A little over two months ago, my mother had a stroke. I have been posting blog articles that I wrote in advance during the time since she was taken ill. I thought it was time now to share some observations about the situation with you.
In a wicked irony, the stroke occurred on the very day I posted my article, Growing Up, about the changes in the relationship between my mother and me.
I have been examining the transitions in my life since retirement in excruciating detail in this blog over the past ten months or so. Despite this little exercise in egomania, the day my mother had her stroke I learned that I know exactly nothing about adapting to change. Whining about my sod drama pretty much loses its “oomph” when compared to this.
When I went over to my mom’s mobile home (where, yes, she was living alone… as I have had to shamefully admit to one medical professional after another over the past several weeks), she seemed, at first glance, to be asleep. That wasn’t too unusual, especially since she had been staying up to all hours to watch the Olympics on TV. However, I quickly noticed that something was very wrong. Her “magic button,” that is supposed to be her lifeline for help in case of emergency, was on the charger rather than around her neck. I pushed the button and got emergency services, but it is likely that she suffered the stroke several hours earlier.
My initial reaction was pure guilt. How could I have let her live alone? How could I not have been there when she needed me? How could I have moved her from the world she knew across the country to a very different life? Have the adventures, fun, and care I hope I’ve provided for her in her new home been enough to compensate for what she gave up? Has she been happy? Does she regret moving from her old life? Have I done right be her?
These questions quickly morphed into a solid concrete boulder of shame lodged somewhere between my lungs. That boulder remains to this day, impeding my ability to breath, sleep, and eat.
Even as I struggled with this tsunami of self-loathing, I knew this event was not about me. I had to put my feelings aside to focus on what my mother needed me to do… whatever that might be. Once more, I found myself in the situation of having to deal with problems and accomplish tasks I had no idea how to do. Trying to achieve what she needed or would want was made even more difficult by the fact that my mother’s cognitive and communicative skills at that point were just barely above non-existent.
Trying my best and expecting an incredibly unrealistic standard of adequacy from myself, I plowed my way through fogginess and failure and frenzy to work with the doctors, nurses, therapists, and case managers at the hospital. I researched and toured rehab facilities so that, when the hospital suddenly announced on Sunday morning that they were going to release her, I was not completely unprepared. Still, this announcement prompted me to scamper around to ensure I decided on the best facility I could for her. I hope I did, but there is really no way to know.
While I was pushing my way through the tasks and decisions necessary and keeping other family members informed, I realized I was also pushing through something else. There was a sadness so deep and dense and profound, it felt like everything I did, I did while swimming through a turbulent ocean of jello.
My mother was living her worst nightmare. As her body has aged and worn out, she has always said she could live with whatever physical impairments she had to face, as long as her mind still worked. Now exactly what she has dreaded for years has happened. Her brain in broken. In the early days after the stroke, it certainly looked like there wasn’t much hope of fixing it. I couldn’t make it go away. It felt like there had to be something I could do to fix it, if I could only figure out what.
Maybe for the first time ever, I truly, truly understood what people mean when they say “my parent wouldn’t want to live like this.” While I’ve always understood the general concept, I couldn’t help feeling that there was at least some measure of self-interest behind the statement. Maybe the person is actually despairing over how she will take care of the parent without losing her own physical, mental, emotional, and social health. Maybe she is despondent over finances. Maybe she is hurting unbearably watching the parent suffer. However, after seeing my mother for the first few days after the stroke, I could understand the belief that a person would not want to continue to live in that state, self-interest completely aside.
I don’t say that self-interest is part and parcel of the “may parent wouldn’t want to live like this” reaction to imply criticism. It is absolutely fair, right, and necessary to consider self-interest in making decisions that will impact your life. Good people consider all interests, including their own, trying to figure out the right thing to do when faced with a bunch of really bad options. Balancing those interests to pick the course of action that best meets the most needs can be unbearably hard and scary, especially when one of the interested parties has severely impaired cognitive and communicative ability. I find myself trying to think what my mother would have wanted, based on her general philosophies, before the stroke. That at least gave me a starting place. That methodology does have one major flaw, however. Before the stroke, she had only a theoretical idea of what she would feel like if she was ever in the situation she is in now.
I usually do not sleep at night. I spend the nights on the internet, futilely looking for any information to make me feel better. I make endless lists of tasks I have to complete. Each morning, I face the day with dread. I dread watching my mother struggle and hurt from the therapies and transfers. I dread tracking down one or another care professional to get the status of her condition. I dread the administrivia that I had to try to conquer without a legal power-of-attorney. I dread the decisions that were going to have to be made about her future at some point. I dread trying to find the right words to update friends and family about my mother’s progress and prognosis. I dread facing the financial cataclysm this situation will cause. I dread the mourning for the loss of my mother as I knew her. And at the same time, I am ashamed of myself for being mired in dread. This isn’t about me; it is about my mother. Truth be told, the thing I dread the most is facing another day of not being able to illuminate the dark place that my mother’s brain is struggling so hard to escape.
As the days progressed and my mother got therapy at the rehab facility, her situation starts to improve. Her physicality is improving, as well as her cognition and communication. The advances are tiny and we are both impatient, but those advances are steady. I acknowledge and celebrate those small victories daily. At the same time, each day exhausts, overwhelms, and guts me. It is hard work to encourage her to do physical activities to maximize her therapy and to come up with exercises we can do together to strengthen her. It takes incredible concentration to patiently listen and follow what she is saying. It takes patience and respect to try to converse with her in a way she will understand. It takes so much resilience to face her slips into a different time or situation on those occasions when her increasing cognition takes a detour. It takes so much faith to keep going when she bounces back and forth between the hospital and rehab facility, as the medical providers come up with additional concerns to be evaluated. I’m doing the best I can. I am sure I am not doing it right. I’m just doing the best I can.
While my mother battles with her physical recovery and I deal with the pragmatics of her care, we have sad, sparse conversations about independence, finances, and dignity. I tell her I don’t want her to worry, but I don’t want to lie to her, either. Some of these conversations are challenging, but, so far, they have also been productive and satisfying. We try to be hopeful. We try to maintain some happiness in what we share and what we still have. In all honesty, though, joy is in short supply. It is important to keep looking for it, though. Maybe, just as a flower grows towards the sun, my mother and I can learn to grow towards joy.
As we make some progress, I start looking towards the future and what the “new normal” will look like for both me and her. I am beginning to learn that there is really no way to know. Maybe learning to adapt to change means you just have to be able to stand at the edge of the great blackness of the unknown and take a step into whatever is. I just don’t know if I am brave enough to do that. I also don’t know that I have a choice.
So what are your thoughts? Do any of you have any suggestions about how to surf these challenging new waters without getting pulled under the waves by the undertow? Please share your perspective by leaving a comment. In the alternative, you can send me an email at firstname.lastname@example.org.
Thanks for reading.