Long-term hospital stays can feel like prison terms to medical patients. So many simple freedoms are taken away. You can’t walk around outside in the green grass, or have your coffee exactly the way you want it, or go to the store and see what foods call to you that day. Your life exists on everyone else’s schedule — you can’t sleep when you want to, eat when you want to or even shower when you want to.
In your mental image, hospitals are serious business and not associated with fun. You don’t go there on vacation — you go there to get better. And while you’re there, it feels like time stops, like your life is on hold. You know that outside, life goes on without you. Your friends and family go on with their lives and careers, growing, changing, learning, loving, and you feel the sting of not being involved.
My husband David spent the last three years of his life battling non-Hodgkin’s lymphoma. Between chemo, transplant and infections, we had many long hospital stays. David was diagnosed at age 37, and for the last two years of his life, we did not spend any holidays at home. We had our holidays in the hospital.
Months and months in a hospital room weighed heavily on his spirits. It could have become unfathomably sad if I started focusing on how our life hadn’t become what we envisioned. And even worse, our future was entirely uncertain, and that was terrifying. I realized that I needed to shift my gaze to the right now. I started to change my vision of what our life could be. I had to ask myself, what is life affirming? How can we make the most fun right now? This IS our life, so how can we make it as beautiful, enjoyable and rich as possible?
David was a very social guy. He liked being around people and was quite chatty. I had to continue to work and would go to the hospital to see him before going to the office, at lunch and then be there after work. So my goal was to figure out how to get other people into his room, especially in those hours when I wasn’t able to be there.
The first thing I did was to arrange a schedule for our friends to visit, so that David would have company as often as possible. Friends chose their days and close family helped, too. Dave’s dad always took Sunday, which allowed me a day to rest. But I also wanted people in his room beyond the visiting hours. So I created a big bowl of snacks for his room. There were all kinds — sweet, salty, healthy, something for everyone. It was like a “bowl of dreams.” If you build it, they will come. And the plan worked. People would stop in to grab something out of the bowl, feel guilty taking a candy bar and just leaving, and end up staying to chat with David. Eventually they started to see David as a person rather than just another anonymous patient. Equally, David began to see them as individuals and not just faceless caregivers. Whereas nurses, for example, were typically busy and transactional, performing the same routines over and over, asking about his pain, taking his vitals, dispensing medication, sometimes I would find David and Robert, the night nurse, engrossed in conversation. One evening after work, when I walked into Dave’s room, he and Robert were having a discussion about stamp collecting. This made his days far more bearable, almost enjoyable. More importantly, he was no longer just on the receiving end of things; he was now in a position to give and share as well.
We connected with everyone that entered the room, whether they were nurses, dietary aides or housekeepers. We took the time to introduce ourselves and to say thank you. We would learn about them, where they were from, whether they had kids, etc. Every person who entered his room was important. This had a reciprocal benefit, too: a very clean room was critical for someone with a compromised immune system, such as David had after treatments. The housekeepers became aware of David’s needs and were especially diligent about their duties. We would thank them profusely, and my husband would offer them a treat from the always-full bowl of snacks. These relationships created a positive environment for David and helped him feel like he was among friends rather than strangers.
Another simple adjustment that added some normalcy to David’s hospital life were a few articles of clothing that allowed him some options from the regular hospital-issued gown. David was a handsome guy and a snappy dresser, so it was a relief for him to have some choice in his wardrobe. I brought in a bathrobe, comfy slippers, pants with elastic waistbands — more like sweatpants or yoga pants than pajamas — and some loose-fitting shirts to allow access to David’s infusion ports.
We were concentrating on living each day and not waiting for that magical moment when we could go home and stay there. We knew this was unlikely. Hospital life was our life and we decided to live it as well as possible. So even on holidays, we brought the celebration there. And not just for us, but for our new community of friends. Whether it was having Easter baskets in the transplant unit or bringing in small Cornish game hens — we dubbed them mini-turkeys — for Thanksgiving, we lived and laughed and had as much fun as we could manage. This was our life, so we made it ours right where we were. We were not in the hospital to die. We were there to live.
Lisa Bassi is a yoga instructor and former insurance executive, living in North Adams, MA.