“If he couldn’t do it with his hair on fire, he didn’t want to do it.”

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Written by Dr. Larry

“If he couldn’t do it with his hair on fire, he didn’t want to do it.”

On this stroke series, I’ve been talking about a case of a couple that came in where the man had a previous stroke, and he came to me in the ER weak, dehyrated with a UTI, but was ultimately depressed, I’m sure much of it related to his medical condition and post stroke disabilities. They both reminded me so much of my own grandparents, our family experience with his stroke and how things were never the same. I want to take off the white coat for a moment and talk about stroke from my experience as a grandson and one of my grandfather’s caregivers. His stroke really affected our whole family and was hard.

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But I also want to add this. I started writing about this topic and said I would discuss my grandfather in the last blog (this one). Well, Grams got a hold of me, and told me her story. And it was good to hear, different than mine. It made me think about how the stories we all tell are different, from our different points of view (she, his wife, me his grandson) and times in our life (this was college and before med school for me). So I talked to her and also to my father, who together I think they really authored this story to my 20 something consciousness. Should be an interesting blog.

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But first, let me tell you a little bit about my grandfather.

He was the greatest. Big belt buckle, tinted glasses, often wearing a ballcap. Ray, everyone called him. Us grandkids called him Gramps. Larger than life guy. Flew through the arch in St Louis, as family legend has it. Loved flying planes, was a commercial pilot, but really an entrepreneur who made a buck a million ways, had many patents for inventions. I framed one of his invention patents and hung it in my house. It’s for a steam cleaner, he did it in the 70s. Was smart about people and relationships, although a bit type A (understatement of the blog).

Anyways, I loved him. I’ve written elsewhere about how fishing with him was some of my favorite childhood memories. He and my grandma came to countless sports games of mine as a kid, which says a lot because on a good day, I was an average athlete. I peaked in 6th grade as a semi-dominant outside linebacker in the Catholic Youth League, but that’s another story. My grandfather was special to me.

When he was diagnosed with an irregular heart beat called atrial fibrillation, he was grounded from flying. Afib as we call it, carries a risk of throwing a clot from your heart to the brain and causing a stroke (the blockage type that we discussed in the blog 2 weeks ago). A stroke while flying a plane would be deadly to the pilot and the crew. Losing his license was a big loss for him–that was his love. And his type A personality didn’t like this much at all.

His medical case was a little more complicated because he had some structural heart abnormalities (IHSS hypertrophic subartic stenosis) with a murmur, and a valve problem, that exponentially increased his risk of stroke. Much higher than just afib.

According to my dad, he had like 20 strokes and was always in the ER getting a clot buster to reverse them. With afib, the clots can be small and sometimes dissolve on their own. But sometimes they don’t. The best treatment is prevention–to control or stop the afib, and to take blood thinners to prevent the strokes. My grandfathers drive to cure the afib so he could fly again led him to try some experimental heart meds to keep his heart rate normal (flecainide, for the cardiologists in the crowd, a known anti-arrhythmia med); I’m sure he hoped to fly again.

As my dad recounts, Gramps got started on flecainide in the hospital one time and was supposed to stay in the hospital to be monitored, given the medication increases the chance of fatal arrhythmias–where your heart can ultimately stop. He talked his was out of the hospital (I always keep an extra eye on my sales guy patients), and one Sunday morning was shoveling snow in the driveway (not supposed to be exerting yourself, Gramps), collapsed and suffered a cardiac arrest where his heart stopped beating for 13 minutes.

Sounds nuts, but there is the holter monitor to prove it. Somehow, he survived. And this is where the stories come in. Here’s my version.

Part of Gramps died that day and never came back. I was at a winter baseball practice as a senior preparing for the season, I remember leaving the practice and coming to the hospital. I didn’t know what I do now–it was hard to believe how someone could have survived being down for 13 minutes at all, and his chances of living to walk out of the hospital were slim. I’ve seen countless out of hospital cardiac arrests, which he had. Less than 10% actually survive to live outside the hospital, and even less with a good quality of life. At least for survival, he beat the odds.

But did he? And this is the dilemma that so many of us face when it comes to loved ones and quality of life. There are different perspectives here in our family among me, my dad and Grams about that. I want to present these to you here.

What we all agreed on–Gramps was different. They tell you (and by “they,” I mean “we” doctors) that time will tell how much someone can recover from a stroke. And there is truth to that. With effort in rehab, many can recover and get better. But the real question we are asking is, “Are we going to get Gramps back?” And the honest truth in many if not most cases is–things will be different from here on out. Probably not.

Gramps was different. After the arrest and strokes he had, his personality changed. After the first stroke, he lost some inhibition. Flipped the bird more often, was more belligerent. It was both funny and frightening. He lost his real estate job because of it. Hit #2, lost work. Another huge loss for him after being grounded from piloting.

But after the cardiac arrest, he lost his ability to form short term memory. This is the essence of dementia. Most people are familiar with the forgetfulness of Alzheimer’s, a type of dementia where people lose the ability to form short term memory (what did I have for breakfast, where did I leave the keys). At first, it’s crazy because they can tell you what they were wearing in their grade school play, but don’t remember what they wore yesterday. My grandfather had dementia from strokes and his arrest (anoxic brain injury). Different, but same.

The type A mover and shaker roaring through life gave way to a gentler, beared old man who walked with a cane and didn’t talk much. Who was this guy? Well, it was Gramps. Post stroke, and post arrest. Still there. But very different.

Part of him died that day, and that was the hardest thing. Part of him was gone. Loss. There was a bit of a goodbye that happened, whether we were conscious of it or not. We couldn’t fish or talk like we used to. So much of “who he was” had changed and was gone. It was sad, still is as I type this. I think about all the things I still wish I could do, things I’d ask him about, now that I’m a man, a father myself, a doctor. And of course, I’d love to hear his candid thoughts on the ladies.

My grandma took incredible care of him for over a decade, and we all pitched in. I took a year off between college and medical school, and was a part time caregiver, giving her a rest. And my experience of caring for him is what I connected with so much with the patient I’ve been writing about. It was hard stuff.

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I would go over in the morning, and Grams would have Gramps dressed and ready. I would cook him breakfast, usually toast and scrambled or sunny side eggs (yes, I can cook but not much more than that). And then we would just hang out. At this point in his life, this great man was reduced by disease to wearing a diaper, and he would often poop his pants. I had to strip him naked, put him in the shower and clean off the pooh. Humiliating for us both. Welcome to life, LB2 and LB4.

Now my main mission with him was to have fun, show him a good time. I got bored quickly, and wanted him to have some fun, so I tried everything I could think of that he would enjoy. He loved flying planes, after he was grounded, he flew model planes for a while but after the arrest, wasn’t coordinated enough to do that. So I thought it might be fun to go to an arcade and fly the plane games or simulations. Wrong. He hated it. I got a model plane for us to build, but his tremor was so severe and the pieces so small, he couldn’t do any of it. I remember him getting frustrated and just going into the bedroom and taking a nap. His personality was changed, but he still experienced frustration and knew limitations.

There were things he still did enjoy. Food, and people. Being social. Our routine often included going to the mall, walking around, getting some food. He liked the pretty girls at the mall. Fine with me. As I write this, maybe I should have taken him to the strip clubs. Yes, it’s bad. But I’d do anything for my grandfather.

As his caregiver, I felt like a failed at finding much he could do and enjoy. That was hard for me. I couldn’t fix it. I’ve since learned as a doctor, there are so many things I can’t fix. There are good days and bad days. And after a stroke when you have partial paralysis and difficulty speaking, it’s not hard to imagine feeling depressed. Can’t say I believe Prozac is the answer.

That’s where I really connected with this couple. She was doing a great job as a caregiver, and he was just depressed. She had done everything, and sometimes–there just isn’t much we can do but our best and accept that life just is sometimes.

A little bit of a downer, but realistic, and empathetic.

This is why it was good to talk to my grandmother. Her story was very different as I recount in the video in the car after I talked to her. Very positive, took the good. The family came together, we had time and family dinners that we otherwise wouldn’t have had. They found a support group called Strokes of Support that my grandfather found camraderie in other pilots who had had strokes and could no longer fly. Community. And Grams pointed out that Gramps didn’t experience much stress with his new personality. Perhaps he got certified in T.M. (Transcendental Meditation) during the 13 minutes of the cardiac arrest and was just more enlightened and shit. Whatever the mechanisms, the man still experienced joy, however different he was than before. Her story and spin, were good for me to hear. I am sure she was grateful, given the choice of goodbye or new Gramps, that she got more time with him.

If that was your choice, what would you choose? If this is the life you’ve got, what would yo do? You make the best of the situation, you do your best, you’re grateful for what you do have.

Now I want to contrast that with the following quote:

“If he couldn’t do it with his hair on fire, he didn’t want to do it.”

That’s my dad, talking about my grandfather and the passion and intensity with which he lived his life. It brings up the question–did he want to live like this? Would the old Gramps rather not be there at all? That’s a hell of a question to even pose, and I want to talk about it for a minute.

My Dad’s story of Gramps’ Stroke

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There is an incredible shame to losing the sense of who we are, and for men, that is often based on work, money and what we do. I think my dad is right to wonder, what would Gramps have wanted? Would he have wanted to live like this? I wonder, too. It’s one thing to say I wouldn’t want to live like that when you are fine, but what about when that’s all you got?

I think when that’s all you’ve got, both women and men, we lean toward the following: survive. We take what we can get. And we make the best of it. There are certainly times when it’s time to transition to enjoying the quality of our lives without focusing on prolonging our lives. And we are grateful for what we have, we enjoy the good times. This kind of attitude.

What would you want?

No mystery how to prevent strokes and all they take away–manage your weight, blood pressure, diabetes, cholesterol, exercise, healthy diet, don’t smoke and use drugs like coke and meth. I call these things the basics and have written about them HERE (insert link).

I’m glad for the good times with my grandfather, both before and after his arrest. Still miss him and would love to take him to lunch. Anyday. That really triggers my deep desire to know someone, and be known. A type of love. I saw that in this couple I’ve been talking about, as I did with my grandparents and family. And I think the theme message I continue to land on in these writings, is do it while you’ve got them, while you can. While we’re here. Because Life Can Change in a Moment. And it often does.

Keep your eyes open for my new video podcast called “Life Can Change In A Moment,” which launches on Sept 3, 2019. You can find it everywhere there are podcasts, and on my YouTube channel.

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