Yesterday I spent most of the day with couples. Couples that have been together for a long time. It is always a learning experience for me to watch as they negotiate this time of life. The time that when we are just "talking", we refer to it as "some day" but never think that the "some day" will come.
As I've written before, losing a partner...maybe the love of your life or a partner in crime is never easy. Even when you are watching that partner change before your eyes due to treatment or pain or sadness due to the circumstances. Yeah, I know when we are really close to the end, most folks pray for a quick, peaceful ending but not until the cold, hard reality hits .
I sat on the couch and leaned forward for the questions. These are a set of questions I ask at every visit. They become the basis for our talks and the basis for the persons care. Today, the questions went fast because the symptoms are under control. "Hurting anywhere?" "No"..."Are you still taking the same medication dose that we switched you to last week?" "Yeah"...and "that's taking care of the pain?" and we go on from there.
My patient is comfortable and doing what she can to make each day it's best. For some folks, they have to tell the story of treatment and how it went and what she felt during it again and again. At this visit, she tells me that she was blindsided by what she went through and was really surprised that the treatment didn't work. When that conversation comes up, and it frequently does, it's interesting to hear the caregivers take on it. Seems to me that when a patient goes to hear the diagnosis and the treatment options, they hear only half of the information...the parts that talk about how this or that treatment is going to work and although there isn't a cure, they have a good chance. The caregiver, on the other hand, frequently hears that there is no cure and the odds...the numbers that the doctor gives for the treatment chosen, aren't great. For a lot of couples, it is the dance of love...letting the person make choices and trying to be a cheerleader although they know what they heard.
I notice that my patient got really quiet while the caregiver was telling the "odds" and "cure" story. I watch her face as he talks of the ICU hospital trips, the symptoms and the loss of control. After he is done talking about that stuff, I quietly ask her what she was thinking...not demanding an answer but wondering if she wants to talk. To that question, she replies, " I always thought he'd go first". A quiet settled on the room and the caregiver agreed after wiping tears from his eyes. "Yeah" he said," we talked about it and the numbers shake out that the husband outlives the wife and she is left. That's how we always planned things, money, wills, everything as we got older. I thought she would be taking care of me."
For me, that is one of those moments when I swallow hard and turn my head. I don't want them to see me cry because it is such a beautiful moment for a couple to see the deep devotion they have for each other...even if they never thought they had it. I looked over at my patient and asked, "did you think he was going to take such good care of you" to which she replied, "no." It wasn't a mean "no" or a "no" that had years of resentment tied to it. It was a pure, sweet surprise that this man was going to do whatever it takes to make his wife of 45 years comfortable and know that she was loved and cherished.
I looked across the room at the husband and told him how sometimes spouses cannot do this and we figure out other ways to care for their loved ones. He was surprised and said he may need help, but they weren't going anywhere. They took comfort in being in their home, with the animals and the belongings that they have together over 45 years...the pictures of memories and love shared during their time together. "I wouldn't have it any other way" he said and looked over at her. They exchanged that knowing glance of a life weaved together for so many years that is changing. We talked more of the gift of being home and being together and being able to do whatever they want that day. My patient was taking all of this in and watching her husband as he talked of the upcoming changes and his plans to make things easier for her. I could see her eyes change to admire his thoughts and caring.
When I finished and began to say goodbye, I reminded them of how lucky I was to be part of this journey. I talked of things that happen during this time that are unexpected and comforting even though it is hard to see that. The patient nodded her head and winked knowing what I meant. That while time is short, this patient is going to be loved so well and so completely until it is not an option. Then, this husband will rest in the knowledge that he did everything right to care for his partner of 45 years.
When my heart gets tired and I wonder why I keep doing this kind of nursing, a day like this happens and makes it crystal clear. We make plans every day on how things are going to go...and then they don't. We have to change our plans mid-living and go from there, doing the best we can. Thankfully, I get to see that every day.
So remember, plan well, hope for the best and when the plans change drastically...just love.
We'll tawk tomorrow,
I love you all,