This post was written by Sarah Bramblette, MSHL, in recognition of National Family Caregivers Month. During November, we take time to recognize and give praise and support to the 78 million people who dedicate their time, often unpaid, to caring for a family member in need.
Ms. Bramblette lives in Miami, FL, and serves on OAC’s National Board of Directors in addition to OAC’s Access to Care Committee and Medical Tourism Task Force.
The Sandwich Generation
The sandwich generation refers to people who find themselves sandwiched between taking care of their children and taking care of their aging parents at the same time.
I never thought I would find myself part of the sandwich generation because I don’t have any children – and yet, in a similar circumstance, I find myself managing my own healthcare as a person with the chronic disease of obesity while also taking care of my mother who is affected by obesity, too. It’s a natural progression because out of all my siblings, I was the best prepared due to all the years I’ve spent navigating the healthcare system to manage my own chronic illness.
For the most part, my mom can manage things on her own. After all, she’s a retired registered nurse, and before she even earned that degree, she spent several years taking care of my sister who had terminal aplastic anemia.
My mom also raised me to advocate for myself, ask for what I deserve, and be persistent with what I need. She was always there for me when I needed her after several surgeries, so of course, I’m going to be there for her when she needs me.
Who’s Caring for Whom?
My mom and I joke that when she moved to Florida with me in 2016, who would take care of who? Some of my friends thought it was nice that my mother, being a retired nurse, was going to move in with me and take care of me. But with my mom’s age, I knew it was likely going to be the other way around and that I’d be taking care of her. Despite both of us being on Medicare, neither of us at the time qualified for additional help.
Usually, when people think of caregivers, they think of hands-on caring. My mother could care for herself. I would cook meals, take care of basic household chores, and do the shopping while she would help by folding laundry. She did all her own personal care and would go out by herself to the salon, doctor, and dentist appointments. Whenever I traveled out of town, which I frequently did, she could manage by herself. She could walk on her own but often used a walker for stability and security.
While my mom was independent, my help was most often needed to navigate the healthcare system. People would lie to her. For example, one time, a vendor told her that her mastectomy bra would cost more money because of her larger size. That didn’t make sense to me, and if it were true, I was prepared to ask Medicare to change our coverage to accommodate larger sizes. We went back and forth with Medicare on the phone while asking around if this or something similar had happened to anyone else. I eventually called the vendor and asked for paperwork to prove that my mom was required to pay more, and how quickly their story changed! There was no longer a balance that my mom owed.
What do people do who don’t have a daughter like me who understands these types of things and can make a phone call on their behalf?
Being a Caregiver During COVID-19
Now with COVID-19, a lot has changed with my mom’s care. It was a little more than a year ago when she had an acute episode of respiratory failure. She’s had an unexpectedly long recovery, made even longer by the current pandemic. After months in the hospital and finally being able to breathe by herself, she was transferred to a long-term care facility for rehabilitation the night before our state went on lockdown.
Despite not living together during this time, my caregiver responsibilities have increased significantly. While she is completely capable and competent enough to make her own medical decisions (her doctors like to remind me), she is also competent enough to know that I know more about the system than she does – or even some of the administrators at the facility. She also still has a trach and is unable to speak, so I have to be her voice.
However, this is made more complicated by communication barriers, and I also have to remind the staff of her abilities. On several occasions, I was told that her rehabilitation expectations are limited due to her weight, to which I had to remind the staff that she was mobile with a walker at a weight 150 lbs. higher than her current. But when I’m not managing her care, I get calls about missed appointments and I don’t even know who made them. Other times, there are wasted appointments because she didn’t even have an item that the doctor ordered because the staff didn’t get it done.
It’s all very frustrating because I feel responsible for making sure my mom gets the best care she can – but in this current situation, I feel powerless. That adds to the stress of being a caregiver.
Family Caregivers Need Care Too
I certainly need good coping skills to manage the stress of being my mom’s caregiver while I continue to manage my own health during the pandemic. I have experienced limited access to care and increased complications from my chronic health conditions. Our goal is for mom to come home, and in considering that next step, I have to recognize my own limitations and make sure I get help with her hands-on care needs. As advised when flying, I must secure my own mask before helping others.