write I think there is not much time left. The symptoms you describe suggest brain involvement.
Insofar as easing her pain, I am comforted to know that she is in an actual hospice. These people are very into pain management and symptom management. If you think she needs medications sooner, do not hesitate. They will be grateful that you let them know about her need. It may seem to you that they medicate her a little soon. Be aware that the best way to manage pain and other symptoms is to be a bit aggressive--get the pain medicated before it has a chance to be felt.
A cost of being comfortable and anxiety-free (and ideal situation for dying, don't you think?) is that sometimes clients sleep a little bit more. Rest assured, she knows you are there. I suspect that before she passes, there will be a period of time when she may not seem to know who you are--trust me, on some level, that connection is always there. Do not give up and don't assume that she doesn't hear or understand. While we have little evidence about this, it seems reasonable to assume that this continues--what if it did and we assumed it didn't and acted on that assumption!?
Things you can do: You can say what is in your heart. You'll want specific words, phrases, something to help her because you feel a little helpless right now. What you can give her, no one else can: you. Say what is in your heart, it will be the right thing. Hold her hand. If she liked music, bring some of that. I attended a wonderful death where the family played CD's of peaceful music they had all bought together at WalMart (the client had loved shopping at WalMart!). They played these CD's over and over, even for several hours after he had passed away. This is what worked for this family. You might think of something that works for you and your aunt. Did she like hymns? Enya? Classical music? The lovely romantic music from the 30's, 40's and 50's? Show tunes? Perhaps she had a favorite book? You could bring that and read from it.
It is difficult for me to suggest anything more specific, because I don't know either of you at all. My hope is that these suggestions will either fit for you, or will inspire you to think of ideas that work best.
About being present for her death. It is said that death is hardest on those who are left behind, and that the one thing dying people worry about is dying alone. I would suggest that you try to be there, if the hospice will allow it. By way of illustration, I can share another "good death" story with you--a very grumpy old Navy man was dying of cancer. He slept more and more as his time drew near, and when the time came, his wife, one niece and I (his hospice nurse) were there. His wife stood at the head of his hospital bed (plenty of room since it was up against the wall, along the bed's side), cradled his head in her hands and whispered to him of her love and devotion, encouraging him to make the steps he needed to make, and telling him she would be with him when her time came. It was incredibly moving for me, it was healing for the wife, and I believe it made his passing more pleasant for the patient.
If I can help you in any way, please do not hesitate to write via AllExperts. I'll have you and your aunt in my thoughts and prayers these next few days and weeks.
