Trip is a man with 3 first names as his moniker. A veteran. A proud man. He’s coming to the end of his battle with COPD.
He’s as skinny as a rail as the fight to breathe is stripping the fat from his body. He’s in tremendous pain from tumors in his lungs pressing on his heart and lungs. And he’s spending every day waiting to die when it’s not yet his time.
The man has lost well over 60 pounds on his 6 foot 2 frame, but at 149 pounds he’s still getting up and driving and being ornery with his wife.
We have a group chat, a bunch of us from the COPD site, and Trip is expecting that his scans on Friday to see what’s going on with his heart and lungs will offer new hope for surgery. Even though he’s been told that he’s too frail to operate on. Even though they have been telling him for months that his only hope for pain management is hospice.
He is not going to go quietly into that everlasting night.
Instead, he’s badgering the Docs for a timeline as to when he will die, even as the rest of us counsel him that it’s not yet his time.
(In general, we find that dying is pretty predictable. Folks have more exacerbations, they sleep more. They stop caring about the world and go to bed and don’t get up. Like my conversation with B, the boat captain, our team conversations are about dealing with our fears and finding a way to accept that we are dying. Just not today. Maybe not tomorrow. There is no way anyone can give a person a timeline. There is no date stamp on our feet).
I guess this is why I keep planning trips. As long as I have something to look forward to, maybe my time won’t come any time soon, too.
We’ve all been there. Wanting the waiting to be over. Wanting to know “when”. It’s an unanswerable question as no one knows until one starts sleeping all day, being hard to rouse and stops eating, that their time is nearer.
We go out with a nap, and very rarely with a heart attack or during an exacerbation. If we’re lucky, hospice respects our wish to end our struggles and helps us along with easy access to morphine to the point where we just stop breathing and aren’t in pain any more.
That’s how it was for my Mom. That’s how it was for my Big Brother.
In Mom’s case, she didn’t die when she thought she was going to. I was pestering my brother and sister long distance, and telling them to go lay eyes on her, that she wasn’t answering the phone, and I was 3,000 miles away and knowing that she wasn’t doing well.
Baby Sis found her. Found her and called the ambulance and cleaned up the mess and got her into the hospital. Only to lie to me for 9 days straight about what was going on, until the night that she called and said Mom was dying and I needed to be on the plane immediately. Day 8. 35 pounds lighter, because Mom wouldn’t eat the food and had mentally checked out while trapped in the hospital.
Baby Sis accused me of willing our Mother to live. That I was keeping Mom alive against her will. Nothing that was said to the contrary was listened to, and I had to deal with Baby Sis’s railing against fate that Mom was in limbo and wasn’t dying fast enough.
So, after 3 days at home and fighting to get Mom’s wishes respected, I got her released from the hospital and brought home to die. But, Mom perked up. She thrived under Hospice care, and she had another, final, year with us before saying her final good byes.
We had a final game of scrabble on a cold and snowy Friday as I stayed at home with her, and she had a final meal (but for the life of me, I can’t recall what it was – just that she enjoyed it). Mom went to sleep on the couch on Friday night after our last game of Scrabble, and then she was occupied with her dreams and visitors in her memory (or, maybe it was God and his angels – I’ll never be able to say). I tried to rouse her once or twice to get up and use the bathroom, to eat, to go to her own bed, but she wouldn’t have any of it.
So, I slept in a chair by her side throughout the weekend, trying to ensure that she didn’t fall off the couch in her restlessness, and not wanting to leave her alone as something inside me just said that it was her time.
Monday morning dawned sunny and warm, with the recent snowfall melting, and my Big Brother came by again to check on her, and helped the hospice nurse move Mom into her bed.
With the sun shining on her as she lay in her bed, Mom passed peacefully in her sleep by 10am that morning.
In Big Brother’s case, which happened 6 short years after Mom’s death, he did everything he could to prepare his boys for adulthood. His youngest had just completed his first year of college, and his oldest had just graduated on May 22, 2011.
I was back on the West Coast dealing with Las Vegas Auntie’s drama, and on the verge of homelessness from trying to care for her while getting her rehabbed and back on her feet. I saw my brother at his oldest son’s graduation, and then he’d taken to his bed and was gone by June 1, 2011. Peacefully, at home, in his favorite chair with all of us in attendance.
While I, too, face my own mortality, and know that they had a general forecast of 3-5 years for my stage of the disease when I stopped working, I have since passed the 3 year mark and am still doing well.
Will I make it to year 5? Year 10? No one knows as long as I stay stable. So, I keep busy and try to be of comfort to others of my kind who are afraid of dying and want to know when they will be released from their worries. It’s hard to say to them that they won’t have a date with infinity until they no longer care about life, but that’s what I’ve found to be the case. I am not an expert, and I don’t want to be a caregiver or be dependent, but the reality is that life continues long after we’re tired of living.
So, rather than spending my time fighting with loved ones, I choose to go this road alone until my time comes, too. Hopefully, my money will last and I will find a way to enjoy life despite any fears or worries.