In caring for my father, I think it's important to share some of the communication issues you might face in caring for someone with a brain tumor. Deficits in GBM IV patients may vary greatly depending on the tumor location, tumor size, and progression of the disease. Due to the location of my fathers tumor we have been dealing with aphasia since the initial diagnosis.
Wikipedia Definition of Aphasia:
A loss of the ability to produce and/or comprehend language, due to injury to brain areas specialized for these functions. It is not a result of deficits in sensory, intellect, or psychiatric functioning. (Brookshire, 1992; Goodglass 1993) It is also not muscle weakness or a cognitive disorder.
Depending on the area and extent of the damage, someone suffering from aphasia may be able to speak but not write, or vice versa, or display any of a wide variety of other deficiencies in language comprehension and production, such as being able to sing but not speak. Aphasia may co-occur with speech disorders such as dysarthria or apraxia of speech, which also result from brain damage.
Others may not have to deal with such deficits until further along in the disease. In any case, this can be a very frustrating time for both patient and caregiver.From Brainhospice.com here are some ways of improving communication. Please don't be alarmed by the term hospice. These tips are useful to caregivers and patients even in early stages of this disease - especially if the temporal lobe is affected.
Communication with the patient can be compromised by several things, and the breakdown can occur on both sides of the conversation.
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When the Patient... ...the Caregiver...
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has problems with slurring or garbling of speech may find it hard to understand but may feel desperate to hold
on to some quality of interaction
has word-finding difficulties or misuses words may jump in prematurely to provide a word or finish a sentence
has short- or long-term memory loss may find the repetition tiring and frustrating
expresses nonsensical or delusional thoughts may be caught in a cycle of trying to correct the patient and keep things real
rambles or speaks with long pauses may begin to assume that what the patient is trying to say, in itself, makes no sense and may decrease the effort to understand
decreases interaction may feel an incredible sense of loneliness
speaks short-temperedly due to frustration may take it personally due to fatigue and sadness
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When the Caregiver... ...the Patient...
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speaks too quickly may be overwhelmed and may withdraw
asks multi-pronged questions may be very confused by the choices
gives too much information may be unable to cognitively process it or may become angry, frustrated, or fatigued
becomes frustrated by the slow speed of may read the nonverbal reaction and become angry or hurt or the conversation shut down the conversation
finishes the patient's thoughts may feel misunderstood and may become frustrated; this may be especially frustrating to those with prior strong verbal skills
speaks to the patient as one would speak may pick up on the insulting tone, even if unintentional to a child
asks a number of questions in order to may feel insulted (if the answers are known) or frustrated (if
conduct a kind of informal cognitive the answers aren't known and yet he or she is aware that testing the questions are easy)
talks to the patient too quickly after waking may not be able to sort out whether the current conversation is real or a dream
converses with a lot of background noise may have a hard time filtering through the distractions and may (eg, TV, radio, visitors, young children) take longer to reply or may become irritable
withdraws from efforts at conversation may feel lonely and isolated, especially if the primary caregiver because they are so exhausting is his or her main link to the rest of the world
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This section will discuss ways to make the most of the communications you share.
One of the biggest roadblocks to communication during this period is that the caregiver often communicates as he or she always has with the patient, as if there has been no change.
But by this time, most patients have indeed undergone many changes, on many levels, even if the physical appearance hasn't altered that much. When the patient is perhaps
experiencing speech deficits, confusion, fatigue, and personality change, he or she may, in fact, find communication to be exhausting and frustrating. Taking a different approach
may help, depending on the individual patient and his or her deficits.
Take the following example. A woman enters the room to see that her husband, the patient, is beginning to rouse from an afternoon nap. The man's speech is still sound, but his
cognition and memory have been severely affected. Lately, he has been particularly confused by time of day and by questions that require more than a yes/no answer. The house
has been quiet for hours. The wife has been lonely, puttering around doing light chores very quietly so as not to disturb him, and she is pleased now to see him waking. As he works
to reposition himself and "lose the cobwebs" of sleep, she approaches him with a big grin.
"Well, hello there, Mr. Rip Van Winkle! I've been waiting for you to wake up! Are you hungry? I held off on having lunch,
hoping you'd wake up before too long. Barbara from next door stopped by this morning and dropped off a chicken-and-rice
dish that smells delicious. Want some chicken and rice? It's like what your mom used to make sometimes. I put it in the oven
to keep it warm because I wasn't sure how long you'd sleep. Do you want to take your pills now or after you eat? Or maybe
it would be a good idea to take care of business first. Need to go to the bathroom? Why don't we do that first? I'll take you
down to the bathroom, and then I'll get lunch ready. How's that sound?"
Depending on the patient, the internal processing of all this (in parentheses) might go something like this:
(Oh. That's my wife.) "Hi." (Rip Van Winkle? I don't get it. There was a story, I think, about Rip Van Winkle. Or was that...?
I don't know. I can't remember. Am I hungry? I don't know. I was having this dream...or is this a dream? I don't know if
I'm even awake. Something about lunch. When did I last eat? What time is it? What day is it? How long was I asleep? Did I
miss a day? Who's Barbara? Oh, wait...Barbara...I used to work with a Barbara, didn't I? Barbara came here with food? I
haven't seen Barbara in a really long time. Why would she bring food here? Barbara knows where we live? Wait a second---
her name wasn't Barbara. It was Brenda. So who's this Barbara? Oh, I know. Barbara next door. Barbara and Kenny. Not
Kenny. Ronnie. Tommy? What the heck's wrong with me? I can't remember anybody. Do I want chicken and rice? Do I have
to pick one or the other? I know chicken. Chicken is good. I like chicken. Rice...like that cereal, you mean? That's breakfast,
not lunch. Is she asking me if it's time for lunch or breakfast? I don't know. Was Mom here? Wait...no...Mom passed away.
It was...I don't remember when...but we were living in Chicago then. I think it was Chicago. Huh? Pills? I don't know.
Whatever you give me, I guess. I don't even know what time it is. Do I need to go to the bathroom? I think...I think maybe.
How does that sound? Um....) "OK. Yes." (I hope that was the right answer. Oh, that's a relief---she looks happy. I said the
right thing. I must've got it right. Now...oh my...I really, really have to go to the bathroom!)
Most of this is internal processing. All the husband says is "Hi" and in reply, after a long delay, "OK. Yes." The wife, who has stood watching him while all of this thought
took place, is disappointed by the somewhat flat response and isn't sure which question the word "yes" actually answers. She is unaware that so much cognitive work took
place in order to form this meager reply.
A better exchange---and more of a true exchange would be:
"Hi."
(Oh. That's my wife.) "H-hi."
"Do you need to use the bathroom?"
(Do I?) "I...I don't know."
"OK. Let me help you to sit up first." After a few minutes of sitting together: "Want the bathroom now?"
"Um...yes."
"OK."
Afterward, she situates him in a comfortable place. Now that he is more alert, he feels a little less confused. The wife
brings in the chicken-and-rice dish to show him. "Want some? Barbara next door made it for you."
(That smells good. It looks good. I like chicken.) "Maybe...maybe a little bit."
"Good! I'll be right back." She prepares him a dish and brings in the food, a drink, and the midday pills. "Here you go."
Knowing that sometimes lately, her husband has seemed distracted doing two tasks at once---even everyday things
like eating and conversing---she decides to take his lead, see how clear he seems at the moment, perhaps ask him if he
likes the food, and put off an attempt at genuine conversation until after the meal is done and the pills have been taken.
After lunch, he seems more focused, so she leads some light talk, with frequent pauses to benefit his understanding. He
initiates little conversation now, but she finds that he will respond to questions. Yes/no questions seem much less confusing
than open-ended ones, so she uses these when possible. She decides to get out the photo album and look through it together,
in hopes it will stir some memories and elicit some conversation from him. Little prods, such as "Remember this?...Chicago....
Linda's wedding....Linda and Frank....Look at you....So handsome" seem to be helpful. Even if he's merely nodding, she sees
that the visual prompts and pauses are helpful, and he seems to be enjoying the activity and her nearness and attention toward
him. Occasionally, he can answer a more open prompt, and his wife tries to ask questions that she thinks will be easily answered.
Soon, he seems fatigued, and she makes him comfortable again.
For patients who are cognitively sharp but experience deficits in just the delivery of their speech, the approach would, of course, be very different. Some people have had good
luck with a special product called 50 Helps, a type of board with little pictures representing things most commonly asked for by a patient---things relating to eating, drinking, room
temperature, bathroom needs, and entertainments such as the TV. Someone crafty and clever in the family may be able to make a similar board or individual picture cards for the
patient who knows clearly what he or she wants but, due to speech deficits, can't communicate it. The little pictures can also serve as question prompts perhaps.
A great deal of patience may be required as the patient struggles with stuttering, stammering, slurring, or garbling. Such conversations can be very slow and may require time and
effort to clarify what is being said. The patient may become very frustrated, especially if already tired, at his or her own inability to communicate. Looks of impatience on the face
of the caregiver may not go unnoticed, making matters worse. The caregiver will need to find the path that works best for the two of them. Sometimes the patient finds it easier to
communicate when the caregiver is not making direct eye contact; leaning forward and making eye contact may make the patient feel rushed and flustered. On the other hand,
some patients may feel that the caregiver isn't fully engaged if he or she is puttering around the room during conversation. The caregiver's movements may, in themselves, be
distracting to the flow of thought. Figure it out as you go.
After a good conversational exchange, be aware of the factors that made it work. Is there a certain time of day at which the patient is more alert and tuned in? Was the patient
more animated when others were around or when there was privacy? Do you tend to lose him or her too long after a meal, when fatigue creeps in again?
When the patient is delusional or experiencing hallucinations, you will encounter conversations that seem a little wacky sometimes. A recent example, where a woman was in her
final month or so with gbm:
The patient says, "Am I Paul McCartney?"
"No," replies the caregiver.
"Are you sure there's no chance I could be Paul McCartney?"
"Why do you think you might be Paul McCartney?"
"Because I keep breaking out in song in my head."
Another example, from a male gbm patient conversing with his wife:
"I saw Hitler around here."
"You saw what?"
"Hitler. I saw him in the kitchen or...or...in the hallway. He was...in the hall."
"You saw Hitler in the hallway?"
"Yes. He was here before too. He's been here before."
Where does one take this kind of conversation? Well, as professional caregivers to the elderly and the mentally ill can attest, it is often fruitless to try to reorient the patient toward
reality. Such conversations can be extremely taxing to both patient and caregiver as the debate spins around and around, and even if results are achieved, they tend to be temporary
anyway. Rather than spar about reality and fantasy, the best responses to the above examples would be:
First example:
"Sometimes I sing songs in my head too.... Do you know what song you were singing?...
Would you like me to put on some music?"
Second example:
"Let me go check." The caregiver could get up, head to the hallway and kitchen, turn on
some lights, open a few closet doors in the hall, and then return. "He's definitely not there
now. I'll continue to check. If I see anything at all, I'll call the police right away. Don't
worry. I've got this one under control."
In the second example, it's fruitless to get into a discussion about how Hitler died years ago, couldn't possibly be in the house, etc. Much more important than the validity of the
claim is the underlying fear, and once that is addressed, the patient may become relaxed. This is not to say that visions of Hitler won't recur---because they might---but the
caregiver can address them one by one, perhaps escalating the measures taken to "rid the house of Hitler." When the patient is bedbound, a white lie such as "While you were
napping, I had a security alarm put in" or "I heard on the news that the police arrested Hitler and put him in jail" may help to put the issue to bed.
A very good friend who lost her 14-year-old son to gbm in England shared some of their conversations during his last few weeks. Word-finding difficulties frustrated this
extremely intelligent boy and made his status all too clear to his parents. My friend worded it this way, and I think that so many of us can relate: "If it weren't so &^$*% sad,
it would be fascinating."
As possible, remove obstacles to good communication:
impatience
background noise
bad timing
complicated wording
Through patience and receptive body language, communicate your respect for the patient's dignity. At those times when communication hits a road block that can't be surmounted,
you may have to choose between a generic response such as a nod of the head, "Oh, I know," or "Gosh, I'm not sure" or a heartfelt "I wish I could understand. I'm trying. I know
this is frustrating for you. I'm so sorry I can't seem to get this."
As you can see, there is a lot going on. From my experience, communication issues have been one of the most difficult and frustrating aspects of this disease. I wish I would have had this insight when this all started. I had to retrain my own communication skills in order to reduce the stress and frustration that surrounds this very emotionally charged situation.
Hopefully some of this will be helpful in improving your overall patient-caregiver relationship. Again, I've been dealing with this since the diagnosis. This is not just an end-stage thing for many. I will also mention that in researching this disease I often come across statistics and stories that are quite defeating. My goal here is to shield you from some of that while helping you find information that will help you in your journey. I know how difficult it can be to weed through the negatives to find useful information. Having dealt with this disease since the spring of 2007 I've developed a great mental filter in finding what I need to find without getting caught up in statistics!
Again, feel free to email me!
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