Yes, I know it's been a while. I have been dry...dried up and withering...trying to figure out things that are "unfigurable" and
asking why about things that have no answers. Needless to say, I have spent a lot of the last three months in my head.
Let's just say that me being in my head is not a good thing. I compare, I fret, I wish things were different or wish things were the way they used to be. In a few words, I stop living in the now....
I must admit, I do not do change well. I do love a good schedule and I love a good routine. I am sure when I was younger and busy, I gritched and moaned about how busy I was and how I wish I had some time for myself...some free time. You can ask anyone you know who knew me then...
So now, I have time. I mean, I have time to do the things I didn't have time for before. I can clean my house, get laundry done and be at home. Now, I wish I was cheering at a band competition or a baseball or soccer game instead of folding the clothes just right. Funny how that goes, really.
Last week, I had the distinct honor of being knocked off my feet and told to get out of my head while listening to a patient explain her "goals of care". The goals of care are a fancy way of saying what a patient wants to do with the time that is left. It is what means the most to a person's heart when they know they are near the end.
I sat in the chair by her bed and watched her as she explained what she has been through. Almost a year ago, it started with a little cough that didn't go away...nagging and nagging for a few months. She went to the doctor to get antibiotics for the cough and even after that, it was relentless. Chest x-rays and MRI's and PET scans later, she had the answer. The big C...Cancer. It sounded to me that she handled it well, continued to work and went to chemotherapy for almost a year. They told her that there wasn't a cure to be had but there was the promise of more time if she did what they told her to do. So, she did.
As with most of the people I have the honor of caring for, she had a circle of friends that drove her, cooked for her and cleaned her house when she couldn't do it for one reason or another. She was uncomfortable with all the help, the love and the concern that she got because it was usually her doing that for her friends. I told her that I could understand. I think if we take a minute, we would all rather be the one doing and loving than the one that is fighting for more time.
So here's the rub...what she really wants to be able to do now is so simple. She wants to straighten up her home, make a nice dinner and sit with her family and enjoy the meal. She wants the time back that she had a few years ago. Because she is near the end of her time, and she is so tired, going to the table takes every ounce of energy, so she doesn't get to do that much if at all. As she was telling me this, she teared up. She just wants a little more time to do what we all used to do when we had kids to tend to and we were mothering. I listened as she told me how she used to straighten up the house and put things in their place, figure out dinner for the family and make sure she had all the food in the house. Then, she would put dinner on and welcome her family home. Dinner would be ready and she would sit with them, talk with them and clean up after dinner.
Sounds like a pretty simple routine that went on nightly in that home. But now, nothing is simple and nothing is easy. Now it's hard to get out of bed because she is so tired and when she is really awake, she feels the pain that the cancer causes. She has to take her pain medication and then she wants to rest because of the fatigue that cancer causes. Don't get me wrong, she is not complaining as much as remembering how precious those nights were.
I told her I could relate and tears sprang to my eyes. I too, remember those evenings when I made a favorite dish for dinner and sat with my family and listened to their day. I looked away because I didn't want her to see my tenderness I felt that surrounded her realization.
You see, I miss that so much now that it is just Jim and I. When I am in my head, I wish I had that time back to imprint it in my brain and feel the feelings and smell the smells and remember the looks between the family. But...and this is the biggest but ever...I can call the family together and make a meal and talk about the old days and feel the new feelings of a family that has time. This sweet girl cannot. She can't do it and that is all she wants. That is a profound loss of control, knowing that you can't do something you want to do and you know your time is running out.
So what is the answer for her? To make her time with her family as beautiful as she can. To honor her wishes and give her every medication to keep her comfortable, give her every moment to be with her family undisturbed...let them be and love each other as much as they can.
I understand what it is to wish that things were different. What I cannot comprehend is running out of time to make new memories. To live with the courage to know that every time you look at your husband, your children that the time is measured and one of these days will be the last time...deep and difficult thoughts.
So, what do we do? What do I do? I think it is time to stop wishing things were different, that the kids were little and that I did a better job. It is time to live in the now, love in the now and be okay with what is.
You see, there may be a day, hopefully not soon, that we have a cough that doesn't go away, or a lump in a place it shouldn't be or test that didn't turn out to be clear...and we are in the shoes of my dear patient. Wanting to be able to do the simple things that show love to our family, our friends ...but are too tired and cannot.
Profound thoughts for a Sunday night but thoughts that can make the fabric of your life richer...
When we live in the now and understand that we have a life to live and not just watch...when we give ourselves and love each other every day...that's what we are called to do and be. At least, that is what I believe as I watch life come and go daily.
We'll tawk tomorrow,
I love you all,