Updated: Mar 31
This is my first entry of my blog, intended to use what has happened to my mother, combined with my experiences as a Speech Language Pathologist to help others who are recovering from illnesses/ injuries and the caregivers that are helping them.
I wanted to write this to help not just my mom, Esta, who suffered a stroke at the beginning of August of last year, but for anyone anywhere who has had a change in their ability to communicate.
I wanted to share my experience as a Speech Language Pathologist and now suddenly as a daughter of a person with Aphasia. I could never have imagined that my own mother would experience a stroke. I can recall countless phone calls and visits with my mom over the years. I would call or come by to talk about the day and I would recount therapy sessions from that day. Often I told my Mom stories about things patient’s had said or done (no names of course) and I remember her listening with compassion as I told her about how hard it was to see my patients unable to say the names of their children, ask for a drink or a particular snack that they loved, or even understand simple directions. She was always interested, asked questions about how they were doing each time we talked. Remembering it now, I am overcome with emotions and flashes of memories of all the patients faces that I have treated over the course of 20 years who had aphasia and/or apraxia. And I miss hearing her witty thoughts and fluent, insightful comments.
From the beginning of my career and throughout my education my mother was my biggest supporter. She pushed me so hard to get an education. She always said that I needed to be able to have something that I loved to do, that supported me, so that I never had to depend on anyone else. When I was in college there were many things that she was afraid would distract me from my education, boys, other jobs, a runaway dog and countless mistakes I made along the way, but my mother consistently prodded, encouraged, scolded me- whatever it took- back into line so that I would focus and graduate with my degree as a Speech Pathologist.
My mother has always been able to do anything that she put her mind to. It’s a miracle honestly because it is something she innately had within as a little girl. She didn’t ever let anything keep her from being independent. So, having a stroke has been catastrophic in terms of her ability to be able to do all of the things that she loves to do. Cooking basic things is hard and my mother has never been a basic cook. She made gourmet treats and threw parties that rivaled Martha Stewart. Seriously!
Her social life has always been more active than most people I know. She always had plans. She is a member of PEO, held many different roles/positions at church, played dominoes and cards frequently. She was not someone you would have found sitting down and resting but raking, gardening, or cleaning windows. She called and checked on widows of the church, mailed cards on a regular basis and anytime anyone had a special event, cooked meals and delicious pies for families in the community who had lost a family member or who had surgery.
I saw all of this to say, losing the ability to communicate has been extremely difficult for her. And I really don’t even have the words to fully describe the level of effort that has gone into her recovery process. It has been exhausting to watch. I feel inadequate in describing the level of despair and destruction of her abilities.
I cannot imagine how hard it has to be to not be able to say what needs to be said, describe what sounds good to eat, or ask for help with an idea. ALL of these things are hard for her. AND She has made so much progress. She started out with severe deficits in receptive (understanding) and expressive (verbalizing) language. She was unable to follow simple directives. She was not reliable with yes and no questions. She could not say her name, or much of anything really, with any level of consistency. Because she was also diagnosed with apraxia, her communication was even more affected. She did have at times spontaneous, automatic speech but it was not often.
There are so many decisions that my family and I have had to make since that awful day when I got the phone call from my sister that she thought mom was having a stroke, while in the Neuro ICU….Yes, while in NEURO ICU. The place where they’re supposed to be monitoring and keeping your family members safe, right? I want to say many things here but that is for another time.
This is about the basics of communication for People with Aphasia. More on all of that later...
Because I am a Speech pathologist and I see patients and families every week who have to make decisions, sometimes life changing decisions, without any medical background. Also, with all of the changes happening in health care and particularly with home health visits becoming less and less - I wanted to start this blog. I wanted this to be a place where this awful, horrible nightmare that happened to my Mom could be transmuted into something positive.
Initially I attempted to join Facebook groups for caregivers, but I just could not do it. The amount of negativity and drain on my energy was too much. And I get it, being a caregiver is HARD. Having a life changing event happen to your family member IS negative and draining. But I have to believe that there is a way to learn and share and create a community that is solution based and that is my intention with this. To create a blog of information and resources for caregivers of geriatrics, foster a sense of community, in the spirit of growth and solutions.
I’ve spent most of my working hours over the last 20 years with elderly people. And I have a passion for it. I can’t NOT do it. There’s something about seeing people who were pillars of my community as a teenager grow old and become frail, lose their ability to communicate and become forgetful and ultimately residents at the nursing home where I worked that has molded me and shaped me. I know that I have learned more from my patients than I have taught. And I’m not putting my skills in a negative light. I know I have helped a lot of people. I know that the strategies, skills, exercises that I trained my patients with over the years have made an impact. But I’m positive that the endless stories of how my past patient’s built businesses, met their soulmate, taught their children, and all of the secrets that I’ve had the honor of hearing over the years have shaped me and made me into the person I am.
This is my first attempt to use what has happened to my mother, combined with my experiences as an SLP to help others. My intention is to provide basic information about aphasia and dysphagia in this blog and to create a community for patients, loved ones and caregivers. I hope these basic tips are helpful when communicating with someone with aphasia.
1) Make sure you have their attention. Face them directly. Speak slowly.
2) Decreased background noise is very important. So that means restaurants, sporting events, even talking after church is very hard. The quieter the environment the better.
3) Video calls. Having a visual of the speakers’ mouth is extremely helpful. Phone calls are okay but we have had a lot more satisfying conversations with video/Facetime.
4) Mornings are better. By the evening, fatigue becomes a factor and the words are harder to form.
5) Simple sentence structure is best, for example, “I like your shirt” instead of “Where did you get that shirt”. The intention is really the same- and retrieving the name of a store – is a very difficult communication skill.
6) You don’t have to yell (unless hearing is also a deficit).
7) Talking about things that are concrete. Something happening right now, something in front of you at the moment, not something that happened last week, or someone who is not present.
8) The words that come out are sometimes not quite right. But sometimes they are very close. Sometimes the first letter is wrong, sometimes the last letter is off. It is a bit of a puzzle but with practice you can learn to figure this out.
9) Remind yourself and the person with aphasia to breathe deeply especially when they are having trouble with a word. These are difficult tasks and oxygen to the brain is necessary for it to work.
10) If you cannot figure out what they are trying to say, ask about details. “Where is it found?, What color is it?, Who were you with when this happened?, or what do you do with it?” This comes with a caveat- it is more helpful to give them a chance to try for a few seconds maybe even a minute before you start in with questions. And then SLOWLY ask ONE question at a time with a LONG pause. Remember that it takes people with aphasia extra time to process what is being said as well. Spouting off a variety of options is more confusing than helpful even with good intentions.
11) Every single stroke is different. Even if it is in a similar place in the brain it is still going to have different presentations. So, you have to invest the time to learn strengths and weaknesses and brainstorm strategies for each individual with their therapist.
12) A written script can be helpful for saying basic information such as “My name is ________, I had a stroke.” Prior to making a phone call to say “happy birthday” for example, writing the phrase on a card and practicing the phrase a few times before picking up the phone can make a big difference. Another way to use this is for ordering food at a restaurant by practicing before the waiter shows up.
13) It is also helpful to have them watch your mouth while you say the word. The visual cue helps them form the words correctly.
14) Some words may not come out exactly right and that’s okay. I praise them when they’re correct and even when they’re close. I downplay any errors and try to build them up.
15) A way to include a person with aphasia in a group setting is to ask “yes” or “no” questions.
16) Use facial expressions, body language and gestures to aide in both communicating your message and in assessing to see if they understand you.
17) Aphasia has nothing to do with intelligence. People with aphasia have language deficits not cognitive deficits. I explain it as though there is a roadblock in the brain and the usual route to access the word does not work due to the stroke (road block in this analogy). The more times that the brain is able to retrieve words and build new pathways (roads) the output of language improves.
18) Often, my mother will attempt to give up and say “Oh nevermind” but if she slows down, takes a breath and pauses for a minute, often the phrase comes out clearly or very close to correct. Don’t give up, encourage a person with aphasia to keep trying.
19) Remember that the goal is effective communication. Not perfect speech. So if the message is able to be conveyed with gestures, written words, or pointing to a requested object then that is effective communication.
20) Lastly, if the thought or word just will not come, take a break and come back to it later on. Often a break is all that is needed.
I hope that this list has been helpful. Lastly, I know that we have been very blessed with great therapists and have relied on word of mouth referrals in order to make those decisions. The quality of therapist can make or break the recovery process.
For additional information and resources you can check out:
Aphasia House- intensive rehab for people with aphasia at UCF.
www.tactustherapy.com- apps for therapy
http://csuspeechandhearingclinic.weebly.com/uploads/2/3/4/0/23404518/exit_project_workbook_complete_draft_2.pdf - a full free workbook for patients with Aphasia.