Lea Wait, here. On February 1 of last year I wrote on this site about the stroke my husband, Bob Thomas, had suffered the week before. I didn’t mention that we’d also just found out he had other medical issues: congestive heart failure and COPD/Emphysema. And — oh, yes — peripheral artery disease and severe anemia.
A number of people have asked me recently, “How is Bob? How are you both doing?” Here’s our answer.
2016 was a rocky year. Not for our relationship – that might even have strengthened – but for understanding Bob’s physical challenges and knowing what could be improved, what couldn’t, and accepting both.
I’d be lying if I didn’t say some tears, anger and depression were involved. For both of us.
Now, almost exactly 18 months later, Bob’s doing well. Yes, he now uses the stairlift and ramps in our house, and wears clothes that are easier to manage than those he used to wear. Yes, he tires easily. But he hasn’t been hospitalized since last September, and that was just for blood transfusions and infusions of magnesium to counteract the anemia. Minor hospitalizations.
But our lives have changed. For example, Bob used to do most of the errands at our house, since he likes to get “out in the world,” while I’d rather be a stay-at-home introvert. On good days (like the day I’m writing this!) he still does those things.
But on other days, I’m the one who’s out doing errands. That’s hard for both of us. I don’t do as much writing, and Bob feels constrained. But we agree he needs to save his strength for activities he values most — painting, and cheering the Celtics on from our living room.
He has a major exhibition at the Southport Library in Maine this month and next, and has other paintings on display at the Stable Gallery in Damariscotta. His work is becoming even more sophisticated and layered. On rough days he worries about how long he’ll have the strength to paint, and whether he can improve further.
Bob takes about thirty pills twice a day to keep his illnesses at bay. The most challenging and troublesome now is his stage 3 COPD, for which he uses a nebulizer every 3-4 hours, around the clock, in addition to 2 other inhalers. At some point, perhaps not too far off, he’ll need to use oxygen.
Because of his breathing problems, Bob and I have not shared a bedroom for six months. Neither of us like that, but it’s healthier for both of us. We both need sleep, but our sleep is often on different schedules. And if Bob got a cold, he could end up in the hospital. I keep any germs I’ve acquired down the hall. I’m not far away if I’m needed. Which I am sometimes, for various reasons.
Bob and I still see friends and attend art openings and author talks, although we don’t stay as long as we used to. We try to keep calm (not easy these days, for an assortment of reasons!) Anger and stress make COPD worse. Will it get better? No. But maybe we can delay its progress a little.
People have asked me how I’m coping. Physically, I’m fine. Emotionally, like Bob, I have good and bad days. I sometimes feel guilty for taking time away from him to write, but I have deadlines, and we have bills. I’m limiting my appearances, and only doing two or three events this year that require me to be away from home overnight.
We are both trying to focus on today, not on yesterday or tomorrow, and on the time we have together.
So, in answer to the question at the top of this post: yes, our daily lives have changed since Bob was diagnosed with what he often jokingly refers to as his “three fatal illnesses”. But, no, nothing has changed. We still love each other, want the best for each other, and try to manage our lives so we have time to continue what we love: painting, writing, and being together.
For now, we’re planning to enjoy warm weather and sitting on our porch and talking with friends and celebrating our life together.
Illness doesn’t change love.
Note: Bob read this and encouraged me to post it.