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.
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
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)
The mishmash of personal idiosyncrasies that we all possess make up the intricate fabric of who we are; our soul, spirit, mind and body are the sum of all of these parts. It's distinctively you, or me, it's us...our humor, our breathing, the way we eat, the cadence of our speech and the rhythm of our stride is in our DNA and life experiences woven into one unique person. Dad was no different.
He was a caricature of himself in living color; 6'4", 230 pounds with a hint of Brut and for sure the cleanest hands in all the land. It was not because he didn't work hard but because of his perennial obsession with clean hands. All of these pieces of his fabric unknowingly on display for everyone to see. He was likable, lovable, annoying, hard working and he was Dad. He was my dad, but to everyone else he was Reverend, Teacher, Mr. Bozarth, with the typical trappings of suit and tie and appropriate religious lexicon...not in a bad way or an insincere way, but just well...in the way you are picturing in your mind right now. There was a way about him. His traditions and goofy humor, his inability to solve a long division problem, but the wisdom and grace to meet with and advise world leaders. Are you getting a picture yet? Loving but stubborn, prideful but not arrogant. Quotes that only he would come up with, but quotes that will be carried down through the Bozarth line because we all still say them and laugh. "Don't say 'hate' on Sundays" ... "Suze, where's my...? fill in the blank." I remember he used to put milk in the freezer just long enough to get it as cold as possible before it would freeze, coupled with a bowl of cashews and M&M's sitting in his chair with a slight lean and his legs crossed just so. You could not have bribed him with all of the gold in the world to leave that happy place.
He was big, and strong, and funny, and all of my friends liked him...and yes my dad could beat up your dad...but, well, he wouldn't have. He would, however, take any phone call in the middle of the night, befriend any stranger he met, facilitate and cure broken relationships with all of the wisdom and true empathy of the finest arbiter, negotiator, counselor among us. Dad couldn’t fix anything or build anything but the grass was always cut. He was a lover of food even if it tasted horrible. Quick note to the rest of the family, dad was never just being nice when he had to eat horrendous food on a mission's trip or at someone's house....he really liked all food. One time he accidentally ate some cat food that was in the fridge at someone's house that we were staying at and he joked with us at how good it tasted, but I am 100 percent sure he was NOT joking. This was dad in all of his glory.
He was the master of his world but never thought so highly of himself that he wouldn't do anything for anybody anytime anywhere. His seeds of charity and good will are growing harvests all over the world. How many of us could say that? He never expected recognition, only respect. On our best day all of us may have one or two people that would jump in front of a train for us. Dad would have jumped in front of a train for anyone and on his worst day could have put the word out that he needed help and a 1,000 people would have come.
Always remember and never forget the ways of your loved ones. Their smell, their laugh, the foods they like, their philosophies and personal conjurations. It's what made them "them" and it has also probably crept into your fabric as well...let us embrace it.
Never apologize for laughing. Never apologize for crying or being angry. Always remember that even in the middle of your darkest hour there is hope and solace...look for it. It can be found in the intimate sounds of our loved ones memories. It's how we know who we are.
Who's on First? You're on first, I'm on first, we all are on first in a big game of tragedy, love, happiness and sadness. Speak words of life to your friends, family, and acquaintances. You never know who may need those words to get them through the day. -Todd
Anyone who knew my husband, knew him as a tall, handsome, dignified 'in charge' kind of guy. I must admit I was proud to be seen with him.
Sickness is devastating in any form and the loss of dignity is acute in most cases. Just needing help from others, in some sense, is an affront to personal dignity...or is it pride? I still haven't completely decided on that yet. In all probability, it is both....at least initially. But time in the trenches with a disease will slowly erode, or perhaps a more accurate word would be excise, our pride. We are left then with the assignment of trying to help maintain some sense of dignity for the person suffering.
I am still chronically in tune with the early days of my husband's symptoms of dementia. Each day brought new devastation as portions of his brain refused to function normally. From asking people for money, to inappropriately touching people, to hygiene issues, to falling out of bed and more, much more, the ravages of this hellish disease were on the march. Yet, he did not know or understand my fear and concerns. In an attempt to help him come to some kind of terms in regard to what was happening, I would often, very calmly, tell him that he had a brain disease but not to worry because “I've got you.” He in turn would look at me and say, “You're wrong...YOU have a brain disease.” The attempts at explanation were futile.
I know that men, in general, find their identity in 'what they do.' My husband was no exception. He loved what he did and it brought him great joy, but unfortunately the thing that brought him this joy was also the thing that brought the most hurtful blow to his shattering world. He was no longer able to function in the ministry job that brought him a fulfillment and sense of destiny that no one or no thing had up to that point. He could not grasp what had happened and asked me repeatedly why he wasn't teaching, traveling, having meetings etc. Where had all the people gone that yesterday needed his advice? Oh how my heart ached as I, once again, tried in vain to give him some acceptable reason so as to cushion the brokenness in his heart.
I repeatedly told him that he was loved and appreciated by many but nothing registered in his deteriorating brain. All he could grasp was that he had lost! For months, even years, I tried to facilitate opportunities for him to function in areas to reinforce a sense of dignity. At family gatherings we would ask him to pray, or to read a devotional, or sing...anything to help him regain a moment, a memory, of his true identity. But little by little the disease was taking over and the final blow came in a seemingly innocuous event...I took the car keys away...his last symbol of control.
Cruel, debilitating events ravage the core of the person's dignity. However, there is another kind of dignity. It is for those of us who still remember. It is a dignity of never forgetting the life lived for the person that has forgotten everything. In essence, remembering and referencing him is sustaining his dignity as a man with worth and purpose.
The memories for him are gone but they are alive and well in those of us who remember!
When disease of any kind hits a family like a carelessly flung grenade, your initial response is, “this can't be happening,” then it's, “okay, this is happening but how do we get out of it?” My husband, Randy, and I fought with every tool we could find but nothing was working and days turned into weeks, weeks into months and when months have now turned into years a stark reality sets in regarding the situation. Long term illness is the draining of all resources, not just once, but everyday!
You never want to be on a losing team. You don’t want to be identified with failure. You don't want to be grouped with the 'have been married' because you are still married...married but alone.
There is an old Three Dog Night song from years ago, entitled with this impressive, unequivocal name, “One.” These are simple lyrics, that give a diminutive perspective on this aloneness dilemma.
One is the loneliest number that you'll ever do
Two can be as bad as one
It's the loneliest number since the number one.....
Trying to adjust to one when you have been part of two for many years, as in my case 46 years, is an exercise in futility. Your thinking has morphed through the years and you realize there is a unit of two that has developed with varying opinions, strategies, abilities etc....all intertwining to bring identity to your life as part of a 'couple.' Your life as 'a couple' is now only a memory as I rehearse yet another simple line from the above mentioned song; Now I spend my time just making rhymes of yesterday.
It's a couples world out there and no matter how many times friends and family want and attempt to include you in their own couples world, it is uncomfortable at the least and down right depressing at the worst....and it's no one’s fault! And that, my friends, is maddening, I so want to BLAME someone or something, hoping that by placing blame I might get a little relief from the constant nagging question that pounds in my head, “why?”
With no answer to that question in sight, I must lay it aside and continue to live and take care of my husband until the final chapter is written. I am not the author of that chapter. If I did not personally trust in God as the Divine Director of my life I would be without hope...but I am not!
The friend who can be silent with us in a moment of despair or confusion...that is a friend who cares. -Henry Nouwen
People don't know what to say. It's not their fault. The thing is, sometimes what we think is empathy is actually turning a conversation about someone else back around to us. Remember those people in school who would always one up you? You excitedly tell your friend about how you got to go to a Major League baseball game the previous night only to have your excitement diminished by your friend explaining to you that he has season tickets. Maybe your friend wasn't trying to be a jerk, but it still effectively turned the conversation from being about you to being about him...we've all done it.
The Book of Romans in the Bible says to Rejoice with those who rejoice, weep with those who weep. True love is always outward focused. Let's be honest. Sitting in silence with someone when you hear bad news is awkward, really awkward. We all want to fix each other's problems. It's not just a guy thing. Everyone wants to make whatever it is better. Sometimes you can't. Sometimes you have to sit in the awkward and just be present. I can't say it any better than C.S. Lewis who writes concerning the loss of his wife in A Grief Observed:
Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief...
Maybe those of us walking through grief are too emotional and high maintenance sometimes. Yeah, that's probably true. Please give us grace. We try to give you grace too. Sit with us in silence. I know you mean well, but your 95 year old great aunt who forgets things is not my dad. -Chad Bozarth
One of the early challenges with Randy, after being diagnosed with a form of dementia, was the fact that while his brain was fighting a disease, initially his body was as strong and healthy as ever. He still looked strong, tall and handsome. This then added to the confusion of people who 'saw' the old Randy but knew something was terribly amiss if they attempted a conversation. This also added to my stress when out in public with him because no one expected him to do, say, or act out the way he did, explanations were always awkward but needed.
Not recognizing friends and family, and lack of judgment in social settings were only a couple of the symptoms. Soon he began to display some obsessive compulsive behavior. He still wanted to watch his favorite Dallas sports teams so I would make sure I checked the schedule and found it on TV for him. It was a peaceful break for me because I did not have to be on guard duty. He, however, developed a little routine that had to be adhered to each and every time he was sitting in his favorite chair in the family room. He must have three glasses of water and three bowls with snacks in them. It couldn't be two or four glasses or bowls...it had to be three. I always prepared these for him because if I did not he would get into the toothpicks, raw eggs, he even found some broken glass one time, and put these in the bowls for his snacks. The constant monitoring was draining to say the least and I had to eventually resort to putting locks on all of the cupboards and refrigerator.
He began to walk around our kitchen table or the backyard pool in circles counting or I should say, trying to count to 100. He also waved at our backyard lighting fixture saying it was somebody and would go out to it during the day and talk to it and sometimes reach up and kiss it. I tried once to question him about it but the agitation it produced was not worth it.
I can barely describe the despair and grief that tried to consume me as I watched this strong, healthy, handsome man turn into a childlike image of himself. I missed talking to him about our family, about ministry, and about our plans for the future.
He looked the same...but he was not the same! I cried myself to sleep most nights.