I've been reading facebook about the story of the young woman who has a terminal glioblastoma and is planning her death on Nov 1st. I am also reading the opinions of what she should or shouldn't do. As a person who works every day with people who are facing death, I often wonder what I would do or will do when my diagnosis comes. I think, at times, I know what I would do but when faced with it...who knows. I always think of the scene in "Grumpy Old Men" when they find out that their dear friend dropped dead...they called him a "lucky bastard."
Don't we all want to just go quick and painlessly...maybe having our affairs in order, not knowing when and doing what we love? But then, the folks that pass away on vacation...that isn't the perfect way either.
Yesterday, I got to be present with a family that chose to live life with limited time as a profound gift. Very rarely am I present when a person dies, but get the call after they are gone. Yesterday was a different story...
I got a call the night before at 9 pm that the patient had taken a turn for the worse. I decided to go to the house and check on them and see how they were doing and if I could do anything to make them more comfortable as the end of the journey was finally here.
Let me back up. This patient was admitted to hospice care over the summer with terminal diagnosis. He had learned of his fate about 3 years ago and chose to continue life normally as long as they could. They would not go to the hospital but choose home hospice care when the time came. Of course this family was devastated but decided that they were going to do whatever it took to make it through this tragedy stronger in their love for each other than ever. Sounds like a pipe dream, huh? The most stressful time in life when you are losing your best friend and you are going to keep it together...I agreed to be part of the story in any way possible.
They had an amazing summer with trips and friends and time with family. Now, it wasn't easy to go on trips, or have friends over as this patient was bed bound and not going anywhere without help and brute strength. But the family did it. It was a great summer.
About three weeks ago, there was a shift in his health and he began to decline. The family gathered closer and friends came and they sat in his room and partied. They enjoyed every minute of the time they had. Then it was Tuesday night. He had become less responsive and less aware and caring less about what was going on. In our business, we call it "turning inward" and it is a sure sign that the person is "getting ready" to leave us. By Tuesday night, he was much less responsive and showing other signs...
I walked into the house to find the whole family in the bedroom. They were in chairs pushed up against the bed, sitting on the bed and touching the patient. He was fairly comfortable and I changed a few things, changed his position, and took his vital signs. He was definitely changing and from my experience told them it was going to be hours but he was dying.
Because this family was who they were and because they decided early on in his illness that they were going to do whatever it takes to love him and each other through it, they sprung into action. They gathered in closer and hunkered down for the night. About 1:30 in the morning, I left and told them to call me. They didn't call me. I stopped in at7:30 the next morning to find them sleeping all around him peacefully holding him close. The peace and quiet of that moment helped me make it through the day.
I went about my day, knowing I would be getting a call but I didn't. I showed up around noon to find them all there, sitting with him and telling stories, eating lunch and laughing through the tears that were rolling down their cheeks.
They family told stories, of how they met, of how the kids were born, of the travels of their lives together. They cried when they told the story of his diagnosis and of the family struggle to cope with a terminal illness. They told of how lucky they were to have each other and how much they loved their dad...and the hours passed. He was at the center of the stories and the center of the group with each family member touching him and stroking him and whispering into his ear something when it came to them. He was peaceful and quiet but with us.
As we talked, we began to notice he was leaving us, with quieter breathing and a serenity that was taking over his face. One by one, each family member moved closer to him, some on their knees by the bed, some on the bed, holding his hands and his feet and kissing him goodbye. Through the tears that could not be held much longer, they told him how much they loved him and that they would take care of each other and he could go. As he took his last breath, I watched his bride of 40 years tell him that she was so thankful for him...her love and her best friend. As much as the hours sitting felt like time stood still, he took his last breath and was gone. Slowly, I climbed up on the bed with the wife and put my stethoscope on his chest and through tears I said, "He's gone."
We all sat there stunned, relieved and sad. The room was quiet with a resigned peace...probably because they had all thought about this moment, knowing it was coming but not believing it. They hugged and kissed and cried while I went about my work. Before I knew it, they were all out on the porch, holding each other close and talking about how they are going to go on.
When he was gone from the house, I went out and I thanked them for the honor of caring for him and them...for such a loving family. They inspired me yesterday as they did the hard work of living for 3 years knowing and then finished what they had promised and did it with such grace and dignity for their dad. They were committed to caring for him and they did...with a holy love, a sacred love that comes from suffering. Not so much from physical pain and suffering , but the suffering of wondering what's next, the knowing the end is near and pushing that out of your mind and making the most of the hours and minutes that are right in front of you.
Once again, I called Jim to tell him I had lost another one. He asked me how I was and the tears flowed...for the loss but also for the beauty of life in all forms. For the strength of love, of commitment and the love that I saw with each last touch and last kiss.
To know that I helped that family follow through on the plan...to do whatever it took to love each other and the patient through the illness to the end of life...is a gift to me and gives me the strength to knock on the next door of a family that needs some support for their plan.
I think I can understand not wanting to go through all the pain and sadness that comes with limited time...and to be so young and have to leave this earth. I understand that. But, there is joy in suffering and I know there is much love...that becomes sacred and holy love.
And that kind of love often comes when it can't be taken for granted...when time is limited and the end is near.
So I pray for Brittany, the woman with the terminal illness. I pray for peace and sacred love while she is still here with the living. Then, whatever she chooses, I pray for an easy transition and peace and comfort for her family.
We'll tawk tomorrow,
I love you all,