I don’t usually write about personal stuff, but the past couple of months have been rough. My mom has had some significant health issues that I’ve alluded to in social media posts. I wanted to share my experience with you all from both the perspective of a daughter and a therapist.
My mom has been having an ongoing health issue for more than 6 months, without resolve. It’s been chronic pain on chronic pain. Her primary care physician tried a few things but waited too long (in my opinion) before finally referring her to a specialist.
I asked on multiple occasions for mom’s permission to call her primary care physician and find out what the holdup was. Mom’s delicate sensibilities would not permit me to call her doctor’s office and express my frustration. So during the past 6 months, my mom has continued to deal with ever-increasing fatigue and pain.
After finally being referred to a specialist and with some diagnostic testing complete, the issue was finally discovered! She went for an outpatient procedure to try and correct it. However, it didn’t work because things were more severe than initially thought, so she was referred for major surgery.
Before her initial consultation with the surgeon, I took the opportunity to talk with her about the importance of self-advocacy. This is something that if you’ve read any of my blog articles, subscribe to my email list, or follow me on social media, you know I’m incredibly passionate about.
We collaborated to make a list of questions we wanted to make sure and ask the surgeon. I used the Notes app on my phone to create a checklist and added/removed questions as we talked.
Mom was lucky to be referred to a surgeon who has excellent bedside manner and communication, in addition to doing great surgical work. He explained the procedure and even drew a picture to improve our understanding. He patiently listened to and answered all of our questions. He didn’t make us feel like he was in a rush to leave the consultation. Honestly, it was really refreshing.
I’ve had two hospital experiences in the first half of 2021. One was for a biopsy my husband had to have done (everything’s fine). The other was for my mom’s major surgery. Each took place at a different local hospital. I can firmly say that the hospital experience with mom’s surgery was much better.
I was pleased with the focus on customer service, the structure in place for surgical services, and the attentiveness of the hospital staff to my mom’s needs. Having worked in multiple healthcare settings, I can say that I’ve seen patients wait 30+ minutes to go to the bathroom after hitting their call light.
Not the case at this hospital. They were swift about responding to mom’s needs.
No one acted like we were a bother. Mom’s surgeon checked on her daily and made recommendations on moving forward swiftly. We continued to make lists of questions for him each day, and he remained happy to answer them.
While the hospital and staff were great, the experience of having a loved one go through something traumatic, like major surgery, was incredibly stressful. I was thankful that the hospital allowed visitors to stay with the patients. They allowed one at a time, so my dad and I alternated 12-hour shifts to stay with mom while she recovered.
I know that during the height of the pandemic (in the U.S.), most hospitals weren’t allowing visitors at all. I can’t imagine how difficult it must have been to be in the hospital alone while at your most vulnerable. Being in the hospital is already hard enough, but it’s even harder if you have to be alone.
I know that many of you who read my blog have either been the patient or caregiver/ care partner in a hospital setting. As a caregiver, the feeling of helplessness I felt with my mom was awful. She was in so much pain, in and out of medication-induced sleep, and unable to even sit up on her own. When I talk about what I do to people outside of the healthcare field, I cannot stress enough the trauma and feelings of helplessness people go through during a major health event.
The Other Side
This event also gave me a chance to see therapy from the aspect of both caregiver and therapist. I’m still not sure why, but therapy wasn’t ordered for my mom, even though she was directed to get up and move, starting the day of surgery.
While the hospital staff was excellent, the nurses and most CNAs did not have time to help my mom get up and walk. They were busy with their primary duties.
I was thankful that my background as an occupational therapist allowed me to create therapy opportunities for my mom. But I also recognize that, had I not been an OT, mom wouldn’t have gotten the necessary out-of-bed time she desperately required after having major surgery.
Once the hospital staff knew that I was a trained OT, they approved me to help her get up in the hospital room and walk in the hallway. I’m grateful because I felt comfortable handling mom’s tubing (NG tube, IV pole, etc.). I know for a fact that my mom would not have gotten out of bed to walk three times a day or do daily grooming tasks in the bathroom without me there. I don’t say this to toot my own horn, but to recognize the shortcomings of even well-organized hospital systems.
But as a daughter, I still felt helpless and scared.
I just wanted my mom to get better. Having a major health event, as a patient or caregiver, is scary. You just want things to get back to normal as quickly as possible. You’re not sure what to expect during the recovery process. You feel lonely and vulnerable. And unless you ask questions, most often, people won’t explain.
Know that you’re not alone if you’ve felt this way. But also know that there are supports and resources. Reach out to friends and family. Sometimes it just helps to communicate how you’re feeling. Look into community resources for respite care or counseling. Don’t be afraid to ask questions. And if you are afraid, ask them anyway.
Thank you for letting me share my experience. It’s been therapeutic for me to write about. If you’re wondering, my mom is home now. She is recovering slowly but doing well.
I’d love to hear about your hospital experiences, either as a caregiver or as a patient. You’re welcome to email me or reach out on Instagram, Reddit, or Facebook!