Saturday, January 14, 2012
Nanette Griffin’s birthday. It is really much easier to remember the birthdays of people I went to elementary school with than the grandchildren’s. Why is it? Or do I just remember January birthdays because my own slides through, usually quietly, after the new year. (I also remember Ruthie Priester, Elvis and Richard Nixon. Once we get to Martin Luther King, I suppose, much like New Year resolutions, the dates drop off!) I was noticeably more honored on my birthday this year than in the past with the company of friends and family, phone calls, small gifts, plus dinner and lemon meringue pie. It is nice to be loved.
I am still in New Year assessment mode. I think I have to add a new date to January. Dave’s last day working and the anniversary of his reaction to the chemo, Tarceva. January 20, 2011 was a changing day.
Soon afterwards, he was placed on home health care, then almost immediately into hospice service. Neither of us thought he would see 2012, much less summer. In some ways Dave maintains better today than in those first couple of months. Or maybe it was the panic of anticipated loss – fear, anxiety, confusion, change that I saw most.
Our assigned nurse Jeana came on Wednesday after not having seen Dave for about three weeks. Holiday and other scheduling sent other nurses to us. Relatively speaking he was doing better than her last visit – better lung sounds, more alert, textbook vitals. So from the discussion about how things can change… things do change. Sometimes up and sometimes down. And as if on cue, in the past couple of days we’ve seen a downturn with foot swelling, less alertness and Dave need more physical assistance.
So I am just trying to go with the flow. The most important flow is mental attitude I think. And sleep. Maybe sleep is the critical component I need for a good mental attitude. I am tired. I nap often. But it’s not the “I’m depressed and can’t face the world” avoidance sleep. It’s the “I can’t think/concentrate and when will I be refreshed and energized?” hopeful sleep.
I am trying to go with the flow about pain, too. Mine and Dave’s. Clearly physical pain is distracting and my hip (and SCDS) continues to play into my daily activities. I have to rest my body on this count, too. When I exercised and did all the assigned physical therapy routine last week, I set off a couple of days of pain and recovery. OK, not the right routine yet. This doesn’t hurt while I work out, so how do I know I’m creating a new stress? Pain is lessened by sleep. Maybe I’ll wake up more refreshed. Quit trying so hard, Joan. Go with the flow.
Dave’s pain level is well managed when he takes all his pills on time. This is one of the new challenges. As we sleep odd hours, we miss the timings of his meds. A couple of weeks ago I printed up his med list and schedule just to keep it all straight. Even now he doses out his own pills. But earlier this week he slept through the night shift (we’re on the old school nursing shifts – 7am , 3pm, and 11pm) and awoke with pain by morning. Now we have been setting my cell phone alarm, and I am making a more conscious effort to see that he remembers his pills each and every time.
Going with the flow… As I write I can tell that my concentration is just off. I spend a lot of time accepting that I don’t need high expectations. What counts is taking care of us both; even if some days that translates simply to eating and sleeping. I can do the minimum and feel accomplished, I have to force myself to think and accept. I find that I am sitting here in report mode, trying to capture the feelings and thoughts and activities of this moment before they escape into oblivion, dissipated.
I want to share a story that is small, but indicative of Dave and me in the now. I picked up the mail and there was a letter for Dave, from his high school class of ‘57. He sat at the edge of the bed under the lamplight reading the notice of his upcoming 55th class reunion. When he finished he handed it to me. I think I asked if it was a reunion notice. “Keep this,” he said as he handed over the paper. “For what?” I asked. I had actually been spending the last two days rearranging and picking away at the piles in my office in hope of feeling better prepared for taxes, work and some new feng shui energy. Not work-day productive in the short run, but perhaps for the long term. The letter was part of the mail purge. “You know I’ll feel obligated to keep this forever” (until after you die, I actually thought but didn’t say). I was envisioning which new pile to sort this into. “When is it, the reunion?” he asked me. I looked down. October. 2012. In Tulsa. God, that seems like an eternity from now. “I’m not going to go,” he said.
Of course he’s not going to go! He hasn’t attended a single reunion in all the years since graduation. Why would he now? He hasn’t set foot on a plane in dozens of years, much less traveled out of town (other than medical) since his stroke – in 1998. Really? You aren’t going? I didn’t know whether to laugh or cry or state the obvious. I chuckle now. I told him I didn’t need to keep the letter. His silence told me it was for me to handle. However, I did send back the RSVP and made note to the committee that he is ill. He has a website, I included. I doubt he’s ever even RSVPed for past reunions.
But Dave’s mind is still thinking in terms of life, of living, of future. Occasionally, he mentions he could get out the computer and maybe go through his e-mail. He hasn’t been downstairs since April, 2011. His mind is incredibly strong, stubborn if you will. His mind, over matter of disease, is in play. Our minds, through this journey – whether facing life or death – is what keeps us up, living and moving forward, if only a few inches at a time.
I can, fortunately, reshape each day for the better as I think and write and live it. The stories I keep within and share throughout become my life in whatever way I tell them.
Dave told Jeana that he is still interested in the world (in spite of declining health). He is “not ready to go yet.” I noted that in some ways he is probably “better” now than he was last March. Whereas I could feel the inevitable pull from death then I am so unclear now. I can’t make any predictions about how and when, mainly because I only think about today or tomorrow – not next week hardly, much less next month.
His interest waxes and wanes for football, politics, even his lifetime occupation for history, and the college. One day he cares about it all, the next is focused on getting through the day, literally.
My world also narrows to making sure he has clean pajamas (laundry has taken on a whole new meaning, just like making sure baby’s clothes are clean, sanitized, and healthy in all ways), and that each meal replacement drink is cold and frothy. I see to it that he can reach the TV remote, his medicines are taken, I am nearby to help him stand, or lift his legs back in bed, or rub the pain from his back. I focus on the single-minded caregiver role, running with both his and my lives, they are so inextricably linked, even if separate. When politics matter for him, then for me, too. If he wants to keep the reunion letter, then perhaps it is important to keep. Maybe, if just for now.
Or it is a time to realize some things must be let go. A gentle reminder. For us both.
So I go with the flow. And now when I write, I can find some moments of making the stream (of consciousness) flow with gravity, around the rocks, swirls and eddies, dancing the way to the end. What end? Someday the stream will meet the ocean where it will open up to a strange new world. For us both.