Remember when you were a little kid and you would bump your head into the coffee table or skin your knee or something? It would hurt, but you would pretty much be ok if your mom didn't seem too worried. If you hurt yourself and your mom looked at all panicked, well, that was a different story. You probably immediately started crying. When the person who usually tells you that everything is going to be ok doesn't look like everything's ok it can really do a number on you. I mean, not to compare skinned knees with Jesus' crucifixion or anything, but I can't imagine how panicked Jesus' followers must have been when He's getting arrested and tortured and crucified. The One who set others free now a prisoner. That must have been seriously terrifying for them.
Dealing with my dad's dementia was horrible. I hated to see him suffer. I hated what the disease did to him. I hated all of it. What made it worse though, was to see my mom, his wife, suffer along with him. To see someone empathize so vividly and prolifically was both inspiring and heartbreaking.
I thought when my dad died, the anxiety and stress I carried about the situation would die with him. I was wrong. I mean, not totally. I don't worry in the same way like I used to. Every time my phone rings I'm not thinking, "I wonder what has happened with dad this time?" Has he fallen, has he hurt himself? No, those calls don't come anymore. Now I worry in a different way. How does my mom, married to a man for all of her adult life, deal with such a loss? If I'm honest, though, my motivations are more selfish. I don't really worry if she'll be ok. I worry if I'll be ok. Like the kid with the skinned knee and a worried mom.
If mom cries, what in the world am I supposed to do? I'm not really sure at this point. I'll let you know if come up with something. -Chad
Life really does go on, even if you think it shouldn’t. Surely the norms of life should stop, at least for a respectable time after an ordeal that changed your life forever. But, alas, it does not stop. You look around and see people living their lives as if nothing has happened. “What should they be doing?” You probe your befuddled reasoning, it was a foolish thought you conclude.
Perhaps that is the plan. Life and lives must move on and the choice is up to you whether to tentatively move back in or stay on the sidelines nursing the temptation to self-pity, self-indulgence and self-absorption. Now any reasonable person willingly gives the grief-stricken a certain amount of time to ‘break out’ of the feelings of anguish but how do you know when you are personally ready for this ‘breaking out party?” Trial and error; “… a way of achieving an aim or solving a problem by trying different methods and learning from your mistakes.” You try something (and it may turn into a trial) and ultimately be an error but at least you’ll have a better gauge as to where you are on this on-going path of discovery and recovery.
I have personally engaged in this trial and error method and found it to be quite advantageous as I grasp for truth amid this volatile voyage. I regularly turn my eyes to heaven and ask God very personal questions; “Am I doing okay?” “Am I processing appropriately?” “Am I moving at the right speed toward acceptance of this new (albeit, unsolicited) life?” Answers are not forthcoming but rather a subtle sense of well-being that engulfs me and I instinctively know I will keep moving forward…that’s enough for today.
The stanza from this easily identified prayer, “Give us this day our daily bread…” now takes on a new and poignant meaning.
“Am I doing okay?” “Yes,” for this moment, I’m okay and that is enough.
I was planning on going to Cuba last year, but I finally decided against it. The nurse didn't know for sure, but in her opinion, she said she thought Dad probably had about two weeks to a month left. That was August. It's now January. I'm glad I cancelled the trip. It was the right thing to do. Dad's still here.
I went to a memorial service of an old family friend the other day. She was 59 or 60 years old. She died on Christmas Eve. It was one of the most beautiful and emotionally moving memorials I've ever been to. Did I mention she died on Christmas Eve? Merry Christmas and Happy New Year.
The older I get the stranger and clearer life seems to get. Strange, because it seems like more people I know are dying. Clearer, because things I've so often focused on, I've realized now don't really matter.
Here were people's Top 10 New Year's resolutions for 2015, according to statisticbrain.com:
I was reading a bit of Viktor Frankl's classic work, Man's Search for Meaning today.
A thought transfixed me: for the first time in my life I saw the truth as it is set into song by so many poets, proclaimed as the final wisdom by so many thinkers. The truth-that love is the ultimate and the highest goal to which man can aspire. Then I grasped the meaning of the greatest secret that human poetry and human thought and belief have to impart: The salvation of man is through love and in love. I understood how a man who has nothing left in this world still may know bliss, be it only for a brief moment, in the contemplation of his beloved. In a position of utter desolation, when man cannot express himself in positive action, when his only achievement may consist in enduring his sufferings in the right way-an honorable way-in such a position man can, through loving contemplation of the image he carries of his beloved, achieve fulfillment. For the first time in my life I was able to understand the meaning of the words, "The angels are lost in perpetual contemplation of an infitinite glory."
This, from a man dealing with the daily horrors of Auschwitz. I wonder what he would say about people's resolutions?
You see that Top 10 list? Love and family are nine and ten.
Yep, things are stranger and clearer to me now. It's clear to me that love is what really matters. Life will teach you that. It's good if you can realize it before it's too late though. I'm gonna try and love more in 2017. -Chad Bozarth
The mundane prerequisites of everyday life; the niceties that are required from birth that represent the rules of engagement of a civilized society. "Good Morning" ..."Thank You" ... "Have a good Day" are examples of such rhetorical commentary that is always just at the surface. Nothing too personal, nothing too intimate, not a true show of love or concern, but, to be sure, this is the social highway that allows all of our cars to drive the path of least resistance.
These congenialities between strangers and friends happen more often than not. But what happens when more is required? Therein lies the rub. What if you say "Good Morning" and all you get back is a shoulder shrug? What if someone has something in their teeth and you know you should say something, or heaven forbid someone's zipper is down? We have all experienced the anxiety that overtakes us when we have to break out of one of our four or five canned responses that we use daily. Now imagine that you are responsible for someone that has no filter; no social norms at all. Then comes the anxiety of "should I explain the situation?" What if this awkward way of life was the rule, not the exception?
Living with, and caring for, someone with dementia breaks the mold. The rules of engagement change monthly, weekly, daily, and hourly. There is no normal! The right response on Monday could be the wrong response on Tuesday. Words are meaningless and empathy is gutted and redefined. "Don't tell me it's a good day!" Chaos, indifference, misunderstanding, sadness, and despair are the realities I fight. But, tomorrow may bring a beautiful sunny day, and while I drink my coffee and catch my breath, at least for a moment, I don't care if someone's zipper is down. -Todd
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
The loud clamor of information that we are bombarded with on a daily basis has made us, in my opinion, neurotic and more indecisive than ever before. I yearn for the days of Johnny Carson and David Letterman...not because they were necessarily sages of humor or intellect but because in my mind they represented the finality of the 24 hour day. At 1:30 AM TV shut down! Taps was played and the American Flag was lowered, or was it raised? and that was "sign off." No more shows, no more information overload, it was the end of the day. It was the Sabbath, loosely speaking. If you woke up in the middle of the night, you would go to the restroom and then go back to bed. There was no 24 hour Food Network or Facebook "Like" tally to check and ponder. If you found a hole in your bucket on Monday (so to speak), Tuesday you may call an uncle or a neighbor for advice on how to fix it. Heck you may even have gone to a library or a preacher and face to face used words and body language to express yourself and ask for advice. Now we maneuver with which emoji is most appropriate.
I say this as a reference point for anyone dealing with a loved one with dementia. You are dealing with someone who is "Old School." They grew up with 3 TV Networks not 300. The fridge was called the "icebox" and the work day probably never included a yoga class, sushi for lunch, or a call to a therapist for words of affirmation. They represent the last of a dying generation of people who truly "Did it themselves." They fixed the hole in the bucket. They didn't call it in or farm it out. Their heroes weren't internet sensations and they couldn't have cared less about (The Red Carpet and Who someone is wearing). They were probably tough, brash and matter of fact and were definitely not politically correct. Perspective is reality. Try and have this perspective as you walk the path that is in front you. If you are like me, and not a part of the day to day grind of care taking, it helps me to know that my dad was part of this "Old School Fabric." It also gives me pride knowing that my mom has been able to take care of my dad with that same grit and fortitude. We are the inheritors of this bloodline. We are the caretakers and the friends and the family of the caretakers. The person you are taking care of is special, above and beyond his/her personal achievements. They are veterans, and teachers, and farmers whose background music plays in perpetuity and allows us to stand on a foundation of doers. Let's be doers and not takers. Let's include some "Old School" in our own lives and for all of the Henrys out there...let's fix the hole for Liza without being told to. -Todd
My siblings, Randy, Loren, Dee Anne, Denise and me, Doug, are fifth generation Bozarths of Mclean County, Bloomington Illinois. Mclean is the largest County in Illinois and is noted for being one of the most productive agricultural areas in the United States. If you ever visit, you will see miles and miles of soybean fields and never ending rows of very tall corn. Bloomington is also noted as a strong banking and business community, the corporate home of State Farm Insurance, two Universities and a Bozarth favorite, home of the original Steak and Shake. Our ranch style home was located at a T-in the road, at Lincoln and Hershey Roads. There are many Bozarth stories to tell from our growing up days in Bloomington, but you better just ask Loren about that. During High School, Randy was an outstanding baseball pitcher and during the summer played on a community baseball team which included only the best players of the area. Two of his teammates went on to play at the professional level. Along with baseball, Randy also played Varsity basketball. Being 6' 3" and maybe at most, a whopping 165 pounds, put him playing with the big guys at the post or the center position.
It's been a difficult journey walking through this disease of dementia with my oldest brother, Randy, but this is how I'll always remember him. Champaign Central High School came to Bloomington to play a conference game. They had a player named Clyde Porter, an Illinois All State Player, highly recruited by many colleges to join their team. Clyde was around 6' 8-10 inches tall, and well over 200 pounds. I am sure he was a very nice kid, but he looked mean...very mean. He was 17 but looked 30, and yes, Randy was assigned to guard Clyde. I am sure coach Wood gave Randy a little pep talk... "Randy just do the best you can, just contain that big guy. We know he will get his 20 plus points and 10 plus rebounds, but we don't want him to get any more. Don't let him dominate this game tonight. Let him know that you showed up for the game and that you came to play. Push on him, lean in on him, make him respect you!..Randy! Randy! Gooooo get him." As this happened around 50 years ago I don't recall which team won or lost, or the stats of the game (I personally choose to believe that my big brother's team won). I do know that Randy did more than contain that big guy...he shut him down. "Big Clyde" had a horrible game.
Randy was always up to accepting any challenge or adversity that came his way. He was never one to look for a fight, but never one to back down from one either. As was demonstrated that night, our opponents may be bigger, stronger and favored to win the game, but it doesn't mean that they will win. Half of the battle is showing up for the game, and when the game starts, push on, lean in and let the adversary know you came to play. -Doug Bozarth
"It'll feel better when it stops hurting." I know others have used this phrase before, but I first encountered these words of wisdom in 1982 courtesy of my older cousin Darren Hottinger.
Unfortunately at that time I was always the recipient of these "helpful" words because I was the one hurting. Darren, you understand, was in the process of what's called "Manning someone up". In particular he was trying to "Man" me up. You see I was a mama's boy and Darren had graciously taken it upon himself to slowly add chest hair to my mama boy tendencies. Great memories now, but at the time I was 9 or maybe 10 and was scared to death of being laughed at, locked in a closet or any other variety of tools that Darren may have been pondering. It was nothing ever very serious in retrospect, but for me and the perspective that I had it was world changing. Darren's perspective I am sure was that of a normal teenage boy. "Hey we're just having some fun." Yeah, fun that always ended with me getting hurt. Darren would wait just for the right time and would utter those words that I will always remember "It'll feel better when it stops hurting." I know now the spirit with which it was said was one of simplicity and matter of fact.
As I have gotten older, however, the depth of application to ordinary and extraordinary life trials is immeasurable. Sometimes, things can't be fixed. Sometimes hurts are only ever quashed by Father Time. Dealing with my Dad's dementia has been a long road filled with twists, turns, mountains, valleys and many dark tunnels along the way.
While I know there are exceptions to every rule, I am pretty confident that whatever you may be going through, rest assured that somewhere down the long black tunnel before you is a small light. Don't forget about it. Use it for motivation and keep pressing on. For it is neither the quickest or the strongest that win the race but it is those who persevere.
Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain. (Author Unknown)
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:
Regardless of the specifics, illness and death are tragic to all affected by them. At some point in all of our lives we will be directly impacted by these dark horses. Sometimes bad things happen without warning and leave us wracked with almost unendurable shock before the pain of the situation even has time to affect us. Other times, tragedy occurs slowly; relentlessly and methodically destroying anything in its path.
When someone dies, you often hear one of their loved ones reminisce about the last words they said before whatever 'it' is happened. Sometimes it's 'I love you,' other times it's, 'I wish I wouldn't have said that.' Sometimes people are thankful for their last words. Other times they are filled with regret. Either way...they remember...they always remember.
I have no idea what my last words to my dad were. I don't remember his last words to me. The thing about dementia is that my dad has been slowly dying for the last ten years. Like a classic Greek sculpture being slowly chipped away, my dad's brain is no longer recognizable, and has more in common with crumbled marble and dust than a beautiful bust.
Dad was always so obsessive compulsive about me finding a wife...kind of like Tevye in Fiddler on the Roof except I'm a guy and we're not Jewish. He would always ask me when I was going to get married. My dad was a minister so over the years I watched him perform the wedding ceremonies of so many people in my family...Dad couldn't do mine. I wish I could tell him I found the one. Well, I did, but he didn't understand...I don't think. I still talk to him and tell him I love him when I see him...I just wish I could remember my last conversation with my dad. -Chad Bozarth