Day One
My 89-yo father was just diagnosed with colon cancer. This is my experience.
June 28
It was the evening of the fifth day of our visit with our daughter, son-in-law and grandson. I had spent four hours the day before with a very active 20-month old by myself and was in a state of exhausted bliss. I was also figuring out logistics for a visit to my best friend several hours’ drive north. We had just put Benjamin down to sleep for the night and Bob was back from several days of business meetings in Washington DC. Then my phone rang. The caller ID showed an area code that indicated that the call was from the U.S. state of Virginia. If legitimate it could mean only one possibility: my mother was calling, or the staff at their retirement community were calling. I didn’t really feel like talking to either of my parents for reasons that will be discussed later. But I held my breath and took the call.
“Hello, my name is Alicia. I’m on the nursing staff at Sunnyside. I’m calling to let you know that your father was taken to the hospital.” Sunnyside Retirement Community is what we call a “Continuing Care” facility. Calling it a facility is an understatement. It’s more like a college campus. There are dining and cafeteria options, there are individual homes that each have their own yards and landscaping. Some of the larger buildings look like college lecture halls and laboratories. One building is strictly for “memory care”, another is for 24-hour nursing care, and another building - called “The Highlands”, houses retired couples and singles in apartment-style dwellings, and also has a wing specifically for folks who are recovering from injury, are transitioning to assisted living, or are receiving daily occupational/physical therapy due to an ongoing or chronic health issue. In my case, my parents had recently moved from one of the duplex-style homes to an apartment in The Highlands.
While my mom’s ability to live independently is still good, my dad has chronic health issues that have caused some friction in the relationship between my parents and the staff/administration at Sunnyside. This is extremely common, and happens as an elder ages, becomes less cognitively stable. In the last year (maybe longer) my dad felt his agency taken away, and he was not having any of it. I want to be clear. From my perspective the Sunnyside administrative and nursing staff handled the entire situation to the best of their ability, and I am so grateful for their caring and ongoing efforts on my parents’ behalf. It wasn’t perfect, but who is?
Hearing that my father was taken to the hospital was not alarming. It was what came next that raised all sorts of alarms. Alicia continued. “Your father was on the toilet having a bowel movement and there was a significant amount of blood. Your mom found him on the floor, having fallen forward. An ambulance was called, and he was taken to Sentara RMH. Your mom was going to follow behind.” I thanked Alicia and looked at my daughter, who I was visiting. Dad and I would be driving to Harrisonburg, VA in the morning.
I had a phone number for the Emergency department, and called to see if I could speak to either of my parents, let them know I was coming. Another alarm bell went off. My mother wasn’t there with my dad, and he had been in the ER for over an hour. The drive should have taken 5 minutes. Since my father is clinically deaf, I could not get much across to him on the phone. Even with his hearing aids, he has difficulty understanding speech. I called Sunnyside again, and let them know about my concern for my mother. A search began. About half an hour later she showed up at the ER. It had taken her an hour to clean up after my dad’s episode.
I want to insert a simple technology request here: could someone please invent a simple, easy-to-use, pager-style device that an elderly person can wear on their person so that authorized persons (close family for example) can “call” it, and immediately speak to the individual without them even “answering” per se? Thanks in advance.
June 29
I arrived at the hospital at about 4:30 pm on the evening of June 29. By that time, my dad had been admitted under the heading “observation” because it was determined that he should be monitored for a day before going home. He was stable, repeating the desire to “go home” and occasionally would express his belief that what he was going through was “stupid”
I apprised my brother, Jim, of the situation and he let me know that the prevailing self-diagnosis of “this was just a hemorrhoid” was probably correct. Thanks Jim, that really was not helping. That doesn’t explain the mass that the CT scan revealed in the hip, down near the rectum.
I managed to convince my mom to go home and get some sleep around 6:30. She left, and I endured an hour of my dad reminding me of how stupid I am with my life choices. I cried a lot during this hour. It felt good to let it all out. Plus it was better than arguing with him or getting angry.
June 30
The next morning my mom and I both arrived at the hospital about the same time. It was around 10:30. I had just been on the phone with several people in my hotel room, and also had to answer some email messages. Through all of this, I’m also trying to schedule appointments next week with new clients for math tutoring. I tried to get all that done alone before having to deal with dad. It wouldn’t be any good to try to ‘do work’ at the hospital.
Soon after we arrived, a surgeon came into the room letting us know that he had spoken with the urologist. They had decided to perform a “flexible sigmoidoscopy” to see if they could better determine the nature of the mass. We waited for nurses to give my dad an enema, and he was taken to surgery at about 1 pm. Anesthesia would be administered during the procedure.
Lunch was in the hospital cafeteria. I drew on years of classroom experience to socially engineer my mom to the point where she had to admit that yes, dad might have to go into “health care” and to assisted living soon. It’s the definition of “soon” that hung in the air. Dad’s previous experience with “health care” was not a positive one (from his perspective), and mom and I both agreed that there would need to be clear expectations for this arrangement in order for her to be “ok” with it. And dad needed to “feel like” he was making the choice to go there, not being forced to go and told “you will never be able to go back” [to independent living]
As an educator, I know how important it is to avoid absolutes, and to employ a decision-making process that allows the client to feel that they have a voice in what goes on, and that their concerns are heard, and that ongoing efforts are made to address issues that arise.
I’m now officially exhausted and the day is only half over.
2:30 and we went back to dad’s room. He wasn’t there, but we weren’t expecting him to be. We sat there until 3:00. Got worried. So I offered to take mom down to the “family waiting room” outside the surgery area. There was an LCD board that looked like a flight status board at an airport. There were case numbers, locations, status code, and surgeon name. We found dad’s. He was in room “R-04” and his status was “Boarding”. I joked with mom that he was boarding his flight. She got a kick out of that.
We decided to wait there for a while. The surgeon would undoubtedly have something to tell us about the procedure. We chatted with two other people who had a loved one undergoing hip replacement surgery. Then dad’s location changed to his room number. We went back up to the 4th floor.
Dad was groggy but awake. He needed to go to the bathroom, but before doing so a nurse came in with a liter-sized bottle. He apparently had to drink as much of it as possible. There was going to be another CT scan, this time with contrast. [Where was the surgeon?]
Dad’s incontinence was pretty uncomfortable - both for him and for those around him. He seemed to have to go every half hour. Finally the surgeon came. He had tried to see us earlier when we had mistakenly come up to the room, so after a bit of misdirection we finally got to meet with him. The news was not good. Turned out it wasn’t the rectum that was a problem, it was further up. Cancer. Transverse colon.
Step One: CT scan with contrast to see if the cancer had spread to other areas.
Step Two: If the answer to Step One is “no” then dad was a candidate for having the section of colon removed with the tumor.
We all absorbed that information and dad was helped to the bathroom. I saw what caring for my father meant for my mom. She had been an RN and had been giving my dad full time nursing care for the past five years. I saw the toll that was taking on her, but I could not intervene. She had to come to the realization that it was becoming unsustainable. I provided the best counseling that I was capable of providing, and she expressed gratitude at dinner.
I took mom to dinner at a lovely Italian restaurant called “Vito’s”. We each had Cannelloni. Over a plate of marinated olives, and garlic knots we talked about anything that was “normal” to remind ourselves that life is good and love is precious.
By the time dinner was over, the time was coming for dad’s CT scan. I dropped mom at the hospital entrance and said I’d be back in the morning.
When there are multiple family members to keep in the loop, it helps to have a few who are willing to be relays. My cousin Daryl was the perfect candidate for that. He could relay information to the rest of my dad’s side of the family. I was so grateful for Daryl and told him so. With my brother also notified, I returned to the hotel to crash. End of “Day One”