Caring for a loved one who is dying from glioblastoma

Caring for a loved one who is dying from glioblastoma multiforme brain cancer is overwhelming and difficult. Caregivers often find it helpful to know what they can expect during this time. We’ve compiled a list of the signs and symptoms of the glioblastoma death process, broken down by stages so that you’ll know approximately what will happen during your loved one’s final weeks of life.

Death from other forms of cancer tends to be much different than death from glioblastoma multiforme. With other cancers, you’re likely to see a longer period of weakening and decline, a more obvious change in vital signs, and organs shutting down one by one. Why? The brain, our body’s master circuit breaker, has the capacity to shut down the body in one motion without taking it organ by organ. This means that some brain tumor patients, especially those in their 20s and 30s, might still be conversing with you or even walking themselves to the bathroom just a couple of days before their passing.

Because every patient is so different, the following list should serve as a loose guideline. However, this list may be helpful in beginning important discussions with your loved one’s doctor and other family members. If you have more specific questions about what your loved one is experiencing, reach out to a member of your medical team.

Prior to Death

Common signs and symptoms three to six weeks prior to death


Motor symptoms:

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

Urinary/bowel symptoms:

  • Urinary/bowel incontinence may begin

Cognitive/personality/speech symptoms:

  • Confusion and memory loss
  • Difficulty sustaining a conversation
  • Saying odd things that don’t always make sense
  • Asking less about the next treatments or appointments
  • Asking clear, rational questions about death, funeral arrangements, and so on

Physical symptoms:

  • Increasingly tired and more easily wiped out after simple activities or outings
  • Experiencing headaches that may indicate increased swelling
  • More likely to nap or to phase in and out of sleep

Common signs and symptoms two to three weeks prior to death


Motor symptoms:

  • Experiencing weakness 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 the patient attempts to stand
  • If the patient is still walking, he or she may wander around the house restlessly
  • The patient may find it difficult to hold his or her head up straight or may slump over

Urinary/bowel symptoms:

  • Urine becomes dark (often described as tea-colored)
  • Patient has less warning before urination and more urgency to go

Cognitive/personality/speech symptoms:

  • Has less interest in family, hobbies, or the world at large
  • Acts detached, without curiosity
  • Has difficulty having an effective adult-peer conversation
  • Experiences general restlessness and agitation
  • Has difficulty finding words, and conversation may be very slow
  • Has confusion over what time of day it is
  • Has slurring speech that trails off unfinished
  • May begin to show awareness that time is growing short
  • May begin to seem more “childlike”
  • Confused by choices; yes/no questions seem to work best

Physical symptoms:

  • Losing interest in leaving the house
  • Seems to feel safest on one particular piece of furniture
  • Has problems swallowing
  • Appetite may become sporadic
  • May be sleeping more than 20 hours a day with short alert times between sleep
  • May doze 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

Common signs and symptoms one to two weeks prior to death


Motor symptoms:

  • Often completely bedridden
  • Younger patients may still want to get up, but they will require assistance
  • May hold on to the bed rail or to a caregiver’s hand, hair, or clothing very tightly


Urinary symptoms:

  • Usually incontinent
  • May continue to express urinary urgency without producing anything


Cognitive/personality/speech symptoms:

  • May find loud or multiple sounds irritating
  • Seems confused for several minutes after waking
  • Stares across the room, up toward the ceiling, or “through” you
  • May look at the TV but doesn’t seem 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
  • May mention seeing visions
  • Communication seems to take more effort and makes the patient winded or tired
  • Doesn’t initiate conversation as much, but still gives brief responses to questions
  • May seem agitated
  • 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 symptoms:

  • Sleeps 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
  • Increased vision deficits
  • Eyes may look glassy, milky, cloudy, like “elderly eyes” or “fish eyes”
  • May reach toward the head during sleep, possibly due to headache pain
  • May have distended abdomen
  • Vital signs are unlikely to still be good.

Ultimately, the signs and symptoms of cancer death will be different for every person, and it is difficult to say or predict what will actually happen in a patient’s final weeks and days. The lasting effects of glioblastoma multiforme or any other brain tumor will vary from case to case, and it is best to discuss the signs of decline with your medical team.


If you find yourself here because you are losing a loved one to glioblastoma multiforme brain cancer and you’re searching for resources and support, the Glioblastoma Support Network is here to help. Visit our Resources and Support page for education and support for caregivers that can help guide you on this journey.


You are not alone. Help is available.

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