“I ain’t afraid.”
It was a phrase often touted by my brother, after a few drinks and when the subject of death or dying came up. On the surface, he sounded pretty convincing, but I always thought (or perhaps imagined) I heard just a hint of doubt, right there at the end… A slight change in the volume; or the tone of his voice.
I was never sure if he was trying to convince me, himself, or God.
We hadn’t talked a lot about death, the act of dying, or what our preferences were; but having gone through it with our Mom, Dad and then (shockingly) with our brother… we had seen enough of it to know what each of us would want, and more importantly, what each of us would not want, when our time came.
I traveled to Massachusetts, because I thought he was becoming disturbingly forgetful and slightly disorientated. Our phone calls had become few and far between; always me calling and him, and him never answering, or returning my calls. And when we did talk, he was distant (which wasn’t like him), he just wasn’t “himself.”
I was worried that he wasn’t taking good care of himself, i.e. not eating well, not sleeping enough, smoking and drinking too much, etc. I figured, if I went to Worcester, the best case scenario might be, that he’d be given a clean “bill of health,” and I’d be able to assist with organising some “helpers,” to come in, a few times a week; to cook, clean, do laundry, etc. The worst case scenario could be, that he did have some “real” memory issues (or maybe the lung cancer had metastasised to his brain) and we’d need to get him admitted into an assisted living facility.
Either way, I figured I’d be able to help and I’d be back home in maybe 2-3 weeks. I wanted him to see some doctors, get checked out and get some advice and direction (from perhaps a lawyer, Social Services, the Vietnam Veterans Administration) on next steps and possible options…. and then, we’d go from there.
I also hoped I could assist get the ball rolling on helping him secure some of the equity he had in his (jointly) owed home, to pay for whatever level of care he was going to need going forward; and that I’d be able to get everything set up before I went back home.
One thing for sure, I needed to know (in my heart of hearts) that he was safe and being well taken care of, before I crossed the pond again.
Neither one of us expected to hear the lung cancer was back.
Yeah, that hit us both, like a ton of bricks. Although, there was some good news too, as it had NOT metastasised! It was contained in a teeny, tiny little spot, in the same lung that it was found in, 3 years earlier. It was not causing any immediate issues, and the Oncologist felt it could be controlled with radiation, and kept under control for at least a few years.
Still… Tommy took the news badly, as he lit another cigarette.
Over the next couple of weeks there were numerous doctor’s appointments, scans, blood tests, consultations and very difficult discussions about the type and level of “help,” he was going to need, after I went back home.
He thought, none. I knew, a lot.
There were conversations with lawyers, doctors, people from Social Services and the VA; and there were several very awkward discussions with his estranged wife (from whom he had been separated, but never divorced, 11 years prior) regarding his half of (and the availability of ) the equity in their home, in which she lived.
Two weeks in Worcester, turned into 3, and then 4; 5 and then 6. His medical issues were becoming the least of our worries. He became depressed and despondent. He was sleeping more, eating less and not at all interested in any communications, much less those those related to his future, his care or living arrangements.
It became painfully obvious, he could not (or would not) take care of himself, after I left.
I was alone, tired, scared and had no idea what I was doing. I felt like Samson going up against numerous giants. There was the Legal Goliath, the Medical System Goliath, the Social Services/Government/VA Goliath… and the Sister-in-law Goliath. It was never ending.
Without all the gory details, my brother wasn’t thinking clearly. He was acting erratic and at times, talking a little crazy… but I quickly learned that unless someone in “authority,'” officially says that you’re “crazy,” or they officially deem you “incompetent,” you are still the master of your destiny, and you able to make ALL of your own decisions; no matter how bad or disastrous those decisions might be. Sounds crazy, but totally TRUE.
And please, don’t get me wrong…. I do not think it’s bad thing that you cannot make someone do something that they do not want to do (even if they should do it, because it’s in their own best interest) …but man does it make doing the right thing, fucking difficult!
Week seven saw Tommy’s health deteriorate even more, although no doctor could explain to me, why this was happening. There was no medical reason for him to be or feel so unwell.
He spent more and more time in bed and I spent more and more time, freaking out.
Why wouldn’t I? I was alone, away from my home, staying in a hotel; hardly eating, having trouble sleeping, scared to death of the future and stuck in what had become a inescapable maze of bureaucratic bullshit.
It was March, it was cold, it was dark and yes it was snowing, a lot.
Tommy hadn’t been out of bed in two days… he wasn’t eating, drinking, or taking any of his meds; he was now 100% uncommunicative. It was Thursday, I panicked and called the Paramedics. It took almost an hour of begging and pleading with him (along with buckets of tears) to convince him to go to the hospital.
To make an already long story a bit shorter; the A&E doctor made and executive decision and admitted him, against his will. He was dehydrated. disoriented, having trouble breathing and now needed medical intervention.
I cried my eyes out, as they wheeled him to the Ward, but at the same time, breathed a sigh of relief, because I knew they’d fix him. They’d get him back to being “Tommy.” Get him back to being “my big brother.”
Alarmingly, he was admitted to the same Ward, where both my Mother and my brother Charlie had died. He was just a few doors down from each of the rooms, where they had taken their last breaths… *sigh* No matter, we can do this!
I kept telling myself he was in right place and they’d make him well!
The first few days were rough; he was feeling like crap and he was mad as hell! He wanted OUT of there, but his lungs were compromised, he was having difficulty breathing and he was weak.
On his third or forth day in the hospital, things seemed to be at an all time low… On this particular day, he had been sleeping for over 20 hours and the medical team were concerned; they could not rouse him. Even performing an “arterial stick,” to check blood gases (which I was led to believe is painful) didn’t disturb him. I was concerned that there was no explanation for this “comatose” state.
…but then, all of a sudden, and for no known reason, he woke up!
It was almost noon, when he opened his eyes, looked around the room and he began commenting on how “beautiful” everything was! What a “beautiful” day it was outside,” and “Wow, look at that sky, how beautiful!!!!” He held my hand and pulled me close and said, “I love you sweetheart.” (He always called me Sweetheart, when he was in a good mood and feeling loving) He told me how “beautiful” I looked and asked if I had decorated his room! He kept looking around saying how amazing everything looked!
He was in the most extraordinary state; one of pure, unadulterated joy and elation.
Like a blind person seeing the world for the first time, he was in awe of everyone and everything. He was happy, hungry, energetic… He mentioned that he had never felt like “this” before…. You could see he felt good, strong and he had the most incredible, positive, loving, grateful attitude towards life, people and just everything!
It was the most amazing thing I had ever been witness to. It brought tears to my eyes at the time, along with a lot of confusion! (I now know, this phenomena is called Terminal Lucidity)
His epiphany, was short lived….
The next day his health (and his upbeat, positive, joyous state of mind) had deteriorated; he was again sleeping deeply…. The doctors reported pockets of pneumonia were causing his breathing difficulties and ordered more meds and breathing treatments. He wasn’t eating or drinking again and he wanted only to sleep.
As fate would have it, the day before this downward turn, his “Medical Proxy” had been transferred, from his wife, to me. She and I didn’t agree on much, but we did agree that “if” hard decisions had to be made (Which they would not, because he was going to be fine!) she was probably not the best person to be making them. Not because she hated or disliked him, but because she still loved him and would never let him go.
On this day, I had seen the lawyer and picked up all of the official paperwork, which once signed by him, would give me “Power of Attorney,” over all of his affairs. It was on this day, his health took a turn.
I had left the lawyer’s office feeling conflicted, but resigned to the fact that it was in my brother’s best interest, for me to take control of his affairs. He was not able to (nor did he want to) think about or make decisions concerning his living arrangements, his finances, his future, his life… Someone needed to take control and do what was in HIS best interest.
I could do that. It would be my honour to do that; especially after all the times he had taken care of me.
Sitting in the Outback Steakhouse, in Auburn; drinking a glass of shiraz and playing with my steak, more than eating it… my phone rang. It was Tommy’s doctor, telling me that he had taken a turn for the worse. Even though they had him on antibiotics, and had increased his oxygen they could not control the pockets of pneumonia that were compromising his lungs and he was struggling to breath.
He was deteriorating and she (the team’s lead doctor) sounded concerned about his situation.
I felt sick.
She had called, because they needed my permission (as his Medical Proxy) to admit him to the ICU (Intensive Care Unit) and put him on a machine that would help him breath; not a ventilator, but respirator, I think it was. I knew that in intensive care they would take whatever measures they felt medically necessary, to treat him and keep him alive as long as possible.
I remember saying the word, like it was yesterday. I said it loudly, clearly and with the confidence of Alexander the Great, going into battle. I did not hesitate, or attempt to justify my response. I said I was on my way, and they were not to move him.
The die had been cast.
After I arrived, and an in-depth and conversation with the doctor had taken place, it was decided that Tommy would stay where he was and receive “comfort measures.”
There were many reasons for this decision, that I won’t get into; nor will I try to convince you that my reasoning was sound, valid or just.
You’ll just have to trust me, or not. It’s entirely up to you and really, I couldn’t care less.
Two days later… my brother, was dead.
He died on a Saturday morning, with me sitting in a chair next to him, stroking his back, and drinking a cup of Dunkin’ Donut coffee; as he comfortably breathed in, and out; in, and out… out and… *silence*
The die had been indeed been cast. I had made a decision that ultimately killed my brother.
In all his years of trying, he couldn’t do it.
Vietnam couldn’t do it
Rheumatic fever couldn’t do it.
The numerous (and horrible) automobile accidents, couldn’t do it.
The alcohol abuse couldn’t do it.
Having his heart broken, couldn’t do it.
Nope, it was me… his adoring, loving, caring, loyal, little baby sister; I had successfully killed him.
Please know that not a day goes by (and it’s been 655 days) that I don’t question that decision and I wonder if he hates me for it. I wonder if he loves me for it. Perhaps he’s ambivalent towards it; because he’s gone onto bigger and better things and he accepts that, that journey had to come to a logical close, before a new and brighter journey could begin.
Yup, that’s what I choose to believe…
It has taken me 4+ days to write, edit and fine tune this bog post… much longer than most of them take. The process was incredibly draining and unsettling. It dredged up memories and feelings that I had long since forgotten about. It reminded me how much I loved (love) my brother and that losing him hurt… it hurt badly, but losing him to a decision I made, cut deep and that wound will never heal.