Jotas, the last couple of months have been rough. In January of this year, my sister began her dialysis journey. No matter how much I tried to make the appropriate arrangements to be ready to support my sister and family (moving us in together, staying sober), there is never enough preparation to get you ready you for the love and heartache that comes from taking care of a loved one living with a chronic illness. I’m a fucking Virgo and I need lists. And there was no check off list on the internet to tell me and our family what exactly to expect.
You see, my sister has had chronic renal disease since she was a child. After a 1995 kidney transplant from my mother, my sister has been on survival mode. In her preteens, she started to deal with a form of epilepsy that made middle school and high school and bullying nightmare for her–ya’ll need to teach your children better manners. When she graduated high school, she wasn’t able to go to college and instead did various odd jobs that would allow her to focus on her health. This was before DACA, so it was mostly babysitting or helping my mom clean houses. Then in her mid to late 20s, issues with her anemia kept her in bed alongside some issues with her liver due to all the medication she’d been taking as a child.
Finally in late 2021, the kidney my mom gave her began to fail again and she got that dreaded call: she had to go back to dialysis.
As mentioned above, I’m a Virgo that loves a good check list. So why not write my own based in the last couple of months. Now, the following list or guide or whatever you want to call it is not a one-size fits all. This is something I’ve learned as I’ve gone through this process with my family. Perhaps tomorrow I’ll come back and be like, girl I was wrong on that one. Also, I’m not a medical expert so please do what’s best for you and your loved one.
Allow Yourself To Lose Your Shit
In order to try to not lose your shit, you just have to lose your shit. The first month of my sister’s dialysis treatment back in January, she had to go to the E.R. at least 4 times. The first time was the scariest one because she had a tonic-clonic seizure only after two dialysis sessions. Turns out seizure medication, of which my sister has been on for years, gets cleaned out during the dialysis along with all the bad stuff. When we got to the ER waiting area, which at the time was in the hospital parking lot because of COVID, she got another seizure. Usually when doctors and nurses see this happen, they have to wait it out and time it. And I know this. But when you’re seeing a doctor just standing by while your sister is seizing, YOU WILL LOSE YOUR SHIT. And I did. I screamed at the doctor. And the nurse. I told them to do something! They calmly told me that they had to wait it out. That she is in safe hands. But I had to lose my shit to calm down and remember this. After what felt like hours waiting in our car, because COVID, my sister was let out and I felt like an asshole for screaming at these people who were only doing their job. I apologized to the doctor and nurses who completely understood where I was coming from. So if anybody’s feelings get hurt while losing your shit, make sure and apologize. Not only to them, but to yourself as well.
Allow Your Loved Ones To Lose Their Shit
Without going into too many personal details, let’s just say that my mother, my father, and I have dealt with this situation in very different ways. There are way too many reasons for this, but off the top of my head is the language barrier, access to proper mental health care, access to a work permit–which access a good paying job with benefits– and just the fact that we’re VERY different people. I am experiencing my sister’s illness as a brother but they’re experiencing this as parents. As a couple. A couple that has been married for almost 40 years dealing with all the ups and downs that comes with marriage. Since I’ve began my sobriety journey, I’ve had an amazing therapist who has helped me see my parents as human beings dealing with this pain. This pain of seeing their loved one physically suffer so much and not be able to do anything but to be at her side. Arguments over how to help my sister and failed solutions to dealing with this situation have happened countless times. But we’re still working through it. Not just for my sister but for our own sanity as well. So we each allow ourselves to fail. And it hurts. And we cry. And we apologize. Perhaps sometimes is not the apology that we want to hear. But we’re trying here.
Ask All The Questions
Medical professionals are not perfect. They forget shit just like the rest of us. Except when they do, someone’s life is on the line. Throughout my sister’s lives, doctors and nurses have done their best to treat her various illnesses. A couple of weeks into dialysis, sister started having issues with her blood pressure. It became a game of figuring out what the best combination of medicine would work for her. There were many times that doctors would explain all the things, but my confused face clearly needed more clarification. A lot of these explanations were done through grainy video calls with annoyed doctors that were clearly not happy to deal with family members that had too many questions. But I don’t care. I need to remind myself to stay calm when asking these questions because my sister’s life is in their hands and that this is their job. I need to take a deep breath, crack my neck, and ask “I’m sorry, can you please repeat that again and please send instructions in writing.” Some doctors will be sweethearts about this, others will make you wonder why they chose this profession where they have to deal with people with illness and their worried families.
Create A Friendly Support Network
You know that moment when you found that group of gays that you didn’t have to explain all the gay things because they just got it? It’s exactly the same thing when you find other folks dealing with similar caretaking situations. I have folks in my life who are in similar family caretaking situations and I don’t have to explain all the things. They just get it. Sometimes I just don’t have the energy to explain to every single person in my life (loving family and amazing friends) the details of our every day life with sister. Reaching out to friends who are dealing with similar situations is so easy. A great tip that a friend of mine who is helping care with his father’s dialysis was the idea of scheduling everyone’s time in the support system while being flexible. Sounds basic, but oh my what a game-changer. After 7 months of trial and error, we’ve figured out a schedule that works for my sister and us and being open to shifting it as needed. With my sister’s permission, I’ve started to share more of those routines on my IG. So many amazing folks have replied with wonderful suggestions and just cheering my sister on from far away. This kind of emotional support is just priceless.
Feel The Guilt, But Let It Go
Listen, I’m a gay Mexican who grew up Catholic. That should give you an idea of how deep this whole guilt shit goes with me. Some of the guilt I carry with me is based on family trauma. Other guilt comes in the form of things I wish I could have done differently so that I could be in better health and be able to donate one of my kidneys to my sister. But because of my own health issues, I do not qualify and so we have to wait for another live or dead donor. I cannot change the past and my guilt does no good. Feeling that guilt is now pushing me to try to do better choices when it comes to my health. But letting go of that guilt will make a bigger difference in both the way I show up for my sister and my own mental and physical health.
Extras That Are Not Musts, But Oh How Much They’ve Helped
Working from home: I am one of the few lucky ones that still gets to work from home. This has allowed me to be able to do my job and be here for my sister in any way that she needs. But I have to be careful with this arrangement as the lines between work and caretaking can get blurred. There were days that I just couldn’t focus on work and caretaking tasks correctly so I opened up with my boss about my situation. If you’re in the position of working from home while taking care of a loved one, make sure that you’re honest about your situation. As someone with the daily fear of losing my DACA, being ashamed of asking for help at your job in these circumstances is a real struggle. But we have to push through and find that one person in our place of employment that will have your back.
Let yourself be loved, jota: Dating while you’re undocumented is already messy–we did a video about this years ago. So when you add caretaking to the mix and new family dynamics–I hadn’t lived with my family in almost 10 years–dating is not really in your radar. But it happened. And I allowed myself to be loved. I reminded myself that my current life situation doesn’t define me. That guilt returned when I started to see this person more often. Leaving my mom and my sister to go on a date felt as though I was turning my back on them. Like I was somehow abandoning my position in this family team. But per my therapist reminder, I needed to acknowledge that while I was helping my sister, I was not her savior. That I needed to take care of my needs to better show up for her. And girl, cuddling up to next to a cutie is a need that I was forgetting about.
So there you have it ya’ll. I’m not exactly sure how to end this post as I feel like I’m missing so many more things. All I know is that my sister is a fucking badass and as long as she continues to have the will power to deal with this, I will be here for her.
If you’ve made it this far and you’re also a family caretaker, hit me up if you want to chat.
It sounds so cliche to end on this but: you are not alone.