How to be a Caretaker and NOT go Insane – Adventures at Memorial Sloan-Kettering

As my regular readers know, I have been taking some time to take care of my father after he had a 9+ hour maxillectomy surgery at Memorial Sloan-Kettering to remove a stage 4 tumor. During that time, I spent over a week fairly close to the hospital, spending 12-14 hours a day in the area. So…how did I do this and not go insane with boredom? Here is the secret to how I turned my time being a caretaker and squeezing in some fun when I had the chance.

1) I Had Help

Lets be clear. One of the main reasons. I could do this is because my stepmother and I were in this together. In fact, she did the lion’s share of the work, and spent nights in his room. But by tag-teaming, she and I got breaks during the day that allowed us to get food, air, and the occasional adventure. I even spent a night or two so she could go home, get a shower, and tend to some personal affairs, while I dealt with my grumpy..I mean healing…father at night.

My stepmother and I were there everyday. Having the ability to tag team is what saved us both

2) I Took Advantage of Sloan-Kettering Itself

3 hours into our 10+ hour wait for my father while in surgery, the nurse mentioned to me that families waiting on longer surgeries prefer to wait in the Patient Recreation Center. Why she waited 3 hours while we sat in those uncomfortable chairs, I’ll never know. But once we discovered it, we visited it over and over again. The Patient Recreation Room, on the 15th floor, is a great space with comfy seats and sofas, tables, games, puzzles, sewing projects, a pool table, and loads of entertainment on a regular basis. It’s a place for the patients and families to get a break from the small hospital rooms, and be in a warm, relaxing place with bright colors and loads of space. Plus, while my dad was in residence, they had a Tango performance, a Guitar concert, and a Pianist among other things. There was Bingo Games, Board Painting, Bookmark making, and more. I was bummed I missed chair yoga because I really needed a good stretch after all the sitting

Who doesn’t love a giant wall sized game of Scrabble? This just one of the many treats you find in the Patient Recreation Room

Music and Dance was almost a daily occurrence, and a fun treat for patients and visitors alike

3) We Walked Outside the Building.

The day of surgery I was too nervous to venture far from the waiting rooms, anxiously waiting for the calls from the surgeons. But once surgery was done and I was able to see my father, the need to exit the building and get fresh air overwhelmed me. I found that I needed to get out and get a walk at least once a day. I often went out to grab lunch or dinner for my stepmother and myself, and in turn discovered an amazing bagel place near by, local eateries, awesome halal food truck, and other things. But as my dad healed, and visitors came to relieve my stepmother and I, our walks went further. I went to Lexington Ave and did some shopping for my kids. I walked to Central Park and back. Getting that fresh air was key to keeping my sanity.

Getting outsize and getting fresh air was key

4) We Checked Out Near By Festivals.

We happened to be in New York during the famous Puerto Rican Festival and Parade. When some visitors came, my stepmother and I took the opportunity to take off and found the street festival near by. We got some smoothies and roasted corn, and ate as we walked checking out the booths near by. It was a short trip but a well needed break. On the day of the parade, I wandered up to 5th Ave, and watched the parade go by for 20 minutes or so, shouting with the crowd and purchasing a Puerto Rican Flag to wave and decorate my dad’s room with.

Enjoying New York festivals

5) I Got a Break at Night.

Part of the reason that I think my dad healed so quickly is because he had a strong support network. Between my stepmother and I, he was never alone. He never had to wait for a nurse to help him get out of bed to go to the bathroom or a walk. We were constantly encouraging him to walk and would take him out, even when he was embarrassed by how his face looked. We fetched new sheets, robes, gauze pads, saline, etc. But it comes at a cost. The nights are hard. The pull out bed they have for guests is uncomfortable, the recliner works better. But all night long they come in to check vitals, flap checks, etc. Just as I’d fall asleep dad would need the humidifier or to go to the bathroom. It was hard. I don’t know how my stepmother did it every night. Most nights, I got to go back to the place I was staying. I got a few minutes to unwind, listen to my audio book uninterrupted, and sit with my emotions for the day. I’m glad I got that opportunity, but I’m also glad I got the chance to give my stepmother that opportunity as well.

The beeps alone can drive you crazy at night.

6) I Had a Terrific Support Center at Home

Living in California and supporting someone in New Jersey is difficult. And when it falls during the end of the school year madness, even more so. I am incredibly grateful I have a mother who can come in to help take care of the children, and to have a husband who joined me the first few days to support me. My husband and mother handled end of the year spirit week, dance and piano recitals, Girl Scout events, school trips, etc. Though I felt incredibly guilty to be away from my family, I am so fortunate to have the support I needed so I could take this time with my dad. I knew that the home front was secure with them in charge.

Having friend and family willing to jump in and help when you can’t be there makes all the difference

When my father was sent home, I was incredibly happy that he had done so well. But my stepmother and I were also incredibly scared. While we knew that home would mean more rest, it also meant there was not a doctor near by if something went wrong. And trust me, we did our fair share of calls to the doctor the first few days. But knowing that we had survived the hardest part was such an overwhelming feeling of relief. There is still plenty of healing to do. Soon, radiation and chemo will start again. But the tumor is out, there was no metastization, and the rest is clean up. We have faith that in a few years, we will look back at this day with joy in our hearts, as the day my dad went from cancer patient, to cancer survivor.

Now the home care begins…

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