I keyed the various scales and checklists into the electronic file for the new assessments from today. After submitting the scales and checklists related to each person, I clicked the outcome boxes, all while devouring a healthy sandwich that I incongruously washed down with Diet Pepsi. I took that last five minutes before one o’clock to prepare for Bridie. I made sure there was a chair for Doug and I made sure my heart was ready. My phone rang and Jenn our program assistant said your client is here. Game face on.
When I met Bridie in the waiting room, she introduced me to Doug. She looked tense and he looked like he hadn’t slept in a month. Doug was a tall man, dwarfing me but clearly a solid match for his wife who was also on the tall side. To say he looked sad would be an extreme understatement. His sorrow filled the room. It was palpable. He was dressed in loose-fitting jeans and under his unzipped jacket I could see he wore only a tee shirt. So he was hardy. I drew in a deep breath to fortify myself. “C’mon back with me. Can I get you anything? Coffee or tea?”
“If you have some water that’s all I need” Doug said, nodding. “Nothing for me thanks” Bridie added. I was back in a jiffy with a drink for Doug. They sat through the canned orientation of my role and the role of the clinic. Bridie watched me, biting her top lip. Doug mostly looked down at his feet with intermittent nods in my direction. I started with the practicalities. “Doug, before we get started talking, there are a couple of forms that need signing. Let me explain them. First, because Bridie is the person registered to receive care, we need her permission to talk with you about anything that involves her.” I saw the look of disdain cross his face like a cloud. “It seems strange but that’s the way it works.” I added gently. “I know the two of you are in this together, Bridie was clear with me about that. But this is our policy, actually it is the law, because in some other situations couples are not so together as you two. Some people want to be in absolute control of their information. They may hide or limit some of the details for their partners and families. I’ve worked with other families where the client needed to talk about other aspects of his relationship with his wife that he didn’t want disclosed to her until he was ready. It sounds to me like that’s not the case with you two but this process is designed to protect the client, in this case Bridie.”
Doug looked to Bridie, his deep breath was audible and his lips pulled so tightly together they nearly disappeared in his face. She nodded to him and said gently “I have nothing to hide but I understand. “I also had to sign one of these for the Oncology Team to share my info with you but I didn’t think to tell you.” Bridie leaned forward from her perch at the end of the chair and scribbled her signature.
“The next form I need signed is almost the same. It allows our program to share information with St. Germaine Hospital and specifically the Oncology Team.” Again, her signature appeared. I signed as witness to both. “And the last form is for you Doug. Because it’s your insurance that’s covering some of the extended care, I need you to sign here indicating that you confirm your coverage”.
“Ya, I signed this one at the hospital too. For the social workers.” He signed on the correct line above my finger and again I was the witness.
“Thanks. I can’t guarantee that’s the end of the forms but I know that’s all for today” I tried to be light, smiling. They smiled back, politely. “So, let me start by saying I am so sorry about having to meet this way. You two have been delivered a horrible blow. I understand you have been fully briefed about the medical side of what has and will happen. From what I’ve seen in your file from St. Germaine Team well, you are in good hands. As I said at the beginning, my job here is to offer support and….”
“Help us deal with the worst” Bridie interrupted. All I could add was a nod.
“I’ll start.” Bridie sat up a little straighter, steeling herself. “I know how this will end.” Doug grimaced and looked away. “I hate that this is happening but I need to do it right. So much rides on it for me…”. Bridie swallowed hard and continued. “I am torn up Hattie. Since the diagnosis I’ve had to talk about this with so many people. Almost everyone I’ve spoken to is upset about the kids; some are upset about Doug but mostly because he has to deal with the kids when I’m gone.” She extended her hand in Doug’s direction, sensing that she knew he was about to interrupt. “Just hear me out. Hattie you are the first person to be interested in me first and what I am thinking and feeling. I’m touched by that…but I’m also uncomfortable with it. I feel guilty if I don’t put the kids and Doug first. I’ve thought a lot about some of the questions you asked me that first meeting, then asking me what I wanted in this process…I said I wanted to live and you said we could start there. That meant so much to me. There was no pity in it….”
Doug reached out to put his arm around his wife but the chair arrangement made it awkward so he wrapped his large hand around her knee. “I’m sorry Bird. I just don’t know what to do, or what to say.”
“Everything is new to you too, Baby. I think that’s why I need to talk with Hattie. There are things I can’t say to anyone else. Well, that’s not exactly right; there are things I don’t want to say to anyone else. I don’t want to tell you how sad I am…” she was looking directly at her husband. “I don’t want the kids to think I am falling apart, even though I feel like I might explode any minute. I don’t want to tell you I am angry and I don’t want people to know how afraid I am.” Her last words trailed off and ended in a sharp inspiration of breath that nearly swallowed them. “These are the reasons I need to…just for the next little while…believe that I am going to live”.
I was thinking hard about where to go with this but I had nothing to say right then. I let the comment sit quietly between us all. Doug’s hand was imperceptibly kneading Bridie’s knee. Her hand was on top of his, her thumb very slowly drawing a circle around his knuckle. I was distracted by the thought: how well they knew each other’s hands. Bridie filled the space eventually “I read some of the papers they gave me at St. Germaine and it sounds like I’m in denial but I am most certainly not in denial. I know exactly how this will end. I am aware of it every minute of every day…and night. I am holding myself together so tight I feel like I might crack but I have to do it… I have to do it this way”.
“…of course we want Bridie to live!” Doug is upset. He’s mad. I worry he’s probably mad at me but he expands. “I’m not mad at you” he said looking up at me but they underlying glare remained. “I’m just mad…and thinking for a minute…pretending…you aren’t going to die isn’t helping me. I want it to be true so bad….Bird, I want it to be true so bad…”. Doug’s head and shoulders sagged in resignation. Bridie squeezed the hand he still had wrapped around her knee. He looked up. She turned her head to meet his eyes but made no sound.
“Let me back this up a little”. I leaned toward them, elbows on my knees. Doug, I apologize. In my work it’s important to appreciate how the person understands his or her own situation. Its important for me to know how they want to work with, or through their situation. It’s important for me to hear what the person wants, or what they hope to learn, or come out of a situation with. Sometimes the person doesn’t know these answers and we talk that through it all to find a direction. When I asked Bridie what she wanted, she was pretty clear. She wants to live. So that is where we start. I didn’t mean it to sound like we could stop this train from roaring down the track. It’s a starting point that shows me how much she loves you and her kids, how she doesn’t want to see you hurting. How much she knows she will lose…she will lose all of her life.” I paused to take two deep breaths, as unobtrusively as possible then before I lost my nerve. “Bridie’s wish shines a light to show where and how I support her”.
I sat in the excruciatingly long silence. Try it sometime. Even three minutes feels like forever, especially when emotion is thick in the air. With a sharp, swallowed sob, Bridie offered “all of the above.” Tears soaked her stony quiet cheeks.
She turned and looked straight at her husband. “Doug, I want to make this last bite of life last as long as I can. I know I will get sick, so I need to do what I can now. I want to think about how my kids will remember me. They will only have me in their memories. How can I stay important to them? I want to stay alive for them. I want to stay alive for you too…” and she reached over to wipe away a tear before it splashed from his chin “but you have lots of memories of me. The kids don’t have enough”.
“I get it…I get it now”. Doug looked over to me “I get it Hattie. I don’t want to but I get it. I want to help. I want to be a part of this. Keeping Bird alive is my duty for my kids…now that we all seem to know what that means…”
“I don’t know how much the oncology team has explained, or what information they have provided you. It sounds like they have given you some about the stages of death and dying…” it felt both awkward and a relief to say those words out loud. “I don’t know if they have given you some timelines around how physically able you will be over time; you know, how to manage your energy – especially with three little ones. We can spend a bit of time sketching out what kinds of things you want to do, or get done and see if we can build a schedule that will match your energy?”
“That’s a good idea. I already feel worn out early in the afternoon, that’s not like me. But I lay down with Lynne and even if I don’t sleep, I get to look at her while she does”.
“I have a few more practical questions. Doug what is your situation like? Are you able to take time off work?” I knew from the insurance forms that Doug worked in a car manufacturing factory, on the line.
“I have applied to be off, but….”
“Any leave right now is without pay” Bridie interjected. “Besides the financial hit, right now I want to keep our routines as close to normal as possible, whatever that is.” She managed a small smile. “I also think….we need…I would prefer that Doug take time off later.” Her voice cracked just a hair as she wrestled with her understanding of ‘later’ but she continued quickly leaving no space for debate. “His sister Dianne lives nearby and she can come and help around the house. Jamie is in school full days now and Joey is half days. They play well together most the time at home. Lynne needs a bit more but Di can help me for now”. She turned to Doug “Baby, I want you with me but I don’t want to bankrupt our family. Work now while you can because I think we’ll need you later…”. Doug’s face was set in stone; I didn’t know him well enough to know what he might be thinking, but this was clearly the way Bridie saw it going down.
“So, it sounds like for now the support is in place for you to manage your energy Bridie and I suppose that also means you can manage the pain. She nodded. And it sounds like you have someone to get you to and support you in your appointments. Another nod. Just so you know, the St. Germaine oncology team has transportation available. There are drivers who will take you, you and Doug, or the whole family to your appointments, and any appointments for the kids. You don’t have to drive yourself”.
“I didn’t know that” Doug said looking up. That would be great because I find it hard to shut off what I’m thinking when I drive home from there”.
We spent some time arranging the next meeting. It would be just with Bridie, since Doug was returning to work in two days. I like to leave some of these more neutral tasks until the end of a meeting because it gives some transition time for people to re-compose before they walk back out through the waiting room. But I also had a little trick up my sleeve “Thank you both for being so open in this conversation. I absolutely appreciate that this is a devastating situation for your family. I have a sense you know we can’t fix it but we can manage it so you two are in control of how it happens. I am here to help you through. You can call me anytime; if you leave me a message my stats say I am 96% sure to get back to you the same business day”. Small, polite smiles recognized my lame attempt at levity. “Here’s my card”. As we stood to leave I added: “One last thing. I know this has been a very emotional meeting. If you don’t feel like you can face anyone else right now, I can get you to the back door to the parking lot with only a very slight risk of running into one other person. Bridie, you know the way – you took this exit the other night”.
They looked at each other then nodded “Thanks”. Doug took the reins. “We’ll take you up on the escape route, I appreciate it. Our goal the next time will be the front door”. And with that, he gently folded Bridie within his arm and I led them around the back hallway and out the door. Doug’s arm sheltered his wife as they walked slowly to their car.