It would appear that I’m not six-foot-tall and bullet-proof after all! I’m not looking for answers my friends, not here. What I am doing is sharing with you what my world looks like at the moment, in the hope that by writing it down I can gain more insight and clarity into something I have steadfastly avoided thinking about for most of my crazy chaotic life. I’m not throwing a pity-party here. I’ll indulge myself with the poor-poor-pitiful-me stuff when I lay in the dark and try vainly to sleep.
I have always bounced back. Something in me refuses to stay down for the count. I have never allowed myself to think differently. That changed nine days ago.
For the last six weeks my already poor health has taken a nose dive. Up until six weeks ago I could still manage to walk unassisted from my bedroom at the front of our cottage to the bathroom at the rear.
To venture outside has required a wheelchair for over three-years now, I had adjusted my mental attitude to that fact. Hell, I hated the loss of my independence, I fought against it … hard, but I had to accept that the wheelchair was now an integral part of my life. Like everything else in my crazy life to date my sense of humor rescued me from the depth of the depression that I was sinking into. My daughter and I managed to find ways to still get out and I was able to enjoy the fresh air and sunshine with my darling daughter steering from behind and my small grandson perched precariously on my lap, not to forget the picnic basket we always took with us.
I became hell on wheels, at least in my own fertile imagination.
The onset of winter is never a good time with my advanced C.O.P.D always wavering in the face of the cold. The winter here in our new location has been very severe, we Sydney dwellers are accustomed to the mildest of winters with minus degree temperatures unheard of.
The day I was admitted to hospital just over two-weeks ago it was -7 degrees Celsius, that’s around 19 degrees Fahrenheit. I had been struggling to breathe for over two weeks beforehand, needing to use the nebulizer far more than I should have. Until finally the worry on my daughter’s dear face registered with my stubborn refusal to accept the inevitable, and I asked her to call the Paramedics.
Long story short … Double pneumonia, which had sent my insulin dependent diabetes out of control. My health issues are many and complex, and four of them are individually life-threatening. I know that. I have known that for a very long time, but as long as no doctor sat me down and had ‘the’ talk with me I was able to convince myself and everyone else that Soooz would always bounce back. I always laughed it off. I can’t do that now. Nine days ago my doctor came into my room, I had been moved from ICU to a private room because my coughing was keeping the others in a shared room from resting.
He closed the door behind him and pulled a chair over to my bedside.
He looked weary and dispirited, and little wonder, he’d been on duty for seven-very-long days. I’d seen him early every morning when he’d done his rounds, all throughout the long days and late every night as he’d pop his head in and take a look at my chart before heading home to what would have only been very little sleep.
I did my usual, “So … what’s up, Doc?” I smiled at him. He gave me a tired grin.
“Suzanne, there is never an easy way to approach what I need to talk to you about.”
I looked at his face again and saw the sadness there. “Well, Doc, straight talking always works best for me. So okay, go ahead.”
“I need to talk to you about your wishes regarding resuscitation in the event that you go into arrest.” And there it was. There was no punch line.
I felt like I’d been kicked in the guts by a mule.
I struggled to stay in the moment, and not shut out his words because they were words I didn’t want to ever be asked.
“How close did we come?” I heard a voice ask, surprised that my vocal chords were working at all.
“I won’t lie to you. It was damned close, my dear. You need more information which I’ll have the chronic care team go over with you when you go home. I’ll arrange for them to come and do a home visit. Your daughter is your carer, yes?”
“Yes, yes she is. Are we talking full life-support here?”
“Full life support would be necessary, Suzanne. With all the possible problems associated with its implementation. We can go over the ramifications with you to help you make an informed decision. I’m so sorry, Suzanne. This is never a conversation that any doctor wants to have with his patient. I’ll answer any questions for you that I reasonably can, but keep in mind every situation presents us with a unique set of circumstances.”
I think that’s what he said.
My mind was already searching for ways to make all this go away.
It didn’t succeed.
He came across to the bed and squeezed my shoulder. “We’ll talk when you are ready to. You are still a long way from well, but certainly in better condition than when they brought you in. I’m ordering something to help you sleep. We’ll leave the oxygen on tonight.”
“I need to wean off it. I don’t want it at home. I’d rely on it too heavily.”
“Let’s discuss that further tomorrow, shall we? For now I think it best to keep the oxygen levels at an acceptable level to allow you to sleep. It is far better to make decisions when you are well rested, my dear.”
He stood at the door for a moment, then without saying anything more he nodded slowly and left the room.
I couldn’t think. Or more accurately I refused to think. I needed more information. The one thing that did keep pummeling at my head was the knowledge that IF I chose to be resuscitated and placed on life-support, it would then fall on my child to make the decision to turn off the machines if and when the doctors advised her to do so.
How in the name of all I hold dearest could I ever place her in that position? I know my girl, it would be something she’d never fully recover from.
I’ve had close friends with family members on life support, I’ve been with them on two occasions when they were called upon to make the decision to switch off the life-support keeping their loved ones alive.
I’ve seen the devastation of the guilt that overwhelmed them, and then held them tightly as they also expressed their relief that their loved one would suffer no more.
I didn’t sleep in spite of the medication, I lay there in the dark listening to the hiss of the oxygen as it helped me to breathe.
I had so many questions, and needed answers to them before I could even begin to contemplate discussing this with my daughter.
Two days later my doctor came by with a colleague and I asked if I could return home. He agreed, but hastened to tell me that the chronic-care-team would visit me at home to discuss my home care needs and answer any questions I needed to ask. All the follow up appointments were made; he shook my hand, wished me well, and I came home.
It’s been nine-days now. I made one attempt to discuss the current situation with my daughter and she responded as I knew she would. “You will absolutely be resuscitated, Momma Bear!” She then teared up and needed to leave the room.
I discussed it with her again, and she understands that this must be my decision. I understand that this must be my decision, and it will be made armed with the best information I have.
Today is Wednesday August 9th 2017. The Chronic-care-team will be here in an hour. My daughter will sit in until I ask the questions about life-support. I’ve asked her to leave the room then, and I will give her the Reader’s Digest version after the team have left.
They have been and gone and it was a productive hour of discussion. Home help is being offered to my daughter for a period of six-weeks. At the end of that time I should hopefully have improved sufficiently not to require her to be on constant alert all the time. She is a single mom raising a five-year-old boy, I’m so grateful that she will have help for a while.
The team were lovely dedicated folks, and I have an enormous amount of paperwork to read through before I can make the final call on the decision to either allow resuscitation and life-support … or decline it.
My child, will I think, rest a little easier tonight. She deserves to.
The road ahead is not going to be easy, I know that. I’m already leaning toward the do NOT resuscitate option, but I’ll make that call after I’ve become as well informed as I can be.
What I do know with absolute certainty is that if pure cussed pigheadedness has anything to do with me getting back on my feet, then I’ll do it. Spring is fast approaching, and then our glorious summer … the warmer weather will grant me hours sitting outside in the sunshine. I look forward to that.
One thing my daughter and I have discussed and agreed upon is what I’ll finally have on my gravestone. It’s not original but I know that it will make her smile each time she sees it. I want her to smile.
And what have I decided upon? Simply this … “She’s not going to take this lying down.”
I’ll give this my best shot, my friends. I have too much remaining that I have yet to achieve. Wish me luck and thank you so much for caring enough to stop by.