Caregiving

It’s an interesting place to be when you’re an adult and your 72 year old mom is your main caregiver. At this point in life, most other folks are married so they have a spouse that they’re able to rely on for caregiving. I haven’t been quite as fortunate in this department to have a partner willing to take care of me “in sickness and in health” yet, so all of this has fallen upon my family. 

So often we focus on the sick patient (me), but we often forget that caregiving is a thankless job. Caregiving is one of the hardest positions to be in though because the caregiver is aware of what is going on, often times more than the patient. From a patient perspective, during the worst part of transplant, I was sedated on a pain pump and pretty out of it when my mucositis was incredibly painful. Again, when I was re-hospitalized with BK virus for two weeks, I was also sedated on a pain pump. My family, on the other hand, was very aware of all the pain I was in, and I can’t imagine how painful it is to watch someone you love go through something like this and feel completely helpless.

I’m extremely lucky to say I have 3 adult family members that are willing to drop everything and come help me in times of crisis. It’s truly been a team effort to get to this point, and I don’t know how I would have gotten this far (day 68!) without the support of my family.

I don’t think a blog post adequately can describe what it’s like to be a caregiver, but I’ll attempt to try.

My mom and dad have been here at the NIH with me since we arrived on April 11th. My mom has been ferociously cooking fresh meals for breakfast, lunch, and dinner everyday that I’ve been out of the hospital to ensure that I keep my weight up to help with healing. When my mom isn’t cooking, she’s helping me with flushing my PEG, preparing my nasal rinse, or preparing for the next meal. Since I’m not supposed to be cleaning, my mom will also clean my bathroom every other day and wash my sheets twice a week. My mom also helped me shower everyday since May 14th since my central line required that I didn’t get it wet. I’m happy to say since I got it out earlier this week, I was able to take my first solo shower in two and a half months! Celebrate the little wins.

My dad has been doing the laundry for the family. Since I’m on hazardous drugs, we’ve been instructed to wash my clothing and towels in a separate load than everyone else’s clothes. My dad will do my laundry everyday after I shower in the evening. My dad also takes out the trash everyday at the apartment, and in the morning, my dad will walk to the Trader Joe’s or Harris Teeter (aka Kroger) down the street to grab groceries that my mom has instructed him to purchase.

My brother, Gordon, arrived a few weeks later on April 27th and went back back home to NorCal on Saturday night, only to be delayed out of DCA, missing his connection to Sacramento, and stuck in Seattle overnight. He didn’t get home until Sunday afternoon. In addition to donating bone marrow to me, Gordon has done a lot of the literal heavy lifting. Grocery shopping has been one of the biggest helps. He’s been able to get watermelons and gallon waters for me. Gordon has also accompanied me to clinic every time I’ve gone. Since transplant, I’ve been going to clinic twice a week on Mondays and Thursdays to see my transplant team, but some weeks, I’ve had to go to the NIH on the other days to get other tests run like ultrasounds or CT scan. Gordon has also encouraged me to take daily walks so we’ll try to walk around downtown Bethesda or go to the gym in the afternoon. He also helps me with my medications – chemo brain is a real thing as I feel like I have one functioning brain cell these days. 

When I was in the hospital, my mom and Gordon would be an extra nurse to me. They would wipe down every surface of the room every morning since I am so immune compromised right now. This includes the blood pressure machine, the pulse oximeter, the IV pole, the bathroom toilet, sink, any and all surfaces. They help with all the little things too. When I was in the hospital, I was attached to an IV pole with many lines coming out from me, so even just a “hey can you hand me the chapstick? can you bring me a cup to rinse my mouth? can you grab a tissue?” was so helpful. Of course I can ring a bell and ask my nurse to do all of these things, but I’d feel too bad doing so. If I were in the room myself, I’d have to unplug myself from the IV pole and walk over to do all of these things myself. When my mom would shower me in the hospital bathroom, Gordon would change my sheets for me and make the bed. 

I guess it’s really hard to articulate all the little things you take for granted when you can’t do much of your activities of daily living.

It really takes a village to get through something like this. Back at home in Seattle, Neesha and Forrest are loving on Maple. They have been wonderful about sending me videos of Maple playing with their dog Neville or pictures of Maple, Neville, and Coco being the neighborhood watch. My friend Beth has been grabbing my mail and running the minivan every week. My neighbors have been watching over the house and mowing my lawn for me. Ayae, Beth, and Cameron have helped me with the pest problem that I’m dealing with at my house. And so many friends have reached out with encouragement and love and cute pick me up gifts. I’m thankful that in the lowest points of all this, I have a village cheering me on.