Our journey started on February 11, 2019 when I was invited by mutual friends to hang out by the pool at Rick’s home. As we talked, it felt like we’d known each other for years; like we were just picking up where we’d left off. We have always said our introduction was an immediate “click” and that word stuck with us throughout our relationship.
Rick’s smile beamed like a ray of bright light. For me, it was love at first sight. I felt it and I tell you, I never wanted that smile to leave my sight again.
We stayed in touch after that. With him in Palm Springs and I in Ft Lauderdale, we weren’t sure how a long term relationship would work. We texted, used video chat, and called each other non-stop. I was completely smitten.
A few months later Rick told me about the lung disease he’d been diagnosed with several years earlier, idiopathic pulmonary fibrosis (IPF), and how he had to use concentrated air while he slept. I think he told me this since we were planning a trip together to San Diego. He knew he would need his portable oxygen concentrator for sleeping and for when we were out and about around the city. I believe he wanted to give me a heads up.
I told him the noise wouldn’t bother me, but he said it wasn’t the noise as much as the way he would look in the cannula. I never paid much attention to the cannula. Sort of like someone with eye glasses. You know their glasses help them see, so you just over look them. It’s the same with the cannula hose to me. It had become a part of who he was, so it was never something I thought about.
One afternoon, while in San Diego, we decided to go bowling. Rick was an avid bowler and bowled in a league in Palm Springs. While we were getting things setup, I took my phone out and snapped a picture of him. He looked up just as I did and smiled, not realizing he had the cannula on. After I took the photo, he asked “Please delete the picture and let’s take another one” all while pulling the cannula off. I looked at the picture and said I would never delete it. I showed the picture to him and told him how handsome he looked. At first he hated it because all he saw was the cannula, but when I looked at the picture all I saw was that sweet smile and bright eyes. Boy, he was just so darn handsome. I never did delete that picture, and to this day it’s one of my all-time favorite photos of him. It’s even the wallpaper on my laptop. It was the very first picture ever taken of him using the cannula, but it wouldn’t be our last.
Several months later he broke the news to me that his pulmonologist now told him he needed to use his oxygen longer than just while sleeping. His lung capacity was starting to decline. At that point I started reading up on everything I could get my hands on regarding IPF and what it meant. I was falling in love with Rick and knew I couldn’t protect him from this disease. I was determined at that point to learn and do whatever was needed to be a part of his life, no matter what. One evening, while sitting on the sofa, we had a long talk about the disease, what was next, and what would be expected. I think right then and there we knew we were meant to have crossed paths and decided IPF wasn’t going to stop us from seeing where this relationship would take us.
Our relationship was working well, but his health was starting to show the effects of IPF. He now had a 5 liter machine in both the upstairs bedroom and downstairs in the living room. Luckily we could go sit outside in the evenings without a problem, which we did often after dinner. Once dinner was over and the kitchen was cleaned I would fix us a drink and we would go outside and listen to music. He would play the role of DJ from his phone and I would guess the artist and sing along, even though he was the trained singer. To this day I never really heard him sing. His voice had started to change and he was a little embarrassed to try and sing too loud. I would have loved it either way. He did often sing “You Are My Sunshine” because he knew it would always make me smile. We would sit there with his feet propped up in my lap. That was heaven.
As time went on, Rick was having to stop doing things he enjoyed. He retired from his bowling league, the Palm Springs Gay Men’s Choir, and working as a volunteer at the hospital front desk and in the pulmonary rehab center. It was tough seeing him having to slowly stop doing the things he loved so much. I know it was hard on him to make those decisions and I know he thought long and hard before having to give them up.
At the end of 2019 he took a trip to see his brother and family in Illinois for the holidays. The portable concentrator now wasn’t enough. He knew he couldn’t go from gate to gate without help, so after getting back he told me he couldn’t trust himself to do that again. It took a lot out of him and he was constantly worn out.
In the earlier part of 2020, I headed back to Florida, as I often did, not realizing I wouldn’t get to come back for over 5 weeks due to the pandemic. That was the longest time since we’d first met that we were apart. It was also the toughest time.
By this time he was maxed out on the 5 liter concentrator and later was prescribed a 10 liter machine for both upstairs in the bedroom, as well as downstairs. This made things much easier navigating the stairs. When I was home with him I could go upstairs, turn on the machine, bring the cannula line down the stairs to him, and we would slowly make our way up the stairs together. Early on it was just a normal but slow walk up, but later it started taking us over 5 minutes to get up those 17 steps. Yes, just 17 steps. I’ve counted them every single night for 6 months, as I stood behind him blocking him from losing his balance.
Later in 2020, he decided when I wasn’t home with him that he didn’t want make that arduous trek up the stairs alone and chose to stay down on the sofa to watch TV a few nights a week. That was easier than having to fight the stairs, just to be left out of breath when he arrived in the bedroom. By this time, the 10 liter concentrator was completely maxed. Going full force. Just walking to the kitchen to fix coffee in the morning became too much. His weight was steadily dropping. 120, 115, 113, 110 pounds. I wasn’t sure what to do. I would fix high calorie dinners to help him keep as much weight on as he could, but if I wasn’t there, he would go some days with just having a bagel and boost shake and maybe something small for dinner. No matter what I made for left overs, easy open pop in the microwave style dinners, he just didn’t have the energy or the oxygen level to get it fixed.
By December his weight was about to hit the 100 pound mark. I was scared and worried. I wasn’t sure what to do. I hated seeing this happen to the man I love. I remember on Christmas Eve sitting in front of the Christmas tree. All the lights in the house were off, other than the tree lights. This was our second Christmas together. Knowing this could possibly be our last, I was heartbroken.
2021 rolled around and the stairs never got easier. When I was home with him in Palm Springs, we would spend most of our time upstairs in the bedroom to keep from having to go up and down the stairs. Luckily the bedroom was a large open room with plenty of space to walk around. It also had access to an outside balcony area, where we could stand or sit and get some fresh air. I didn’t want him just laying in bed all day. I wanted him to keep his strength up.
In mid-January we started discussing signing up for in home care assistance to help Rick when I was back in Florida managing things there. They could come in, make sure he is eating, and help with things he couldn’t do. Most of the time they were there, he would be downstairs so that would make it easier.
Later in January, after getting Rick downstairs to leave to get his Covid shot, we had breakfast, got dressed, and went for his shot. That trip took so much out of him. I didn’t think we would ever make it back up the stairs. I knew when I looked back at him laying across the bed this would be the last time he would be outside, the last trip in the car, and the last time he would be downstairs. I was correct.
On February 1st, Rick called the Pulmonologist and asked if he could get another 10 liter machine delivered upstairs so we could connect the two to give him up to 20 liters of oxygen. His doctor, unfortunately, denied the request. During the call the doctor suggested maybe it was time to call in hospice because there was nothing more he could do for Rick. We contacted hospice to speak with them and work on a future care plan. Rick knew the Chaplin at the hospice center from his volunteer work at the hospital. That made things much easier. Later that day, after a long conversation, Rick called hospice and they came for a visit. He decided to sign on. I hated the idea of that word “hospice” as it really does have a dark tone, but the people that worked with us were so great. It was hard seeing him sign up for this. I remember standing across the room while they were sitting on the bed asking him questions from their questionnaire. I watched his eyes. They were still and blank. He kept looking over at me as if to say “please come save me.” I wanted to so badly, but knew I couldn’t. Later that day, I decided to take the 10 liter concentrator from downstairs since it was no longer being used and combine with the one upstairs using a Y splitter. Rick was now on 15 liters of oxygen.
As March approached, Rick was pretty much bed ridden. No more getting up unless he had to use the bathroom. This was a chore. His weight was down to the very low 90s. He had so little muscle mass in his legs to hold up his tiny frame. Just the thought of moving or sliding him up in the bed to keep him from getting another bedsore scared him. His oxygen saturation would drop into the 50s. Even though he would recover, he worried so much over this. The one thing I would do when I had to move him or get him up was to say “wrap your arms around me like you’re going to give me a big hug.” He would look up once in a while and say “can I just sit and hold you instead?” We would sit there while his head would rest against my chest. I could feel the short breaths, knowing he was struggling, but I was not about to move. I just loved the idea of being able to hold him again. I missed that so much over the last few months. He never cried and the only worry he had was about me and his dog Roxie and our future. I guess I took on that role for him. Every night I would fall asleep holding onto his arm, with my hand in his, watching him struggle with each breath. The machines in the background humming along and tears streaming down my face. I needed him here with me.
On March 23, 2021 Rick lost his battle and I lost the love of my life. My heart has ached every day since. Even though I think back at all our fun times and the love we had for one another I take solace in the fact I did all I could possibly do. For the last 2 years, when he closed his eyes each night, he could sleep knowing he was loved and would be forever cared for. Rick is my hero. I watched him struggle. He never had any “poor me” talks. He never showed fear or cried in front of me. He remained strong. I will forever and always keep Rick close to my heart, as his love lives within me.