Sunday November 6, 2011
Time keeps marching on whether I want it to or not. It’s the height of holiday season now that we have passed Halloween.
We have lots of trick-or-treaters in our neighborhood – well over 100. I buy two huge Costco bags of candy and some non-food item, usually pencils. It’s a surprise for the kids and parents usually. Halloween is just plain fun and entertainment to me. Dave was upstairs of course and Leah was with her friends, so it was just me left to answer the door. And really, just me. In past years I’ve had to hook up Lucky dog on the leash and he would nose his way out the door and greet the kids. As a medium sized shepherd mix he could look some of the younger kids in the eyes. He was always gentle and let the kids pet him. In fact they pretty much had to get through him to the candy bowl. I missed him this year.
The first disagreement Dave and I ever had was in the spring of 1980. Maybe I should say the first argument I ever won was in the spring of 1980! It was over which way to set the clocks for daylight savings time. Spring forward. Fall back. It’s simple. He was sure it was the other way around. Of course, Dave the professor is a great debater and it is difficult to question his intellect and memory but on this one I had him and I knew it. It was only a matter of the clock setting ritual to prove I was right. (No cell phones and Google to look up instantly back then) When I think back on it, this may be the symbol of how we balance each other in our own smarts. I am the more practical and he is the more learned. We’ve teased each other for years about this moment. Or actually, I remind him during opportune moments!
I’m glad we turned back the clocks and found an “extra” hour today. I can use a few extras ones just for sleeping. The shortening daylight hours in the Northwest is getting obvious. By the solstice of December it will be dark for the morning commute and will be dark for the arrival home. Not that I have a commute to work (to the home office) but the short cycle of the daylight makes for a desire to hibernate.
The last couple of days have been rough for Dave; really, most of the week. His digestive tract does not cooperate and when you add up all the medicines he takes, the lack of varied foods, lingering effects of the stroke on his GI, and decreasing size of his stomach, we spend a lot of time managing what goes in and what comes out. When I was a nurse’s aide in my early working life this was known as I and O – intake and output! And for anyone who takes care of the ill this subject is no surprise. Now, for Dave, this system seems to be getting tougher to manage.
Nausea and vomiting started late Friday afternoon. It is such a helpless feeling to sit by and wait. His whole demeanor turns inward. The vomiting takes all of his focus. He would sit at the edge of the bed waiting tiredly over a pink, plastic, square tub.
This particular container has a history with us. I’m sure I’ve had it since one of his hospital stays. You know, the style of bucket they pack up you up with when you leave. As you prepare to leave the hospital it’s filled with the small box of cheap, rough tissues, your paperwork, and whatever you had at the bedside in the hospital. It’s such a nice and neat way to get you out the door. Often the patient being wheeled out (for insurance reasons) carries this in their lap. Obviously as a former hospital nurse’s aide this image is etched into my mind!
This bucket has been with us from the old house for sure – two moves ago. The color is a giveaway to the color trends of 1990’s! I think this is also the time that hospitals decided pink was a psychologically soothing color. The 90’s means Hodgkins or his Pneumonia stay. I’m trying to recall if we carried this in the car as we drove up and back to Tacoma for all the chemo therapy treatments for Hodgkins. But, I digress…
Dave is so thin. I’m not sure I want to describe just how thin, yet this too is part of the loss and grief I internalize. Literally, he is disappearing before my eyes. As I sat with him on the bed’s’ edge, I rubbed his back for comfort. I can feel each bone, each rib, each vertebrae. I think about the names of the bones as I outline his back. I follow the contour of his scapula, the recess of his neck along his clavicle to the shoulder joint of his humerus. It’s too easy to feel each bone. I kiss his head and comb his hair with my fingers. There is little muscle to hold him up. His skin sags beneath his too big pajamas. His face is showing the bony structure beneath as well. In the shadows of night I see the dips and contours of his skull while he sleeps.
He alternated hugging two pillows in his lap along with the container; resting, between waiting, for his body to respond. I kept remembering the chemo days when, by the last treatments, he would be nauseous just walking into the chemo room. I rubbed and tried to ignore the moment by watching the television picture reflected in the glass of the framed photos on the wall. I found myself comparing the right side of his back to the left. Can I tell if there is a marked difference? Are the ribs being pushed out by the tumor? It seems perhaps so. Maybe I am just imagining. I trace the skeleton again and again. The back rub helps him he says.
(His wedding ring just fell from his finger last week. We placed a ring sizer inside months ago. We sat silently for a second in recognition that his weight is still slipping away too. )
Because he couldn’t keep down his pills, we turned to the “comfort kit” stashed away when Dave was admitted on hospice months ago. There is liquid pain medication. In case he can’t swallow pills. This was the moment. Through the night, every four hours (like feeding a newborn) we awoke and dosed for pain. All the other pills were skipped. No reason to add to the upset, and no one pill is life sustaining at this point.
I suppose we could have called hospice at the first changed sign with the vomiting, but we both tend to see how it plays out. Is there just one episode? Will this symptom pass on its own? I’ll try to be a bit more aggressive and responsive on his behalf. After all, comfort is what matters. The experts have quick and effective solutions. And amazingly enough when I talked to the nurse first thing in the morning, there was an anti-nausea medication also awaiting him in the comfort kit. In minutes he felt better. In half an hour I could see he felt better. A nurse visited within an hour to check him out.
Slowly we’ll add in the liquids, treat the nausea. Give nature some room to make this right. His body has its own time and rhythm now. There is no pattern, no normal to figure out. There are only changes and how it is at any given moment.
I feel a subtle change. I want to do less for me and more for him. I want to sit in the room and be. I think he wants it, too. Maybe it’s just that I am wanting to coast through life for a while.
When Leah and I were out on Thursday night she offered to have Scott come stay. I needed her to drive me to an event I was speaking for. This alone is a difficult situation. Usually I would go on my own. Because of the SCDS I wanted her to drive and assist me with some equipment. It touches on my independence and puts a crack in my front line support system. Who is she going to help? Mom or Dad? Mostly I have been able to leave Dave for a couple or three hours. I am now down to about one and one-half hours tops to leave him alone, mostly for my comfort. He does seems to prefer someone in proximity right now. Anyway, surprisingly to me, Dave accepted the company and Scott came over. Now, really, I have to wonder if this was for him as a father to check out Scott or did he simply want company?! (No pressure! Ha-ha.) Dave welcomed the company.
There is a shift. It’s like the magic of the Prednisone has worn off, the milestone dates have passed, his mind and body are slowing. My sense of calendar is narrowing into weeks and days rather than months and weeks. I’m taking on the schedule of his daily pills to set my clock and actions whereas he now seems to be counting on me being in the know. I’ve had to bring out the notepad to keep up. When the pill routine changed because of the vomiting, I knew I couldn’t rely on my memory of what was taken when. So I’ll document. And together we’ll keep this straight. Time is a blur.
My internal nurse’s aide and mother and nurturing are surfacing strongly now. I have to balance the clinical and practical with the loving and emotional. But at the end of the day of each day I am his wife and he is my husband. We have developed our own language, our own way of being together. It’s often silent, yet comforting. And it is turning from us to him.