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Self From Others
| * Looks "through" or beyond you
* Looks up at the ceiling or over toward a wall
* Usual diversions like TV or conversation don't hold the patient's attention well
* Can appear quite engrossed in this "nothingness" that he or she is looking at
* May have no good answer when asked, "What's so interesting over there?"
|What the Patient May Be Feeling
* Easily distracted
* Less engaged in previously entertaining activities because of either visual or cognitive
* Quiet and introspective
* Unable to relate as well to others' communication (which might move too quickly for
* More comfortable and less tired when merely letting the mind wander on its own
* Relieved to be able to "escape" in this way (especially if no longer physically able to
relocate for privacy)
* Relieved not to have to "entertain" caregivers with responsiveness
* Intrigued by hallucinations within the room that seem very real
* Confused and fuzzy (as if half-asleep or in a post-dream state)
* Trying to make sense of the world immediately around him or her
* Unaware of having tuned out others in the room or how that might make them feel
* Comforted by the nearness of a family member despite a lack of interaction
|What the Caregiver May Be Feeling
* Desperate to engage the patient in conversation in order to preserve their connection
* Awkward about the silences
* Intrigued about the invisible distractions
* Curious to get the patient to open up more about what he or she is seeing or thinking
* Sad and hurt that the patient is beginning to tune out the family
* Afraid that time may be drawing short for holding conversations about important
* Disturbed by changes in the patient's personality
* Not sure what to do to draw the patient's attention back
* Relieved that the patient appears comfortable and relaxed without a constant need for
stimulation and companionship
Even when interaction is not occurring, caregivers can enjoy the companionship of being in the room with the patient, whether that includes sitting near and touching the patient or merely being visible and accessible while reading or watching TV.
Know that your proximity is undoubtedly reassuring, whether or not you receive the reinforcement of feedback.
Don't push conversation when the signals are clear that it will tire or annoy the patient.
Use this time for brief household chores in another room. Always let the awake patient know where you will be, what you need to go take care of, and that you will return quickly.
Use this peaceful time to do small tasks that can be performed within the same room: looking over billing/insurance paperwork, doing a quick manicure, going through the day's mail, etc.
Know that when a conversation is initiated over background distractions such as TV or radio, the patient may find it frustrating and overstimulating and thus tune out.
In order to maximize time spent with the awake patient, you may want to reserve phone use for a time when the patient is asleep or another caregiver is handling his or her needs.
Never talk about the patient and his or her status within earshot of the patient, even when it seems that the attention is elsewhere. It would not help the patient's morale, for example, to hear you tell a concerned relative who phoned in that the patient has not been doing well. When within the patient's earshot, it is usually best to assume he or she can hear what you are saying and would be subject to the same feelings as always:
Not: "I'm glad you called. Today was just so-so. Like, right now,
she seems pretty out-of-it. She just lies there. I don't know if
she can hear me or not half the time anymore. And she didn't
eat worth a darn today. I tried, but she didn't want any of it."
Better: "I'm glad you called. Susie and I are just hanging out, watching
a little TV. I think she's a little tired today, but that's to be
expected when she's dealing with a lot of things happening. No,
she didn't feel much like eating today, but maybe later. Look,
can I call you back later?"
Do ask the patient what is taking his or her interest, as the answer may sometimes give you an opportunity to provide reassurance. My father spent a lot of time staring at a paneled wall to the side of the hospital bed. When we finally asked what he saw over there, he said that it looked like the wall was unsteady, as if it would collapse. We believe that the vertical paneling lines were blurring and wiggling due to vision deficits, giving the impression that the wall was not secure. We were able to reassure him that the room was very safe and that the wall would not fall---he had, in fact, built this room himself as an addition to the house.