I lost my mom this past May, after a decade long battle with cancer and various diseases and complications resulting from cancer. The seven months before her death were the most challenging months of my life: more challenging than studying for the LSAT, more challenging than all my time in law school, more challenging than studying for the California or Colorado bar exams, more challenging than recovering from mono, and more challenging than losing 100lbs.
My Caregiver Journey:
In early October, after we found out that my mom’s brain tumor was active again, I became one of my mom’s primary caregivers- a role that I admittedly did not want to take on at any point in my life. I was pouring her pills, taking her to doctors appointments, sleeping in the living room with her, making meals, etc.
In mid-October, when my mom fell down the stairs in my parent’s house and entered the hospital, I became her advocate. I fought with doctors about proper procedures, with nurses about quality of care and wait times, and with administrators about their lack of appropriate and adequate staffing. I researched nursing facilities and hospice care programs, went on-site visits, and made probably hundreds of phone calls.
From October 2018 until December, I stayed with my mom who was often confused or disoriented so she wouldn’t be alone, afraid, or susceptible to improper conduct by some of the medical professionals (and I use that term lightly) whom we encountered. I slept on a cot in the hospital, nursing home, and then at the hospital again. Which meant I slept in my bed a maximum of 1-2 nights week.
During December 2018, my mom was living at my sister’s condo, receiving home hospice care. My sister and I became her primary caregivers while we looked for some full-time help, which we never found. I was sleeping on a mattress we put on the floor of my sister’s bedroom, getting up every 2-3 hours because my mom needed something, and commuting from South San Jose to Redwood Shores to train my clients because I needed to have an income and keep my health insurance.
In January 2019, we moved my mom into a hospice facility; a heart wrenching and slightly traumatizing experience as it was the absolute last thing my mom wanted. We argued about it profusely. She needed far more care than my sister, and I could provide her at home. From January until March 2019, I spent roughly five nights a week at the hospice home, I showered at the gym where I work and lived out of my car.
Finally, in March 2019, we hired a private overnight caregiver to stay with my mom every night; and, for the first time in 5 months, I slept in my bed for two nights in a row. During this 5 month period, not only was my sleep non-existent, I also wasn’t working out, wasn’t eating healthy, was living on Diet Coke again, rarely saw the sun, skipped doctor’s appointments, dentist appointments and for the most part all other personal appointments, couldn’t and wouldn’t commit to social plans, I cancelled trips, and for the most part put my own life entirely on hold.
I Don’t Have Time To Do Self-Care:
If I had $1 for every time that someone told me that I needed to take care of myself, I wouldn’t have to pay my rent for a year (and living in the SF Bay Area, that’s a lot of moola!). Friends, family, coworkers, clients, all said variations of the same thing: “fill your own cup”, “put your own oxygen mask on first”, “you need to make yourself a priority”, “take care of yourself or you are going to end up worse” etc. etc.
I know the exact phrases because I have said them myself, over and over and over again to friends, family members, clients, coworkers, and relative strangers. I have preached these words on my social media channels, my blog, and my newsletters.
But when it comes down to it, when you are in the thick of things as a caregiver, advocate, or just close family member of a terminally ill and dying loved one, self-care, true SELF-care becomes impossible. I suspect that won’t be a popular opinion, and yet it’s the truth, or at least, it’s my truth.
I had many friends, who on top of telling me to take care of myself, also told me to let them know if I needed anything or asked me what I needed. While their intentions were good, kind, and thoughtful, the execution of their offer of support was wholly ineffective. My energy was so consumed by caring for my mom that not only was I not taking care of myself, I couldn’t even determine or communicate what it was I needed help within taking care of myself, (spoiler alert: I needed help with everything!).
I also had a handful of friends who tried to encourage me to take care of myself by continually inviting me to social gatherings of some sort or another or to engage in self-pampering activities, without the understanding that I was unable (and more likely unwilling) to commit to anything in my personal life (no dinners, spa treatments, movie dates, hikes, etc.) because I had no idea what was happening from moment to moment. Again, I know their intentions were good, but you know what they say about good intentions.
And then there were the unicorns, the people who took the “self” out of self-care, who took care of me so I could take care of my mom. I had a friend who flew up from Southern California and stayed with me for 2 days, during which time she cleaned my bathroom from top to bottom, made all our meals, washed the dishes and cleaned the kitchen, sat with my mom so I could deal with some other things, and went shopping with my dad. The same friend also came up a second time and helped cook Thanksgiving dinner for my family and brought it to the hospital and she came a third time and did her best to make an enjoyable New Years’ Eve celebration at our home.
Another friend rallied my coaching team to fundraise enough to send me three weeks worth of Freshly meals because she was long-distance and couldn’t cook for me herself. Another friend sent me a constant stream of memes, gifs, hilarious/ridiculous stories and answered my phone calls and text messages at any time of the day or night. Another friend sat with me for hours at my mom’s bedside, asked her parents to go over to my parents’ house and check on my dad when I couldn’t reach him and sent me funny photos of her 2-year old.
These individuals took the “self” out of “self-care” for me.
On the regular, self-care, self-pampering, and self-love is critical; however, there will come a time in your life when you need people to take care of you because your energy, ALL your energy, is elsewhere. Fostering these types of relationships, the unicorn friendships, is essential to your survival and sanity.
When you have the opportunity to be the unicorn friend, be the unicorn friend. Book the flight, cook the meals, clean the bathroom, take the kids to school, keep sending the texts. Just show up.