Bob and I, dancing in a Paris park. 2005

Lea Wait, here. Although Bob Thomas and I’ve known each other, as friends and/or lovers, off and on for fifty years, we didn’t live together or get married until 2003. I’d taken care of my mother for the last 25 years of her life, and Bob had cared for both his mother and his previous wife, both of whom died of cancer. We knew one of us would, some day, be caring for the other, and part of our decision to marry was our vow to each other that we would do that. In the meantime, we would support each other in what we wanted to do, individually and together.

Bob, at home, 2013

I was a writer. He was an artist. Two creative people who loved each other. We could make this work.

And we did. We traveled, to see family, and so I could sign books. One memorable trip to Beirut, where Bob had grown up, with a stopover to see friends in Paris. New Year’s Eves in Quebec City. New York City, where we’d met. Family weddings in Arizona, California, New York State, and New Jersey.

But two years ago we knew that our years of careless celebrations of life were coming to an end, and I would be the caregiver this time. (Although Bob kept insisting I might die in an automobile accident any day and he’d be the one left alone.)

At Bob’s suggestion, about two years ago I posted on this blog that within the past two months he’d been diagnosed with congestive heart failure, COPD, and then he’d had a stroke. Our lives changed.

That first year, after his diagnoses and stroke, our major concerns were Bob’s regaining his strength and ability to eat, drink, hold a paint brush, and deal with the pain in his legs from his peripheral artery disease. (Oh, yes. He had that, too. And a minor seizure disorder. And occasional internal bleeding, resulting in serious anemia.) Despite everything, he was stubborn and worked hard, and, overall, dealt well with his challenges. He was able to paint again.

Last year I posted again, writing about what it was like to live with someone whose health issues influenced every day of our lives. The major change for me at that time was that I was now doing all the “household chores” that Bob had done: shopping, errands, cooking, cleaning up, and so forth. My writing time had been cut back.

And yesterday, after the past few, rough, months, Bob suggested it was time for me to write yet another blog, letting the many people who’ve asked, know how he’s doing.

2017 was an increasingly difficult year. In May Bob had (on top of everything else!) an appendectomy which, because of his other issues, kept him in the hospital for ten days. He suffered brief oxygen deprivation, and learned how critical it was to be on oxygen. He came home with oxygen tanks and associated apparatus. But he didn’t use the oxygen all the time, and last summer we occasionally went out to dinner or for short visits to galleries where his work was hung. He didn’t paint much.

January, 2018

He tired easily, and was frustrated by having to use a nebulizer and emergency inhaler as well as, some days, the oxygen. But he enjoyed golfing (9 holes, and he rode on the cart) with neighbors, and greeting friends on our porch at cocktail hour. Standing or walking for any time or distance were difficult, but we cut back our schedules, and worked around that.

In September Bob’s brother, Rich, arranged a week in York, Maine, for all four Thomas brothers and their significant others. Bob used his nebulizer and inhalers and meds, and sat quietly most of the time, but it was a good week, with memories and laughs and good food. Bob quietly told me, “This may be the last time all four of us are together.” But we hoped that wasn’t true.

Bob was gradually becoming weaker. Then, in October, he went through a week during which both of us wondered (separately) whether he was dying. I moved a cot into our bedroom and slept there. Bob had major problems breathing, and his struggles were frightening. He used the oxygen all the time, and the nebulizer every couple of hours.

With granddaughters Samantha & Vanessa, several years ago

Finally his doctors (who work together impressively) convinced him to go to the hospital, and we spent several days there for tests and treatments. The base problem was not his COPD, which we had assumed … but his heart. His heart was failing more, and his lungs were struggling  because of the lack of blood.  Doctors upped the diuretics he takes, and he came home.

In November and December Bob had a few good days — but our definition of “good” has radically changed. Since early December Bob’s spent most of his time in bed, or sitting in a recliner in the bedroom. He’s become addicted to CNN and sports, and his television is on close to 24 hours a day. He uses oxygen all the time, and takes over two dozen medications. The stair lift and ramps I’d installed in our house when I was taking care of my mother make it possible for him to get up and down stairs relatively easily, and make it easier for me to move our meals upstairs so we can eat together.

Bob, 2016, with part of an exhibition of his paintings

Bob and I both, individually and together, have hours and days when we’re (quietly) depressed or angry.  We don’t talk much about the future.  Bob sleeps off and on during any 24 hour period. I sleep at night, lightly, so I can wake up if he has trouble breathing and I can help with his nebulizer. The diuretics have helped, but they also cause severe, painful, cramping. Sometimes he gets confused. He now depends on me for almost everything. In December our understanding next door neighbor drove to our house to pick up Bob and I to attend a party at his house — and returned us home in an hour. Bob hasn’t left the house since then except to visit doctors

Me? I spend a lot of time wishing I could help more: make his breathing easier. Take away the pains, when they come. It’s horrible to watch someone you love struggling, and not be able to help.

I’m tired most of the time. I try to cook food Bob craves. (Only in the past week has his appetite diminished.) I set up his oxygen and nebulizer and medications. My study is next to his room, so even when I’m working, I can hear if he calls me or is struggling to breathe. I’m interrupted often. I find it hard to focus on writing. I asked for (and got) an extension on my manuscript due last fall, and an extension on the book that was due February 1. I haven’t finished that one yet, and I have two other manuscripts due this year. Some days that panics me.

I know our situation won’t get better. While I’ve been writing this short blog Bob has needed me five times. He’s having a bad day. I feel guilty that I’m not with him all of the time. I want to seize and value every moment with him. When he wakes up, even after a short nap, he calls for me, to make sure I’m still here. I feel guilty that I can’t drop everything to be with him. But I have commitments, and I have to meet them.

We’re both doing our best. But … no. It isn’t easy. It’s painful, and frustrating, and scary.

We don’t have a timeline. We don’t know exactly what will happen next, or when. All we know is that we’ll face whatever comes in the best way we can.

We cherish this time. We say “I love you” a lot. And we’re very lucky to have had the past fifteen years together. Some of the best years of our lives.

And those years aren’t over yet.

Note: Bob read and approved this blog.