STROKE DIALOGUES Conversations with Dad,
The following post is a bit different than our usual posts. That said, I thought it important, particularly for those dealing with aphasia to see how the survivor, a very intelligent gentleman, and some of those around him dealt with his deficits.
I recently had an interview with Jeri Goldstein who cared for her dad after he had an ischemic stroke in 2012, resulting in Aphasia. She’s recently published a book about the experience she, her family and friends had as her dad worked hard to get back most of his speech and life. We talk about the book, STROKE DIALOGUES Conversations with Dad, aphasia, patient advocacy, caregiving, therapy, rehab, and the importance of patience. Enjoy our interview. I learned some new things and I think you will as well.
Bob: If you are aphasic, there’s no guarantee that you’re going to get your speech back. I was very fortunate, I have to say. That I got it back the way I did.
Jeri: And you had a lot of help with that.
Bob: I had a lot of help.
Jeri: As did dad, but he didn’t have that long of a period of therapy. He went through the summer after his stroke. He had an aide. And then he had me and some friends and other family members.
Bob: How old was he when he had his stroke?
Jeri: He was 84 going on 85
Bob: Why did you stay in Florida?
Jeri: He had his stroke in Nov. 2012, I stayed until June, then I went back to VA for a few months, then returned November of 2013. That’s when other health issues started to occur beyond the stroke. This complicated the recovery process form the stroke because he was doing great. We had a full-time aide, but it became really apparent that he was not going to fully come back to care for his personal needs or take care of his finances. As time went on, I decided that I was going to stay until he was fully recovered, if ever. I was in the process of selling my rental house in VA and then selling my primary house. I realized it was best to be down in FL with him. We had family and long-time friends in FL, so he and I had a support system. It made more sense to be with him and take care of the everyday, rather than try to answer tons of phone calls each day from afar.
Bob: How did he express himself when he wasn’t able to speak?
Jeri: He didn’t lose total speech. He expressed himself more easily with numbers. He used numbers instead of names. He gave everyone a number. It was much easier for him because he was a numbers guy. He had a spreadsheet for every account, every medical situation for he and mom, and for every one of life’s situations. At the beginning, he couldn’t identify body parts, or everyday items, like a brush, or hair, or shoe. And certainly, he could not remember people’s names. He had no facility to tell time—that was gone. But he was able to say he liked something, like a food item.
The basis of these conversations that I’ve captured in the book, is directly taken from the way he would start a conversation to find something out that he knew before the stroke. He just didn’t know how to ask a question that would help us get him the answer quickly. So, he would start by saying something like in one chapter, he starts off with, “One, Two.” And then we had to figure out what that meant. These conversations could last for days until we figured it out. He could say, “yes,” or “no,” but he couldn’t get the thoughts that were locked in his brain across to help us get him his answer quickly.
Bob: Did he get all violent due to the frustration level?
Jeri: Not at all. He released his frustration by crying. And he went to a dark place of not wanting to be here anymore and wanting to die. He didn’t want to be a burden to anyone now that he was no longer the man before the stroke. He kept saying, “I’m not myself.” He felt he’ll never be the same and is not what he used to be. He would bother the nurses and try to express to them that they could give him something, meaning to help him die.
Bob: Nobody is the same after a stroke.
Jeri: But he didn’t know that right then and he didn’t know he could come back, he could get better.
Bob: Could he read?
Jeri: Not then. Eventually he tried but he didn’t have the level of concentration to read for very long. We started using audio books, but then he would fall asleep and not spend much time with that either. We tried music to calm his anxiety, but very soon after he was in rehab, we had to get him on a low dose of an anti-anxiety medication. That story is told in the chapter called, Your Happy Pill, and includes some funny interactions. He was very upset that he could no longer do word jumbles and Sudoku and the various puzzles he loved from the newspaper. These were some of the goals that he had set for himself later.
In about March, we sat down and had a session that I called, Goals for Full Recovery. I had a large newsprint pad and color markers and did some cluster brainstorming with dad. You draw a circle in the middle of the page with the name of the main topic, in this case, Full Recovery. Then you draw spokes coming from the main circle with smaller circles in potentially different colors and name those circles. In dad’s case, he set his own goals for what Full Recovery meant to him. Then we would expand on each of the smaller circles or goals. For example, use of your right hand—well what does that mean? And so, it was very instrumental for him to set his own goals. I just facilitated his goal setting by giving him the time to do that.
Bob: Was he able to achieve some of those goals?
Jeri: A lot. He was able to play bridge again, which was extremely important to his social interactions with his friends, and he had been a very good bridge player. I started this with him right after his stroke while he was in the hospital and then in rehab. I always had a deck of cards with me or left one there in his room. Since he was always using numbers, I began showing him the deck of cards and showing him the numbers. He was able to shortly recognize 2-10, but as soon as a Jack, Queen, King, Ace showed up, he couldn’t name those cards for a long time. He worked with the cards over, and over again, multiple times a day. We continued once he was home until it finally began to trigger some memory that these numbers and cards were part of something, so he began to say, “two of,” “three of,” ten of.” Suddenly, he realized that this is not just a 2 by itself, but it’s a 2 belonging to something, a suit. Then we started working on the suits, multiple times each day, until finally he was able to divide the cards into four piles of matching suits. Then his friends committed to twice a week open-handed bridge games where they would go over the rules, play hands and discuss the bidding process, and the contracts, until he caught on and could play again.
Bob: Going back to therapy, how much speech therapy did he have?
Jeri: In the hospital and in rehab, they schedule three hours a day, 6 days a week during a 24-hour period, one hour each for physical, occupational and speech therapies. During the non-therapy hours, I would bring in all sorts of puzzles, games, and flash cards of letters and numbers to keep him engaged and working towards recovery. Some of those games resulted in some of the conversations that I included in the book. After he returned home from rehab, he went to outpatient speech therapy two or three times a week through the following summer after his stroke. The fabulous speech therapist was able to extend it through the summer of 2013. She gave us all kinds of homework sheets with increasing levels of difficulty and including more real-life scenarios for dad to work through. His aide helped him each day for 5-6 hours a day.
Bob: There is speech software now. Was he prescribed to use any of those speech software programs?
Jeri: No, we bought him an iPad and we found various apps that were brain games, brain training, and he did that for multiple hours every day. We also did large-sized Jigsaw puzzles as well as blocks that formed various pictures to help with dexterity and hand-eye coordination to help regain function of his right hand. But then we did a lot of practicing with his left hand to eat, to write, and to sign his name.
Bob: Was he a lefty?
Jeri: No, he was right-handed, and his right hand was affected by the stroke. It was a left-brain ischemic stroke with his right side being compromised.
Bob: So, he had to function as a lefty? That’s what I had.
Jeri: That’s correct. It was very frustrating and challenging because he needed help with daily personal care, cutting food, opening containers and anything you need two hands to do. Some of his goals were to help do the dishes again, to iron his clothes, he did a lot of household stuff throughout his life, and he wanted to do that again. He wanted to use his computer with a mouse again so we substituted an iPad where he could just point and go.
Bob: I had to teach myself to be a lefty.
Jeri: He did it and picked up on it quickly, but he had to work at it every day. I was really inspired by how determined he was until he started to have other complicating health problems. He was determined to recover because his main driving force was his girlfriend. My mom had passed in 2010 and Estelle’s husband passed in August that same year. She was part of our lives and he had known she and her husband for 40 years. They were bridge partners first, had the same group of friends, and then they got together. That was a big factor. Will she still want to be with him, will she stay? He was clever. Even while in the hospital, he was worried about this and so he concocted situations that would ensure she stayed. He would say, “Jeri will be along, maybe you could stay with her to keep her company.” So, she would stay in our house, even though she lived right down the block. I didn’t need the company. But, his plan worked, because when he come home from rehab, she was still there.
Bob: Did you get along with her pretty well?
Jeri: I did then, and I still do. She’s one of my best friends. And they got along terrifically. She’s very positive, very up-beat. That was a huge piece of our puzzle, to be positive. As much as he would want to dive into the negativity, it was important to be positive.
Bob: How did she respond to his stroke?
Jeri: She was there with him when it happened and made the 911 call at 10:30 at night. That was very important, so he was in the hospital within 7 minutes. Then I was immediately on the phone with the doctor giving permission to administer the tPA clot buster drug.
But, she remained upbeat and positive, reminding him constantly that this is the way you are right now, but you can get better, and you will get better. She was eager to help however she could. She was amazing! And he did get better, and she continued to help him grow and thrive and make progress.
Bob: And she plays bridge?
Jeri: Yes, and she still plays bridge, 92-going on 93 and still walks up and down the stairs to her 2nd floor apartment.
Bob: What were some of the things that you learned about rehabilitation?
Jeri: While dad was in rehab, I started reading books written by stroke survivors and other books written about rehab and surviving after a stroke. I had come across this phrase that suck with me, “Treat them and street them.” That gave me the impetus to create the goals for full recovery. I felt like, he might reach a plateau, but that’s only because he’s not being given the opportunity to go further or the tools to go further. Therapy has taken him this far and now let’s see where he can go without therapy, doing it on our own. That’s when I got the friends together to help with the bridge game, got social events planned and we managed to constantly be in conversations, which kept his speech development moving forward. And the biggest piece was patience. You’re going to take as long as you’re going to take to get to where you need to get to, but if the surrounding people don’t have patience to help you get there, then you’ve got a problem. So the big thing that I made clear to all his friends and anyone that came to visit was, don’t jump ahead and answer the questions he’s searching for, let him think.
Bob: Don’t do his job for him.
Jeri: Yes, let him think, help him to think by asking more questions to get him to get to the answer on his own as much as possible. This was huge because many friends wanted to visit and have a normal conversation like they used to have, but he couldn’t do that now, so he was frustrated at not being able to participate. He knew exactly what they were talking about, but just didn’t have the speech development back yet to participate. And he knew what he wanted to get answered so he would ask them questions in these very funny ways due to the aphasia, such as “Four things, what are they?” Relating to his finances, what are the four things that he has deposited in his account every month? To answer these questions, we would play 21,000 questions to get dad his answer. He loved the games because it was attention, but it also gave him the answers he needed. We would do this multiples times a day and at different times if we couldn’t get to the answer right away. We kept at it, sometimes for days.
When he was relearning letters, we used flash cards at times, and my niece made up sheets with names of items and their pictures so he could learn names if items, like toothbrush, comb, etc. While working on the letter “P,” I had come up with this phrase, a tongue twister really, to help him not only say his “Ps,” but to get across some key life-concepts.
“When you are positive and patient, when you are persistent and practice, full recovery is possible, anything is possible.”
We kept working on that because it had concepts of positivity and optimism. The therapists and nurses love it.
Bob: I have a theory. The bag of tricks theory. What happens is that over a certain period, you do plateau-with that therapist. You’ve emptied their bag of tricks. Now it’s time to move on to another therapist and their bag of tricks.
Jeri: And someone who will see you in a new light and take to the challenge.
Bob: Every therapist has their expertise. Another therapist—and everything is different. So that’s my bag of tricks theory. I believe you never plateau if you use my theory to the enth degree.
Jeri: I noticed that right away with the occupational therapist who was so ready to move on to another patient. But the speech therapist was amazing. She stuck with him for a long time, extending his time by managing the Medicare coding, until the Medicare allotment was complete. He was moving forward, and he was working hard every day.
Bob: He only had one speech therapist, right?
Jeri: Yes, I think he only had one speech therapist. But multiple physical therapists depending on the day of the week.
Bob: So, it was like a team? Speech, Occupational, Physical therapists, that’s a team. But to have a team of speech therapists or physical therapists, I don’t believe in the team approach. You know why?
Jeri: Why?
Bob: Because it wastes time. Because each new team member doesn’t know where you were last time.
Jeri: I know there was only one speech therapist during his outpatient visits, but I wasn’t there to meet each therapist while he was in rehab. I met only one physical therapist when he was getting ready to be discharged because we had to learn how to help him move and do various exercises.
Bob: As they transition to whatever home care they are going to, the caregivers must be educated because you have no experience, you’re not a nurse or doctor or trained caregiver.
Jeri: That’s why we were very fortunate that dad had long term care insurance, so we were able to have a professionally trained home care aide. Dad wanted to have a male because he said he would be embarrassed being showered by a woman who was not his wife. We had one aide for a year and the next aide for two and a half years until dad passed.
Bob: Did you see him every day?
Jeri: Everyday from 8:30 until 4 during the week, and then I would take over at night and then eventually we had to have an aide on both Saturday and Sundays as well.
Bob: You’ve written a book. Talk a little bit about the book and what you were trying to accomplish.
Jeri: From the very start, I recognized how he was trying to express himself, to get the knowledge he needed and the information he needed to get across to us, was incredibly important, and he struggled with it. He wanted us to know how to take care of his personal business, like paying bills, accounting for his income, and certain medications he was aware of that he wasn’t getting in the hospital. He wanted to know about certain things that had occurred prior to his stroke, but had not been resolved, such as the outcome of those things, such as the 2012 elections.
And to get that information, he would ask questions in very funny ways. I noticed that these conversations we were having were extremely drawn out because I discovered you had to ask a single question at a time, not a multiple-part question. He could not separate the items in these types of confusing questions. Well, that made the conversations much, much, longer. They had to be very detailed, you had to get down to granular specifics, and so, they became funny. Some of them became very funny based on what he started out with and then what the result actually was. I started to keep track of these conversations.
While I was home in VA during June through November 2013, I started to write these conversations down to remember them while they were recent and fresh in my mind. I just had to document these because they we so enlightening as to how he arrived at getting his point across and making himself understood. The determination he had in getting his answers by using landmarks or by using words he could express at the time to get to those answers and to discover pieces of his life that were missing now, was remarkable. They weren’t missing, they were locked in his mind, but he just couldn’t express them, and he needed to regain those important parts of his life or career.
And I thought, these were gems. Whether they were funny or serious, I needed to collect them for me. If other people had conversations with him when I wasn’t around, and then they told me about them, then I had to get the details. I started writing the conversations down and then his other health issues distracted me from finishing the writing right away. I needed time away from it after he passed to settle his estate, get back to my business, and sell my house in VA. It wasn’t’ until last spring of 2021, that I returned to it in earnest to write the connecting story.
Bob: How long did it take to write this?
Jeri: I started it in 2013, then left it for a long time and picked it back up in 2021, so it was a nine-year process. For many years I couldn’t touch it. The emotions were too difficult and the memories to hard, so I had to let it sit for a while. I was trying to build back my coaching business, and I started a podcast right before the pandemic shut everything down. Get Great Gigs Podcast, perfect timing, since there were now no gigs to get.
I finished writing in October, and I had my editors work on it in November. I then began the design phase with my graphic artist and book designer. It was basically done in March but because some of the reviewing outlets needed a long lead time, we decided to release it on Father’s Day. We made our deadline, and it was on Amazon on June 18th.
Bob: I’m very much interested in what you did. It’s a great story. I learned something about the caregiving process with somebody with aphasia as opposed to someone with physical challenges.
Jeri: I think that piece of the puzzle was my driving force behind learning advocacy, learning patience, learning positivity, and helping us to understand his needs. I think people with dementia, people with other brain injuries really require a great deal of patience. It took a lot of time to have these conversations, but it was worth it, he was my dad.
Excerpt from the introduction: Stroke Dialogues Conversations with Dad
Perhaps someone else might benefit from our newly learned knowledge. Just maybe your loved one can count on you to be there for them more intentionally. Our trials and attempts at being compassionate might spur you on with a greater sense of optimism for your loved one’s recovery. Maybe our conversations present a different approach you might take each time you enter their hospital or rehab room. And once they are back home with you, our stories suggest that recovery continues beyond the therapies, without the medical professionals, but rather with you, the family, and friends.
Jeri’s book is available from her website https://strokedialogues.com and from Amazon.com.
You may contact Jeri by email at jg@performingbiz.com
