The move to Dallas

Dad moved to Dallas today. It went very smoothly. He had medical transport, riding in a reclining wheelchair in a van, while I followed behind. At 10:00 he was ready to roll, and by 2:05 he was here.

Dad quickly was whisked away to his room, and that was the last I saw of him. I passed the covid temperature check outside, so I was allowed into the lobby and admission offices, but that was all. Beyond the restrictions on visitors, as a new arrival, Dad will be limited to his room for the next 14 days. It's a stinker, but I understand the rationale.

After admit paperwork, I spoke with a physical therapist and the admitting nurse, introducing them to Dad. They were nice. Later I got a call from a case manager, and I phoned a nurse or tech on Dad's floor to plug in his heart loop monitor base station. So, good communication. What's more, his building is new, with a lobby decorated like a chic hotel. Don't know what else I can hope for in the first six hours.

Unrelated to the day's events, but delightful, I'll share a story from Cousin Kathy:

   ... from the 50s and 60s when my family and John's spent time on Cape Cod for many summers. There was lots of beach time and card games. The women in the crew were avid knitters and there were lots of knitting instructions to be found in the cottage. Your Father entertained us all by reading these instructions out loud verbatim. Who else could crack up his audience with renditions of:
   Cast on 37 sts
   Row 1: K1, *P1, K1; repeat from * to end
   Row 2: P1, *K1, P1; repeat from * to end
Lots of percussive Ks and Ps to the great delight of his audience.

Really funny and off-the-wall. I'd never heard that one.

Moving on Tuesday

Tuesday remains discharge/moving day. While I've been in Tulsa, Dad and I did get to wave to each other through the closed door at rehab. We Facetimed twice. The second time, he got to see cousin Debbie and Chopper, his dachshund, which he enjoyed. I also learned that he walked 34 feet in the harness seen in a blog post last week.

Fingers crossed for a smooth trip and transition from care in Oklahoma to Texas. At least we shouldn't have to worry about traffic on the drive. It's all silver linings...

Moving plan

Dad's discharge on 31 March has been confirmed. I'll head to Tulsa today, and next Tuesday, I'll caravan with medical transport van back to Dallas. He'll enter skilled nursing only a couple of miles from our house. There he will continue his current therapies, albeit at about half of the time per day that he's had during rehab. This will continue for an unknown amount of time - on the order of weeks, we expect - as long as he's "showing progress".

The weird part about this exercise for me is that, due to covid-19, I won't be able to see Dad in person until he discharges on Tuesday morning. And once he's admitted here in Dallas, I'll have to say goodbye again, not even able to see him into his room. I understand the reason for all this, and I'm confident that the facility here is good, but it's still a very strange feeling.

Up and at 'em

Here's Dad at PT, in "the harness":

I think "the harness" is helping him get back the feel of using his legs to walk. I also know that it is not "the ambulator", and may be more demanding than that contraption. 

Facetime time

I had a very good video chat with Dad early this afternoon. He spoke with me in those few minute as much as at any time since the stroke, and his "lag time" was noticeably shorter than when I left Tulsa and on the phone last Friday. It was very heartening.

He says that in PT he's now using an ambulator - I think I heard that - which helps him to "move his legs where they need to go". In my mind, it looks like this:

In reality, it's probably more - dare I say - pedestrian.

Here in Dallas, I had a long talk with someone from a second facility that Dad might transfer to. Once again, getting more information from people who've been through this process is a big help.

No news is all the news

I got to speak with Dad for a minute or two last Thursday. As no visitors are allowed, hopefully a call can become a regular part of speech therapy. It was short, mainly me talking to him, reminding him that we're thinking about him.

Dad is still scheduled to be discharged from the rehab hospital on March 31. We have confirmation that one skilled nursing facility near us in Dallas has a place for him at that time. Trying to find out about a couple other options, but knowing that at least one is available is comforting.

Visitor lockdown

I learned this morning that visitors to Dad's rehab hospital are now restricted to primary caregivers there for education or discharge. I certainly get it, but it will be harder to know how he's doing.

In any event, I'm heading back to Dallas this morning. We're looking for places there where Dad might live after discharge from rehab, but I doubt we'll be able to visit any place because of their covid-19 precautions. Don't know how those might affect transfers of new patients.

Happily, before lockdown, Kerry and the kids came to have a double birthday party for me and Dad in his room. They brought a cookie cake, a balloon, festive napkins - all color-coordinated - and song. (On another visit, the kids played their sonatina pieces for Dad on the piano in the cafeteria.) It was very thoughtful, and I think he enjoyed it. I know he enjoyed the cookie cake.

A joke

I found this in Dad's email from a couple of weeks ago. I'm sure he'd like to share it.

Aphasia, Apraxia, Initiation, Perseveration

I am hesitant to write too much about Dad's condition because of my own ignorance. I'm not a doctor; I don't even play one on TV. That said, I thought I'd share the mental impact of Dad's stroke.

The terms in the title have all been used in reference to Dad's current condition. There seems to be a degree of overlap or connection among them, so I won't try to precisely define them or map them to Dad. Here are things I see:

- He speaks very little. When he does, it is almost always related to the current conversation or situation. It also takes a long time for the words to come. If you don't wait at least five seconds for an answer, you're conversing too fast. (Exception: He's been quite quick the whole post-stroke time greeting and saying goodbye/thank you to people.) And lots of times, he simply doesn't answer questions.

- As far as we can tell, he hears and understands everything said to and around him

- Dad has control over his right arm and leg. However, they have been weakened by the stroke, and control of those limbs is challenging. He may know what he wants to do, but it can take a while for him to start the action. The flip side of this, as J explained to me, is that once he starts something, it can be hard for him to stop. For instance, he'll chase and chase the last little flecks of food around the plate, or start repeatedly clicking his bed controls or TV remote (even when the clicking doesn't do anything).

- Living is really hard after a stroke. Every activity takes a lot of mental energy, which has reduced his attention span. Half and hour of watching a movie, listening to a book, or eating is a long spell. And the cumulative effects of days of therapy are also tiring. Yesterday, I went with him to all of his sessions. I could see how hard he worked in each one. But at the end of each, and between sessions, he was simply dog-tired (at which times the persistent or repetitive behaviors become more pronounced).

Today is a day of rest for rehab. Kerry, the kids, and I will spend some time with Dad, but I'm hoping and expecting that this will be a quiet day for him to recharge.

Quiet Day

I don't have much to report. During Dad's therapy sessions, I was back at the house with Debbie, going through mail and bills and the like. Afterwards, Dad was about the same as yesterday. I'm planning to join him at his sessions tomorrow, and sometime thereafter, Kerry, Katherine, and Owen should be here. (Yay!)

Make 'em laugh

To jump right to the headline/punchline, my last bite of Taco Bueno street taco for dinner was full of pungent onions. I didn't want to spend the rest of the evening with a funky mouth, so I put a dollop of Dad's toothpaste on my finger and rubbed it around inside my mouth. He looked at me bemused - as if thinking, "Who raised this kid?" - with a legit grin on his face. Not even my best bit, but it clearly tickled his funny bone.

Dad's second full day of rehab went well. He actually got a bonus, second hour of PT, and got to give some treats to Finn the Trainee Therapy Dog. He had more energy this afternoon after therapy than he did yesterday.

I'd started reading The Hobbit aloud over the weekend. We had some time this evening, so I read another chapter. When I finished, Dad reached for the book and picked up reading, aloud, where I'd left off. He read more than a chapter that way. I'd seen him ace a couple of post-stroke reading evaluations, but those were only a handful of short sentences. Otherwise, he hadn't shown much interest in reading. He would kind of stare at the newspaper, but there was no sign that anything was registering or catching his interest. That changed when Bilbo, Gandalf, and the dwarves were crossing the Misty Mountains.

Last news for today: Dad has a target discharge date of March 31, corresponding to a three-week stay in rehab.

Rehab Day 1

Today, Dad's first full day in the rehab hospital, did not disappoint. The highlights for him were an hour each with physical therapy, occupational therapy, and speech therapy (the last being more about cognition, not the mechanics of speaking). These were intro assessment sessions for the therapists, learning about Dad's current condition, but they were intense. I won't attempt to list everything that they did; suffice it to say, he was worn out by the time he got to dinner.

As well, I got to speak with Dad's case manager, who provided a very helpful overview of the next 2-3 weeks. Early next week, Dad's rehab team will have a plan, including a target discharge date and goals for various skills and abilities he will have by then. Implicitly, this plan will also provide expectations for the level of care and type(s) of therapy Dad will need at his next facility. Structured guy that I am, having a plan, or even a plan for a plan, makes me feel better.

The rehab hospital is a lovely change from a traditional hospital. Nothing against a traditional hospital; their design has to accommodate many different needs, and of course many of these facilities have evolved over decades as needs have grown and changed. The rehab hospital is quite new, with spacious corridors that encourage moving around, a big therapy gym, and a nice courtyard where Dad was able to sit with Debbie and Marty this afternoon. And the food is better.

It turns out that Dad's speech therapist, J, is the older sister of one of my best friends from high school. I'd say, "It's a small world," but this is all happening within ten miles of where we grew up, so maybe not. Still , it's a funny coincidence.

The "brains are weird/amazing" moment of the day occurred during speech therapy, where Dad was given a circle drawn on paper and was supposed to add the clock numerals and draw the hands for ten past eleven. (Evidently this a classic therapy question, which is why many of you readers are nodding in recognition.) My left-handed Dad was holding a pencil in his right hand, not having made any mark on paper, to the best of my knowledge, at any time since his stroke. He sat stock still for quite some time. J saw him look at his left hand, and the fingers on his hand twitch; Dad knew that writing was a thing to do with the left hand, even if it wasn't cooperating. So J offered that he could just point to where the "12" goes on the clock. After another long wait, Dad moved the pencil to the top of the circle, and wrote "XII", "12" in Roman numerals. He then proceeded to label the rest of the clock in Roman numerals, including the horizontal bars at the top and bottom of each numeral. Finally, for good measure, he drew the clock hands in the right places. It was amazing and heartening to see all those pieces come together. I was also so grateful for J's insight and patience to give him the time to have that success.

New location

Today Dad made the move from the hospital to a rehab hospital. Before that, he did get the loop heart recorder implanted and a second bubble study, to confirm that there is no shortcut for blood between the right and left atria of his heart. Beyond that, though, there was a good deal of simply waiting before he actually was wheeled out, around 5pm.

It's good to make this move. Once the initial stroke has passed, the hospital is focused on preventing a second stroke and assessing the level of need for rehab. As we heard on day one that in-patient rehab would be appropriate, there wasn't a lot more to be done. Not to say we were neglected; neurology and therapy staff visited, assessed, and answered questions, but it started to feel like a bit of a holding pattern. Of course he wasn't ready for this stage of treatment on day one or two, but now that he is, just changing locations feels like progress. I'm looking forward to tomorrow, meeting the doctors and therapists, and learning about the weeks to come.

We're also looking forward to seeing Cousin Debbie, who's arriving in Tulsa late tonight.

Last night in the hospital

Tonight should be Dad's last night in the hospital. The plan is for him to get an implantable loop heart monitor in the morning, then move to an in-patient rehab facility.

The cause of Dad's stroke has not been clearly found. An atrial fibrillation is a leading candidate. The implant is less than two inches long, slipping under the skin and wirelessly communicating heart data for three years. The data should help to determine if there is something abnormal going on with his heart.

Dad's left hand started to wake up today. We could see him flexing the thumb and forefinger, and a couple of times, when rolled onto his right side, his hand latched on to the bed railing. These are little movements, admittedly, but being the first ones observed in more than 72 hours, those little movements are big deals.

Speech

Something I should have mentioned in Sunday's update: Dad's speech is getting much clearer. He's not really mumbling at all now. There's still a fairly good lag between the question and the response, but more words are coming when they do arrive.

Shaving update

Back at Dad's house, where I grew up, I found my electric razor from high school. It still works. Now Dad is (fairly) clean shaven, and I can hear "The Circle of Life" playing in the background.

Sitting on top of the world

Dad spent most of the day in a hospital recliner instead of a hospital bed. This may not seem like much of a difference. It didn't seem like much of a difference to me, until he moved into the chair, and I saw his energy level jump up, as if a switch had been flipped. I guess there's something about getting out of bed that tells the mind, "Wake up!" It was definitely more work, being in the chair. He took a couple of naps, and looks like he's ready for a good night's sleep.

His right hand was more stable today. Friday and Saturday, it had a pronounced shake, often at rest. Today, he was drinking from a cup with hardly a tremor. He'd also been doing a lot of aimless fidgeting with the right hand. That seemed to have abated some today. (Although even now he's holding his cell phone and tapping it a bit as he drifts off.)

Marty visited again today, and Mom spent several hours in the room with Dad. He expressed his frustration to her. It was only a few words and some tears, but it was the first clear, emotional communication from him. Of course it's sad to see the toll on him. But the silver lining is that it shows so much about his understanding of the situation. We can't whisk away the frustration, but at least we know better where he's coming from.

We learned that Dad's hair-combing game remains strong, and that he has a good foundation for tooth-brushing. We learned that my give-someone-else-a-shave-with-hospital-razors game is weak. So weak that, with less than a third of his face even touched, Dad grabbed a washcloth and started wiping off shaving cream. We'll try again tomorrow with an electric razor. In the meantime, no, you can't see pictures of the Mangy Two-Face look I gave him.

Papa John had a stroke

At some point this week, my dad had a stroke at home. We don't know exactly when it happened, but on Thursday, cousin Debbie texted because Dad hadn't replied to texts or phone messages for a couple of days. Not his MO. After he didn't respond to my text or call, I got in touch with his friend in town, Marty. Marty went by the house to find Dad sitting in his chair, but not responding to Marty or EMTs pounding on the window, shouting his name. Once they got in the house, Dad evidently greeted Marty right away, but he clearly needed to go to the ER.

His was an ischemic (clot) stroke in the right anterior cranial artery. If you're going to mitigate a stroke by dissolving or removing the clot, you have to act within a couple of hours. That window had passed for Dad. CT and MRI show a large, damaged section of his right frontal lobe: to my untrained eye, a strip about an inch wide in the front half and upper two-thirds of his brain.

Dad went to the ER around 6pm on Thursday. I got there around 11:30 that night. Despite the events of the day(s), he recognized and greeted me right away (as he's done with every visitor or caller since). Friday was a full day of tests and visits from internal medicine, neurology, physical therapy, occupational therapy, and speech pathology. He was moved from the emergency department to a stroke service in the hospital.

So the immediate impact of the stroke: Being on the right side of his brain, the left side of Dad's body has been most affected. His left arm has scarcely moved; one nurse and doctor have discerned some reflexive movements in the fingers, but they are very subtle. His left leg has shown only uncontrolled or reflexive movement. (It has a superb tickle reflex; more on that later.) There's a droop on the left side of his face, which is more pronounced when he's tired. And it seems that his brain may be "neglecting" the left of his field of vision. He appears to have normal sensation all over his body. He can control the right side of his body, but movements are slow, and he's quite weak. When the PT and OT jointly got him to a sitting position on Friday, there was no sign he could maintain it.

He seems to be fully aware of his surroundings. As indicated above, he greets whoever enters, and he's aced every question about his name, birthday, location, month, year, etc. His speech is mumbled, with a very flat affect, and there is a noticeable delay for him to respond. He's been cleared to eat since late Friday morning, and has polished off every hospital meal since (being fed, of course). He is most talkative towards the ends of meals or on the phone.

His spirits are the hardest thing to gauge. Though he is not talking much, his speech is full of his typical, dry quips. (Extremely dry, given his current voice.) He's made a few comments about being home "tomorrow", and called the plumber to try to schedule a repair at the house. It's hard to know how much this is undue optimism, cynicism about the ability of the medical staff to help him, or complete unawareness of his own condition. (On Friday, he claimed to be able to move his left arm, but that didn't come up today.) He tends to clam up when he is being asked to perform various tasks ("raise your arm", "follow my finger with your eyes"). Again, it's hard to say why. Fatigue, because these tasks are very challenging at this point? Frustration, because he can't do them? Confusion? Pissed-off resignation? I don't know.

This afternoon, I did see his first grin, and maybe even heard a chuckle, while I was clipping his nails. I went to his left foot, forgetting its aforementioned tickle reflex, and was dramatically startled when it flew up at me. It made me laugh, and when I looked at Dad's face, he was clearly amused, too. That was the highlight of my day.

After a very busy Friday, I've been told that we're just hanging out at the hospital this weekend. For a few days after a stroke, there is an elevated risk of a second stroke. Preventing that is the top priority. Dad has high blood pressure - he'd just started a medication to bring it down - which is the top risk factor for a stroke, but there has been no clear, "aha, here's where your stroke came from" found. On Monday, we'll start talking with the case manager about the next step. That's likely to be an in-patient rehab facility, a place with hospital-level care plus three hours of rehab, five days per week. In extremely notional terms, he might be moved to such a facility mid-week, for a 2-3 week stay.

I want to thank all of the family and friends who have visited or called Dad and who have sent love, prayers, and offers of help. (This goes for all those back in Dallas who are helping Kerry, Owen, and Katherine fill in the gaps while I'm in Tulsa. I don't know exactly who's doing what, but I know that you have our family's back.) It means so very, very much; I can't imagine what this process would look like without you.

I will do my best to provide news here, or at least more funny stories of Dad trying to kick me in the face.