Redefining My Role: Life After Mom’s Stroke

It’s Sunday morning, and I am nestled in my little office, with floor heater blasting at my feet and a fluffy blanket in my lap. I need to write. I need to make some sense out of how I turned into an instant caregiver overnight.

It has been a month since D-Day…the day my brother discovered my mom lying on her living room floor, motionless. We don’t know exactly how long she was there…at least a couple hours. I cannot imagine what must have been going through her head in those moments. She claims she slipped on a towel on the floor while letting her dog out, but the reality is she suffered a massive stroke on the right side of her brain. She was immediately paralyzed on her entire left side.

Recovering takes effort

I know from my limited research that there are so many people in this world who have been through a similar stroke experience and survived, and they have even gotten back to pretty much where they were before their stroke. I absolutely wish this for my mom. But I am learning that it takes more work than most people are willing to do, and my mom is not what I would consider the most ambitious person I know. Her idea of a good time is 12 hours binge-watching CSI from her couch with a cookie and good cup of Joe in between naps. My vantage point is filled with skepticism, something I wish I did not feel.

My mom is only 73 years old, but she hasn’t lived the healthiest lifestyle. She smokes, eats way too much sugar, and never ever exercises. In spite of this, she was a vibrant, independent, five-feet-tall firecracker with a lot of life to live before December 1, 2019. Everything changed in an instant.

Early signs

Were there early signs before the stroke happened? Yes! My mom had been complaining about pain in her head and neck for a few months. She visited her primary care doctor on several occasions looking for diagnosis and relief. Her insurance wasn’t the best, and of course everything requires approval before further testing. We received notification in the mail that she had been approved to see a specialist. Only problem is that the letter arrived the week after her stroke occurred. Ugh!

So, why do I feel so compelled to write about my newfound title of “caregiver”? I can’t tell if my why is that talking about it to a cyber-world will provide some semblance of comfort or information or insights to others going through a similar situation. I Googled the topic of “stroke on right side of brain” many times in many different ways and really didn’t find a plethora of information. Little articles here and there and many didn’t quite fit what I have been experiencing with my mom or her exact after-effects. One thing I learned is that very few strokes are the same, with recovery results running the spectrum of possibilities. I guess my hope in sharing this story is also that there may be someone out there who is dealing with a situation more in line with my experience and trying to figure it all out, and maybe we can figure it out together. Or at least have a virtual shoulder to cry on.

Impact on family

Maybe it’s just my way of coping with the impact a massive stroke has on a family member and how it has changed me. I definitely need a way to process all that I have been feeling and experiencing through this journey. I have felt hope, and then the exact opposite of hope in the same breath. Fear has been a constant these past weeks. Every time my phone rings I think it’s the call, and my heart pounds out of my chest. I have landed in “get it done” mode and found a laundry list of little ways to be helpful and do practically important things like cancelling her car insurance, gym membership, Netflix, vitamin supplement subscriptions and other unnecessary bills so we can start to collect money to pay for her monthly and ongoing care needs. I have driven all over town looking for special food, picking up prescriptions, gauze and hospital bedding supplies. I have spent countless hours on the phone with insurance and therapists and social workers and case workers. I have researched and gathered info on loan options, because there is now a hefty monthly bill for her ongoing care that needs to be figured out. It’s been a roller coaster ride of emotion to say the least. No one teaches you how do to this.

And this is just me. There is also my husband, my two kids, my brother, and his girlfriend. We have all played our parts in this drama in ways that are so characteristic of who we are in the family dynamic. I am the doer, the List Girl. We are all very different people, but in this experience we have found many common threads that are pulling us together in support of Mom.

The Diagnosis

So, what exactly happened to my mom? In summary, she suffered an Ischemic Stroke. As defined by the Centers for Disease Control and Prevention, this occurs when a blood clot blocks the blood flow in an artery within the brain. At the risk of falling into technical gibberish and not knowing exactly what I am talking about, I am going to share my mom’s diagnosis by quoting the medical records directly. My mom is dealing with:

· Cerebral infarction due to embolism of right middle cerebral artery

· Hemiplegia and hemiparesis following cerebral infarction affecting left non-dominant side

· Dysphagia following unspecified cerebrovascular disease

· Aphasia following cerebral infarction

· Atherosclerosis of aorta

· Atherosclerotic heart disease of native coronary artery without angina pectoris

· Other emphysema

· Type 2 diabetes mellitus with unspecified complications (what?)

· Other hyperlipidemia

· elevated white blood cell count

· muscle wasting and atrophy

· essential hypertension.

None of that sounds good. So basically, she has a huge blood clot in the right side of her brain that is blocking blood from getting where it needs to, and it has stopped virtually all communication to the left side of her body. It seems to be related to her heart and the fact that she has smoked for the last fifty years. The usual procedure of using a tool to go up through the veins and break up the clot had to be aborted when the doctor discovered her veins near her neck were so brittle they were falling apart mid-process.

First few weeks

The immediate impact of all of this aside from the paralysis is her inability to eat or do anything independently. She is totally dependent on others to help her with all daily living functions, and she gets to be fed with a G-tube, 5 cans of Glucerna 1.5 a day, yum. And while she is able to talk and write, her mental faculties are a little “off”. I plan to write more on that in the coming months.

My mom also spent the first few weeks just trying to cope with the situation and deal with extreme fatigue and hunger. Then she started dealing with her digestive system not totally working and getting severely blocked up with constipation. Then the diarrhea kicked in, and that hasn’t really stopped since. Reason to be worried? Not sure. When I read about this online I see things like “infection” and “sepsis”, and the downward spiral begins.

In week three, excruciating pain on her left hip, hand and foot showed up. She developed a fever in rehab and her blood sugar and blood pressure went haywire. Thankfully antibiotics seemed to help and she is back on track, sort of.

So many questions

So, every day is a new, terrifying adventure with Mom. And there is a lot of change happening over and over. We all need to figure out how to navigate this. So much to figure out. Is she getting the right kind of care? Why did the insurance company stop sending a nurse to check on her when she still has a feeding tube and we haven’t received a glucometer to keep her blood sugar in check? Why was I the one to discover she had a fever? Is she doing enough therapy? When can she start eating normal food? How do we know if an infection sets in or if her stomach tube is secure and healthy? Is her constant diarrhea something to be worried about? How do we get these questions answered? When can she go home? When can I go on vacation? I know, selfish. But the question feels like a good one to ask in these moments. Looks like I need to add Nagger and Health Advocate to my title.

I plan to continue writing and sharing, and I hope someone out there finds it useful. I hope it will provide information, restoration, recovery, and maybe even a little lightening of the load as I attempt to navigate this difficult situation with grace and gratitude. Until next time, sending good healing vibes to us all. Peace.