“He had survived
the stroke, and the worst of the physical problems were solved in the hospital. But, as I stood outside the hospital, I had
no idea where to turn or even who to ask about the problem the neurologist called “aphasia””. These are the words of Penny Montgomery-West from her article “A Spouse’s Perspective on Life
with Aphasia” (qtd. in NAA, 2005). Although Penny may have felt very much
alone at that time, she was not. Of the estimated 400,000 strokes that occur each year, 80,000 result in aphasia (NAA, 2005). That means the family and friends of 80,000 people are also left to deal with the
effects of aphasia and the challenges it presents. You do the math. Chances are, you are one of those people – or will
someday be. But, hopefully, you will soon realize, as Penny did, that much of
her desperation was the result of her lack of knowledge about aphasia. As a caregiver of someone with aphasia, it is important
that you understand the communication impairments exhibited, are knowledgeable of coping strategies, and know that there are
support networks available for you and your loved one.
First, what is aphasia? Aphasia is an acquired communication impairment that may result from a stroke, head
trauma or other neurological condition. There are two main types of aphasia –
receptive and expressive. Receptive – often referred to as Wernicke’s aphasia,
“affects the ability to understand the speech, gesture, and writing of others” (NAA, 2005). Although the individual’s
speech may be fluent, it is empty and full of jargon.
Expressive – or Broca’s – is the inability to express thoughts verbally,
and is by far the most common aphasia (Hachinski & Hachinski, 2002, p.62). It
is probably the most frustrating for the aphasic individual, as he or she is able to understand what is being said and knows
how he or she wants to respond, but is unable to find or speak the words.
The impact on communication and
relationships will vary from profound to slight. However, in all cases it is important for the individual to communicate as
effectively as possible from the initial stages of the recovery process. Your loved one’s SLP can provide information
and helpful tips for communicating. The following are some suggestions provided by the National Aphasia Association to aid
in communicating with an aphasic individual:
● Make sure you have the person’s attention
During conversation, minimize or eliminate background noise (such as TV, radio, other people) as much as possible.
Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don’t
need to speak louder than normal but do emphasize key words. Don’t talk down to the person with aphasia.
Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial
expressions) in addition to speech.
Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person except when
necessary and ask permission before doing so.
Praise all attempts to speak: make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid
insisting that each word be produced perfectly.
Augment speech with gesture and visual aids whenever possible. Repeat a statement
Encourage them to be as independent as possible. Avoid being overprotective.
Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with aphasia
from family or friends or ignore them in a group conversation. Rather, try to
involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with day
to day details. (NAA, 20005).
As the family member and/or caregiver,
it is important that you also understand the emotional side of aphasia as it affects the individual. As A.H. Raskin wrote
in his article, “The Words I Lost”, it is a “battle against the twin demons of frustration and depression”
(qtd. in NAA, 2005). Like Raskin, most will deal with fluctuating emotions of anxiety and depression, melancholy and hope,
as well as isolation and emotional solitude. There is definitely a grieving process that happens. In his book, The
Family Guide to Surviving Stoke and Communication Disorders, Dennis C. Tanner provides some suggestions for helping
your loved one reach acceptance about what has happened. The following are a
few of his guidelines:
Allow control – much of the psychological pain experienced comes from the
loss of control over some aspects of his/her life. Look for ways to provide the individual control – such as
when and what to eat, or when to go or not to go somewhere.
Provide prospective – There may be times the individual feels that there will be no end to the emotional pain and frustration
he or she may be feeling. Patients gain perspective when they discover more about
the situation or events causing the suffering. Try to express to the patient that the grief and suffering will end.
Acknowledge the losses – discussion of the losses allows the patient the opportunity to express his or her grief. Although
the patient may be unable to verbally express his or her emotions, you should encourage any type of constructive emotional
Listen quietly – when confronted with a grieving loved one’s strong emotions, resist the need to explain, defend,
or rationalize. Venting feelings and expressing thoughts are often therapeutic in themselves. Sometimes they just need a listening
Do not punish anger – anger is a natural and predictable consequence of loss.
Anger that is nondestructive should be tolerated, understood, and, in some cases, encouraged.
Provide companionship during depression – depression is a natural reaction for the patient when he or she becomes aware
of the loss(es). Avoid superficial comments that may devalue the patient’s feelings. Sometimes just sitting quietly
with the patient can help ease their depression by showing your concern for them. (Tanner, 189-193).
We have not forgotten that you,
the family member or caregiver, are dealing with a plethora of emotions, as well. If
you are the spouse, these feelings are most likely magnified. Roles may now be
reversed. The homemaker may now be the provider – the provider now the
caregiver. Not only are there communication impairments to deal with, but most
likely there are now physical limitations as well. All of these can add up to
an overwhelming sense of responsibility, anxiety and fear. You may feel that
it is more than you can handle. You may be angry – not just at the situation,
but at the person for having the stroke. It is important to know that it is normal
to feel that way.
There is a grieving process anytime
we have lost someone. Although your loved one has survived the stroke (or other
neurological condition that has caused the aphasia), the “old self” may be gone. In “Hope: The Stroke Recovery
Guide”, offered by the National Stroke Association, it is aptly stated that “a funeral formally recognizes a death
and encourages support for a bereaved family. But there is no socially acceptable way to grieve for a person who hasn’t
died” (22). It goes on to say “only after mourning the loss of the
person they knew are families able to learn who that person has become and begin to develop a comfortable relationship”
(22). The person who may have looked you in the eye each morning and told you how much he or she loved you may now be unable
to utter one intelligible phrase. There is a loss. It may be slight, it may be profound. But it will still be
a process to get through it. Patience will be your best ally.
It is also important to know
that you are not the only one who has ever gone through this. Joining a support
group can be immensely beneficial to you and your loved one. There, you can receive
encouragement and ideas from those who have been through similar situations. This will help to provide you with hope for both
the present and future, as well as reassure both of you that you can – and will – make it through this.
Most importantly, you, the caregiver,
must take care of yourself. If you are drained – emotionally and physically
– you will be less equipped to face the challenges before you. When you
are feeling frustrated, “distinguish between what you can and can’t change. Trying to change an uncontrollable
circumstance always produces frustration” (American Stoke Association, 2005). Take time for yourself. Go out with friends. Don’t feel bad about asking for help from other friends and family. Also, depending
on your loved ones impairments, it may be alright to leave him or her for a few hours.
Check with your doctor regarding what is safe. You should not feel guilty
about needing time for yourself. This will only serve to improve your role as
Remember that recovery is a process
– an often long one. Being an informed and educated caregiver will not
only help you to promote more effective communication, but, may also help you to provide care in a more positive and patient
manner. You need to have realistic expectations – not only for the one with the communication disorder, but for yourself. You are not super-human. Join a local
aphasia support group. Employ the help of friends and family. Take time out for yourself. There are many adjustments to make
– and emotions to sort through. But, with a strong support base, you and your loved one can live happy and productive