Ed Bedford 11:44 p.m., June 19
The end began simply. I suppose it usually does. A loss of appetite here. A lapse of attention there. A tendency to take on lion-esque qualities when it comes to basic needs, preferring a bed in a quiet room to any other form of entertainment or diversion.
At first it’s alarming. What could be wrong? He must certainly be in pain or stricken with some rare illness. How else would you explain his loss of interest in our usual banter and activity. Lord knows, he can’t possibly be tired of responding to the trivial stream of inquiry that defines us. How do you feel today? Did you sleep well last night? How was breakfast? Do you want to go for a walk? How about a Root Beer? How’s Lynne? Have you seen mom?
I mean, let’s be honest. How could anyone tire of that existence! No, he must be in pain or stricken with some rare illness. There is only one way to know for sure. It’s time to head to the Cove. A place where the mysteries of life are brought into clear focus in a way that leaves no room for doubt. But, more on the Cove later.
For now, imagine forming a coffee-clutch in your late 70’s with five to six individuals that share but two traits in common. A passion for the same hobby (in this case, boating) and an allegiance to the political party of your choosing (in my dad’s case, that would be Republican, of course). Different levels of education, different life experiences and different levels of mental competence all directed at the singular purpose of solving the riddle of the day. A riddle that often repeats, as one might expect from a group that has befriended dementia and enjoys plotting alternate courses to the same point.
That riddle might take the form of redesigning the bathroom towel dispenser that has forever plagued mankind (why does the paper always get stuck up in the crack when you use it?) or why do airplanes make noise when they fly overhead(as they have since they were invented)? The point is that it doesn’t really matter. The daily riddle is simply driven by the moment. A moment of irritation, delight or confusion.
Well, today the riddle will be driven by my father’s condition. Although his color is good, he’s having a hard time staying awake and has adopted a quirky lean to the right as he rests comfortably in his red, six-wheel, turbo- powered chair. But, first things first.
On the way to the cove, we detoured to Imperial Beach, home to some of the best doughnuts in the universe. That is, when the owner of the bakery chooses to sell them. Sometimes he’s open. Sometimes he’s not.
We were skunked on our last trip as he chose to delay opening for no more apparent reason than to allow the line in front of his stand to build to mob-like proportions. We chose not to be part of his theater on that day.
But today was different. Dad was not acting like himself and there was only one real way to know if he was okay. That was to put one of Angelo’s doughnuts in front of him and carefully measure the response.
We would wait as long as necessary for this critical diagnostic tool.
Within thirty minutes I had reached the front of the line. If you ever saw the episode of Seinfeld that featured the Soup Nazi, you have a good feel for the process. Step up to the window. Greet the owner with respect and then ask if you might be permitted to purchase some of his delightful product. You can buy one doughnut or a few dozen. Any more than that will cause the CLOSED sign to be re-hung for additional frying.
Regardless of the quantity you buy, you will pay list price (today that’s eighty five cents for each doughnut and eighty nine cents for a cinnamon roll). No discounts for quantity. If you don’t like that, step aside and let the next person in line buy. No confrontations today. We place our order, pay our fine and move on.
Moments later we arrive at the Cove and maneuver our trusty steed into the handicapped parking slot that has for years been filled by dad’s vehicle de jour.
It’s always fun to arrive at the Cove bearing treats. I’m sure all the guys eat breakfast before arrival but it doesn’t matter. Fresh doughnuts have a way of melting away any memory of dietary restrictions placed by spouses or physicians. Complaints of what shouldn’t be eaten are drowned out by the sounds of smacking lips and fingers being licked clean of a fresh glaze that is still warm from the kitchen.
For whatever reason, it’s not a big group today so we share the bounty with some of the kids that are enjoying summer camp at the Cove. It’s almost like a party. Almost.
As I maneuver dad’s chair into position, that quirky lean is even more pronounced and I’m forced to physically straighten his body. He remains asleep though the process and the group immediately begins assessing the situation. I’m off to get coffee for dad at the chandlery. Like the doughnuts, some days they have it. Some days they don’t. It’s dependent on the ongoing renovation process and whether or not anyone has mistakenly blown the main water valve that day. We’re in luck today. There are three piping hot choices.
Dad hasn’t been drinking much lately but I still go through the same routine. Half regular, half decaf poured into the San Diego State University mug given to him by his daughter Lynne. As I place the lid, I wonder if I’ll guess correctly. Invariably, one arm is working better than the other and we often have to reset the lid to allow use of the other arm when I set it in front of him. Just part of the dementia train we boarded so long ago.
As I approach the group, the quiet assessment is coming to a conclusion. The group has decided that my father has had a stroke. No one will speak the word but as Paul holds up a magazine and points to the margin I can clearly see the word S-T-R-O-K-E spelled out in blue ink. A quick glance to the left and right confirms the diagnosis as Jerry and Richard nod in agreement. All this before I’ve even had a chance to conduct my own assessment. Undeterred, I assume my usual position seated next to my father and grab one of the doughnut specimens. Waving it in front of his nose, I awaken dad and ask him if he’d like to partake.
What happened next was surreal.
We’re all familiar with the Denial – Anger – Resentment – Acceptance model of emotion. Acting as a caregiver to someone suffering from dementia or Alzheimers invariably sucks you into some aspect of the model. While the Denial stage is brushed up against early in the disease, most of your days are spent wallowing in the Anger or Resentment stages as you respond to the daily cycle of behavior changes and caregiver challenges.
That’s not to say that there aren’t wonderful days. Incredible highs. Fun experiences that just wouldn’t be possible were it not for this horrible situation. Of course there are. That’s what keeps us going and we will be sure to explore many of them. However, there are also a lot of profoundly sad days as we are forced to deal with death twice in one lifetime. Once as the mind of our loved-one dies. And then again as his spirit is broken and they begin the process of letting go of this world.
As I waved the doughnut below dad’s nose, it happened. At that moment I knew we were beginning our journey on the road to the second.
The Emergency Room of Coronado Hospital is a familiar place. We’ve been there several times before. This is the first time I have delivered dad to their doorstep. Usually, he’s in the back of an ambulance. This time is different. No need for the sirens and speed. He’s comfortably sleeping in that leaning position so I just point the van and drive. When we get there, I’ll wheel him through the door being ever so careful not to bang his leaning head into the door jam. Mission accomplished. We’ve timed it perfectly. They’re between busy spells and we’re afforded immediate attention.
Familiarity is good. However, I prefer it in restaurants, at ballparks or banks. At a hospital it just means you’re spending too much time in a place you’d rather not be. But even here it has its benefits as the nurses on staff greet dad like an old friend.
In the last couple of weeks dad has gone from walking with the aid of his walker for distances of up to 25 yards, to not being able to stand up even with the assistance of a caregiver. He’s gone from speaking in full sentences to barely getting a word out. As you know, his friends have diagnosed a stroke.
I alert the medical team that it will take 2-3 of us to handle the transfer to the bed. Reinforcements are called in and we successfully complete the transfer. Dad pretty much sleeps through it. He’s aware of where he is and I know that he’s angry that I brought him here. But he accepts it. The same way he has accepted the other, often humiliating aspects of the disease. We’re here to get answers. I’m not sure that we fully appreciate what question we’re asking.
Two hours later, after being stuck, prodded and x-rayed on every part of his body, we were about to begin getting answers.
The emergency room is an interesting place. On any given day, it represents a microcosm of our world at large. Today is no different.
There are four beds in this particular examining room. When we arrive we are directed to Bed 2. I’m not sure why we are assigned to Bed 2 in an empty examining room, but who am I to question a numbering system in a room dedicated to saving life and limb.
It was the bed closest to the door so maybe that’s the reason. All I know is that as someone that has been accused of having some anal-retentive tendencies, I would have preferred that they had called it Bed 1. I’m pretty sure we’d all agree that being in the #1 position is bound to have greater benefit in the long-term. But I digress.
It didn’t take long for the other beds to fill up. In fact, during our time in the ER we witnessed turnover in two of them. As you might expect, the longer one remains in a bed in the ER, the more likely it is that the outcome won’t be good.
Take Bed 1. A seventeen year old Mexican boy fell into a mirror while cleaning his garage. He ripped open his hand, requiring stitches. He’s a minor so the first step is asking his parents to come down to give permission. Unfortunately, they’re a little busy for that so they request permission to just phone in the authority. You can feel the love. He probably broke their favorite mirror.
I listen as the nurses put the parents through the paces on the phone. In the end, the procedure is cleared. After x-rays, the boy’s hand is sewn up and he’s released. Were those really his parents on the phone? Was there really a mirror? Or even a garage?
Bed 1 is sanitized and a middle-aged woman from London is brought in. She’s told that it may be a while before she is seen. Oddly, she remarks that she can use the peace and quiet before drifting off to sleep just as her husband leaves. We’ll find out later that he had to get back to the Hotel del Coronado to watch the children. They didn’t want to leave them alone at the pool for too long.
Then there’s Bed 3. I would guess that the Jewish gentleman occupying this bed was in his early seventies. This would turn out to be his second heart attack. Last time, he received a few stents and his wife was very insistent that the entire staff be made aware of her displeasure with the quality control of that operation. The fact that the surgery took place on the East Coast was irrelevant. It happened at a hospital and, as luck would have it, they were now at a hospital. Seen one, seen them all, don’t you know.
Shortly after getting Bed 3 hooked up with all the necessary ER wiring, the physician ordered the application of a nytroclycerin gel and injection of Lasix to reduce liquid around the heart. These diuretics are very effective as evidenced by the gentleman’s need to relieve himself fifteen minutes later.
When presented with a urinal he pointed out that he was not a ‘urinal man’ and insisted on being released from his wires to visit the bathroom. This is a scene that would play out three more times before I left the ER. At one point, the nurse tried to convince him that he might try simply standing with the urinal behind a closed curtain in the ER. He confessed that it just wasn’t in his nature and demanded bathroom privileges. The staff couldn’t have been nicer or more accommodating. Off with the wiring.
The best part of the Bed 3 story was family centric. Again, seemingly representative of our world-at-large. His wife worked her cell phone furiously. When it rang loudly in the ER she remarked to her husband that everyone in the ER turned as if to enjoy the special melody it played. How could she be so oblivious to the fact that it was irritating other patients and the staff.
After several calls she finally reached her daughter and asked her to start the family phone tree to alert others of their situation. Her daughter informed her that she was busy feeding the kids their lunch but would get to it in the early afternoon. You could feel the love.
Bed 4 was occupied by a twenty something college student. He had fainted when getting up that morning from bed. Yes, he had been drinking the night before. But he always did and nothing like this ever happened before. Ah, to be young again.
He also complained of a sore throat so the nurse decided that a throat swab should be taken as a precaution to rule out strep throat (apparently a fairly common university illness). In the next few minutes I thought I had been transported to a circus freak show.
I could hear the gasps from Bed 4 as the nurse remarked that they were the largest she had ever seen. At this point I became a little worried and questioned my decision to not always carry my IPOD ear pieces with me.
She quickly called in the other nurses as the poor man put his swollen tonsils on display. Even in sickness this cocky young man had stolen the show in the ER. He could feel the love.
Turns out he did have strep throat. I thought it was contagious but it must not be because they kept him in the same room with a guy having a heart attack, a woman from London sleeping and my dad, who was about to begin dying.
When Dr. King signaled me out of the room that sensation I had at the Cove quickly returned. They don’t usually mind breaking good news in front of the patient. We were off to a far-flung corner of the ER where we could meet in private. I knew I had seen this show before, even it was just on television.
Dr. King is a professional emergency room physician. I’m not sure I have ever really understood that profession. Seems like they may be the gypsies of the medical community. Lighting from hospital to hospital, city to city, saving lives and stitching up broken bodies. Intuitively, I would have assumed that they had Al Gore-like interpersonal skills. After all, no need for relationships when you’re working on a terribly sick patient that you’ll never see again.
It’s not the first time I’ve been totally wrong. This fifty-something physician is a wonderful man and an incredible professional. At times like this a little grey hair comes in handy. Dr. King has not only seen death in the hospital, but he’s more likely to have experienced it in his own life. Funny how a few personal experiences can soften us up.
He spoke softly. He spoke directly. He spoke genuinely.
“Your father has had a nice long life. Sometimes we just have to know when it’s time to let go and I suspect that he’s decided that that time has come. I’m still going to run tests. I hope I find something I can fix. But I’ve seen this before and I just want you to begin thinking about the time you have left together a little differently.”
He then quoted some Psalm and I pretended to understand the reference. It didn’t really matter at this point. I understood the message and had shifted all my energy to processing the reality that the end would come soon.
Dr. King then asked me to contact my wife to have her present when the test results were returned. He estimated it would take another couple of hours to complete the work-ups. As he put his hand on my shoulder and reassured me, I began to wonder if I could bottle up his warmth and kindness. This isn’t taught. He has a gift.
Bed 4 has been sanitized and is now occupied by an elderly women complaining of dizziness. She’s a regular and the ER family welcomes her back. She’s alone today but claims to have a sibling and daughter nearby, if she needs them. You can feel the love.
An hour passes and the nurse indicates that the tests are already back. She says things look pretty good but that the doctor would like to speak to my wife and me together. I promise to let them know as soon as she arrives.
What does ‘pretty good’ mean anyway. I’ve already had a private conversation with the doctor and if I understood right, good in this case meant bad. Nothing to fix. If there’s nothing to fix, we’re simply throwing in the towel. All of our lives are spent learning how to fix things. Learning how to solve problems. The cruel irony is that when those skills might be needed most, they’re least effective. God is reinforcing a message we too often forget. We’re not in charge.
Nothing to fix.
Lynne arrived moments later. As promised Dr. King was soon signaling us back into a private corner of the ER. Round 2. He left the psalm out this time but did just as effective a job of guiding us through the cycle of life that we were about to experience.
Our makeshift office consisted of one chair, ER Bed #8 and a small stool. I motioned to Lynne to take the chair. I figured that Dr. King would sit on the stool and I wanted her to be eye to eye with him. I should have predicted that he would have none of that. He wanted both of us to sit and he casually sat on the edge of the bed, exuding the warmth I had witnessed earlier.
Since I had the advantage of the earlier discussion, all of my focus was on Lynne, my beautiful wife. She looked intently into Dr. King’s eyes as he described the negative test results and confirmed his earlier diagnosis. Her father was beginning to die.
Her face was flush and the tears that pooled in the corner of her eye gave away her pain. Why do we feel like we have to be so stoic when we get news like this? The same thing had happened in my private session with the doctor. I wanted to cry but couldn’t.
“Now was not the time to be weak. I must remain strong so that others can grieve.” What kind of nonsense is that?
I don’t have the answer, but I do know that Lynne felt like her heart was being ripped out and for whatever reason something was keeping her from releasing emotion. Just another insurance policy on her claim to a piece of the pharmaceutical pie directed at gastric ulcers and depression. At least she wasn’t alone.
Her thoughtful, loving response was perfect. “Ray and I have been discussing the situation for the last couple of weeks and this really comes as no surprise. We have felt dad slipping away. You’re right. We have no desire to conduct a myriad of elaborate tests or scans only to find out what we already know. All we care about is that we make every moment he has left, comfortable. We are prepared to do anything we have to do to see that he does not suffer.”
With that, Dr. King stood, looked Lynne in the eyes and as if to grant her wish said, “then, that’s what we will do.”
“Then, that’s what we will do.” Six simple words couldn’t possibly have had more meaning to either of us. We had an ally. Someone we had just met. Someone who had been there before.