* May notice double or quadruple vision (several repeated images of the same
item)
* Disturbances may come and go or lessen and worsen over time
* May be more prominent when overtired
* May help to explain some references previously chalked up to confusion
(See also Hallucinations)
* May see straight lines (such as walls) as wavy or in motion
* The patient may be clumsier or more prone to falls once the vision becomes
unreliable, requiring more assistance from the caregiver if the patient is
still physically mobile
* Tumor location influences how extensive any vision-related change will be,
with tumors affecting optic areas possibly resulting in near-complete
blindness by the final days
* Not every patient will experience full or partial blindness, although most will
experience at least some visual disturbance as the disease progresses
* More confused once vision disturbances begin to take place
* Insecure and unsafe, if vision deficits lead him or her to believe that the
room may be unstable or that small bugs are on the bed linens, for
example
* Less able to enjoy TV or reading because of blurred or double images
* Less safe and more tentative while walking
* More dependent on reassurances and aid from the caregiver
* Physically tired if having to support the patient more often while walking,
due to the vision deficits
* Fatigued if a still-mobile patient wakes in the night and needs a physical
escort to the bathroom or transfer from one piece of furniture to
another
* Difficulty in sleeping, if afraid the patient may get up in the night
unescorted
* Concerned about making the home as safe as possible for the vision-
challenged patient who is still able to walk, in order to prevent
accidents
* In a two-story home, may be anticipating the need to keep the patient on
the first level in order to reduce the risk of falling
* May notice that the patient seems more withdrawn in situations when
visual loss impairs enjoyment of an activity
* Sad to see the patient dealing with a new challenge or unable to enjoy a
previously loved activity such as reading or hand crafts
* May wonder what the new vision disturbances mean in terms of tumor
growth, the speed of that growth, and the time that may remain
Ask the patient to describe the vision disturbances, to help determine needs. Is the loss in both eyes? Is it only in the side vision or even when looking straight ahead? Is there blurriness or a loss of sharpness to the edges of objects? Does he or she see more than one of an image? Does it come and go, or is it most of the time? Does the patient notice it more at certain times of the day or when more tired?
Apprise visitors of the defects so they will not, for instance, sit to the side of a patient with peripheral vision loss.
If the patient enjoys books but is now unable to read due to vision disturbances, ask whether he or she might like to hear books read aloud, either by a family member or by borrowing audiocassette readings from the public library. This can be an excellent way to keep alive an enjoyment of literature, and the current selection is extensive, including the works of current authors such as John Grisham and Jan Karon. Offerings include comedies, mysteries, classics, romances, and so much more. Note that some patients who are also dealing with confusion or cognitive processing delays might find it hard to follow even an audio story.
If the patient is still mobile, review home safety, such as bumps in the carpeting, exposed wires along the floor, furniture that juts out or has sharp corners, etc.
Placing frequently used objects on a sturdy tray or table within the patient's reach can help to avoid spills and breaks caused by reaching or misgauging distance.
If worried about the patient's ability to get up safely in the night without help, establish "new ground rules" with him or her, working out solutions such as "Please don't go downstairs on your own without letting me know. I'd rather you woke me than try it on your own and maybe have a fall. I'm not trying to baby you, but if your eyes aren't working at 100%, you could fall and I'd never forgive myself if that happened to you."
An inexpensive battery-operated tap light next to the patient's side of the bed might ensure that he or she won't have to get up in total darkness before reaching for a light.
If experience has shown that the vision deficits are better after rest, encourage the patient to take a nap when the deficits are noticeable.
Discuss with hospice or the doctor whether the vision disturbances might be caused by increased brain swelling and whether increased Decadron might buy some relief from the symptoms.
It is possible that the patient's living space may need to be reduced because of the new dangers from vision loss. Stairs, in particular, present a logistical concern. Approach with sensitivity the topic of adjusting living space, and if hospice is already on board, a social worker would be willing to help address the issue with the patient if necessary.
Safety is nonnegotiable and is one area where a patient's dignity may have to be secondary.
