Category Archives: Personal

At a loss for words

It’s been quite a while since I posted anything about my Dad’s recovery or about stroke in general.  I’ve avoided writing for lots of reasons – but the clearest to me is exhaustion.

Physical exhaustion.

Mental exhaustion.

And most importantly, emotional exhaustion. That’s without a doubt the worst and the one that I spend every waking minute trying to avoid.

For 15 months I’ve been Dad’s physical therapist, occupational therapist, speech therapist, cognitive therapist, secretary, day planner, health care advocate, chef, personal shopper, nurse, nurse’s aide, chauffeur, psychologist, personal trainer, maid and somewhere in there – his daughter.  I think my original role as “daughter” is the one I take on the least often.  It’s too exhausting to be that with everything else.  Being his rehab specialist in all other things is easier.  Less messy.  Less emotional.

Being his daughter is foreign to me now – so foreign that I’m forgetting what it was like when he took care of me.  I’m losing the Maryland games, the late night phone calls when exams were overwhelming me, breakfast with Dad at the diner…Maybe that’s why I’ve avoided being his daughter for so much of this.  I’m struggling to remember who he was before the stroke and every time I try, I slam the brakes on because I can’t hold back the sadness and despair that begins to seep in.

I haven’t written because writing forces me to face the emotional side of stroke.  And that’s where I’m at a loss for words. That is the side that rips out your heart daily and leaves you struggling to breath.  Watching Dad go through this is devastating – it’s easier to write his long-term goals and focus on the objective measures that mean there’s some improvement.  If I disconnect from him I can almost stay objective and am not paralyzed by sadness.

I’ve felt unable to advise others on this blog recently because recently I’ve only felt able to deal with the physical. As a physical therapist by trade, I’ve treated stroke before – but I stayed safely disconnected. Until Dad, I just didn’t get it and I feel like my former patients deserved better – needed more from me than just exercises and feedback. I missed so much about what stroke really is because I didn’t let myself  see the big picture – didn’t think that it was my job to appreciate or understand the emotional exhaustion that comes with it.

I’ll be better and do better. I’ll write something down tomorrow on this blog because something is better than nothing. Advice is better than silence. And for now, that’s just going to have to be enough.  Maybe tomorrow I can face the loss a little better and allow myself to let the emotions in.

Because stroke really is more emotional than physical.

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Dad and I, 2012

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Just put one foot in front of the other – and repeat x 10,000

Imagine that you decide to drive to Florida.  It’s nighttime and you don’t have a GPS.  You get in your car and find that your headlights are dim and you can only see 100 feet in front of you.  You hit the gas and can’t get above 30 mph.

Now what? How do you get to Florida?

You drive 100 feet at a time and make decisions about which path to take only when you can clearly see that part of the road. It’s slow going but that’s ok.  You’ll get there when you get there – the important thing is to keep moving forward.

When I was  Kinesiology major at Maryland, we were told that it took 10,000 hours of practice to master a skill. This “10,000 rule” has since come under fire, but the idea of repetition for mastery of a still holds merit. When it comes to training or rehabilitation, the question is just how much repetition and just how long until progress becomes meaningful?

Some days it’s all that I can do to keep Dad moving forward. He’s been an amazing and willing patient through all of this, but the honesty of the situation is that it’s a constant battle. Intrinsic motivation is hard to come by and the drudgery of everything can leave him depressed. While driving home from a particularly productive PT session yesterday, (many thanks to the owners of my clinic and to Traci, his PT, as Dad’s health benefits are long since run out) Dad caught me off guard.

“If it weren’t for you, I’d never have tried that independent walk on Saturday. You made it possible….I’m not sure how I’ll continue this when I go home to NJ. I don’t know what I’ll be able to do on my own.”

This past Saturday Dad walked about 40 feet independently, without a cane and with no one nearby to catch him if he fell.

It Was Monumental. 

Dad’s Solo Walk on Aug 15, 2015
We were at Maximum Performance Physical Therapy (specifically my company’s primary location in Laurel – I work in their Odenton office). My owners have been kind enough to let me use the space anytime the clinic is closed (as Dad’s actual PT benefits through Blue Cross would barely have rehabbed a sprained ankle let alone a massive stroke). That morning, before we left for the clinic, he had experienced an emotional meltdown over the task of getting out of a chair (sit-to-stand as the rehab world calls it). This happens more often than any stroke survivor or caregiver wants to admit. He was so focused on his “performance” of the task that it paralyzed him and he was then unable to do it at all. (This also is a common occurrence as his post-stroke brain is now working to manage all movements consciously with half the tools. I liken it a one-handed juggler struggling to keep all the balls in the air during a windstorm). Within seconds of the “performance error” we were in a cascade failure – the emotions he wrangles daily overwhelmed him. He was emotional and I was left fighting to stay afloat myself and bring him back to the “light.”  So, once at the clinic, my plan for the day was to attack the sit-to-stand and remove this monkey from his back.

After a few good repetitions, I decided that incorporating walking a few steps independently after standing up might allow him to see some progress. I reminded him that his focus needed to be on the left side (as the unaffected right side is automatic). He listened, and for the first time since his stroke – it actually meant something!  He stood up from one low PT table, walked 6 steps, turned and sat down on another table. I stood in between just in case and made him repeat the process 8 times. After sitting down to rest, a smirk crossed his face.

“You better watch out Ang. One of these days I’m just going to stand up on my own and go.”

The idea hit home and I decided his idea wasn’t half bad.  It would serve multiple purposes – to give him confidence in himself and to force me conquer my fear of letting him go without the safety net of my support.  If he said no, at least I’d be calling his bluff…

“One day? How about TO-day? Get up and walk over to that chair. No cane. No help. Just you.”

There was a fleeting look of panic that crossed his face. He scanned the room – took in the distance to the chair. His hesitation didn’t last. He took a deep breath and then there was only resolve in his eyes.

“Alright. Watch me.”

Now I was nervous. I trusted him and knew that he could do it, but letting go of the responsibility of his safety was surprisingly nerve-wracking.  I exhaled and tossed out one last series of cues.

“Remember – focus on the left. Take your time.”

He stood, walked away from me, crossed the entire clinic to the chair and sat down. His smile was the biggest I’ve seen since December.

“Get a video. This one’s for your blog.”

He went again. I got the video. He walked the distance two more times. When he finally sat down to rest he cried – his first tears of joy since December 25, 2014.

It’s no surprise that stroke recovery is a marathon and not a sprint. There are uphills where you struggle and progress feels like it comes to a halt (or reverses). There are downhills where you coast and gains come at you so fast you feel like you could handle this indefinitely. It’s constant and unrelenting with no breaks for the stroke survivor. Dad attempted to put it into words for me.

You wake up a stroke survivor. You eat your meals a stroke survivor. You walk to the car and go out to a restaurant a stroke survivor. You greet friends, answer emails and watch TV a stroke survivor. You go to bed a stroke survivor.  There’s no escaping it.

Rehabilitation is constant – your mobility impairments can’t be “put on a shelf” to give you a mental break. They are as much a part of you as your receding hairline or freckled skin.  As such, often caregivers also get no breaks. They have the same identity crisis in their day-to-day. They live each of their moments as the care giver to a stroke survivor and feel entirely responsible for their care and yet often helpless to alleviate the burden on their loved one.

At least, I do. Especially when Dad told me yesterday in the car that he didn’t know what he’d do once he was home and I wasn’t there. In that single statement he summed up my greatest fear in this process: That I won’t be able to get him far enough no matter what I do because it’s not my recovery. That the real burden lies on him – not me. He’s the deciding factor and I’m just here to help set him on the right path. No wonder parents are scared shitless when they have to give their kids freedom to live their own lives…

Dad left his house in Central NJ on Christmas morning with the intent of visiting my grandmother in South NJ and coming home that night. He planned on a 10 to 12 hour round trip (2 hours driving each way with our family’s Christmas festivities between). His stroke changed all that.  It’s been almost 8 months and he still hasn’t made it back home. Sometimes it crushes me just to think about that fact. His entire life has been in a state of suspension since December 25, 2014 and though we’ve given 110% each day, he’s still not ready to try to head home yet.
But today we are closer than yesterday and tomorrow we will be closer than today.
The key is to keep going, keep trying. It doesn’t matter how quickly you’re moving or what it looks like to others – rather that you’re moving forward.

Just keep putting one foot in front of the other…

And repeat x 10,000.

There’s never enough small talk for shower time.

“Maybe I can still go and get my Doctorate in History someday.”

“Not a bad goal to reach for Dad. If you did, what would you write your thesis on?”

“I’d work to disprove the common belief that –(Civil War Commander)– was responsible for the –(Civil War battle loss)— at ———-. I’ve always felt that they got it wrong.”

“Sounds like that would be a thesis worth reading. Make sure I get a copy…. FYI: You missed the top of your left shoulder and your left thigh.  Grab that loofa and get scrubbing.”

Three to four showers a week leave for lots of awkward silence to fill with unrelated conversation.  I’m a master at small talk – I meet strangers daily at work whom I massage and see partially clothed before they’ve even decided if I’m legit-looking enough to be capable of healing them.  But, shower time with Dad left me struggling for topics and with a sinking feeling in my stomach.  (And no – it wasn’t just the parental nudity).  While consciously I recognized the need to help Dad shower (his mobility was so limited that he and Mom might get hurt if I didn’t do it) and was happy to be there to help, there was the feeling deep down that this was one of those life changing moments that you can’t take back.  Even more paralyzing was knowing that, despite his keeping the feelings to himself, every second in that shower relying on my help was crushing for him (and Mom) too.

Being a caregiver is unimaginably tough. Being a caregiver for a parent is beyond terrifying.  It’s a moment most of us face in our lifetime, yet none of us is ever ready for.  The role reversal for both parties causes high levels of emotional, physical and social stress.

When I voluntarily took on the role of caregiver for Dad, it was instinctual.  I knew that caring for my parents when they got older and needed it was something that I wanted to do. Family has always taken center stage for me.  My husband felt the same and we had talked about building our life in such a way that we could provide that support for both sets of parents should the need arise in the future.

“Life is what happens to you while you’re busy making other plans.”

What I didn’t see coming was that I’d have to step up to that role at 32 years old; Less than 3 months after I got married. Less than one month after I bought my first house. And at least a year before I even planned on having my own children. The timeline was all wrong.

I wasn’t ready.

In some moments, when Dad was having a particularly bad day, the negative emotions pushed through. This has to be mistake – this can’t actually be happening. Dad is my safety net.  He gives me advice over the phone when I’m overwhelmed.  He goes to the Maryland games with me and shares in my successes.  In the future he’s going to teach my kids to play baseball and cheer on the Terps with us.  He’s way too young to have a stroke…. And wait- aren’t I too young to have an aging and disabled parent? I was devastated, overwhelmed, sad and angry.  I saw friends having kids, getting married, vacationing and visiting their able-bodied parents (who were exactly what mine were just last fall).  These peers were doing the “fun” things that people my age were supposed to do.  In stark contrast, I was giving up all I could in my life (hobbies, friends, part-time jobs) to be available to help.  I felt cheated.  What was supposed to be the one happiest years of my life felt like it had been stolen from me and I was bitter, jealous and crushed. My husband also factored highly into my despair – he’d been an amazing supporter in all this.  He gave it all up along with me – just 2 and a half months after we got married – and he was living the same nightmare too. The guilt was desolating.

In other moments, when Dad had a small victory or I saw “him” in his eyes, my fight returned and I felt eager to continue and excited for the future.  While the task (rehabbing Dad to independent function) seemed almost impossible, I was the daughter best suited for the challenge.  I’m a Physical Therapist. I’m determined, hard-working and driven.  I have immense inner strength and the idea of “giving up” has never made sense to me. Beyond me, my family was ready to fight too. My husband, a personal trainer and coach with a strong knowledge of human movement and performance, was working with Dad when I couldn’t.  My Mom, a teacher in NJ, was willing to let Dad stay at my house knowing that Maryland was the better location for his recovery. She drove back and forth weekly, spent every weekend and many weekdays (taking unpaid FMLA) here and put her life on hold.  My brother came down during the first few months to cover when Mom couldn’t and learned some physical therapy techniques to assist Dad in his recovery. Family members called, texted and visited to show support. Dad had the best chance of anyone to make a miraculous recovery. If anyone ever had a better dream team for stroke recovery – I’d like to meet them!

So – what’s the point of my ramblings?  While there’s lots to take from this experience so far, the one certainty I’ve learned is:

Care giving is tough. 

There is no manual and you fail as often as you succeed.  You lose yourself in the day to day and the relationship you had (whether it be your parent, spouse or adult-child) permanently changes.  You go from the highest highs to the lowest lows in the blink of an eye.  Friends disappear, family falters, empathy and compassion at your work ceases.  While you’re never alone, (24-7 support takes all your time) you feel isolated and disconnected. You act insane and feel terrible about it (yup – I’ve yelled at my disabled Dad more than I care to share). You grieve your old life. You resent those who aren’t dealing with what you are. You pray, bargain and beg for some miracle.  You lose yourself.  You press on.

And it’s ok.

Sometimes there’s just not enough small talk for shower time.

 

ICU Tunnel Vision

“I felt so much that I felt nothing.”

The first few days after Dad’s stroke were surreal to say the least. We no longer lived day to day, but were existing only minute to minute. Doctors kept telling us to “be guarded” and that “it would get worse before it got better” – phrases that seemed scripted and further added to the nonsensical idea that we weren’t actually living this. For me it felt like I was watching a medical drama on television – only there were no commercials and the subject matter was too serious. In each moment I felt that success or failure was entirely dependent on the action I took and that one missed moment could be the difference between recovery, disability and death.

We welcomed each potential positive sign (Dad’s first few words, his recognition of a family member, involuntary twitching of his left foot, etc) and disconnected mentally to get through all the bad news (the TPA didn’t work, the stroke expanded again, there is excessive swelling on his brain, he will be disabled). Looking back, I remember each of these and recall that most of the “bad news” seemed false to me. I wasn’t ready to believe that I’d lost my Dad to stroke. I couldn’t fathom yet that the man whose limp left hand I was holding was actually a new person with stark differences from that man I’d called “Dad” for the first 31 years of my life.

When someone you love is in the ICU, the world outside the hospital ceases to exist. This “protective mechanism” shuts your world down and sets blinders up to focus you on just this moment. You process things from second to second and medical test to medical test. You set your watch by when the doctors make rounds and obsess over how you can ensure that you’ll be there to hear all that they have to say. This self imposed narrowing of your world allows you to process what’s happening without distraction, and isolates you from others with whom you’d be unable to interact and couldn’t emotionally handle right then.

When Dad was in the ICU, I felt separated from myself. Within hours my body had oriented to a new “daily routine” and I began thinking of him instead of me. My needs ceased to exist. I was never hungry, never tired, never in need of a break. I hated being told to “go get some food” or “go home for the night and rest” as neither task registered as normal to me. It’s not that I felt obligated to be there 24/7, rather I didn’t understand that there was an alternative. Life outside Dad’s ICU room wasn’t real. Instead, every action and thought was towards helping him. Was he warm enough? Was his paretic left arm well supported? Was he positioned well in the bed? Should I do more passive range of motion on the left arm? Would he like to watch Maryland Basketball – and if so was it on the TV or could I find it on my iPad? The list went on and on. When I ran out of things to do for him, I tried to find things to do for other family members to keep the disconnect. Would Mom like to go to my Aunt’s for a shower? Would my Mom-mom like an update? Should I check on my brother in the waiting room? Anything to keep the hole in my chest from expanding. Anything to keep the emotion buried a little longer.

My advice to anyone experiencing this is to let “ICU tunnel vision” happen. It is what allows you to prepare for the long road ahead and keeps you sane in an insane moment. Without this “numbing effect” that turns off much of your system, checks your emotions and allows you to focus on this moment, you’d fall apart before the true battle even began. This is your “training” and your body needs it. Please – feel no guilt over the separation from your life (work, friends, etc) – it isn’t your fault, you aren’t “dropping the ball” and you don’t have to fight it.  It will be there waiting for you and you will have to reconnect with it soon enough. Just not today.

Along those lines, if you are the spectator – the friend, the boss or co-worker, the neighbor who saw the ambulance that night – please leave space don’t seek out answers or constant updates. If you want to share your concern, text or email rather than call. I remember screening almost 95% of my calls because I didn’t want to have to talk about it or just didn’t know what to say. I savored the text messages because I could read them for support without having to respond. They were moments of connection without all the complex emotions. When I did chose to respond, I could “copy and paste” a generic summary to each and every text (my apologies to those who received one of my “mass announcement texts” and didn’t know until now). If you want to help, the gestures that meant the most at that moment were the meals family friends cooked and brought to my Aunt’s house (our home base in South Jersey as the stroke happened there and it was near the ICU). Those meals fostered a small sense of normal into the evening after leaving the hospital when all I felt was numb.

“I wanted to write down exactly what I felt but somehow the paper just stayed empty. I stared at the blankness and I knew that had I been able to choose actual words to document that moment, I could not have described it any better.”

Fall down 7 times. Stand up 8.

My name is Angie.  While I’ll be the author of this blog, it’s inspired entirely by my desire to heal my Dad, and in doing so, share information with others that could benefit from his story.

On Christmas Day 2014, my Dad suffered a stroke.  His MCA (middle cerebral artery) became blocked and cut off blood supply to the right half of his brain.  Despite early intervention (we had him at the hospital and on TPA within 36 minutes), his stroke progressed and finalized, leaving him completely paralyzed on the left side of his body.  He could not open his left eye, swallow, speak clearly, move his left arm or leg and had fairly extensive cognitive damage. Much of the sharp, intelligent man that I’d spent 31 years of my life admiring, also couldn’t read, problem solve, recall or think clearly.

There is no single word that effectively describes the despair that stroke causes.  Rather I’d have to say that this experience has added to my vocabulary, forcing me to search out SAT/GRE words that attempt to convey the complex emotions I feel from dawn to dusk and through my dreams/nightmares. While Dad didn’t die, much of the man that I grew up with did.  I was left (barely) standing only to know that the road ahead would be long, emotional, uncertain and painful in every way possible.

Now, please don’t mistake me for a pessimist. I’m generally optimistic and upbeat.  In this case my job left me with the “advantage” of seeing the shape of our potential future, and based on what existed in the current healthcare system to help Dad, my goal (getting my entire Dad back) seemed daunting.  I’m an outpatient physical therapist. I’ve seen (from a healthcare providers perspective) how devastating stroke can be on a life.  What I didn’t know is how naive I actually was.  I couldn’t possibly begin to empathize with what the life of a stroke victim, and the life of their loved ones, actually looked like.  Consider this my apology to every patient (and their family) that I worked to rehab in the past, despite not fully understanding how devastating what you were enduring actually was.

This is blog will serve as documentation of Dad’s recovery and treatment.  I’ll detail each and every intervention we have used, reference literature and provide guidance to those who need help.  But because I feel that this alone isn’t enough to help others, I’ll also describe the things that you won’t find in a textbook or the medical journals.  Those moments that tear you apart, send you over the moon and leave you lost in between.  My intention is to share the personal – and in doing so help others (especially those healthcare workers out there with no personal experience) see what stroke actually looks like.

“I’m too positive to be doubtful.  To optimistic to be fearful. And to determined to be defeated.”