Tag Archives: aphasia

Colliding with Reality

8 Jul

Today I cleaned my computer, in preparation of getting a replacement, of old files and applications I no longer need. In the course of this action I opened numerous documents to read what was inside; one was entitled “Our Goals,” and I wrote it in the spring of 2008 just before I took Chuck to the University of Michigan Aphasia Program (UMAP) in Ann Arbor. We were to spend seven weeks there while he received intensive speech therapy. Being extremely naïve, hopeful, and deep in denial, here is what I wrote:

June 15 – 24: Get ready to go to Michigan
June 25 – August 15: Learn to speak!
August 18: Return from Michigan.
August 19 – 31: Rest. Make calls and plans for the fall.
September 1 – December: Prepare to start teaching in the spring; start an exercise program.
January 2009: Start teaching again!

When I read this again today, for the first time in years, I cringed with embarrassment even though I have no reason to feel that way. Except for the fact that I now know just how naïve and hopeful I was, and how deep in denial. In fact, after a grueling routine of daily therapies lasting four to five hours, Chuck did not learn to speak. We both returned home exhausted; I, realizing that Chuck most likely would not ever talk again, was filled with despair. At times I wished for death, his or mine.

When I look back, I can’t believe or understand how I survived the brutal realities that I had to face in the years following Chuck’s stroke. I would not say I’m over it—I don’t think one ever gets over this sort of trauma—but I have gotten used to the situation. I am amazed at what a person can learn to live with. I wonder the toll all those years of stress have taken on me, however.

I don’t know how long, either, I can continue to live this way. I soon will have to pursue gainful, full-time employment; at that point, I’m not sure I will be able to also act as a full-time caretaker. I have to trust that when the path is in front of me I will see it and know what to do and when to do it.

Next time, I will post a document given to me by a speech therapist at UMAP entitled “Tips for Improving Supportive Communication.” Stay tuned for that and more. Stay strong.

Advertisements

How to Communicate With Someone Who Can’t Talk

4 Dec

I was fossicking around in my stroke-related files, looking for blog ideas, and I came across a document I put together several years ago after Chuck and I returned from an six-week, intensive speech therapy program. The subject is supportive communication and how to engage in it with someone who has aphasia, a condition that can result from a stroke or other head injury and results in a loss of language or the ability to speak normally.

These notes represent my attempt to find Chuck some way to communicate with others and they with him. His aphasia is so severe that he was unable to learn to speak again, and ultimately, he preferred to communicate in his own way and seems to be satisfied with it. I’m going to present the material as if I were instructing someone how to communicate with Chuck; but if you know someone who has aphasia, simply substitute that person’s name in place of Chuck’s.

How to Engage in Supportive Communication

1. Choose a time when Chuck is fresh and a place with few or no distractions. People who suffer from the affects of a stroke or head injury tire easily and are easily distracted by extraneous noise or activity.

2. Make sure Chuck has his dry-erase board and marker, picture dictionary, and photo albums.

The dry-erase board and marker were absolutely brilliant assistive tools and were suggested not by a speech therapist but by my niece Anna, who is a counselor who specializes in working with children. Chuck, being a skilled artist, is able to sketch representative, descriptive, often comical drawings to indicate ideas and needs.

Chuck was provided a picture dictionary while at the speech therapy “camp,” but found it troublesome to use. I think that for him, too much was going on. The pictures illustrated, for instance, a market full of people, food, items, and so forth on the page. To identify a single item—let’s say an apple to indicate he wanted one for a snack—took too much effort. Possibly, his defective vision was the problem; he has a right field cut, meaning he lacks vision on the inside of his left eye and the outside of his right eye, a result of the stroke.

Photo albums, either existing ones or new ones designed just for him, were a great success because he liked looking at them. Also, these were good for practicing names. Unfortunately, Chuck is not able to recall to whom I’m referring when I say the person’s name, even though he does recognize people. Some aphasia sufferers are able to improve, even learn to talk normally again; using photos and pictures, and even flashcards naming objects, are very helpful in helping them remember and relearn.

3. Start off asking him if he has a topic he would like to discuss, using one or all of the tools above.

4. When he points to or draws something, ask him to say it. Give him time to formulate the word, and ask if he would like you to write the word. If he continues to struggle after about 20 seconds, or if he asks for help, prompt him. If he cannot get it by himself, say the word and have him repeat it. Be patient. Give Chuck time to process, prepare, and articulate. This process will be fluid, so continue using the technique described as the conversation moves from topic to topic.

5. After Chuck has a turn, spend the same amount of time telling him about yourself or something of interest to you or how your day is going. Speak slowly, repeat frequently, and use the dry-erase board to write key words and illustrate concepts in order to increase his comprehension. Newspapers and magazines are a good source of topics. Be patient. Give him time to understand your message. Repeat the message as needed.

6. After about a half-hour, progress to an exercise or game.

Additional Information

If you are talking to Chuck and me, or if there is a group of people involved, be sure to look directly at Chuck during the course of the conversation. Unfortunately, I have noticed that since Chuck is unable to contribute to a conversation, others tend to ignore him. I’m not sure if they are uncomfortable or if they think he can’t comprehend what they’re saying. Possibly, he cannot; however, ignoring him is, frankly, rude. It also can aggravate the isolation and loneliness frequently experienced by people who have aphasia.

Chuck has expressive aphasia, the inability to access speech; and receptive aphasia, or difficulty understanding speech. He also has apraxia, or difficulty manipulating the musculature of the mouth. His intelligence is intact, so please remember and respect this when you communicate with him.

I’ve been told that a hallmark of aphasia can include a disinterest in the lives of others (as well as other personality changes). I’m not sure if this is organic/structural or the result of being the center of attention during a long period of rehab. Chuck definitely has become detached since his stroke, his emotional repertoire drastically reduced. Possibly, the antidepressant he’s taking contributes to, but I don’t believe is completely responsible for, the change. At least, unlike some stroke and head injury survivors, his basic mode is pleasant. I understand that some become mean or extremely depressed. Chuck usually is cheerful and easy to be around.

Your Best Resource: Yourself

21 Nov

Your loved one has just suffered a stroke. What should you do? I’ve compiled a list of things I did after the initial crisis passed. I hope it will help anyone else who’s trying to cope with the stroke of a loved one. Keep in mind that this list constitutes my opinions based on my experience as a caretaker. These are things I did or wish I had done.

1. Get the best medical care available. Make sure a neurologist is on staff. Some hospitals don’t have one, believe it or not. If yours does not, transfer your loved one to a hospital that does.

2. Apply for Social Security Disability Income, even if you think your loved one won’t need it. Benefits don’t start until five months after APPLICATION, not the date of disability, with no retro activity.

3. Demand that therapy start as soon as possible. Anticipate therapy after hospitalization and start making calls now; every facility will have a waiting list, and you want to get your loved one on it as soon as possible. Also, do not be afraid to dismiss a therapist you or your loved one doesn’t like, for whatever reason.

4. Research treatment options; don’t depend on the experts to know everything. Find out if any clinical trials are running, or where the best therapy is for specific conditions, such as aphasia.

5. Create an email list of family, friends and colleagues so that you can communicate about your loved one’s condition and ask for help when you need it.

6. Ask for help! People want to help but often don’t know what you want. Tell them, whether it’s food, a ride to the hospital, someone else to visit your loved one so you can take a break, or just a kind word. Caretaking is a grind, and you may be doing it for a long time, so pace yourself.

7. Wallow in self-pity if you must (I did), but try to take care of yourself. Did I mention caretaking is a grind? All the more reason to take care of yourself. Exercise, eat well, don’t overdo alcohol. If you feel depressed, ask your family physician to prescribe meds.

8. Read everything you can get your hands on about stroke: books, magazines, articles, both in print and on line. Look for a future post with a list of books I found helpful.

9. Start a journal in which you can record events, as well as your feelings. In the chaotic aftermath of a stroke, you may forget things, so it helps to write them down. Also, sometimes you might not realize how you’re feeling until you write it down.

10. Anticipate what your loved one will need upon coming home. Ask the therapists what these might be: a handicap ramp; removal of rugs that might cause tripping; shower seat; etc.

%d bloggers like this: