This one is for the caregivers

Today was day 1 of a great conference, the 15th annual PSA Regional Stroke Conference. First of all, the conference took place at The Magnolia of Millbrae which I thought was an awesome venue for this crowd. A stroke conference in a retirement home, very cool! (I feel bad I did not have time to get a better look at the premises - I might have to go back soon to check the place out in detail.. I just loved their attitude!) 

Secondly and more importantly, I was lucky to hear three great speakers, Dr. Jeremy Bornstein, Dr. Sheila Chan and Dr. Stephanie Linn. Amazing presentations, all of them! The one that stuck to me most today was “Patterns of Psychological Adjustment of Stroke Patients and Families” by Dr. Jeremy Bornstein. He did a great job reminding us all of the huge and overwhelming impact stroke has not only on the patient, but also to those around him or her.  

When working in outpatient rehab, we get to see our patients after they return home from the hospital. This time is usually filled with hope and high expectations, but the new days, weeks and months in familiar surroundings can also be full of new and surprising obstacles. Figuring out how to overcome these obstacles and rebuilding ways of doing things (like communicating needs, wants and feelings or socializing) can be scary and hard.

Also, rebuilding a way of functioning as a spouse, daughter, son or parent is a complicated process. Dr. Bornstein reminded us today that there are many, many paths people take to rebuild their relationships after a stroke and sometimes that path can be a winding one.

I have been lucky to meet many amazing people who work tirelessly to provide the best possible care for their loved ones - sometimes at the cost of their own well being. We all know that recovering from a stroke involves the risk of depression. The one thing I was reminded today was that in regard to this it is not only the patient we need to be looking at - we need to turn our attention to the caregivers too. Also they have had dramatic changes in their lives and have great demands in their new role.

As professionals working with stroke patients our holistic view of the recovery process needs to include the people close to the patient. One thing we should include in our routine when working with caregivers is encouraging them to take care of themselves as well as their loved ones. In speech therapy this can be done by simply acknowledging the great job the caregivers are doing. Positive reinforcement works! I also like to talk about what the caregiver has done that they themselves enjoy. Sometimes a gentle reminder that it is ok to take care of yourself too works amazingly well.

When the caregiver is well rested, happy and balanced, they are able to maintain better care for the patient too. Also, caregivers need time and space to adjust to the new circumstances to be able to rebuild a balanced relationship with their loved ones. Kind of simple, right? 

So everybody, lets give it up for all the caregivers out there doing a great job! You guys are true heroes of our time. 

P.S. Today was day 1 of the 15th annual Stroke Conference. Day 2 is coming up on May 15 and to my understanding you can still register for that one. Hope to see you there!

Homework

So, you work with adult patients who have aphasia. Do you ever give your patients homework? You know, those sheets of paper full of writing, matching or naming exercises? You ask them to bring it back completed for the next session, and then together you go through the tasks and give praise on how well they did. I used to do that, too! 

Having done that for a number of years (!) I started to get tired of it. Why? Not because of me, but because I felt it was not getting us anywhere. Sure, the patients felt the joy of achievement while completing the tasks at home. Sure, I got some info on what they were doing at home or whether were they doing anything at all. Sure, it gave us continuity between sessions. 

However, what I did not feel good about was feeling like a teacher. When the patients lost interest in homework, forgot about homework or I could not convince the caretaker to get involved or in general the circumstances were just against us, I hated it when I saw how my patients felt. Some felt like they had to make excuses on why their work was not completed or they felt embarrassed because they had forgotten. And even when they did complete their homework on time and perfectly, I did not like the student/teacher relationship this got us in (I’m not even going to mention the number of times the homework was completed by the spouse. Aargh!) Again, I wanted more. 

So, I took a different approach. Typically, I never give anyone anything to take home. Instead I ask them to bring stuff from home to me. 

 I ask my patients to do things like: 

·       When reading the newspaper on the morning of speech, circle an article/headline/picture you find interesting and bring that newspaper with you! 

·       Mark the shows you watched on TV during the week on your TV guide and bring that! 

·       Take pictures of your garden and write down the names of the plants! 

And then we actually USE that material in therapy. I always alter the tasks to be relevant to the patients’ everyday life. When suitable, I include loved-ones in these tasks, and give specific instructions on what the patient is supposed to do and how the loved-one is supposed to work with him/her.  

With this change I really feel like we are getting somewhere! Patients and caregivers are more alert on how to use their environment for speech-related tasks (and communication, bonus!), they have a say in what topics we cover in speech therapy and in general I feel that our sessions are actually based on the everyday life of my patients. Instead of going to school and completing tasks, patients come to speech therapy to tell me about their everyday lives and the obstacles they face - often resulting in good conversations on how to make that environment more supportive and accessible! 

 This approach has proven to be more fruitful in the long run, too. The reality of Speech Therapy services is that they are not endless. Embedding the homework in real life tends to stick more than completing sheets of paper or using random tasks as homework. Quite often patients and loved-ones find new ways of doing or talking about things together and that is what we all like to see. 

What have you been up to?

Many discussions start with the question "What have you been up to?" Quite often we get the "Nothing much" or "You know, the usual" as the first reply. But then, the magic happens. The question triggers stories about meeting old friends at the grocery store, finally fixing the broken lawnmower, relatives who visited on Sunday or a good movie on TV the other night.

However, in speech therapy, even with our high functioning, fluent patients the “nothing much” is often the end of the story. The question does not trigger the spontaneous ideas behind the stories that could be. The overlearned phrases are enough to get us through the exchange and that is where the exchange ends. 

However, sometimes this can be a great achievement for a person who has difficulties with speech! Being able to react, respond and engage. The overlearned, automatic responses are there to establish a connection between individuals, and as such, they are great. I encourage my patients to use these automatic phrases as much as the next guy! 

But being an SLP, I want more. I want these phrases to be a starting point, not the whole deal. I want the phrases to buy time for making that connection between the time since I last saw the person I’m talking to and what I could tell them. This is why I generally begin our session like this: 

 Me:      Hi, how are you? (Pause)

P:         Good. 

Me:      Good to hear. What have you been up to? (Pause) 

P:         Nothing much.

Me:      Really? Now, I don’t believe you. It’s been a week since I last saw you. What have you been doing? (Pause) 

P:         The same.

Me:      Ok, tell me about your “the same.” What does that include? (Pause) 

If you want, I can help you think about things you might have done during the week. Would that be good?

I offer ideas that might relate to that person (for example, have you talked to your neighbor?). Write down different options—everyday things and unusual activities (remember to include crazy ones like “went bungee-jumping” to prompt reactions) and so forth. 

I tell my patients that we will be doing this every time we meet, so “come prepared”. And usually about the third time I meet with them, they get the idea and the discussions go something like this: 

T:         Hi, how are you? (Pause)

P:         Good. 

T:         Good to hear. What have you been up to? (Pause) 

P:         Nothing much. (Long pause) But in physio, it was not the same girl.

T:         Really? You have a new physiotherapist?  

P:         Yes.

T:         Tell me about her. (Pause) 

 And Voilà - we have a story. Something the patient came up with by themselves, something important to them. And they know I’m there to hear that story, I have time to wait for it to unfold. A step closer to a real conversation which I always see as “The Ultimate Goal in Speech Therapy.” 

Flexibility

The possibilities of a computer in speech therapy have been explored since the very early computers became available. Tablet computers are a new, fascinating platform that has created a great opportunity to explore the possibilities of technology within rehabilitation. We are very lucky to have witnessed a huge outbreak of different kinds of apps for different platforms since Apple launched the iPad in 2010. It is amazing how much creativity, talent and knowledge has been poured into apps that are targeted for speech therapy in a few short years.

 As with everything new, time and experience tend to give a clearer perspective on what the pros and cons actually are. Exploring with different types of apps tends to result in a crystallized view on the benefits you actually get from using new technology in your day to day practice.

 But one thing technology is not good at is flexibility. And boy Oh Boy do we need to bend and twist and turn with our patients. In my experience the most desirable quality of an SLP is the gift of being able to adjust to current circumstances by holding on to your goals, but finding new ways to get there when your first plan fails. As with almost anything, the simple, well designed things tend to pass the test and prevail to help you work better.

We created Sanapsis to be as flexible as you are. Sanapsis is designed to give you an open platform for working with your patient. Yes, Sanapsis has specific tasks to complete, and yes, it will provide you the stimuli. But Sanapsis does not determinate the goal of the task or force you to do one thing with an exercise. It gives you ideas. It allows you to be flexible and work with your patient. With Sanapsis it is always you two working with the provided stimuli, not the patient working with the device while you observe. 

 But what about collecting data? Or documenting progress? We have not found a way that would be simple to use in clinical settings and yet be flexible enough to gather relevant information about the process. We feel that the observations and analysis of the situation need to be completed and documented through professional eyes. A score of correct answers, automatic data collection on how fast a patient performs can turn speech therapy into an arcade game, and we do not want that, do we? 

 We need flexibility to adjust our methods and help the patient understand their symptoms--a way to help our patients cope with their everyday challenges. Sanapsis will be there to help you plan and deliver highly productive therapy sessions, and you need to be there to deliver and document the functional progress.