Lately I enjoy listening to podcasts on my way to and from work. It all started with the “Serial” podcast, but after I finished seasons 1 and 2, I found I missed having intellectual stimulation during my commute. Upon the recommendation from a friend, I discovered a few podcasts that I have come to love. One such podcast discusses short history topics.
Recently I listened to an episode on mutual assured destruction – or M.A.D. – that got me thinking. Mutual assured destruction is a term used during the cold war to refer to the ongoing potential nuclear threat between the US and Soviet Union. Each country stockpiled enough nuclear weapons to destroy the world, but refrained from using them because to do so was akin to suicide. Not only would one country wipe out the other, it risked obliterating itself – mutual assured destruction. MAD.
After listening to the podcast I came to the stark realization that taking care of my mom is starting to feel like mutual assured destruction. As you may remember from a previous post, my mom is participating in a drug study for her condition, Progressive Supranuclear Palsy (PSP), at a local university. So, approximately every ten days she comes to stay with me for a week while I take her to her appointments. We also play board games and watch episodes of Downton Abbey, which neither of us watched when it aired. We spend a lot of time together when she’s here – almost every waking minute. Our time together has become such a normal part of my routine that I find I don’t know what to do with myself when she goes home on off weeks. I start to miss her.
the lake near my house
As wonderful as it has been to have time together, it’s also exhausting. My mom’s condition is declining, and as a result, so is mine. Or maybe it’s the other way around. Vice versa. I don’t know. It doesn’t matter. I don’t sleep well when she’s with me because I’m constantly aware that every noise I hear could be her falling. Fortunately all of her falls at my house have been minor, but it’s only a matter of time. I usually communicate for her, cook, clean, do laundry, and entertain her. I hold her arm and help guide her while she walks, but holding up an adult who weighs 15lbs less than I isn’t easy, and it’s an entirely different story when my lightheadedness kicks in. Once I almost fainted while I was helping her walk. It was horrifying. Can you imagine what would happen?
Mutual assured destruction.
Taking care of another human being, even part-time, is a tremendous responsibility. Her well being becomes directly related to mine. If my symptoms explode, it destroys us both. If I can’t get her to her appointments, get her the drug, it’s over. While participation in this study probably won’t save her life, it could improve the quality. There’s no second chance.
My fatigue has again become overwhelming, to the point that when walking I’m never sure I will reach my target, regardless of whether my destination is 20 feet or 2,000. Naturally, I can’t simply drop my mom off curbside at the airport, I walk her in and get a wheelchair attendant to wheel her to her gate. Last time, I wasn’t sure we were ever going to make it out of the parking lot. Thankfully I got her to the wheelchair attendant, then lied down twice on separate benches on my walk back to the car.
Everytime my mom is here, I whisper to myself at least once or twice “I don’t think I can do this anymore.” And then I remember that I have to, that it’s not an option, that I want to, and that my health doesn’t matter right now so long as I can be there for her in a significant and meaningful way.
The pain in my legs and arms has increased. Maybe it hasn’t. Maybe it’s just more frequent. I don’t know. Maybe I’m just more aware of it now. Maybe trying to physically support an adult is taking its toll. I had some blood tests this week because this fatigue and pain are abnormal for me. Everything came back normal. Perhaps it’s just a POTS flare. Possibly I’m coming down with something. Maybe it’s part of the MADness.
courtyard of one of the places we go for the study
I do my best to keep my symptoms from exploding while she’s in town. First I stopped doing any kind of exercising when she’s here. Then, I had to stop exercising at all, other than a short walk with the dog, even when she isn’t visiting. I started taking a variety of vitamins. I don’t touch alcohol when she visits – not even a drop. I learned that one the hard way. I don’t ingest anything new, whether it’s food, drink or medication. I can’t have an off day. These days I have two kind of days: 1) those where my mom is in town, and 2) those where I’m preparing for her to be in town. There aren’t many “rest” days – at least not right now. Her disease is progressive, so one day she won’t be here anymore. I’ll rest when she’s not. I just hope I can take care of us both until then.
My mom is here now, and to be honest, I’m fearful that I wont be there physically in the way I
need want to. I only need to make it through the next few days, and then it’s okay if I spend the next week in bed. Hell, I’ll spend the next month in bed. Just let me make it through the next few days. I need to prevent the bomb from going off before then.
Mutual Assured Destruction.
This is my life right now, and I need to show up for it. Tell me how.
Or hope of help existed.
So I resigned myself, picked up my father,
And turned my face toward the mountain range.” – Virgil
Smell ya later.