Always on Edge
As I write this, I'm sitting at a beautiful Bed and Breakfast in Cape Cod, Massachusetts. I've always wanted to come here in the Fall. I'm thankful that I'm able to travel with my wife and experience fun things.
Remember that scene in the comedy classic "What About Bob?" when Dr. Leo Marvin tells Bob to take a vacation from his problems? Not a vacation from his work, or his day to day life, but a vacation from his problems. What a novel idea. Wouldn't that be nice? If you've seen the movie, you know how that turned out. Anyway, that's the thing about life and dealing with a loved one with a horrible disease like dementia. You can't take a vacation from your problems. You're always on edge. Even if you physically get away from the situation for a little bit, you haven't really "gotten away." It's on your mind always. The phone could ring any moment with news. You know "news." You keep living life, trying to move forward. The motivational posts on social media tell you to leave the past behind...move forward. How can you leave the past behind, when you have been chained to the worst snapshot of the past possible and can't even chew your arm off to relieve you of the bondage? Ok, now I'm just sounding selfish right? You're right, we need to love our neighbors as ourselves...and especially our family. My dad's sick. I shouldn't think these thoughts. I shouldn't want it to be over...but I do. Someone told me the other day how nice it is that at least my dad is still around. Not really, it's not that nice. It's horrible actually. I hate that my dad is stuck. I hate that my mom is stuck. We have to be strong because everybody is watching us. We're Christians you know and Christians act a certain way. Meanwhile here we live on the edge.
Oh yeah, that's my bicycle helmet floating down the water here in Cape Cod. The wind was really strong today. -Chad Bozarth
Treading Water Is Not Drowning
They delivered more equipment to my house today...equipment that may be needed if he chokes or can't breathe. Our bedroom looks more like an emergency room or war zone than our bedroom. I attempted to focus as the young man tried to explain the workings of these new added devices to my already overflowing arsenal of helps.
I couldn't help but wonder what this young man was thinking as he methodically went through the steps of these potentially life saving devices. It's not that he was rude in any way but just detached. Of course he was detached, how can you be anything but detached from a situation that does not personally affect you on every level of your life? I didn't resent him...I momentarily wanted to BE him...detached, uninvolved, not moved by the harrowing circumstances that precipitated the need for these devices. I was overwhelmed at the thought of actually having to use these things. I'm not a nurse, I didn't sign up for this life saving course...I want to run, to escape, to have someone come and rescue me!
The reality that a rescuer is not coming is excruciatingly painful and frightening. I HAVE to do this, I can't escape, it's my responsibility, my duty, my call, if you will. I will not give in to the despair that tries to encompass me...I will tackle the issues one at a time.
A new resolve envelops me and I shake off the cobwebs of fatigue and press forward to the next thing that needs to be done. And then quietly and soberly I realize it is not about me but about him; caring for him, giving him a sense of security, letting him know that in his helpless state, I am right by his side.
Our strength is never measured in the calm waters of life but rather in the tumultuous churning of the relentless waves; treading water becomes a temporary lifestyle. The strength to keep our heads above the water is God's gift of provision in the midst of the storm. A #1 song from the late 60's, written by Paul Simon, entitled Bridge Over Troubled Waters, has lyrics that speak comfort to the drowning soul. Simon referred to it as, “a modest gospel hymn." The words, as a reminder:
When you're weary, feeling small
When tears are in your eyes,
I will dry them all
I'm on your side
When times get rough
And friends just can't be found
Like a bridge over troubled water
I will lay me down...
Three take aways:
As I have stated in other posts, I have been caring for my husband in some form or fashion for the last ten years. June 17th was his birthday, he turned 67. Diagnosed at 57... so young, so much life to live, and so much still to accomplish. Because of his birthday, this inauspicious anniversary has been fresh in my mind for the last few days; a decade in the on-going saga of this thankless endeavor called, 'caregiver.' This is a title no one ever strives for, it is assigned without any fanfare or preparation.
The emotional roller coaster for the caregiver throws us from side to side and up and down with relentless movement. A brief lull may occur, hardly time to catch our breath, and the wild ride begins its violent motion once again. The one thought, or prayer, if you will, is “When will this wild ride end...I want to get off!” And then, of course, following quickly behind that thought, is the guilt that accompanies our ever waking moment and accusing voices in our head, that reiterates deep seated thoughts of inadequacies and weaknesses. I need oxygen! A friend gave me a bracelet with a little charm on it that simply says, “Just Breathe.” It's surprising sometimes just how much effort it seems to take to just do that.
I really don't mean to complain, that is not my intention. I simply want to help those of you that are watching from the outside gain a little clarity of those of us that are in the midst of this carnival ride...understanding brings comfort.
The other morning my husband looked as if he was taking a downward spiral almost to the point I thought I might need to call in the family...the situation passed. The interesting thing that came from that early morning event is that the thing I thought I wanted caused in me an unexpected panic at the realization of the loss that might be at hand. It is at times like these that I have come to the conclusion it is a lose/lose scenario for some of us. The on-going care is draining but the reality of the loss of his physical presence brought about a lament in my heart that was seismic. It may seem to be lose/lose for me but it would be a win for him to transition out of a mind and body that refuses to engage...in that I must find comfort when this roller coaster ride coasts to a final stop.