Pilgrimage - June 30, 2014

One year ago today, my beloved Jim's struggle ended as he completed his life among us. There's something about a one-year anniversary; it seems somehow final in a new way. Until today, I could, in my mind, remember that, "One year ago today..." Now I can no longer do that, and in some way he has gone much further from life than he was even yesterday.

I knew this from when my mom died, and so had planned a pilgrimage of sorts: a visit to a place we loved to scatter some of his ashes, with stops at a few places that held memories of time we had spent together. It was very sad, but very healing. Jim gave me many things during our too-short time together, but other than his love the best gifts were the gifts of places. I have loved Oregon since I first set foot here in the early '70s, and Jim introduced me to places that delighted me - and it gave him joy to see how eagerly I embraced their beauty.

Before beginning my journey - but also part of my pilgrimage - I visited the care home where Jim spent the last 21 months of his life. I took popsicles for the staff and residents - something I had done whenever we had a forecast of hot weather - and a bouquet of sunflowers. The staff there took such good care of Jim - and of me - that they will always be a big part of my precious memories, and I hope I will always remember to honor them in some way.

After leaving there, I stopped at the cemetery, to leave flowers on his grave - a grave that looks as if it's been there much longer than it has. It takes so little time for weathering in our Portland climate, and, oddly, the permanence of it is far less distressing to me than was the bright marble against the newly-placed sod of the first weeks.

My day's journey then began in earnest, as I pointed my car West toward the magnificent Oregon Coast. From our earliest days as a couple, Barview Jetty County Park was our go-to place for a quick, unplanned getaway. We had weathered storms there - personal and weather-related - had watched in awe as the Jetty was reinforced several years ago, and loved to watch the sea crash on the rocks below us. It is there that I left a portion of Jim's ashes - there on the rocks, since it's far too dangerous to get too close to the water. I know that with the next high tide or the next storm, those precious bits of his mortal self will wash into the ocean he loved.

I left there and drove north a few miles to Flamingo Jim's - one of our never-to-be-missed destinations on the Coast. They have everything from t-shirts to knick-knacks, not all flamingo related, but just a fun place to shop and pick up little odds and ends for ourselves and the grandkids.

I next headed back southwest toward Cape Meares Lighthouse. We had only been there together once, but had planned to visit it again someday. It's a beautiful lighthouse and boasted an historic lens that was shipped from Paris to Oregon in 1888. Sadly, two young men fired shots at it, breaking it and causing extensive and expensive damage to it shortly before Jim & I visited it April, 2010. I was glad to see it's since been repaired. Jim had been really upset by the vandalism, and I know he would have been happy knowing that it was whole again.

My final destination was Munson Creek Falls, about 6 miles south of Tillamook. This was a place we discovered by accident, and requires a two-mile drive down a pot-holed road, and then a quarter-mile walk back to the falls - but so worth it! I was very aware of Jim there - remembering every step we had taken, every place we stopped to gaze at the beauty of this hidden spot. It's a quiet, peaceful place, and I'm so glad I decided to make the stop.

From there, I drove back to Tillamook to get a coffee for the road home. We drove through the Coast Range so many times that I almost think I could do it with my eyes closed. Except that the road is very curvy, mostly only two lanes, and subject to rockslides! It's also a lovely drive and I never tire of it.

And so, the hour approaches when Jim slipped away from his pain and confusion, but never, ever from my love. It feels as if I'm saying goodbye again as this year ends. I can't help thinking of all the things I've done that he would have enjoyed, but I believe in some way that I don't really understand he's been with me on this journey - not just today, but all the days of these twelve months.

"We are stardust, we are golden; we are billion year old carbon..."

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.

Baby steps

The day before New Year's Eve marked six months since Jim died. I'm still in that phase of "... a year ago, we ..." and I assume that will continue for six months more.

Thanks to my dear family, I made it through the holidays without too much trouble or too many breakdowns. It was hard, of course, and there were days that I honestly didn't think I could put one foot in front of the other. But I did, and I continue to do so.

Christmas was difficult mainly in anticipation and in retrospect. The day itself was filled with watching the grandkids open gifts, lots of laughter and fun, and a delicious meal with my sister and brother-in-law, to which I was accompanied by my oldest son.

Decorations in my home were muted. Jim & I had a tradition (that he first participated in very reluctantly!) of having family and friends over to decorate. This year, I had a few lights and a rosemary bush, which managed to look festive - almost in spite of me. I had done most of my shopping throughout the year, so there was no real rush to get things done "in time," and I resumed making Christmas cookies - which I had foregone last year - with the help of my two local grandkids. I think I will try to make that a new tradition - including them - since I think it's important to remember and honor the past while moving ahead with what feels right for my future.

Addison and Ada take roses to Grandpa.

Drew singing Christmas songs for Grandpa.

The week before Christmas, my granddaughter accompanied me to Jim's grave to lay a wreath and sing Christmas songs, and the Monday before, Jim's granddaughter and my grandson went with me to take roses to him. I feel so fortunate that they were happy and willing participants in this activity, and I like to think that Jim was looking on with the special smile and tenderness that he reserved for those he loved.

In retrospect, although I had a wonderful Christmas, received a few delightful gifts - more, really, than I wanted or needed - and treasure each memory, there has been a keen sense of not having that special gift from that special person. Jim always paid attention throughout the year to my passing comments or things that he thought I would enjoy doing or having, and my gifts from him always reflected that. It is, I suppose, the universal loss for the one who is left behind. And, of course, I missed surprising him with carefully chosen gifts.

So, the year in which my beloved last lived has ended. There are new things ahead, and I find that I'm feeling more anticipation for what the year might bring than I was even a few days ago. I fully expect to continue to have both good days and bad, and I'm sure that grief will continue to sneak up on me from time to time - as it did when I sat down to write this - but I also know that I was blessed to be loved by a wonderful man, and that knowledge sustains me every day.

Grief

You're funny, Grief,
But I'm not laughing.

Some days - not many -
But some,
You are there, but gentle:

Bringing memories of happy times
Bittersweet,
Days when we smiled and laughed,
Days when we quarreled and made up,
Days when life was just
Life.

Wine on the deck

Ducks in the yard

Watching t.v.

Just Life

Some days,

Most days,

You're like the Class IV Rapids

On Jim's beloved Deschutes:

"Long rapids with powerful, irregular waves,

dangerous rocks, 

boiling eddies, 

precise maneuvering 

and scouting from the shore is imperative, 

take all possible safety precautions."

Some days,

Today, for example,

Days yet to come

Days already blotted from my memory

You are a beast,

Waiting till my head is turned,

Till my mind is occupied with endless tasks,

Reaching into my chest, grabbing my heart,

Shredding me.

Until all I can do

Is fall to the ground and cry.

Secrets

There is a secret place that lovers share,
A place that is theirs alone.

It's the place that holds the memories
Of the first kiss,
The first fight,
And the first time you silently forgave
For a hurt that the other didn't even know had happened.

In this place,
This place of memories,
Are visions
of hours spent together,
Reading,
Working,
Talking,
Driving.

Here live the private words,
The stolen looks,
The shared jokes.

The Owl lives here,
Alongside the broken bed,
The "improved" barbecue grill,
And, yes, that damned bell!
It lives here, too.

Living here are the words of love,
The gazes of love,
The actions of love,
The safety of love,
The sacrifices that don't feel like sacrifice,
They feel like love.

This secret place exists
Just for the two of you,
Binding you together
With the gentlest and softest of bonds.

Today,
Oh, today!
I wrap you in this bubble, this secret place,
And carry it alone,
Forever.

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.