* Cognitive problems, even with simple devices, facts, math, and vocabulary (for
example, difficulty in operating the TV remote control, remembering what month
it is, recalling a familiar phone number or making the connection between the
sequence of numbers in one's mind and the numbers on the telephone, or accessing
a particular word)
* Problems with short-term memory (the caregiver may find the need to repeat
things if the patient seems never to have heard them before)
* Difficulty in multi-tasking (having a hard time with a task that has several steps or
having difficulty remembering several things the caregiver asked him or her to do);
tied in with this is a decreasing ability to see projects through to completion
* Suspicion and paranoia, even of close family members and friends (can be made
worse with Decadron increases)
* Simple, childlike trust and quick comfort from soothing, but limited, explanations
* Silliness or a childlike sense of humor
* Testing the caregiver's boundaries of loyalty by "being difficult"
* Enjoyment of children's games and toys without complex instructions (for example,
building blocks, peek-a-boo, blowing bubbles, simple gadgets with lights and
sounds)
* Tactlessness and bluntness
* Loss of the usual adult set of manners (for example, wiping one's nose on one's
sleeve, when that wouldn't have been normal for the patient in the past)
* Irrational fears or obsessive worries which are not eased by repeated assurances or
explanations
* Distrust of change, loss of flexibility, and love of predictable routine
* Possessiveness of the caregiver's time and jealousy of the caregiver's other interests
or responsibilities, probably made worse with cognitive difficulties in understanding
time and chronology (the patient may complain if the caregiver leaves the room for
mere minutes, reads a book in his or her presence, or takes a phone call into
another room)
* Impatience, a desire for instant gratification, and inability to understand caregiver-
imposed delays
* Overspending and overindulging (the night owl patient with access to the Home
Shopping Network and the credit cards can present potential financial disaster)
* Rudeness and sarcasm, even when this wasn't the patient's normal nature (sometimes
a patient will even begin swearing when this wasn't normal previously)
* "Hissy fits" when things aren't going the patient's way
* Exaggerated helplessness, in an effort to monopolize the caregiver's time and attention
* New pickiness or fussiness over little things
* Pouting or "the silent treatment" when the patient feels somehow wronged
* Self-centeredness (the world revolves around the patient's self, needs, and interests;
other things are expected to wait)
* Short attention span, even with topics that used to hold the patient's interest; easily
bored; in need of frequent change of stimulation; inability to entertain him- or
herself; increasing need for the caregiver to provide entertainment
* Decreasing interest in the world at large (the personal world begins to shrink by
degrees as the patient becomes apathetic about world events and other news that
has no direct or immediate impact on him or her)
* Rationalizing, excusing, or denying one's behavior
* Stubbornness for the sake of stubbornness
* Tendency to "pick fights" or "push the caregiver's buttons" intentionally, as a young
child will do to test the limits of independence
* Short-temperedness and inappropriate anger (set off by little things without warning)
* Negativeness, pessimism, and a tendency to be critical
* Whininess (ironically, while these patients often seem stoic and brave over "the big
things," they can often be chronic complainers over minor things)
* Manipulativeness (using tears, melodrama, or ultimatums to influence family members
via their emotions or sense of guilt)
* Inability to empathize with others, rendering the patient incapable of understanding
how his or her actions, demands, or comments may affect the caregiver
* Decreasing ability to understand cause and effect as well as the possible consequences
of his or her behavior
* Decreasing sense of responsibility toward others in the family or toward the care of
the home
* Unreasonable, illogical, or impractical requests or demands that the caregiver cannot
realistically fulfill
* "Like it or lump it" attitude
* Mood swings (higher highs, lower lows, less control over the expression of
emotions, "heart on the sleeve"; can be made worse with Decadron increases)
* Worsening of any of the above when overtired
* Frustrated over the increasing loss of control
* Afraid that his or her neediness might drive the primary caregiver away
* Perhaps unaware afterward that the negative behaviors occurred
* Incredulous if the caregiver reminds the patient of something he or she said or did
earlier
* Frustrated that the caregiver seems not to care enough or keeps arguing over things
* Thinking that the caregiver keeps "making a big deal out of nothing"
* Suspicious that the caregiver, doctor, and others may have a a conspiracy afoot or
may be hiding things from the patient
* Angry at the loss of independence and at having to "ask for permission" for so many
things
* Jealous that the caregiver has so much freedom and operates in a world that is much
larger than his or her ever-shrinking one
* Insecure and afraid as reality blurs
* Looking increasingly to the main caregiver for guidance and interpretation of things
that confuse
* More and more interested in simple, basic needs
* Detached from and unresponsible for everyday household functioning
* Safe in the knowledge that the caregiver has it all under control
* Safe and protected in the presence of the primary caregiver, who has remained a
constant during the journey; less comfortable in the hands of secondary caregivers
* Afraid that something will happen (possibly death) if the main caregiver is absent or
concerned that as they go out of sight they might not return
* Genuinely less interested in much of what the caregiver wants to talk about
* Trying to hide increasing confusion even when conversations become more and more
challenging
* Exhausted, especially if intensive care is occurring 'round the clock
* Tired of tug-of-war confrontations over minor things
* Tired of having to repeat things or give long explanations as a means to an end
* Worried over how much longer this stage might last and if he or she is up to it
* Sad that a high-achieving person has become so simple
* Desperate to reassure the patient that he or she is all right and to maintain the
patient's dignity
* Lonely in knowing that a peer relationship (especially with a spouse) has become
tipped and that the patient is no longer an intellectual equal
* Aware that the patient is becoming less able to make important decisions, and
concerned about handling household and financial matters alone for perhaps the
first time
* If the patient is still highly mobile, afraid that he or she might do something foolish
or dangerous if left unattended
* Frustrated that other family members who are uninvolved have no idea what a
typical day is like
* Afraid that the patient considers him or her a cruel or inadequate caregiver
* Often uncertain of the best responses for the caregiver's odd behavior or requests
* Easily wounded by the patient's comments
* Frustrated that the final weeks may be spent arguing rather than spending peaceful,
high-quality time together
* Fearful that when the patient is gone, only negative memories of these times will
remain
Caregivers should try to remember that, often, "it's the tumor talking" and that the patient's comments are usually not expressions of deep-seated negative feelings. Telling oneself to try not to take comments personally and remembering that the patient and caregiver are on the same side---against the tumor and its destructive qualities---can sometimes help.
Caregivers who have been parents will recall a lot of parenting skills in dealing with the adult patient who exhibits childlike behaviors. Some examples:
Pick your battles. Sometimes it's best to let the patient win a few.
Look for opportunities when it can feel good to say "yes."
See a situation forming before it forms and defuse it early.
Distract and deflect toward another topic if it will help.
Reassure continually, with words and a warm touch.
A kind gesture or compliment can go a long way toward gaining cooperation and
peace.
A sense of humor comes in handy. Don't be afraid to be silly.
Find some moments together that are yours alone. If that means unplugging the
phone or telling someone you'll call back later, doing so will make the patient feel
like the priority that he or she is.
A white lie is harmless when its purpose is to protect someone (for example, "I'd
love to go out and get you some maple-flavored ice cream right now, even though
it's 3:00 a.m. and the roads are icy, but I just checked with the store to see if it was
open and it isn't. I'll go out tomorrow to get some, OK?"...sealed with a kiss).
Don't stoop to their level.
Never negotiate with terrorists. : )
Sleep when the patient sleeps.
Realize the role fatigue plays in destructive conversations, and avoid debating when either the caregiver or the patient is overtired.
Some caregiving debates may not be necessary at this stage. It's doubtful, for instance, that allowing the patient a candy bar would cause him or her harm (assuming swallowing isn't an issue)...nor is it likely that pressing the broccoli issue could work to extend the patient's life. Put things into perspective and choose battles wisely.
Watch out for scripting---when people fall into role traps. If you find yourself going 'round and 'round on the same topic day after day, try not to put on the same boxing gloves.
Rest assured that most patients pass through this phase to one of peace and appreciation for all caregiving efforts.
When your loved one is no longer here, you will find that negative images fade and in their place, you will view the patient in a loving way.
