Symptom Time Line

    The question I am asked most often is "How long?" While the end stage path varies from person to person, there do tend to be commonalities that
    can help us to "see what we're seeing," and often, to estimate how much time might remain.

    First of all, how do you know "it's really time"? There are a few points that tend to help families realize that the disease is truly progressing and that
    preparations are in order. This discussion can be found on the page entitled
The Hospice Decision.

    Many of us are late to call in hospice---there's no shame in that---and we don't realize until later, with 20-20 vision, that the help probably could
    have been used earlier. It seems that most brain tumor patients tend to average 1 month or so under hospice care, though the disease may have
    been progressing well before that time. Our community, then, offers hospice workers little exposure to and experience with this disease, so it's
    important to know that unless your specific hospice nurse has worked with end-stage brain tumor patients before, his or her answer to the "How
    long?" question almost always tends to be a longer-than-actual prognosis.

    Why? Death to other forms of cancer tends to be much different. There is likely to be a longer period of weakening and decline, and more of a
    heads-up from the vital signs. With other cancers, there tends to be an organ-by-organ alert that the body is losing the battle. In contrast, some
    brain tumor patients---especially those in their 20s and 30s---might still be conversing or even walking themselves into the bathroom just a couple
    of days before their passing. Nurses whose experience has been largely earned with other cancer care aren't always aware of one critical point: the
    brain, as a master circuit breaker, has the capacity to shut down the body in one motion, without taking it organ by organ.

    So...how long? This list is a very, very loose guideline based on what has happened to other people, but it may be helpful in beginning important
    discussions with the patient's doctor and family. In order to serve as a helpful guide, most of what's listed under each time heading would need
    to be occurring. Remember, though, that everyone is different. Too, patients in their 20s and 30s as well as those whose brain tumor journeys
    have already been quite long tend to spend longer in each of these stages.

   
3-6 Weeks Prior to Death

   
Motor
       Increasing weakness on the affected side
       Falling due to resistance to accept help
       Need for more assistance with walking, transfers

   
Urinary/Bowel
       Urinary/bowel incontinence may begin
  
   
Cognitive/Personality/Speech
       Confusion and memory loss
       Harder to sustain a conversation
       May say some odd things that make you think "Where did
that come from?"
       May ask less about the next treatments or appointments
       May ask clear, rational questions about death, arrangements, etc.

   
Physical
       Increasingly tired, more easily "wiped out" after simple activities or outings
       Headaches may indicate increased swelling
       More likely to nap or to phase in and out of sleep

   
2-3 Weeks Prior to Death

   
Motor
       May begin to see weakness starting on the
non-affected side
       Affected hand may curl in or be kept close to the center of the body
       Legs begin to buckle, eventually leading to dead weight when attempting to stand
       If still walking, may wander around the house a little, as if restless
       May find it difficult to hold the head up straight or may slump over
  
   
Urinary/Bowel
       Urine becomes dark (often described as "tea-colored")
       Less warning before urination (more urgency)
  
   
Cognitive/Personality/Speech
       Less interest in matters of the home and family, hobbies, or world at large
       Detached, without curiosity
       Harder to have an effective adult-peer conversation
       General restlessness/agitation
       Word-finding difficulties (conversation may be very slow)
       Confusion over what time of day it is (sundowner's syndrome)
       Speech may be slurring or trailing off, unfinished
       May begin saying things that sound like awareness that time is growing short
       May begin to seem more "childlike"
       Confused by choices; yes/no questions seem to work best

   
Physical
       Losing interest in transferring or leaving the house
       Seems to feel safest on one particular piece of furniture
       Begins to have problems swallowing, if not already
       Appetite may become sporadic
       May be sleeping 20+ hours a day, with short alert times between sleep
       May doze back off after eating
       May describe vision changes such as double vision, loss of peripheral vision, or black spots
       No longer interested in activities that require close vision, such as reading

   
1-2 Weeks Prior to Death
 
   
Motor
       Often, completely bedridden
       Younger patients may still be stubborn about getting up, though requiring assistance
       May hold on to the bedrail or to a caregiver's hand, hair, or clothing very tightly

   
Urinary/Bowel
       Usually incontinent by now
       May continue to express urinary urgency, without producing anything

   
Cognitive/Personality/Speech
       May find loud or multiple sounds irritating
       After waking, seems confused for several minutes
       Staring across the room, up toward the ceiling, or "through" you
       May look at TV but seem not to be watching it
       May make mention of "getting ready" or "having to go," without knowing where
       May refer to travel, packing, or gathering clothes
       May talk about tying up loose ends (specific to the individual)
       May mention seeing visions in the room (I've heard everything from horses to angels to deceased mothers-in-law)
       Communication seems to take more effort and makes the patient winded or tired
       Doesn't initiate conversation as much, though still giving brief responses to questions
       Agitation may build
       Likes to keep the primary caregiver in sight and may panic when he or she is not in the room
       May seem especially irritable with large groups of visitors or young children (probably because understanding conversations requires more work)

   
Physical
       Sleeping "almost all the time"
       Can sleep even in a room full of activity and noise
       Harder to rouse from sleep
       Brief, scattered periods of alertness
       Increased difficulty swallowing pills or liquids
       Vision deficits increase
       Eyes may look glassy, milky, cloudy, like "elderly eyes" or "fish eyes"
       May reach toward the head during sleep (may indicate headache pain)
       May have a distended abdomen
       Vital signs are likely to still be good
       May begin to have need for pain management

   
5-7 Days Prior to Death

   
Motor
       May restlessly move the legs, as though uncomfortable
       Most patients would no longer be leaving the bed by this stage
       May reach up or out with the arms
       May pick at the bed linens as if covered with small objects
  
   
Urinary/Bowel
       As liquid intake decreases, output also decreases
       The bowel becomes quite sluggish and there may be few/no bowel movements

   
Cognitive/Personality/Speech
      
Minimally responding to caregiver's questions
       May begin sentences but not be able to finish them
       May say things that are impossible to make out or things that don't make sense
       May chant something ("Ohboyohboyohboy..." or "Ohmyohmyohmy...")
       May continue to seem restless and fidgety, as if late for something
       May be irritated by strong sounds or odors

     Physical
      
May be taking only minimal amounts of food (a spoonful or two, here and there); some, however, continue to eat well until about 48 hours
             before death
       Decreasing intake of fluids
       Administration of meds becomes harder or impossible
       Dosing of meds becoming sporadic due to sleep schedule
       May find it hard to clear the throat as mucus increases
       The voice may lower and deepen
       May have a wet cough
       Vital signs often still good
       Nearly always sleeping or resting
       May be uncomfortable being moved during clothing or linen changes
       Dramatic withering of the legs due to inactivity (skin 'n' bones)
       May have a low-grade fever

   
2-5 Days Prior to Death

   
Motor
       Motor movements (eg, waving or hugging) are likely to appear weak
       Unable to help the caregiver by leaning or moving during linen changes

   
Urinary/Bowel
       Bowel activity likely will have stopped
       Urine output will lessen considerably
       Urine color usually lightens

   
Cognitive/Personality/Speech
       Very little interaction, often no initiation
       Speech may be quite slurred and hard to understand
       May sit in the room with others and say nothing for hours
       Could be described as "neither here nor there"
       Restlessness and agitation give way to calm
  
   
Physical
       Hands and feet may become cool
       Forehead and cheeks may be warm or hot
       Thighs and abdomen may be warm or hot
       Hard to keep the eyelids open, even when awake
       May spend a couple of days with the eyes closed, even though still slightly responsive
       Minimal interest in food
       May turn or clench lips to indicate refusal of food or pills
       May seem unaware of how to use a straw
       May have had last decent fluid intake
       May bring mucus up into the mouth with a productive cough
       Last Decadron dose may be administered (either intentionally or due to difficulty of administration)
       Some drugs may be given only by suppository or dropper now
       Vital signs often still normal, but some report cardiac changes (eg, racing heart)

   
Final 8-48 Hours

       Very difficult to rouse from sleep or elicit a response from
       May have no response or only nonverbal communication (eg, winks, waves, or nods)
       May seem relaxed and comfortable
       Usually very minimal or no urine output
       Reaches a point of unresponsive sleep (coma), which can last from 1 hour to most of the day
       No longer any involuntary movement during sleep (no fidgets or eye movements)
       Mouth may slacken and eyes may remain partially open during sleep, as voluntary muscle control is lost
       Vital signs may be OK until just hours before death
       Blood pressure may drop significantly
       Heart rate may be twice-normal (120-180 beats per minute)

   
Just Hours

       No response whatsoever from the patient
       No movement
       Breathing changes (of any kind at all)---sometimes faster, sometimes slower; sometimes harder, sometimes more faint; sometimes louder
            sometimes inaudible
       Mucousy breathing (the "death rattle"; harmless echo of air over mucus)

   
Time of Death

       May let out a sigh
       Respiration may slow so much that caregivers believe the last breath was taken, but a few more reflex breaths may follow
       May open the eyes as they pass on
       Will appear very relaxed

   
Shortly Afterward

       Many have commented that the face looks younger, the forehead looks free from wrinkles and cares, and the steroid bloating begins to disappear.