Last week I posted about one of my best triathlons to date from Old Orchard Beach, ME. The hidden story was that it was a race that almost didn’t happen. I think I mentioned that my 88 year old Dad had injured is his back and was needing a lot of help. The week prior after taking him to the doctor for an evaluation for surgery, I almost decided to stay home and try to get down and help Dad out a bit more. It was only through his encouragement that, with some skepticism and a lack of enthusiasm, I decided to continue my plans and head for Maine.
Post-race, Janice and I had the week off to explore and do some much needed vacationing. Monday night I called Dad and learned that his scheduled MRI & CT scan (preparation for surgery) had gone well although he was really stiff & sore from it. He assured me his neighbor Kathy was going to take him to the doctor Wednesday. He also told me the washer had broken and Kathy had taken care of it. There was resignation in his voice as he realized how much he relied on others. I could tell he wished I wasn’t in Maine. We had planned to be away the following week as well (by coincidence). I knew when he asked again if we would be leaving right away that I would not. I said “That is the plan but it certainly isn’t mandatory”.
Wednesday came and my phone rang mid-afternoon with a Delaware area code. This wasn’t a surprise. When we met with Dad’s surgeon for his back, I had given him my phone number and asked to call since Dad had such a tough time hearing and understanding. It indeed, was Doctor Ray. He explained that Dad looked much worse than the week before. He was much more bent over, and stooped. There is much medical checking that must be done before an 88 year old can have surgery. Dr. Ray suggested Dad be admitted and then he could expedite getting that work done. We all agreed (Dad only agreeing after some encouragement). So Dad & Kathy headed to the Christiana Care ER waiting room.
While sitting in a wheelchair in the waiting room, Dad suffered a massive stroke. He even stopped breathing which is unusual for a stroke. It turns out he had a terrible blood infection as well. With his tissue paper skin, he was constantly ripping himself open exposing himself to germs. With his bad back, such cuts would never get cleaned out or cared for properly.
Dad & Mom both had made very crystal clear Living Wills that excluded ventilation, antibiotics, chemotherapy, radiation, and tube feeding to extend life. Unfortunately, we had no idea we were in a living will situation so it was not there, and when a patient is turning blue in the ER waiting room, people don’t stand around looking for documents. Dad was intubated and ventilated. Later a course of antibiotics was started to fight the infection.
Simultaneously, I was out buying lobster in Maine. Ugh. I received a call from one of the stroke doctors who explained things. My mind tried to keep up. “Wait. Stroke? No he was there for his back. What”? What had occurred sank in. Keywords from the Doctor registered: Large stroke, severely debilitating, stroke therapy, invasive procedures. High risk. Life threatening. He asked questions about starting a medication that could stop the stroke or kill him. After discussion, I gave the approval but told them to call me before anything else happened.
Maine vacation ended. Janice and I made a beeline for home early Thursday morning. It took almost 12 hours of driving but we pulled in to the driveway Thursday evening. Friday, we were off and headed to the hospital. Dad was in ICU at Christiana Care. But he was not alone. His neighbor Kathy was with him and taking care of him as if it were her own Dad laying there. Years could go by and no amount of words or actions could ever fully express my gratitude for Kathy. She truly was Dad’s angel.
There is a moment of truth when you walk in and see your parent laying there full of tubes looking like “all those old people you see in hospitals”. This is the independent Dad who, despite everything, decided assisted living in an apartment was just not for him. This is the Dad you always turned to and could always call with questions even in the latter years when he needed so much help. This is the Dad who taught you to fish, hunt, to manage money, and who was always there to help and not let you fall when you were about to. There he lays and he will never be what he was before again. And he sure wouldn’t want all those tubes! Janice and I knew that immediately.
Fortunately, the waiting for answers was over. An MRI had been done on his brain the previous evening to see if the stroke therapy worked and they had just finished a test on his heart to see if the clot had originated there. We weren’t in the room a half hour when Dr. Kahn asked us to step in to the conference room to give us results.
Dad’s case was complicated. The nature of the stroke was not explainable and the blood infection was not explainable. There was much explanation of medical terms and proposed courses of action with all decisions being left up to us. We now had Dad’s living will in hand and we went through it. Dr. Kahn looked up and said “Unfortunately, everything we’ve done so far is against his wishes”. It was there in black and white. The stroke and blood infection were no longer a mystery to me. Dad had gone to sleep in the ER that afternoon while waiting and that was supposed to be the end. It was nobody’s fault that his wishes were not executed. Nobody including him knew we were in a living will situation.
Now what to do? He was a little responsive and the one thing we were sure of was that he was positively miserable with that tube. He had mitts on his hands to keep him from pulling it out. After a phone call between the family members and Kathy it was unanimous that the correct course of action was to STOP. What do we have to do to get that ventilator out and get him comfortable? It took an agonizingly long day to get there. Without the medical apparatus he would definitely pass but it wouldn’t be immediate (nor would he be suffering) so we needed a plan. It took a couple hours to get to talk to Mollie the social worker. We devised a plan to move him to hospice care at the Friends Village where Mom had been in hospice. It would be best to leave the ventilator in so there wouldn’t be problems en route. There was a lot of concern by the staff about him dying in the ambulance. I just wanted the damned tubes out and wanted him to be comfortable.
Dad was on a lot of pain medication for his back. He was in and out of it but every so often would open his eyes and look around for us. I talked to him. I told him about Maine and how we had wild blueberries. I asked if he remembered the time we picked wild blueberries into his hat because it was the only thing we had to put them in? For the first time since I was about 5 I held his hand which he would squeeze when he looked at me. At one point, he tried desperately to talk but could not. That was truly heart breaking. I told him we’d talk later when the tube was out.
About 3:30 in the afternoon we finally talked to Stacy from Compassionate Care Hospice and came up with a plan. We would take the tubes out and if he was stable overnight we would move him to Friends the next day. Okay. 30 minutes later the tubes were still not out. I found nurse Dan to ask why? Apparently they were waiting for a morphine bag to start that before they took the tubes out. 30 minutes later still waiting. Dr. Kahn showed up and we talked and he went to find out why the tubes were still in. Magically, the morphine bag showed up. Janice and I needed a break and went outside for a bit. When we came back, the tubes were finally gone and Dad had an oxygen mask (which I had approved) and was taking shallow breaths. I had seen this act once before when Mom passed. Inside I knew we wouldn’t see him again. I lied and said “We’ll see you tomorrow Dad. And don’t worry I’ll feed the hummingbirds”. Janice took his hand and said “I love you” and gave him a kiss on the forehead. And we left Dad for the last time. The phone rang that night to say he had passed.
“I’ll feed the hummingbirds”. Those were the last words I said to my Dad. Believe it or not, he probably liked that. He loved the hummingbirds in his yard and kept 3 feeders up all summer. Before leaving for Maine I had filled them but the jug I had used that I thought was filled with hummingbird nectar had just been filled with water. So dammit the hummingbirds would be fed! Back at his house I made 3 batches of nectar and filled the feeders early the next morning before setting out for a run around Elsinboro.
On that run I ran past our old house, and past the little ditch where I caught my first fish. Dad never thought there would be a fish in there. He had given me a piece of quarter round trim with a piece of fishing line tied to it and I had caught about a 3 inch catfish. I whipped it over my head and ran in the house to tell my Mom. I was yelling “I caught a fish” and tracking mud everywhere. Dad always chuckled about it and said “She couldn’t even be mad at you for all the mud”. I was 3 years old.
“I’ll feed the hummingbirds”.
Dad was ready. He was lonely, tired, and in pain. He missed my Mom terribly. She had died 4 years ago. He never planned to outlive her. His friends were dead or disabled and he had nobody to talk to. He didn’t even like Florida any more because there wasn’t even anyone there his age. He was 88, a member of the Greatest Generation
and there just aren’t many left. Oddly, the one thing he would be sad about is worrying that there would be no food for the hummingbirds if he weren’t around to feed them. This spring he was late coming home due to some unplanned surgery and the most important thing he wanted me to do was to get to his house and get the hummingbird feeders put up.
Losing Dad was so much harder than losing Mom. Mom’s cancer and death came as such a surprise. They were together in Florida with my brother and I both up North. Out of the blue, I learned my Mom had brain cancer. Fast-moving, quick-killing brain cancer. When I went to Florida to help get her back home, she was mentally already gone. Things moved fast from there and 3 months later she was dead.
Dad has been lonely since. Until this year, he was reasonably happy. This spring we had a battle of wills. He was much more physically broken down then years past and it was a great concern to us that he was living by himself. We tried very hard to get him to go to an apartment at the Friends Village but in the end he stayed put. My schedule was nuts this summer and I didn’t get nearly the time I would have like to go spend with him. Sure, I’d go down now and again to do chores for him and get annoyed when he said he needed something only to go find out after a 2 hour drive that it was just to dump a bag of solar salt in the water softener. But only after his death and talking to his few remaining friends did the fog lift and I realized he just needed company. And, forgive me Dad, I completely missed on that. I’d go down buzz around the house doing the few things he needed, maybe go out for lunch or run him to the farmers market and than hurry off home with the knowledge that Dad has always been there and we’ll do more next time, or next year, or the year after that.
Before we left for Maine, I had noticed a Disc Error on the Bose Wave radio. I was up early the morning Dad died and I got a screw driver out and took the bottom off the radio. Sure enough there were two discs stuck in there. Dad never listened to the radio because he couldn’t hear it. Oh my God. It was a disc of patriotic music stuck in there with a Christmas music disc. The poor guy had tried to cure his loneliness by listening to some music and stuck the radio. I had been in too much of a hurry to fix it the week before. And then I filled the feeders with plain water and he couldn’t even sit in his chair and watch his hummingbirds come and go. Suddenly, I felt like the world’s most inadequate son and the tears flowed down my face for quite a while.
In life, Dad was always forgiving. I did some dumb stuff when I was a kid and Dad never seemed to remember any of it though he could remember baseball stats, financial information, and just about everything else. Please Dad . . forgive me one more time for maybe not being there as much as I could the last few months. And know that I WILL feed the hummingbirds. You’ll see. I love you Dad. Goodbye.