38 years ago, on Dec. 28, 1985, I did my first solo funeral as a minister.
I’ve done hundreds since, but almost every detail of that one sticks with me, as you’d imagine. I met with the adult children of this older man on Christmas Eve, and we came together for the memorial and the graveside just after Christmas, on the Feast of the Holy Innocents, a sad memorial that’s a quiet part of the Christmastide observances, and something I wove into the funeral. The children, who had seen some hard years with their father, said they appreciated hearing that sorrow and confusion could be part of a traditional Christmas observance.
It was with the same funeral home, but at a different location, yet to the same cemetery afterwards, that I did my father-in-law’s memorial services. So I was thinking back through the arrangements, and in the services themselves, and yes I did go over and pay my respects when I visited the cemetery to write my check and confirm our arrangements for Buck Meredith. They helped me find the marker where I’d made my first visit to what was now a familiar cemetery.
Familiar, because by now I’d done Buck’s mother’s funeral and graveside here, and in 2015 those same services for my mother-in-law. Historically, Buck’s father had been laid to rest here as well in 1940, and some of his siblings and their spouses and children; I had conducted a few of those as well. Less related by blood, Madge Oberholtzer and her parents are right by the entrance, some of the earliest committals in this cemetery. Her death in 1925 is at the heart of “A Fever in the Heartland” by Timothy Egan, a book which came out this past summer about the rise and putative fall of the 1920s Klan, which dominated Indiana and the Midwest for the first half of that decade.
But I was coming back to tend to what’s called “final arrangements” for the man I’d been caring for in a very immediate sort of way over the last few years.
What both my wife and I have been morbidly fascinated by over these last few years is how many people, on hearing we’re dealing with elderly parents and the complex ravages of dementia — and when I say ravages I don’t just mean in the lives of the ailing elder — have told us they are in the middle of a similar situation. I won’t say everybody, but it’s much more common than is generally admitted.
Once you signal you are “in the membership” so to speak, you hear it all. Because it’s something people are reticent to talk about, but are oh so ready to share. There’s a support group at my wife’s workplace now, and they filled the designated room on their first meeting. Me, I’ve been mostly learning about this phenomenon online, but the contacts and questions and statements of support have been many. And appreciated.
Which is why I’m going to try to offer a quick outline of what the endgame here looked like, because I keep getting nervous questions probing around the edges of just that issue. The question being: How does this end? What does that last stretch of this journey look like, for the “loved one” (in the indelible phrase used by funeral homes and hospice staff), and perhaps even more pointedly, for the caregiver. For the adult child or grandchild or even spouse and sometimes sibling on occasion, who has to think when their beloved no longer can.
When my father died in March of 2020, very suddenly and fairly unexpectedly even if at 85, I had to go with my sister down to their winter residence in Texas, on the Rio Grande Valley, to dismantle their household and for the two of us to confront the reality that Dad had buffered Mom’s cognitive decline for some time, and that she was worse off than we realized.
As my sister flew back, and I prepared to drive a van load of possessions, with my father’s ashes buckled into the passenger seat — did I mention the nation and individual states were discussing closures of state borders in mid March of 2020 as COVID was first spreading? — I got a message from my wife that her father had been taken to the hospital after blacking out at home, and she had come to Indianapolis to see how he was, and what should happen next.
Buck was “just” 91 then, and fairly quickly was sent home (in fact he was not technically even admitted to the hospital itself). He had a pacemaker and a hip replacement but was still driving himself to the gas station and Walmart, which he insisted on doing as soon as he went home. COVID being what it was, Joyce worked from there and stayed a few months, but Buck insisted he was fine, and ultimately she came home, and we began making trips to check on him and tend what he’d let us tend every other weekend.
In fact, I’d made a flying trip just before my own father’s death, in February of 2020, to assist him in getting his driver’s license renewed for what would turn out to be the last time. His deafness was the ostensible complication, but he was having trouble with comprehension on multiple levels when he did, in fact, earn his renewal, but just barely . . . and only because I drove over, walked him through the process at the Indiana BMV, and drove back the same day, nearly four hours each way.
By February 2022 I was a resident with him in Indianapolis 20 days out of 21, and after three trips to the BMV parking lot where we talked, he finally conceded he was not going to renew his driving privileges. This was after I resigned my full time position as a minister at the end of August, 2020, helping my sister close out our childhood home in Valparaiso that fall, then turning to Indianapolis where long weekends were becoming brief stays in Ohio by later in 2021. Christmas was celebrated by me in Indianapolis for the last three years, with the support of Geist Christian Church whose love and care I greatly appreciate.
Buck, however, was not thinking in terms of years anymore. Not really. Once we got through the tension around the driver’s license issue in February of 2022, he was letting go as much as a man like him could let go of things. First one car, then the other. But it was in the fall of 2022 he was asked at the quarterly device clinic visit at the heart hospital about pacemaker replacement, since it was ten years old now, and he said “I’m not going to replace that, just forget about it!” Not long after, he said he didn’t want to go in for his monthly coagulation check, and was going to stop taking his “blood thinners” and everything else, and frankly, I think he sincerely thought that once he stopped taking his warfarin and potassium et cetera he’d die in a month or two. And his cognitive state was by then such that I think from October 2022 to this past fall it felt to him like it was all a few weeks, even a few days.
He was ready to go; he said most mornings “I wish I would just die,” but then he said immediately after that “Are you going to make breakfast?” Which I did. I was living here pretty much non-stop, with a carefully arranged overnight trip home and back every few weeks, since Buck had declined all medical care, dental visits, and stopped taking his prescriptions, just asking for his Tylenol morning and evening. It was a slow shift from every other weekend in late 2020 into 2021 to every weekend to four day weekends by mid 2022 and then I quit the weekday job I’d taken up in the fall of 2020 as 2022 ended. Doing a week of work in three days with some phone work on Mondays and Fridays just wasn't working as we moved into fall 2022.
Which is where the realization on the part of friends and colleagues began to complicate some of my own realities. “Have you looked at hospice?” or “What about moving him over closer to you?” Um, yeah.
Not to pump up my own credentials, but I did my CPE intensive unit in the summer of 1988 at (then) Methodist Hospital on their hospice floor, and became a very active promoter of hospice as a positive step for medical care all through my years in parish ministry. And I’d helped myriad families through the whole “talking them out of driving” negotiation for ailing elderly. This was . . . different.
Different, because on one level, Buck just didn’t really track time normally anymore after early 2022. I don’t think he entirely understood how long I’d been living here full time. He’d been here since 1977, and this was the home he would die in, and his chair in which he’d slept for years was where he expected to expire. Hey, my dad did just that in March of 2020, albeit in Pharr, Texas but that was Buck’s plan in Indianapolis.
So he had not seen a primary care physician, aka “PCP” since eight years ago or so, and his PCP was long retired. He’d been seeing a cardiologist and NP for his device and a tech for his coag status for years, but when he said “I will not replace this pacemaker” and decided to stop taking his associated meds, I think he believed he’d die in a few weeks or so. Shortly after October 2022. And while I didn’t miss the every two or three week apart trips to the heart hospital (oh, I could write a book just about those trips), he now had no medical connection whatsoever. By his own formally stated wish, he would have nothing to do with doctors or even dentists, but now as an adult caregiver, what is the right way to deal with issues . . . like, um, hallucinations?
That’s what started this past summer. Sounds, shadows, figures in the next room. “Do you see that?” “Don’t you hear that?” But when I said it was nothing, he’d calm down quickly. “I’m just hearing things/seeing things, I’m getting old.” In September, he got more insistent. I would get up, walk around, come back into the family room and assure him nothing was wrong. Then he’d be fine.
Then he wasn’t. The auditory and visual hallucinations got worse, and harder to convince him were nothing, but I could still prevail. He’d finally concede there was no one or nothing on the wall or in the corner or along the ceiling, and we’d move on. He was sleeping (in his chair) 20 hours a day, but the four wakeful hours could come at any time, and he’d want food, but eat almost none of it. A suggestion that a doctor could help was rejected angrily, vehemently, unambiguously. The idea I could “trick him into the car”? He literally would not leave the house for any reason, and both Joyce & I suspect because he had a dim realization that we might end such a trip at a nursing home: he’d had to do the same with his mother back in 1974, and she’d famously said she didn’t want to die in “a home.” His solution? Refuse to leave the house for any reason at all. I do mean, at all.
By November, it was getting rough. He’d insist on figures in the corner, shadows down the hall moving, noises in the basement; I’d have to do more to convince him all was well. But it would happen at night as much as at midday. The pattern began to firm up: four or five days of almost no sleep on his part, active agitation about hallucinations, mostly auditory in fact, but then he’d sleep for two or three days straight, and then cycle into three or four days of what I’d call “September normal.” It happened once, twice, then three times and then i started checking in with local nursing homes about options, but he cycled into a quiet stretch of mostly sleeping . . . and then on December 4th, I texted Joyce that I feared another “manic phase” was about to begin.
Buck wanted to die at home. Except for twelve days, we honored that request. He was in the Emergency Department for two, in the ADT unit of Community North for five, and at Prairie Lakes for not quite five days. I called the squad on Dec. 5th at 1:15 am, and he died at not quite 9 pm on Dec. 17th, having been on morphine and Ativan the previous five days. His death certificate stated “Alzheimer’s Disease” as cause of death, which is interesting because no one had ever said that was his diagnosis; he’d only had “dementia” listed on his chart formally since the 12th and to some degree at my urging.
Looking back, the dementia was there years ago. What complicated things, at least in terms of our assessment of his condition, was that he has always been a very stubborn, and extremely contrary fellow, to a fault. I could get him to (indirectly) disagree with himself simply by agreeing with him, until he got to where I could point out that we were back where he’d started, but now he was arguing the reverse of what he’d challenged me on in the first place. Not that he’d concede that’s what had happened . . . and that was him decades ago. So as dementia crept up on him, it was not really entirely evident.
It got much clearer once I took control of the household finances, in a negotiation which simply called on my willingness to never spell out what in fact he was asking me to do, because he was aware he couldn’t make out a bill, no matter how long he stared at it. I could see that. What he started asking was for me to write the checks, because his hand was shaking, which was not entirely inaccurate. Once he saw I was writing all the checks and paying the bills, he blessedly put it out of his mind, other than writing the date on each piece of mail before I took the bills up to pay.
As I became more at ease sifting his filing system and sorting out bills and expenses, I could see pretty clearly the point at which he stopped being able to comprehend a bill or write a check. I could also see where his hyper-meticulous filing system became incoherent, with statements starting to go into the wrong folders, and cryptic notes becoming increasingly incoherent. The late fees on unpaid bills and the gaps (who knows what he had sent or if he had put stamps on them, etc.) marked a distinct horizon at the end of 2021.
And frankly, if you read many of the various online checklists about death and dying and the last stages of life, Buck was checking 10 or 11 out of 12 such criteria, but while the source would usually suggest that these were symptoms you’d see in the final weeks, he was nearly covering the whole list for months. Almost from the beginning of 2023, even back into the previous November or December.
Yet without getting into medical detail, as much as he was clearly on a terminal decline by any measure — and I’m quite confident that if he had a PCP they would have recommended him for basic home hospice care a year ago — he would still rouse in the morning when I came down asking when the coffee would be ready, have me walk him to his dinette chair, set the paper next to him and serve up a hot biscuit with jelly. In the last six months, he ate more jelly than biscuit, left most of the coffee in the mug; at other meals he nibbled at best, left most of his beer in the glass, and as I tried to track his general calorie intake it was his lack of fluid intake that began to worry me even more.
Two Tylenol in the morning, two in the evening, turning each page in the paper, being walked to the sink to “rinse the ink off” then back to his chair. Those were non-negotiables to the end; supper started being declined, and lunch was a gesture, not a meal. Bathroom trips got harder and more complicated, and frankly anyone smaller or weaker than me would have found him and the downstairs restroom’s geometry impossible to work out, but we got by.
So the end, really, was his mind going. The hallucinations and the agitation came at intervals to where I couldn’t get more than a few hours of sleep, even as he was seemingly going for days without more than an occasional nodding off in his manic phases. I considered calling the squad well before I did; I visited nursing homes and care centers in a general radius around us when I could, asking specific questions and learning more about what constituted “memory care” and “absconding protocols.”
Because the dilemma was that, up to the very end, he still wanted to get to the bathroom on his own, even if he usually needed help, and he had carefully maintained for his minimal orientation a series of clocks and calendars all around him (yes, with my necessary assistance, especially around time change, a particular nightmare I went through seven times and am thankful I won’t have to deal with again). If I didn’t show up quickly when he was of a mind to get up, he still could — unsteadily, unsafely, but he could do it if he really wanted to, and even that last night by the time I came downstairs just after 1 am he’d somehow gotten to the dining room for his hat and coat, put it on unaided, and got back to his chair.
So if I called the squad and said when they arrived “he’s in severe pain, and he’s hallucinating in a progressively dramatic way,” they’d naturally turn to him, and ask his name, where he was, who the President was, and what the date and year were. If he covered those, they’d ask if he was in pain, and he’d say “I’ve been in pain for years!” If they pressed him on where he hurt, he’d reply indignantly “Everywhere!” And it was unlikely they’d take him, I knew from experience, or if they did, once at the ER he’d not be admitted, as happened in March of 2020, an experience he was repeatedly adamant he would not repeat.
But at 1:15 am on Dec. 5th, I came down and Buck was shouting at me to stop those noises, furiously rejected my attempts to tell him there was no pounding or banging noise, and realizing he had his coat on and hat by his chair, asked why he’d gone and put them on: he replied “It’s time for us to go.”
I pulled out my phone and as he shouted, dialed 9-1-1. It wasn’t the hardest thing I’ve ever had to do, but I hesitated for a moment before pushing “call.” I knew what this meant. I had not even considered pulling out my phone the last few manic phases, because he was still just oriented enough, and intent enough on what he wanted, that I feared the result of what would happen once he was dismissed to his home with a referral to find and visit a PCP (which of course would not happen), and what that aftermath with an even angrier Buck would look like.
My hesitation was because I knew how this time would play out. I was quite certain he would go to the hospital, and I was fairly certain he’d be admitted. And once admitted and assessed, he’d be offered hospice, which we’d accept as his power of attorney, and soon he’d be placed on scheduled morphine, and there’d be the endgame I’d seen so many times, and he would die. All of that was not going to be caused by my phone call, but it would inexorably be set in motion by it. If I didn’t call, and tried to keep toughing it out, his mania and confusion and rage would have resulted in . . . well, I could imagine how management of him from chair to restroom to dinette table would devolve, and that was no less unpleasant for him, let alone me, except for the fact that I was doing the one thing he had clearly and expressly ordered me never to do.
I did it anyway. The squad arrived in about seven minutes: five big strong men came in dressed in their dark blue uniforms, the kit laid out, the questions began as I’d imagined many times.
“Sir, what’s your name?” Buck fired off his full legal name, with a glance of surly triumph over at me. “Can you tell me the date?” He looked over at the nearby calendar, then across the room at my whiteboard where I wrote it each morning. “It’s Dec. 5th!” They all laughed. “That's cheating, sir, but okay. Sir, can you tell me who the president is?” At this, he was clearly without even a clue, looking around at each of us, expecting someone to offer at least a hint.
The medic on one knee next to Buck looked back up at me, and shrugged. Everyone said “lots of people don’t know that one…” Then the medic turned to Buck and asked him to name any former president. He looked forlorn, and shrugged himself. “I don’t keep track of such things.” Again, they all laughed in a kind, supportive way. I’ll admit, I started to feel a bit nervous.
Buck was asked about noises he was hearing, and he waved that off as just nothing. Then the medic said “Can you tell me what year this is?” Buck’s face lit up. He knew this one. “Sure I do! It’s 1963.”
The medics didn’t laugh. The man next to him on one knee said kindly “No, that’s not quite right. Would you like to try again?” And Buck said “No, that’s it. It’s 1963. That’s the year!”
The one medic stood up and said “Sir, you’ll need to come with us and be checked out.” There was discussion and a little irritation, but the five of them got him onto a gurney, past me, out the door into the garage and swiftly into the ambulance. With lights but no siren, they were soon down the street and out of sight. It was 1:30 am. I went back in to change and get to the hospital.
From there, the script was what I expected, but after months and really years of slow decline, the next few days were a sharp and extreme deterioration. The ER staff tended his immediate medical issues, administered a battery of tests which showed how strong and healthy his heart and body really were, and confirmed he was not mentally oriented . . . but noted that older people taken to the hospital sometimes develop issues which then clear up as they adjust to new surroundings.
His did not. Once they finally found a bed for him in the hospital proper, he was rarely coherent, always watched, and marked as a fall risk and a potential absconder, aka he would try to leave his bed and walk out. He was on restraints, physical and later medication, which themselves limited what our options moving forward were. The doctor assigned to him was very attentive to my description of the last year, and smiled grimly when I got to Dec. 5. “Your father is a very strong and determined man.” I didn’t correct him. Our discussion was more around where he could go, because as the bartender says at closing time, “you can’t stay here.”
Buck was placed on hospice status at the hospital, and once he began receiving morphine, he calmed considerably, and we had really one more coherent conversation as the aide and I prepared him for transport to arrive to take him to where we’d found a bed. That’s a long post for another day well down the road, finding that bed. But once we had it, and as the morphine eased his agitation as much as the pain (we’ll never know which was feeding which, really) the process of leaving the hospital pleased him, and getting him set at Prairie Lakes was our last interchange with the initial morphine calming him into a brief window of coherence . . . the details of which are neither here nor there, but he may have thought he was at home again. Or he may have known he wasn’t, and had stopped caring. A day later, the hospice doctor examined him and said he really felt that his mental deterioration would kill him before his body stopped working, and I think that’s exactly what happened. He had a restless night, then three more where he responded to almost nothing at all, and simply slowed his breathing to where it stopped on Dec. 17th late in the evening. I had gone back to the house; the nurse called to tell me he was gone, and I returned to help with the final dispositions.
The next day I was at Memorial Park, looking for the headstone from 1985 of that first funeral; I already knew where the Meredith family plot was. It was raining lightly, and the ground was soft. I began to think through what I had said at that funeral years before, and what I needed to say in a few days at this one.
Could we have made him more comfortable in those last months? I doubt it. He turned out in those ER tests and imaging to have no problems with the replaced hip, even though twenty years old; it was his “good hip” that was bone on bone, and the source of the pain. If he had been willing to see doctors, they would have given him stronger painkillers, but those might have spurred a faster decline into confusion and agitation. If he’d been willing to move closer to us ten years ago, or even five, I’m not sure the complications of dealing with him would have simplified our circumstances all that much, and again, more care sooner would really have looked like palliative care, increased medication, and a faster move to nursing care and then his demise.
“Your father is a very strong and determined man.” That's correct. Father-in-law or not, he accepted the help he absolutely had to, but on his terms; without his intent insistence on doing things his way, he probably would have died more quietly, sooner. But he wasn’t going to get a hip replacement or a new pacemaker (they say it’s a very simple surgery with light anesthesia, but seeing how he responded to morphine I really wonder what his response to a new pacemaker procedure would have been); more dental work likely wouldn’t have improved his diet or nutritional intake.
Buck Meredith lived and died on his own terms. Those terms got him almost to 95 years, and virtually all of it in his home, in his chair, as he wanted things to be. We will long wonder about “might have beens” and we’re still getting well meant but ill-timed “had you tried?” questions. This is meant, in a way, to help damp down most of those. We tried everything Buck would let us try. He died as he lived, on his own terms, and that frankly probably got him more years than he might have had otherwise, and while he regularly said “I might as well just die” he really didn’t have his heart in those statements. He wasn’t afraid of death, and I respected that; he wanted pain to end, but not enough to be willing to leave the house to do so. If pain was the price of being at home and feeling in control, he was willing to pay it.
Strength of will, and clarity of purpose. That’s the best of him, and those things do not die with him. We bury the challenges and frustrations of dealing with that strong will with him, and pray for peace. Buck said that last night here to me “it's time for us to go!”
Amen.
As one who worked to keep an elderly parent home as long as possible, I appreciate the clarity and insight offered in this piece. Thank you for being there for him - and for us, who traveled along with you and Joyce. May all manner of things be well!