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Advanced Stages of Huntington's Disease
Caregivers Handbook
Understanding Cognitive
Changes, Slower Thinking, Difficulty Learning, Difficulty Organizing Action, Need For Routine & Consistency, A Neurological
Lack of Self-Awareness, Poor Judgment, Difficulty Waiting, Mistaking The Movement Disorder For Misbehavior
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Understanding Cognitive Changes
At different times, you'll find
he is distracted, confused, uncooperative, angry, and withdrawn. He may demand things from you immediately. He may angrily
challenge you as you try to protect him from injury. He may refuse to do therapeutic exercises with you. He may even yell
and threaten when you ask him to do the simplest things.
When you're trying your hardest to give him the best possible
care in very challenging circumstances, it's difficult not to take it all personally.
As unpleasant as it may be to care for someone behaving this way, never forget that the
problems you're facing are caused by Huntington disease. They are not caused by a dislike for you, by a spiteful attempt to
make your job more difficult, or because he's a bad person. He is not the problem. The behaviour that comes from changes in
his brain is the problem... for both of you.
A critical component of your care is to look carefully at his actions
and to try to determine their cause. Often, what is labeled as "inappropriate behaviour" is an attempt by the individual,
through great impediments caused by the disease, to express his needs or preferences. The better we are at understanding them,
the smoother your caregiving relationship.
Nutshell Case Study:
"Would you kindly warm this up
a bit?" |
Patricia has HD and lives in a nursing home. For several days, she threw her breakfast tray onto the floor
every morning.
The nurse and aide caring for her saw her "agitation" and attributed it to HD. The nurse reported Patricia's
misbehaviour to her physician, who ordered an anti-psychotic drug, Haldol, for the "agitation".
However, further investigation by an aide more familiar with her showed that she had a complaint that she
couldn't express verbally: her coffee was cold. Given fresh hot coffee, the problem was resolved without medication.
The
best caregivers understand that "inappropriate" behaviour may be an attempt to express needs or preferences despite the many
impediments and all the impairments caused by HD.
Here are some of the ways that changes in the brain affect this person
in your care. By understanding these changes, you may be able to better "read" his needs and preferences, and also find new
ways to do the things he wants to do, despite the losses.
Slower Thinking
People in the more
advanced stages of HD no longer think and process information as quickly as they once did. Simply put, there are fewer healthy
neurons available to process information.
This often causes a delay in responding to your requests, questions, or comments. In fact, you may learn that
there is a consistent predictable lag of several seconds before he responds. You may ask, "Would you like to go shopping
today?" Five seconds later you've still not received an answer and you've gone on to someone else. But ten seconds from
when you asked him, he may say, "Yes!"
Too often caregivers mistake the delayed response to mean "No!"
No response may not mean "No!" Allow more time than usual for him to respond. Once you've recognized a delay in responding,
you will be able to wait more easily. You may also find that you can anticipate responses with surprising precision!
Despite
all the challenges the cognitive disorder presents, people want to continue to care for themselves, dress themselves, bathe
themselves, and eat independently. When they don't respond or do it as quickly as you and I, there is often an urgency on
our part to do it for them. By understanding his cognitive deficits and anticipating processing delays, you can wait for him
to respond and allow him to participate in his own care. Those who don't understand the deficits and delay can actively rob
him of his independence or teach him to be helpless.
Nutshell Case Study:
Difficulty Getting Started |
Mark wakes up and sits on the side of his bed. "Good morning, Mark! Breakfast is ready downstairs." Five
minutes later he is still sitting there. "Mark, it's time to wash up and eat breakfast!" Five more minutes later
he's still there. You approach him, hand him the washcloth and toothbrush, motion toward the bathroom door and say, "Here
you go, Mark, start by washing up!" Five minutes later he has washed his face, brushed his teeth and is dressing himself.
Sometimes
initiating an activity-just getting it started-is very difficult. Just like Mark did, people may need a "jump start" from
you. Do the first few steps of an activity with them or for them and you may find they complete the rest of it without
your help. By allowing them to complete it themselves, you are actively helping them maintain their independence.
Difficulty
Learning
There is a myth that people with HD cannot learn new information. If he has learned your name and can
find his own room, he has already disproved that myth!
As HD progresses, it is certainly true that learning new complex notions and concepts becomes progressively
more difficult.
If people tend to learn by doing, it may take them many more repetitions or opportunities to learn.
If they tend to learn by trial and error, they may not learn from their mistakes the first time they make them. But believing
the myth that people with HD cannot learn new information can become a cruel self-fulfilling expectation. Try to give him
all the opportunities he needs in order to learn new information.
Because learning can be more difficult, it's helpful
to keep your instructions and directions as specific as possible. For example, saying, "Please hang your coat up in the
closet" is more easily understood than, "Please put your clothes away."
DIFFICULTY ORGANIZING ACTION
Many of the activities we engage in every day involve
long sequences of smaller activities. Peeling, slicing, boiling or frying vegetables; cooking meat in an oven; and setting
a table are all parts of preparing a meal. Choosing clothes; putting on under-wear, socks, shirts, pants and a sweater; buckling
a belt; zipping zippers; and buttoning shirts are all parts of dressing.
These sequences of activity become "second
nature" or "automatic" and we think little about them when we can do them. Unconsciously, we've organized the information
and actions required to complete them.
Some folks have difficulty organizing these sequences of activity at some point in the course of their HD.
This may explain why some wear a blouse over a sweater, mis-button a shirt, or wear no socks. Writing lists of the steps involved
in lengthy or complex activities may be helpful. You may list in order the steps required to get dressed and tape them on
a bureau. Posting schedules of daily activities and the time to do them may help organize the day.
Need For Routine & Consistency
Picture this. Someone smiles and tells you, "It's time for breakfast!" You've eaten breakfast every
day of your adult life, but you're not exactly sure what this means. You're partially dressed, so you quickly run through
what you have to do before eating. It's confusing. You can't think as quickly as you once did, and you stand there for a while,
just thinking and trying to get going.
A noise in the other room distracts you. Now you can't remember what you were trying to do in the first place! You just
can't figure out what to do next.
You're distracted, confused, and annoyed. Again. At noon you hear someone shout, "Lunch
is ready." And it starts all over... again.
If you're confused and don't know what to do next, sometimes you do nothing. When you're confused, sometimes it's easy
to get angry. When you're confused, you don't know what to expect next. In fact, not knowing what's happening next is exactly
what's confusing you! It's a relief to know what to do next. Although we take it for granted, there is great comfort in knowing
what's going to happen next. That comfort comes from consistency.
A consistent sequence of events or "routine" enables many folks in the more advanced stages of HD to go about their daily
activities without disruption, with greater independence, and in good spirits.
Consistency comes from doing the same thing, in the same order, at the same time, in the same way, each and every day.
When today's events are the same as yesterday's events and those of the day before, it's easy for him to know what's next
in his day.
This routine helps him to predict the day, gives him confidence that he can do whatever is asked of him, builds trust
between him and you, minimizes
distractions that can disrupt daily activity, and makes it easier for him to perform at
his best. You've established a routine in which he can succeed. |
Need For Routine & Consistency continued
In
nursing homes, where there are shifts and many personnel changes three times every day, some times it is difficult to deliver
care as consistently as we would like.
Consider posting daily schedules in the resident's room and providing specific notations
in the chart about his daily schedule, noting the importance of consistency to him and his dependence
on his routine.
If you're unable to keep to his daily routine, then let him know
the day before. In this way he will not be surprised. He will have enough time to dwell on the change and the change will
not become a disruption. Whatever routine you establish, be sure it's easy to follow. Once it's in place, it's difficult to
change it. A caregiver who establishes a daily routine for him provides the best care. There is comfort in consistency, and
power in routine.
A Neurological Lack of Self-Awareness
It is disturbing to
see someone with severe chorea or impaired judgment get into a car and drive off. In the more advanced stages it is
just as disturbing to see him with severe chorea and profoundly impaired balance get up out of his wheelchair and try to walk,
only to fall down. He tries to light a cigarette, even though he can't hold the cigarette still in his mouth or get the lighter
close to the end of the cigarette.
It's easy to say these people are in "denial" about their disability, using a psycho-logical defense mechanism in which
they refuse to accept their limitations.
This becomes a great source of concern and anxiety to those around them, but
the behaviour may actually be due to a neurological lack of self-awareness, an inability to accurately perceive themselves.
Someone with readily apparent chorea will often tell you that he is unaware of it! When you "confront him" with examples
of his own disordered movement or disability, you are asking him to look at something he just can't see.
Interestingly, some individuals, even as they deny that they have chorea or HD, will accept treatments or remedies for
their symptoms or problems. Thus it may not be necessary to "convince" the person that he has HD in order to care for him.
Poor
Judgment
Caregivers are often concerned when they see someone with HD using poor judgment. They often become
involved in "power struggles" as they try to dissuade him from doing something they prefer that he not do.
Nutshell Case Study:
Maureen's Cold Bath |
Maureen has had HD for ten years. She lives in a nursing home. One night she wanted to take a bath. Several residents
on her floor had just completed taking showers that evening. The hot water was not keeping up with demand and was running
from the faucet at room temperature.
As she gathered her shampoo, towel and bathrobe, her nurse aide came to assist her by drawing the water for her tub.
The tub half-filled, her aide turned off the water and put her hand in to check the temperature. "Brrrrr! That's cold!"
she told Maureen. "Too cold for a bath! You'll have to wait until there's more hot water!"
Unfazed by the
aide's report of cold water, Maureen began to get undressed for her bath. "You can't take a bath, it's too cold!"
the aide told her. "I don't care; I just want a bath," she persisted. "Listen, Maureen, you're going to have
to wait; it's too cold to bathe!" scolded the aide. Maureen was angry and quickly getting angrier. She began to disrobe
and move toward the tub. "No," said her aide, "you can't take a bath now!"
Another nurse aide heard
the escalating commotion and joined them in the bathroom. She didn't believe it was worth getting into an argument or worse
with Maureen over the water temperature of a ' bath. She told her fellow aide that she had a good rapport with Maureen and
that she'd work it out with her. "I want to take a bath now!" Maureen shouted at her new aide. "OK," said
the new aide, "let me help you get in." Lifting her leg to get in the tub, her toe touched the water. "It's freezing!
I can't take a bath in that! I'll wait for hot water!" she exclaimed. Problem solved; confrontation avoided.
You
need to know when to "back off". As difficult as it may be, if an individual's poor judgment does not hurt anyone, you might
consider allowing him to do what he wishes to do. You may be allowing him to come to your point of view for himself.
Difficulty
Waiting
An experienced caregiver observed, "People with advanced HD can't wait." As absolute as that
sounds, it's based on a sensitive observation of the difficulty people have when struggling to control their impulses.
When they want something, they want it now. Their demands are driven by the damage to their brain caused by the disease.
They may be impatient, unrealistic, angry, selfish, and imposing but, because of their impaired ability to
inhibit themselves
and to control their impulses when they cant do something, they just can't wait.
If someone asks for your assistance,
give it to him right away or as soon as practically possible. As disruptive as it may be to you, it'll be more efficient for
you in the long run. If you're unable to assist him right away, try to set a specific time when you will realistically be
available to help him.
For example, you might say, "I'll do that for you in fifteen minutes at four o'clock."
Be sure to keep your promise! Do not leave your time frame open-ended by using phrases such as "as soon as I'm finished
what I'm doing." This will frustrate both of you as he will inevitably re-approach you many times before you're ready
to help him.
Asking him to wait is asking him to do something that he may be neurologically incapable of doing. Always
make the effort to anticipate what he'll need and eliminate the wait!
Mistaking The Movement Disorder For Misbehaviour
It
is not uncommon for some caregivers to misinterpret some disordered movements as "misbehaviour", or "inappropriate" or even
"aggressive" behaviour.
Consider these examples: You help Henry walk down the hallway holding onto a gait belt. Suddenly he slumps to the floor.
You gently nudge him and ask him to get back up on his feet. As you attempt to assist him, you realize he's become "dead weight".
Now back on his feet, together you take several more strides down the hallway... again he slumps to the ground, testing the
patience of even the most understanding caregiver. You suspect
he's doing this intentionally, perhaps "for attention".
As you watch and help Michelle to eat her lunch, you guide her hand to scoop a spoonful of potatoes off her plate. As
she lifts the spoon toward her mouth, she drops it. The potatoes land on her bib, her lap, her tray, and on the floor. You
clean them up a bit before you prompt her to scoop another spoonful. Halfway to her mouth, she drops the spoon... again! More
on her bib, tray, lap, and floor. None in her mouth. Frustrated by the ever-increasing mess, the "wasted" food, and
the suspicion that "she's not really trying," you may presume she's doing it "on purpose" and wonder, "How many
more times is she going to drop that spoon?"
However, both Henry's slumping to the floor and Michelle's dropping
her spoon are just as likely to be attributed to a phenomenon of the movement disorder called "motor impersistence", an inability
to maintain a position. Henry may have been unable to maintain his upright position and Michelle unable to maintain her grasp
on the spoon.
This condition is an aspect of the movement disorder that is less well known. It is driven by the progressive changes
in the brain and not by their personalities, mood, or character.
Similarly, you may be helping Shaun take a shower.
Since he's got plenty to do just balancing himself and holding onto the rail for support in the cramped quarters of the shower
stall, you gently nudge his elbow upward saying, "Let me lather you up under your arm here!" The next thing you feel
is his elbow glancing up off the side of your head. You immediately show your disapproval, call for assistance, and end the
shower, assuming Shaun tried to hit you with his elbow!
Another little understood part of the movement disorder is
an inability to modulate or regulate the force of one's movement. So if Shaun intended to
gently lift up his arm
to let you wash under it, but was unable to regulate the force to lift it, his good faith attempt to help you help him looked
more like he was trying to hurt you!
When you understand these aspects of he movement disorder, you can arrange your position so that you won't be surprised
or harmed by these big bursts of movement. Very often they are nothing more than an attempt to cooperate with the caregiver!
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