Since my lovely friend Carolyn passed away on April 9, I've had a number of relevant conversations — e-mail, phone and in person — with friends and a few strangers. The topic is usually caring for a loved one in that loved one's final months/weeks/days. I thought I'd somewhat mastered that while taking care of my mother, who died five years ago and spent many years before that teetering on the precipice.
But with Carolyn, it turned out to be different in so many ways because, first of all, she was Carolyn. My mother was 91, unable to walk and by the time she departed, almost unable to see. With absolutely nothing in her future but pain and being tended to by medical personnel, she was ready — even eager — to go.
Carolyn — much younger and with a long list of things she still wanted to do — was not eager; not eager in the least, not even when she was in the most agonizing pain. Long after we both knew an actual recovery was not humanly possible, she fought for one, not so much because she truly believed there was a chance but because she was the kind of person who just had to go down swinging.
For each of them, I had to be The Advocate — the functional person who handles everything for the sick person. I had to watch over their needs, get them whatever they required, intervene with the hospital and caregivers when necessary and run the aspects of their lives they could no longer handle, including personal finances. In simpler terms, I had to just be there for them.
If you ever find yourself in the position of an Advocate, I have a number of tips, the first being this: Make friends with everyone. Meet everyone who does anything that could impact the life and comfort of the patient and jot down who they are, what they do and how to reach them. This includes doctors and nurses but it also includes the food service people, the folks who make appointments, the suppliers of medical equipment, the custodians…everyone. Some of them are surprisingly helpful and in ways you might not imagine. For one thing, most of them understand the arena a lot better than you do.
Not only meet them but make them realize that you're always available. I printed up special business cards and spread them around, including leaving a batch with my mother and later with Carolyn to hand out. The one for my mother had my name, who I was ("her kid," it said), a phone number via which I could always be reached and a message to "Call anytime I can help make things better for her." Whenever my mother didn't understand what a doctor or nurse was telling her — which happened a lot in her last months — she would hand a card to the person and say, "Please call my son and explain it to him."
Also — and this is important — make sure they understand that you understand the limitations of their jobs. Each of these people functions in a bureaucracy with rules and laws about what they can and cannot do. Advocates often get demanding and threatening when a nurse or an orderly says, "I'm sorry. We're not allowed to do that." Don't you be like that. Threaten sparingly…and only after you've tried saying things like, "Look, I know you're not allowed to give her that medicine without the doctor's okay. Can you tell me who I can go to who can authorize it?" I have found that people in and around the medical profession are extremely grateful and helpful when you recognize that they can't just do every single thing you think will help the patient.
One thing that was new with Carolyn was how involved I was with the hospital's palliative care division. Her very wise doctors and nurses there spent almost as much time with me as they did with her.
I was not their patient. My personal medical care comes from a completely different network and insurance company and such. Her medicos however recognized that Carolyn's "quality of life" had much to do with how I held up through it and how I managed things for her and maintained a proper sense of perspective. Where she was unable to think straight, I had to. So this terrific nurse lady named Mary and a caring, all-knowing doctor kept calling me to see how I was doing and to advise me on how to be a proper companion to Carolyn during those agonizing months.
As close as I was to Carolyn, and as much time as I spent with her, I couldn't and still can't pretend to fully understand what she went through. I can speculate how I would have responded in that situation but that would just be speculation and anyway, it would be me and not her. Our relationship was both richer and more contentious because we viewed the world in so many conflicting ways.
Until about the last two weeks, she was fairly lucid and logical and able to communicate. Well into Stage Four, Carolyn remained a very, very smart woman and as long as I'd known her, she was never the least bit reticent to tell me (or anyone) exactly what was on her mind. As I wrote in another piece here, the first time I really thought the end was near was when the palliative care people told me that as far as they were concerned, she was no longer able to make her own medical decisions and those were henceforth up to me. The next big one was soon after as I became aware that she was losing her ability to tell me (or anyone) exactly what was on her mind.
In my own speculations about what I would do in her position, that is the moment when I would somehow get my hands on a pill — I have no idea how — that would end things painlessly, then and there. But maybe I wouldn't think like that if I actually reached that stage. Carolyn endured weeks of pain — the kind morphine cannot mute — to try and stay alive and delay the inevitable. I cannot say she was wrong to do this or that I'm certain I would not do the same.
She lived with breast cancer for quite some time and managed to live a fairly normal life for years. There were times when it seemed like she might just beat it. Increasingly though, it began to stop her from doing the things she wanted or needed to do and to cause her great pain.
Several years in a row, she was literally packing to accompany me to Comic-Con (or some other convention) and she'd admit to herself she just couldn't take care of herself properly in a strange hotel room. "You're going to have to go without me," she'd say. Obviously though, there was a secondary reason: She knew I had responsibilities at the convention, including appointments relevant to my career, and didn't want me neglecting them to take care of her.
I understood this and loved her all the more for it. I come from a family where a key way you showed love for others was to know when you would be creating problems for them…and then to not do that.
Because of the cancer, she couldn't help but dump many of her problems on me and I was glad whenever I could help, which alas was not always. Still, she was wise and compassionate enough to understand how much of my time, energy and cash she was consuming and to feel a certain amount of guilt. As things got worse and worse, she kept apologizing and saying, "I know you didn't want this in your life." What do you say to that? About the best I could muster — and I know these weren't sufficient — were things like, "I wanted you in my life and this was an add-on that neither of us expected."
This may sound like an article about what I did for Carolyn and I guess, in most ways, it is. I think I learned a lot on the job and feel it may help someone reading this to learn what I learned. But as you'll see, it's really an article about a wonderful thing Carolyn did for me…something this sweet, bright, loving woman did for me, not long before she left this world. In fact, it was basically the last thing she ever did.
One of the umpteen wise things the palliative care folks said to me early on was, "It's important to keep reminding her that in spite of how ugly and painful things may get, you still love her. You cannot say that too often." I don't know this for a fact but I suspect that they also told Carolyn to remember to say that to me. With all the distractions of pain and the warring emotions within her, she occasionally forgot for a time but would always, eventually, remember. Only in hindsight am I fully understanding how vital that was to both of us; how it helped us both get through some pretty rough patches.
For at least a few hours each day, I tried to be at the nursing home — but not for too long because I couldn't pretend I didn't have work to do, along with things I had to do for my own well-being. Some days, well aware of this, she'd ask me to leave after an hour or three so she wouldn't feel I was neglecting my own needs.
Once, I foolishly spent so much of a day being with her and running errands that when I finally did go home, I had to stay up all night finishing a script. That probably led to the bad cold I came down with a day or two later and the cold meant I had to miss a few days of visits so I could recover and more importantly so I wouldn't pass germs on to her. She asked me to please, please never stay with her so much that it would happen again. It wasn't good for either of us for me to be out of commission.
Being there was easier when she had her full communicative abilities. As those withered, I would tell her something and halfway through, I'd realize she wasn't following me at all; that she was pretending to be getting it, just to be polite.
Occasionally, she'd ask me to retell one of her favorite jokes. In the twenty years I knew her, she must have asked for and enjoyed the one about the horny parrot a dozen times. It had never failed. Not long before she lost the ability to speak, she requested it and I gave it the greatest performance of my life. Meryl Streep at her Streepiest never wrung so much out of a dramatic scene. Sadly, all I got from Carolyn was a bit of forced laughter in all the wrong places and nothing at all on the punch line.
That was another moment when I knew the end was in sight. The horny parrot story had failed.
Entertaining her and carrying out her wishes were not difficult when she could talk and express what she was thinking. When she couldn't, it was frustrating for both of us. A few months earlier, she began filling notebooks with every thought, every observation, everything that happened. A nurse would come in to give her her morphine and Carolyn would write the time and dosage and sometimes even the nurse's name in the book. When she thought of something she needed — something my assistant John or I could do for her — it would go into the book.
Thank heavens, by the way, for John. He saved me hundreds of additional trips to the nursing home, to the pharmacy, to restaurants and markets and other stores. If you ever have to be The Advocate, seriously consider hiring The Co-Advocate. I hope for your sake you get one as dedicated and efficient as John Plunkett.
All those journals now sit in a box in my dining room. If I ever for some reason want to get terribly depressed so I begin bawling, I can page through them in chronological order and watch her handwriting deteriorate and her sentence structures slowly collapse. In the early ones, she sometimes did these cute little sketches, mostly of tiny animals, but they got progressively worse as she got progressively worse and about the time speech became difficult, she stopped doing them altogether. The drawings illustrating this article are from the earlier journals.
By this point, she had near-constant nurse attention but there were still certain things only I could do for her. The nurses, as efficient as they all were, weren't me, the guy she'd been with for twenty years, the person she was now counting on to take care of her apartment and her bank account and to make all the decisions she could no longer make for herself.
Early the week of March 27, I began to think I should cancel on WonderCon, where I was supposed to appear and host six panels over the following three-day weekend. The convention was "only" 31.5 miles away but the Anaheim Convention Center is right near Disneyland. At certain times of day, that could mean many hours battling traffic and tourists and Dwarfs who whistle while they cut you off.
I felt I shouldn't be that far from her, just in case. Then again, I also felt that to maintain my equilibrium in this situation, I needed to normalize my life somewhat. Obsessing on something 24/7 is a great way to lose vital objectivity about it and to over- (or even under-) dramatize things. Both can be detrimental.
So I had my obligations at WonderCon but I also didn't want her to think I was abandoning her or that signing Groos was more important than her welfare. I finally told her I was going to skip the con and when I did, she grabbed up the current notebook and wrote in big, bold letters, "NO!!! GO!!!!!"
She could then speak, though not for long and not without effort. She forced out the words to say she could manage without me and didn't want the guilt of denying me something I wanted and in some ways needed to do. Thursday night, I stopped in to see her for an hour, then drove down to Anaheim.
Friday, I did two panels and a few interviews and business meetings. I also spent a great deal of time on the phone to the nursing home and dispatching John to fetch items for her.
My first panel on Saturday morning was at 10:30 — Quick Draw!, which requires me to be as alert as I can possibly be, which is why we really shouldn't do it at 10:30 in the morning. I went to bed Friday night at 1 AM and got maybe fifteen minutes of shuteye before the phone rang and I knew it was the nursing home calling. It had to be. A nurse there told me something was very wrong with Carolyn and she wouldn't tell anyone about it…but they figured she'd tell me.
Within minutes, I was dressed and at the hotel valet stand, waiting for my car. It was then that I had one of the stupider thoughts I've ever had in a life filled to overflowing with stupid thoughts. It was: "At least there won't be much traffic on the 5 at this hour." It took an hour and forty-five minutes to drive the 31.5 miles on what was allegedly a freeway.
What was wrong with her I still don't know but whatever it was, it seemed to evaporate when she saw me walk into her room. The hospice nurse said this was not at all uncommon and suggested that once she got her 4 AM medication, she would probably go to sleep for many hours. I stayed until that happened and then once again thought one of the stupider things I've ever thought: "At least there won't be much traffic on the 5 at this hour."
If you learn nothing else from reading this piece, learn this: There is always much traffic on the 5 at any hour, especially near Disneyland. Always.
Going back at 4:15 AM, it was even worse than it had been going the other way at 1:30. That was partly due to construction narrowing southbound traffic to one lane, and partly due to a chain of pretty-serious car accidents scattered across that one lane. How they happened, I have no idea but so many collisions in such close proximity could not have been coincidence. Obviously, one caused another which caused another which caused another and so on.
We southbound drivers soon reached the stage of total immobilization. When we hadn't advanced a millimeter in over twenty minutes, some of us turned off our ignitions, got out of our cars and began wandering around, talking to one another. One gent who'd just been to a market was offering bottles of water around. I declined because, I said, it might be another hour or more before I got anywhere near a men's room or even an off-ramp that might lead to a men's room.
So there we were: Milling about on the Santa Ana Freeway at 5:30 in the morning, illuminated by construction work lights and the red flashing glares of emergency vehicles. It was very surreal, though not as bizarre as it might have been had the back-up occurred further to the South. Another 5-10 miles and we might have been able to see the spires and mountains of Disneyland against the night sky. Even without that, it felt damned weird.
A woman about my age started telling me, unasked, that she was coming back from taking her ex-husband into a hospital emergency room. He hadn't long to live and, she said, this would not be a huge tragedy in her life. She said, "I don't know why I even help him. He treated me like crap but he doesn't have anyone else. His next wife left him, too."
Just then, a Paramedic truck carrying one of the accident victims rolled past us, deliberately going the wrong way through a section of the freeway that had been cordoned off for construction. Through its rear window, we could kind of see the sad, bandaged patient strapped to a gurney. The woman I was standing with said, "I hope he has a person in his life as nice as I am."
Then she turned to me and referring to her "ex" said, "You know, when that son-of-a-bitch dies, I'm actually going to cry for him. I don't know why but I will. And the worst part of it is that he never once found a way to tell me he loved me, if he even did."
We talked for a while about caring for loved ones…or even unloved ones. Eventually, as the emergency vehicles departed one by one, the jam began to unjam and the cars that were stopped ahead of us began to loosen up and begin inching forward. We all returned to our vehicles, started our engines and began to speed down the 5 at a blistering ten-or-so miles per hour. Seizing on the next off-ramp I came to, I let my GPS lead me through surface streets, getting back to the hotel a little before 7 AM. The time I'd spent parked on the freeway was awful but the conversation I had with that woman was not without its value. After that, I kept thinking, "Well, at least when Carolyn dies, I'll know why I'm crying."
Back in my room, I figured I could doze until 9:30 and still get to Quick Draw! on time if I skipped Breakfast so I set an alarm on my phone. In the bleary haze of No Sleep though, Dumb ol' Mark forgot to unset the earlier alarm he'd set for 8:00…so when that went off, I was up and aware I was going to remain so. If you attended Quick Draw! that morning and I seemed a little "off," now you know why. I made one other commute to the nursing home before the con was over and then went back to L.A. earlier on Sunday than I otherwise would have. Both those visits were uneventful and Carolyn was sound asleep all the time I was there Sunday evening.
The following week, I didn't hear her say one word, though the hospice nurse told me she occasionally said my name when I wasn't there. When I was, she would write notes in the books and show them to me, getting very upset when, as happened more and more, I had to tell her I could not read whatever she had written. It was crystal clear to her but jibberish to me and she'd begin weeping because she knew the problem was not with me. Still, she kept on making her markings in the book.
She liked a certain kind of ballpoint pen — the Pentel R.S.V.P. fine point. We had a little package of them — some with blue-black ink, some with pure black and there were a few with red. On Thursday afternoon of her final week, the black pen she'd been using ran dry and she motioned for me to give her another. Only red was left so I handed her one, promising to get more black. Then I had to excuse myself for a while and I couldn't tell her why. Out in the patio, I had to meet with a man from the company that would provide cremation services when the time came. As I signed the contract and wrote out the check, my hand which is usually rock-steady quivered a bit. It had never occurred to me I might someday have to do this for this woman I loved.
But you do. As The Advocate, you find yourself doing all sorts of things that you never thought you'd have to do.
When I returned to her room, Carolyn was sound asleep and the notebook was open on her chest, like she'd dozed off while writing in it. A male nurse told me he'd given her the medication that always knocked her out for many hours, gently and for her own good. I went home, spent the rest of the day earning my living and didn't get back there until shortly after Midnight. Carolyn was still asleep, just as she was when I'd left her. The late shift hospice nurse had been there since 8 PM and she told me that Carolyn's breathing was normal, her oxygen levels were good…but she had not opened her eyes.
With me there, the nurse took the opportunity to step out for a few minutes. I said Carolyn's name a few times but there was no response. Then I took the book and before I closed it and put it on the bedside table, I looked to see if she'd written anything legible in it after I'd left her. What was on the latest pages was totally illegible and this very, very sad thought came over me like icy fluid flowing through my veins: All communication was over between me and this amazing, radiant woman I loved. She could no longer speak. She could no longer write. If she was going to sleep 24/7 until she died, that was not a bad thing because at least there would be no pain…but then she couldn't even gesture or tell me things with her lovely, expressive eyes. I was holding back tears and I didn't know why because there are moments when sobbing is wildly appropriate and this was certainly one of them.
And then I noticed something. If in reading this article you haven't cried up to this point and you don't want to start now, don't read this next part…
Carolyn had taken that red pen and gone through all the pages in that volume. Every place she had previously and legibly written "Mark," she'd drawn a shaky but unmistakable heart around my name.
The nurse wandered back in and I didn't say anything to her. I walked out of the room, down the hall and out onto the patio where I sat in the same chair I was in when I signed the contract twelve hours earlier for her ashes to be scattered at sea. The nursing home is up on the side of a hill in Silverlake and the patio has a spectacular view of the Hollywood area — the Hollywood sign, the Griffith Observatory and thousands of shimmering specks of light, both across the city and in the sky above. In the dead of night when it's deserted, it's a really fine place to just cry your eyes out.
When they called the following Sunday night to tell me it was all over, I shed only a few tears. That was because I'd shed so many on Thursday night after I found those red hearts in her journal. Those were, in effect, her last words.
I have not cried much since then except what I've been doing here since around when I started typing the paragraph above that began, "With me there, the nurse took the opportunity…" If you're crying now, please stop and clear your eyeballs because I've dragged you all this way to tell you something I think is important. This is the 24,401st message on this blog and it may be the most important…
There may come a day when you will have to be The Advocate for someone you love. Do not do it under duress because that just creates more problems. Do not do it because you think it will somehow get you in the will because it may not. Do it because you love that person and they just plain need you to be The Advocate. And you must be satisfied with no reward other than that knowing you did the right thing and that you did it reasonably well.
Of course, to get that last part, you have to actually do it reasonably well. That may mean accepting that it may not be easy or fun or painless. In fact, it may be none of those three things. You may have to change diapers, clean up vomit, wait up all night in emergency rooms, hide your tears, spend money and see things that are upsetting at the moment and hard to erase forever after.
You need to keep your perspective and your judgment and your command of logic, no matter how bad things get. You need to recover from the mistakes you make because this is not an easy job, being The Advocate, and you will make mistakes. I certainly did. It may also at times be a full-time job, even if you thought it was part-time when you took it on.
You may even have to write out a check for someone to handle the remains of someone you love. That kinda got to me and the man who brought the contracts over said, "That's when a lot of people suddenly accept that the person is actually going to die." I'd accepted that by then but my signing hand apparently hadn't. You need to take care of all the forms, all the legalities, whether it's a Durable Power of Attorney or an Advanced Medical Directive or even a Last Will and Testament, and there are a thousand other duties you need to do because someone has to do them and they won't get done unless you do them.
But the most important thing is that you need to tell the person that you love them. It is not enough to show them that by being there for them. You need to say it — clearly, often and sincerely — and you need to really mean it because you can't possibly be any good at being The Advocate if you don't.
That person may well recover, at least for a while. If so, great. Maybe they'll put all the illness or injury behind them and return to a normal life. Maybe they'll even someday be The Advocate for you. Carolyn was never going to make it out alive but even people who do usually need an Advocate. Those situations are generally simpler and less dramatic but they still follow the same basic rules, including that main one: Tell the patient that you love them. Say it over and over and over and mean it every damned time.
And if you ever are the patient who requires an Advocate, tell that person the same thing and mean it just as much. This may not easy because at some point, you may not be able to speak, you may not be able to write, you may not be able to express yourself in any of the usual ways. But for God's sake, find a way to tell them, even if all you can do is scrawl little ballpoint hearts around their name.
What a smart, wonderful woman she was. My parents aside, that may be the nicest thing anyone ever did for me.
And right then, I really needed someone to do something nice for me.
