One patient with glioblastoma still alive nine years later
by jojo7 on Sun Feb 01, 2009 12:00 AM
My husband has been battling stage 4 stomach cancer for the past 16 months, he has had 3 different chemo regimens and a month ago we were told there was nothing left to do.
Last week it seemed like someone flipped a switch, he became jaundice and itched incessantly. He is increasingly withdrawing from friends and loved ones. We have now engaged hospice. They say we may have two weeks or so left...
It would help me to know what is going to happen next as I have been told there is little time left. He is still up and about, quite lucid, and as he has always been. If anyone has an idea it would help me process things.
by sandbash on Sun Feb 01, 2009 12:00 AM
Hospice should be able to provide you with the information that you will need. They gave us a binder when my mother was with them, which really helped us during the last stages.
God Bless you both!
by cal1519 on Wed Feb 04, 2009 12:00 AM
I thought this would be helpful. Hang in there. We are there with you in thought and prayer.
When confronted with approaching death, many of us wonder when exactly will death occur. Many of us ask the question, "How much time is left?" This can often be a difficult question to answer. The dying do not always cooperate with the predictions of the doctors, nurses or others who tell family members or patients how much time is left.
Hospice staff have frequently observed that even the predictions by physicians about the length of time from the original diagnosis till death is often inaccurate. Many families report that "the doctor told us he [the patient] only had so much time left, and he's lived much longer than that." ... or a similar story. Statistical averages do not tell us exactly how long a particular patient has to live; they can only serve as a general guideline or point of reference.
Although statistical averages do not help much in an individual case, there are specific signs of approaching death which may be observed, and which do indicate that death is approaching nearer. Each individual patient is different. Not all individuals will show all of these signs, nor are all of the signs of approaching death always present in every case.
Depending on the type of terminal illness and the metabolic condition of the patient, different signs and symptoms arise. An experienced physician or hospice nurse can often explain these signs and symptoms to you. If you have questions about changes in your loved one's condition, ask your hospice nurse for an explanation, that is one of the reasons she is serving you.
There are two phases which arise prior to the actual time of death: the "pre-active phase of dying," and the "active phase of dying." On average, the preactive phase of dying may last approximately two weeks, while on average, the active phase of dying lasts about three days.
We say "on average" because there are often exceptions to the rule. Some patients have exhibited signs of the preactive phase of dying for a month or longer, while some patients exhibit signs of the active phase of dying for two weeks. Many hospice staff have been fooled into thinking that death was about to occur, when the patient had unusually low blood pressure or longer periods of pausing in the breathing rhythym. However, some patients with these symptoms can suddenly recover and live a week, a month or even longer. Low blood pressure alone or long periods of pausing in the breathing (apnea) are not reliable indicators of imminent death in all cases. God alone knows for sure when death will occur.
increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
withdrawal from active participation in social activities
increased periods of sleep, lethargy
decreased intake of food and liquids
beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
patient reports seeing persons who had already died
patient states that he or she is dying
patient requests family visit to settle "unfinished business" and tie up "loose ends"
inability to heal or recover from wounds or infections
increased swelling (edema) of either the extremities or the entire body
inability to arouse patient at all (coma) or, ability to only arouse patient with great effort but patient quickly returns to severely unresponsive state (semi-coma)
severe agitation in patient, hallucinations, acting "crazy" and not in patient's normal manner or personality
much longer periods of pausing in the breathing (apnea)
dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
other very abnormal breathing patterns
severely increased respiratory congestion or fluid buildup in lungs
inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
patient states that he or she is going to die
patient breathing through wide open mouth continuously and no longer can speak even if awake
urinary or bowel incontinence in a patient who was not incontinent before
marked decrease in urine output and darkening color of urine or very abnormal colors (such as red or brown)
blood pressure dropping dramatically from patient's normal blood pressure range (more than a 20 or 30 point drop)
systolic blood pressure below 70, diastolic blood pressure below 50
patient's extremities (such as hands, arms, feet and legs) feel very cold to touch
patient complains that his or her legs/feet are numb and cannot be felt at all
cyanosis, or a bluish or purple coloring to the patients arms and legs, especially the feet and hands)
patient's body is held in rigid unchanging position
Although all patients do not show all of these signs, many of these signs will be seen in some patients. The reason for the tradition of "keeping a vigil" when someone is dying is that we really don't know exactly when death will occur until it is obviously happening. If you wish to "be there" with your loved one when death occurs, keeping a vigil at the bedside is part of the process.
Always remember that your loved one can often hear you even up till the very end, even though he or she cannot respond by speaking. Your loving presence at the bedside can be a great expression of your love for your loved one and help him to feel calmer and more at peace at the time of death.
If you have questions about any of the changing signs or symptoms appearing in your loved one, ask your hospice nurse to explain them to you.
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