April 29, 2011

I opened my eyes. Eight o'clock! Where was Jim with my morning cup of coffee? He never let me sleep this late, and since I'd fallen from his truck four days ago, he was especially solicitous, wanting to know how I was feeling, if I'd slept well, was I in pain.

I listened. No noises from downstairs. I couldn't wait in bed; I needed to move my body, to go to the bathroom. Slowly and painfully, I got out of bed. From the top of the stairs, I could tell it was too dark, so I carefully, one step at a time, descended.

As I entered the kitchen, there was no odor of coffee. The flamingo light, the light that Jim turned on each evening at dark and turned off when he set the coffee up before coming to bed - the flamingo light was still on. The family room was dark, the t.v. was on, an infomercial was playing.

Something was wrong, really wrong.

I turned on the light, saw Jim sitting on the sofa. He looked at me and said, "Mike and I are in trouble." I asked what had happened, and he said, "This train has drugs on it."

"What train, honey?"

"This train Mike and I are on, coming back from Mexico. There are drugs on it, and we're going to be arrested."

"Jim," I said, "you're having a dream. You're here, at home, with me. Wake up, honey."

"No," he said, showing a flash of anger. "I know where I am. I'm on a train with Mike. We're in Mexico and we're in trouble."

I called 911. "There's something wrong with my husband. He's not making sense, he's not waking up. Please help me!"

And my life, my world, changed forever. Three years ago today.

It's the little things...

Here we are, two years later, and the only thing that doesn't change is that I keep being surprised by the changes!

It's been just over 25 months since Jim had three strokes (we think) and a heart attack (we're pretty sure), and he's been living in a locked care unit for the past 20+ months. No one ever expected Jim to survive this long once he began his serious decline in late summer of 2011. He's had two birthdays, two Christmases, and we'll soon celebrate our 3rd wedding anniversary - the second one post-strokes. Each celebration is observed with the mental (sometimes spoken) caveat that "This could be his last ______ (fill in the blank)." For someone who was always fatalistic about life, he has a remarkable determination to live. As one friend said, he's a tough old bird!

Lest you get the wrong idea, let me rush to say that I'm in no way wanting to hurry him out of this world! I visit him twice a day - at lunch and dinner - to assist him with his meals. On the advice of my therapist, I do take two days a week "off," and I try to be strict about these days. On the other hand, I've been known to make the short drive to be with him late at night, just because I miss him. I don't expect accolades and I don't feel noble about this, I do it for a very simple reason: I love him and I treasure each minute I spend with him, whether he's awake or not. It gives me joy to be there, to hold his hand, to exchange "I love yous," to banter back and forth.

In many ways, Jim is the same person he's always been. He can be stubborn, sarcastic (biting, even), funny, focused - all the things that are familiar. Sometimes, when I look at him, I half expect him to say, "Okay, enough of this. Let's go home now." But then he'll tell me that he's feeling really sad because his dad just died. Or he'll ask me how I was able to board "this plane" mid-flight. Or he'll talk about "our children" and how proud we've always been of them. Sometimes he'll tell me that the "people" are plotting against him or that "they" hurt the other people who live there. The stories are endless - he's camping or hunting or in the Navy. As my oldest son says, Jim leads a more exciting life than anyone else we know!

Jim doesn't "know" a lot of things. He doesn't know that he can't walk, and will sometimes try to get out of the geri-chair. He doesn't know that we don't live together, so he'll frequently tell me that it's time for us to go home, or that he's tired and we should go to bed. He doesn't always remember that we're married or that we lived together, and will ask how things are at my house. Except, of course, when he does remember, and will tell me goodnight as I leave, and ask if I'll be back tomorrow.

I've adapted to all these things. I've become quite adept at entering into his reality - he can no longer be part of mine - at the drop of a hat (or a sentence). For someone who was never a convincing liar, I can tell enormous lies now with a completely straight face! It's not a skill I ever wanted, but I certainly am thankful that I developed it!

So it isn't any of these things that bring me to tears. I've adjusted and continue to accept that this is my life for now. I'm resigned to that, although I wish with all my heart that I had Jim sitting next to me right now, sleeping next to me, grilling baby back ribs, taking our fifth wheel on another travel adventure - all the things that we so enjoyed together and that are gone. I've accepted these things, if not gracefully, at least with a sense of resignation.

What breaks my heart are the little things. Things that others might not even notice, but that speak volumes to me about the man I've lost. I guess it really started last summer, on our second anniversary. I made lasagna - Jim's favorite - and opened the bottle of very special pear brandy that we had received as a wedding gift. It was one of those "this might be the last _____" occasions, so I felt it deserved special attention. Jim was indifferent to the lasagna and thought the brandy tasted "awful." I was disappointed, but accepted that things are different now, and that the important thing was that we were together.

The next awakening was a few months later, when I arrived late for lunch and found Jim eating potato salad! I've know that Jim doesn't like potato salad for as long as I've known him - but he was eating and enjoying every bite. Shortly after that, he refused a piece of chocolate, saying that he doesn't like chocolate - this from the man who used to buy 10 or 20 Hershey bars at a time when they went on sale. There were days when Jim's entire lunch consisted of half a Hershey bar with peanut butter. Wow! That was an eye-opener!

Fast forward to a few weeks ago. We had a family barbecue at my house and my brother-in-law baked delicious halibut filets that Jim's son had caught on a trip to Alaska last year. Halibut is just about the only fish Jim really likes. Any time we went out for dinner, if there was fresh halibut, that's what he ate. He loves loved it. So I saved a filet to take to Jim for his dinner the next evening - and he refused to eat it. Said he doesn't like halibut. Never has. Didn't want it. I almost cried.

Then, this evening, we had a "date night." Once a quarter, the care home has a special dinner for the residents and families. It's always themed, always has music or other entertainment, and everyone generally has a good time. Tonight was "Fiesta" and the menu was shrimp fajitas or chicken tamales. Jim and I chose the fajitas, and, yes, he loved them. The dietary specialist even brought us an extra bowl of the shrimp/pepper/onion filling, and Jim ate a wonderful meal. When I gave him a taste of the salsa, he started coughing and sneezing and asked for water - lots of water. I liked the salsa, and I do not eat spicy food. Jim has always loved spicy food, but this was way too "hot" for him. One more indication that, slowly but surely, Jim has changed and will continue to change. I have to learn to accept, to not voice my dismay when a once well-liked food or activity no longer matters to him.

It's the little things.

Change

Change is good, people say. Change can also be bad, sad, distressing. Change can even, I suppose, be neutral.

I've known people who adapt easily - they see change as a challenge to be met, a goal to be attained, an element of life to be embraced. I'm not one of those people. I can adapt, but I have to do it in my own time, in my own way. For example, I can release objects that I've acquired or held dear, but I usually have to live with the idea for a while. It's almost as if I have to begin to think about letting go, and then my brain begins to slowly cut the connection until, one day, I can release that object to go on to its next habitation, wherever that might be.

The past 17 months have brought more change to my life than I can process very easily. Physically, my new hip prevents me from doing some of the things I've taken for granted most of my life. I can't sit cross-legged on the floor for more than a few minutes without feeling distinct discomfort. Previously, I could sit until my leg fell asleep, and then I'd complain about the annoyance. Now I have to get my body into a more comfortable position, quit what I was doing while sitting in the floor, and try to quell the frustration that I feel. Not a big deal, but I'm not adapting well.

On a more emotional level, I'm experiencing the almost daily change in how my life is ordered, and the ebb and flow of Jim's physical and mental limitations.

Today, with the help of my son, my step-son, and my brother-in-law, I completed moving from my and Jim's well-loved home into the new house that Jim will never share with me. That was hard, really hard. Jim loved that house; and, because he loved it so, I came to love it, too. Every corner held a memory. Rooms we had painted together, window coverings we had hung together, bathrooms we had remodeled together, plants we had nurtured to maturity, additions Jim had made while I "supervised" and served as his "gofer." The back yard we enjoyed when weather permitted, and, most poignantly, the deck where we exchanged our vows of love, celebrating our wedding with friends and family. Today, as the last of the lawn furniture, the potted plants, the papers, books, and Jim's clothing were removed, as I bade this well-loved home goodbye, I felt a deep sense of loss and sorrow. Jim's clothes are packed to be donated to the Vietnam Veterans of America, and I like to think that he is providing for those less fortunate than we have been. But I held onto a shirt that he particularly loved, as well as the navy blue blazer he wore when we were married. I can't let those go just yet. Maybe I'll never be able to. Change is hard.

Today, as I sat with Jim, helping him eat, his face suddenly became blank and his eyes were far away. When I asked if he was okay, if he hurt anywhere, if he didn't feel well, he said only, "My mind is gone. I can't remember." I asked what he was trying to remember, and he said, "Me. You." Fighting back tears for the second time today, I got out my iPad and showed him pictures of us, our wedding, our friends, our children, our grandchildren. I talked about that beautiful, special day, our joy, our love, our life together. He smiled and said, "I love you." He finished lunch, and almost immediately fell asleep in his chair. The aides wheeled him away to put him in bed for a nap, and I came back to this home that Jim will never see. Change is sad.

Today is the one-year anniversary of Jim being admitted to the memory care home. A year ago, I still harbored secret hopes that one day he would come home, that it couldn't be the home we loved and fell in love, where the stairs and the opportunities for him to come to harm were obstacles that we couldn't overcome, but that we would make a new home, in a new place, together. Even then, when he was more aware of where he was, when he was angry with me, when he would yell and rail against life and against me, even then, even then... I hoped. Wherever Jim and I could be together, that would be home. Together, we could weather that change.

Today, I know that home exists in two-hour increments, two or three times a day, when I drive to be with Jim, to help him with his meals, to hold his hand, to sit with him and talk about things we've done, when I edit my day's activities to not mention the cat he doesn't know I have, the house he doesn't know I bought, the move he doesn't know I made. For two hours at a time - sometimes only an hour, sometimes a little more - for that time I am home, for that time I am content, I am almost happy. Home is where my heart is, and my heart is with Jim.

That will never change.

Anniversaries

One year. Fifty-two weeks. Anniversaries come around like that. They start with, "One week ago..." or "One month ago..." but eventually the weeks and months become a year, and we sit and wonder where the time went. How can it have been so long? How did it go by so quickly?

A year ago, life was going on as usual. Jim and I were newlyweds - just nine months into our marriage. We were happy, busy, doing things we'd always done. I had just returned from a trip South with my sister, visiting my niece and her family, doing some genealogical research, visiting my cousin, whom I hadn't seen for many years. Fun. Life. Living. Loving.

Oh, we were concerned about Jim's recent health issues. He'd had a trip to the ER while I was gone, and he'd just had an echocardiogram and spent 24 hours wearing a Holter monitor, but he felt pretty good and was doing his usual Jim stuff - taking care of the yard, the house, working crossword puzzles, anticipating his upcoming fishing trip to Alaska with his son.

I'd just visited my doctor, complaining of pain in my left leg. He'd ordered x-rays, given me an injection for sciatica, and told me my hips looked really good and would last me the rest of my life. I was looking forward to the next day's lunch plans with my son, so I could see his new offices.

See, life goes on, and we think it will go on forever. Even when we're old enough to know better. Even when our plans, our whole lives, have changed in the blink of an eye many times before. We put things on our calendars - Drew overnight with Gran; Jim's neurology appt.; Fort Stevens for clamming; Jim & Mike's Excellent Adventure; Rodeo weekend - and we think that means that those things will happen.

But in the blink of an eye, a perfectly healthy woman with hips that will last the rest of her life, can fall from the back of a truck and break one of those "perfect" hips. A man with so much to look forward to - a much-anticipated trip fishing with his son, enjoying the achievements of his grandchildren, traveling to far away places with his wife - can have a stroke, a series of strokes. Suddenly, the calendar reads, "Cancel Fort Stevens," "Cancel attorney," "Post-surgical follow-up," "Physical therapy."

"Care conference for Jim."

A year ago. Just a year ago. Or a lifetime ago. All depending on how you measure time.

The winds of change

In 2002, shortly after I moved into Jim's home, we heard (and felt) an enormous crash in the wee hours of the morning that signaled "Taps" for the 250-year-old oak tree around which our patio was built. In falling, it took our chimney, our fence, a cherry tree, our neighbors' second-story deck, and issued a reminder about impermanence.

This morning I looked at my youngest grandson, wearing a shirt that just a few short months ago hung below his bottom, with sleeves half-way down his arms. This morning, it fit him.

In 1998, I few to the Midwest to meet my first grandchild and to marvel at where the years had gone since his daddy - my middle son - was a sweet, sleepy baby in my arms. Next January, Andrew will be a teenager.

In 1970, I held my first baby in my arms, marveling at the perfection and beauty of this long-awaited child. This month, Martin will be 40 years old.

My younger sister and I spent our growing-up years alternately playing together and fighting with each other. We shared a room and taped a line down the middle over which we dared one another to step. She took all of my dolls under the dining table and pulled off their arms and legs. I either ignored her or treated her with disdain through most of my teenaged years. In a few months, my baby sister will be 60.

On Monday, Jim & I stood gape-mouthed, staring up at one of the three tall old fir trees that stand next to our deck. We were sick with the realization that the abundance of fir needles in our yard this Spring is due to the death of this beautiful old tree. A phone call will have to be made, the tree will have to be felled. We will benefit from it one more year as we burn the wood during the winter. And we'll still have the other two to enjoy for a few more years.

Change. Transition. Uncertainty. Of such is life made. But no matter how hard I try to remember this, no matter how many times I promise myself that I will appreciate each minute, each day, each event, as unique and transient, I continue to fail. I take things for granted, whether they be trees, seasons, relationships.

Perhaps that is the nature of humankind.

The times they are a' changin'

As with most couples, Jim and I have routines that we cherish. You know - those simple, not-a-big-deal kinds of things that you miss when your partner's not around and that you look forward to even if you don't always realize it.

One of our simple pleasures is the morning paper. By the time I arrive downstairs in the morning, Jim has usually been up for an hour, the coffee is ready to brew, the morning news is on, the fire is burning in the woodstove, and Jim is in the early clues of the daily crossword puzzle. For the next hour-and-a-half or so, we drink coffee, read the paper and pay attention to the weather forecast. We also occasionally get updates from t.v. on news stories and make random guesses at the answer to the daily question.

Neither of us is an avid sports fan, so that section of the newspaper almost always gets short shrift. Jim isn't crazy about human interest stories, while I devour them along with all the local news. I usually just skim the news from Far Away Places With Strange-Sounding Names, but Jim stays current on all the international events. We both love the editorial pages, the comics, and The Edge.

Throughout this very special time, one of us will interrupt the other's reading with a tidbit that we think might be of particular interest, or if we recognize a name. Sometimes the news will elicit a bit of personal history from one or the other of us. In short, our morning news is a shared activity. Some days there's so much sharing that it takes a couple of hours to get through the paper; other days there's so little of interest that we're done in an hour. Whichever it is, it's shared, special time that means a lot to both of us.

But I think it's going away.

The newspaper is getting smaller (except for the Christmas ads!), and more and more often there is a teaser, followed by "for the rest of the story, logon to www.OregonLive.com/something ." Now I have to point out that I am no technophobe. I love computers. I've built them, repaired them, upgraded them; I've written programs, been a beta tester, and designed and published web pages. I've been on the internet since before there were graphics. When I'm not reading, I can frequently be found with my laptop - well, in my lap! And I read the occasional news story, forwarding interesting tidbits to the people in my life.

But it's a solitary activity, not shared in the sense of reading a newspaper together. And sometimes I want to read more of the story, but not badly enough to drag my laptop downstairs. And by the time I've finished the paper, I'm usually not in the mood to look up some story that briefly caught my interest - I have things to do!

I know that a lot of people enjoy getting their news online, and more and more people choose to not subscribe to a daily newspaper. I understand that the costs of ink, paper, labor, and production are all reaching prohibitive levels and that newspapers are looking at more cost-effective ways to disseminate information. I'm just sorry that this time-honored tradition of news is falling out of favor, and that it will soon fall by the wayside.

I used to think that it wouldn't happen in my lifetime, but I'm slowly coming to accept that it's going to happen a lot sooner than I'd like. I think "USA Today" will soon be the only way to get our news in print, and I think that's too bad. I love the feel of the paper in my hands. I love the unexpected surprises I sometimes get from stories I probably would have missed online. I love the activity of reading something I can fold up and swat a fly with or balance on my knees while I eat a bowl of cereal.

Somehow, I just don't get that same feeling from a computer!

You can teach an old dog new tricks!

Here in Oregon, we vote by mail. (It's not my preferred method, but that's fodder for another post!) So my ballot for the election has been sitting on the breakfast table since Saturday, and some time within the next two weeks I will mark my choices for President, US Senator, and a number of other candidates and issues and send in my ballot.

This will be my 11th Presidential election. I'm a bit nonplussed by that number since I certainly don't think of myself as being *that* old! But I can remember every election and tell you who I voted for in each one. (I've never been a "party line" voter, and I did spend a portion of my life registered as a Republican.) This year, this election, is different for me in a number of ways, however. For the first time, ever, I have:

• put a campaign sign in my yard
• put a political bumper sticker on my car
• donated money to a political campaign
• watched the debates
• closely followed the polls and reports
• canvassed my neighborhood in support of a candidate
• made phone calls in support of a candidate

I frankly think Barack Obama is the brightest hope this country has seen in 48 years, and he has inspired me to become involved in a way that I never thought I would. Indeed, in a way I never wanted to. (That, too, is another post!)

Today at the volunteer phone bank at the Obama campaign office, I spoke on the phone with an 84-year-old woman. She was quite pleased to get my call, and said, "Oh, yes, honey, I have already filled out my ballot and I just put it in the mailbox!"

"You know," she continued, dropping her voice to a whisper, "I just changed to the Democratic party this year. If my father wasn't already dead, this would have killed him. He was a staunch Republican all his life, but it was not the party that exists today. He would have been disgusted with those people bringing all this religion into politics. That's just not the way it's supposed to be."

I agreed, and thanked her for her support. She closed by thanking *ME* for calling her and others to help get out the vote.

We should never be so set in our ways that we're completely closed to the idea of change. Really, what difference would it have made if this woman had not changed her party affiliation? None. She still could have voted for Obama in the election next month. She wanted - needed, perhaps - to make a statement. And even if she and I - and those who read this post - are the only ones who know, it doesn't matter. She made her voice heard - and I'm sure her father would understand!