In honor of the AARP’s Disrupt Aging campaign to support and bring awareness to millennial caregivers, I’m writing a bit about my experience being a caretaker for my mom (together with my uncle who became her legal guardian) before her death.
My mom had a manic episode when she was 56 late at night in New York City in 2005. My two brothers and I had to chase her through the subway from Manhattan to Queens and have her restrained and committed because she ran away from us and was afraid of us. She had been living in Florida for a few years before the episode because of my parent’s divorce, and I was in college in Baltimore, so I hadn’t seen the full progression of her disease, though I knew things were not right.
After that night, she then spent five years in the mental healthcare system, in and out of a few different inpatient programs and took her life when she was 61. The experience of becoming a caretaker and navigating the mental healthcare system for the first time when I was 20 and still away at college in Baltimore while she was in New York, and then in Boston was very stressful and scary. I felt like I had no idea who to call to fully understand what was going on at these facilities, what all of the treatment options were, what her status was, how she was feeling, whether she had everything she needed to feel comfortable, whether she could sleep, etc. Most of all I wanted to reassure her that we loved her and everything was going to be alright, but it was very hard to get her on the phone and when I did see her, she was on so many drugs I wasn’t sure she could really understand what I was saying or if she believed me.
When I first visited her at the New York City mental health facility the police took her away to, it was terrifying. I remember bursting into tears and begging my dad (who had become her ex-husband two years before) when I got home to get her out of there and pay more for a better facility. I now realize how lucky we were to even have that option. I feel even luckier that he did get her into a better facility, at a much higher cost. I can also remember trying to keep track of all of the paper work and talk to each new doctor and make sure that each psychiatrist was in touch with the therapist seeing my mom, since I knew there was an underlying trauma component and wanted to have more than just a pharmaceutical approach to healing her brain. I was also trying to keep track of blood work that had been done and medications she had been on and side effects she was experiencing. It was a lot, and each new place felt like starting over.
In inpatient mental health programs, a lot is being given to and done to the patient without the caregiver’s knowledge (especially since my mom was in her 50s). I wanted her to feel that we were doing everything we could to get her better and get her out of these facilities but the reality was, it was very hard to figure out what those options even were, what was being done and we were all scared of having her come off the medication and experience another manic episode without a different solution in place.
At the same time, we knew the drugs weren’t a sustainable solution since there were so many side effects and her quality of life on them was nearly as bad as the mania itself, just in a different, more placated form. At the end of her life, she was on medications to mask her manic symptoms, but she never healed the condition, as none of her providers identified the root cause or causes, or tried any other treatments aside from drugs. She felt so awful on the medications that she didn’t feel she was really living and eventually decided it was enough.
Caretakers need so much support because they are often working full time jobs and need those jobs to pay for some of the care that insurance doesn’t cover, so they feel tremendous pressure. They are often doing the caretaking work on the side or at night or on the weekends, or have to leave work to accompany their loved one to appointments or talk to doctors on the phone at work during the work day. They might also have other people to take care of (like a child) if they are caring for an adult parent or a spouse, or in my case I was helping to get my younger brother into and then through college as he was having a tough time academically at the same time as trying to care for my mom, and graduate from college myself and get a job.
Even with all of that on my plate, I felt lucky to not have a child or pet of my own at that time to take care of as well. There is an overwhelming sense of burnt out, of having no time to do anything for yourself and when you do get a moment to think, you’re worrying about the person that you love who is sick and struggling. And if you do take time for yourself to go to a party or do something fun, you feel guilty because you know they are struggling and need you. I was very lucky that paying for her care was not one of the things I had to worry about, but most caretakers are up all night worrying about the medical bills or medical debt as well as their loved one.
I think one thing that can make a tremendous difference for caregivers is a workplace program or protocol similar to maternity leave that puts structure and support in place when someone becomes a medical caregiver to give them the time and flexibility that they need to be there for their loved one, while also keeping their job, without fear of getting fired or looking lazy or uncommitted. I also believe having any sort of established community or support group can help, something informal like a friend group or more formal like Alcoholics Anonymous or a church group, where people can help out the caregiver with chores, lend a comforting shoulder to cry on, or just listen since the process of unloading or “clearing out” everything you’re dealing with can be very therapeutic. Inversely, not getting out what you’re experiencing can result in dangerously high levels of cortisol and stress which can lead to a variety of chronic health conditions for the caregiver.
I wrote this post in partnership with the AARP for their Disrupt Aging Campaign, but all opinions are my own. The AARP has published resources for a family caregiver action kit, as well as research for millennial caregivers, so please do check those out if you are a caregiver or know of one who needs support.