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
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.