In Their Own Voice: Increased Expenses and Compressed Timelines for SMI Caregivers

The Preparedness Project, an initiative founded by financial advisor Paul Peeler, has made it their mission to provide specialized financial planning support for Serious Mental Illness (SMI) caregivers and their families.

As part of that mission, Peeler has produced a variety of articles and other educational resources for caregivers and has recently started a series called “In Their Own Voice” where he interviews parents and caregivers of an adult child with a mental illness. Through these interviews, he helps to share their journey and identify themes and lessons that can help other families in similar situations.

Ann’s daughter, Phoebe, began experiencing symptoms of a significant mental disorder during her freshman year in college. The Preparedness Project spoke with Ann recently about her story.

The interview has been edited and condensed for clarity and brevity. Pseudonyms have been used at Ann’s request.

Ann, thanks so much for joining me. Regarding Phoebe, how old was she when her symptoms started and what were they?

Ann: Oh, they started before we really knew about it, but I would say at 17. The first thing we noticed was she had no energy. She loved to play soccer, but she no longer had the energy or the strength to do that. Plus, she seemed more down and depressed than she used to.

Paul: And how did it progress from there?

Ann: The fatigue got worse. The she went off to her freshman year of college and fell apart.

Paul: Fell apart?

Ann: She couldn’t think, she couldn’t focus, couldn’t get out of her dorm room for classes. She was given a prescription, which made things worse; it made her so crazy. She even told her [professor] once, and you’re going to laugh, that she totally forgot to do her homework… she just wasn’t making any sense.

At that point she just came home. This was still during her first [semester]. She could not stop shaking. She had tremors throughout her entire body, just lying on the couch for days.

Paul: With the initial medication, do you remember the initial diagnosis?

Ann: This is kind of sad, but I really don’t remember. The diagnosis was done over the phone and the doctor said, “Try this.”

Paul: From other conversations I’ve had with you, it seems that you cycled through several diagnoses.

Ann: Personality disorder was one, but we settled on bipolar 2 because of the cycles of the lows and highs. A lot of the other symptoms fit, too.

Paul: So you had this multi-year span where Phoebe was dealing with a mishmash of symptoms, basically living on your couch with crippling fatigue, and you and your doctors settling on a bipolar 2 diagnosis.

What was the financial impact to the household of all this?

Ann: It was huge. Of course, there were the trips to the psychiatrist, which was costly. The medications were costly. We went through absolutely every combination they could think of over four years.

There were also visits to the ER from side effects of her medications. Visits to urgent care for the same reason. There were also the travel costs; gas is expensive.

Paul: What was the impact on you professionally?

Ann: Because of all the stress and the wear and tear on me, it prevented me from pursuing a higher position in the company I work for or trying to find a better paying job. I just couldn’t handle going to work and facing the additional stress of doing it.

I did take a second job at a Bath and Body Works, so I’d go straight from work, change my clothes, and go over there for twenty hours a week, working on Black Friday and Christmas and all that stuff, just trying to help make ends meet.

My husband is self-employed in the trades. Due to his flexibility, he did most of the driving to doctor’s appointments. He would have to stop working at whatever job he was on, get Phoebe across town to her appointment, then back, then get back to the job if time permitted.

Paul: Outside of the outlay of money, is it your sense that this situation has set you back in your preparation for retirement?

Paul: That’s an emphatic yes.

Paul: Tell me more.

Ann: Things were already tight financially, even without Phoebe becoming ill. Without Phoebe’s illness, pursuing another job would have been on my agenda. It would have given us more to save for retirement and a higher Social Security payment.

Plus, since Phoebe wasn’t able to finish college, her earnings are lower than they otherwise would have been. This means I still cover some of her costs that aren’t covered by insurance.

Paul: We’ve also had conversations about Social Security disability, that you thought was a slam dunk at the time.

Ann: It was very frustrating and discouraging… in their procedures and criteria, it’s pretty impossible, even though Phoebe was functionally disabled.

Paul: Do you fault more the disability criteria or the judge’s application of that criteria?

Ann: The criteria itself.

Paul: Anything else you’d like our readers to know?

Ann: I’d just like to reiterate the financial implications of having a child with a mental disorder. It affects your professional life because it drains you [and prevents you from] really giving yourself wholly to your professional life.

The doctor’s expenses, the medicinal expenses, the travel expenses… they add up pretty quickly. And the future of your child is hindered because it’s much more difficult, if not impossible, in many situations to graduate from college and advance themselves to a situation where they could sustain themselves without the help of a parent.

Paul: As this story unfolded there was a surprising twist. Can you go into that?

Ann: It was a good twist. It turns out we don’t think there was ever a mental illness.
Several years in we discovered an infestation of black mold in our home. After we had it remediated, she was able to see a specialist that was able to clear the toxins and accumulation of medications from her system (at great expense, I might add). She also moved out of our home, started taking supplements, and started doing much, much better.

She is now employed full-time and has reached a management position with her employer. She’s doing great.

Paul: That’s great news!

Ann: Yes it is.

Paul: Ann, thank you for your time today, and for sharing your story.

Ann: Thank you.

We find that Ann’s story has themes that are repeated among most SMI caregivers.

First is the theme of increased expenses, both immediate and ongoing. We also see the theme of compressed timelines, as Ann and her husband don’t have the time to recover financially as they prepare for and enter their own retirement. This compressed timeline is exacerbated by the lack of emotional bandwidth and energy, which left Ann unable to pursue and secure a higher paying position.

If you are finding yourself grappling with similar issues, don’t go it alone. Reach out to The Preparedness Project today for additional support.