Caring for My Disabled Mother Devastated My Finances

Before my mother’s aneurysm burst and she was left paralyzed from the waist down, I was debt-free. Over the next five years I took care of her, I spent everything I had.

When she died, I owed $40,000 on five credit cards.

That doesn’t include the unpaid time off from work (because I used up all my PTO). It doesn’t include the private nurses (who I paid for in cash). It doesn’t include dining out and take out because I didn’t have the time or the energy to cook.

When my mother died this past August, I had no idea how much I actually spent caring for her. It’s now three months later, and I still don’t know exactly. But I wouldn’t be surprised if it totaled $80,000 – which is the average spent on someone like my mom, experts say.

One of those experts is Jenn Hatfield, a manager at the Christopher & Dana Reeve Foundation, which started after Superman actor Christopher Reeve was paralyzed from a horseback riding accident. Hatfield has heard horror stories from thousands of families about the high costs of caregiving: “It’s kind of scary how expensive it is.”

What may be even more scary is how many people it affects.

According to the National Paralysis Resource Center – an educational support branch of the Reeve Foundation – nearly 1 in 4 Americans serve as a caregiver for a family member. Out of that group, 1 in 5 can’t afford it.

Hatfield, who has been with the Reeve Foundation for two decades, points out that caring for their loved ones creates “a significant financial strain on the family.”

Cost of care

I never thought that in my mid-thirties I’d put off having a child of my own so I could afford diapers for my adult mother. Her supplies ranged from simple toiletries to obscure vitamin supplements, costing about $1,600 per month.

The weekly shopping list included:

• Disposable bed pads – $40
• Nutrition powder – $25
• Groceries – $150
• Adult diapers – $30
• Diaper rash cream – $15
• Meals for nurses – $100
• OTC meds – $40

And I haven’t mentioned the $1,800 in rent, which was barely covered by her Social Security Disability benefits. My family pitched in to help with utilities like electric, water, cable, and her cell phone. A crowdfunding campaign helped cover specialty medical equipment needed for her physical therapy.

I’m sure I’m leaving out other expenses. I was too busy changing her diapers and emptying her catheter bag to keep track of it all.

But one of the biggest costs was paying for nursing.

She needed it, because my mom couldn’t stay in the hospital forever.

We’re home. Now what?

Two months after recovering from open heart surgery, the hospital case manager told my mom she’d be discharged. I pleaded with the woman, but the facts were the facts: My mom’s condition stabilized, and it was time to figure out a long-term living situation.

I was suddenly left alone to handle my mom’s intense care schedule.

From doling out medications to preparing meals to handling her personal hygiene, I needed help and fast.

I got her on a waiting list with the Florida Department of Elder Affairs, which administers care services for the aging population across the state. My mom was only 56 years old when this happened, but she qualified through their Aging and Disability Resource Center.

“The biggest issue is people having trouble tapping into some of the state-based services that might be available to them. It’s a very time-consuming process,” Hatfield says.

It took three months of research, phone calls, paperwork, and follow-ups until my mom was finally approved for home healthcare. Finding a reliable nurse was my next uphill battle.

Hours were spent training new nursing assistants who didn’t show up the next day. I filled in whenever we didn’t have anyone. It was another three months working with 20 different nurse aides before we found someone who stayed.

During my call with Hatfield, she was in no way shocked to hear about the gaps in my mom’s care.

“Nurses often end up leaving to go to another job,” Hatfield explains. “So there’s also that issue of always making sure that the care is in place. That causes a general stress on the family as well.”

While we received 40 hours a week with a nursing assistant, that was not close to being enough. My mom needed round-the-clock care. And because I bore the brunt of it, we paid cash to any nurse willing to work outside of the hours covered by insurance. At one point it was as expensive as $2,000 a month.

Stress pushed me to my limit, and it made me spend even more.

“Emotional hit, financial consequences”

One evening after transferring my mom to her wheelchair, then carrying her into the shower, washing her hair, and putting her back in bed only to have to clean her again post-bowel movement, I ate and drank my feelings at a fancy restaurant.

The meal was a temporary fix, but the $100 bill added to the damage on my credit card.

Stephen Lea confirms with Debt.com that emotional spending is common for the over-stressed caregiver. And he should know. For 30 years, Lea was a professor of psychology at the University of Exeter in England. He performed extensive research on the psychology of debt. If anyone can validate my spending psychosis, he can.

Lea also considers the accidental overspending that happens when you’re not thinking clearly.

“There are a lot of financial costs that fall on you,” says Lea. “So there is a massive emotional hit. And the practical hit, and practical things nearly always have financial consequences.”

Getting used to a new shopping list can be hard, so we end up buying way more than we need. Lea refers to it as “surplus buying.”

For me, that meant buying everything my mom used to like along with new stuff she needed as well as random gifts to cheer her up. I also gave in to impulse purchases to make myself feel better (FOOD, WINE, BEER. REPEAT.).

It’s hard to be practical with money when stress fuels every decision you make.

Caregivers tend to leave logic out of financial judgment, says Dr. Ralph E. Cash, psychology professor and director of the School Psychology doctoral program at Nova Southeastern University. He describes how we lack reasoning when navigating this huge responsibility.

“Our brains very often are left behind in the decision-making process when we talk about loving and caring for someone you love.”

As caregivers, he says we “sacrifice ourselves in terms of our energy level, we sacrifice ourselves in terms of taking good care of ourselves physically, we sacrifice ourselves financially, we sacrifice ourselves in so many different ways.”

When I ask him what the solution is, Cash leans on a classic metaphor.

The airline principle

That spiel that flight attendants give before takeoff applies to more than just airline passengers – caregivers need to put their oxygen masks on first before helping others.

I wish I did.

My credit card balance is proof that I didn’t handle this well. A lot of people don’t. According to Hatfield, “Many [caregivers] use their credit cards as an only resort, resulting in debt.”

When you’re faced with the critical task of taking care of someone, you usually do (or buy) whatever it takes to improve their situation. This self-sacrifice almost always ends up backfiring, continuing a cycle of financial neglect.

Cash and Lea both provide valuable guidance. I wish I knew them when I was in the thick of it. If I could go back in time, here’s what I would’ve done differently:

• • Leave emotions out of it: Cash says, “Take a few deep breaths, step back from it, and analyze rationally, rather than with our hearts or our guts.”
  • Buy less stuff: Lea says, “If you’re not the person who’s been used to doing the shopping, you’ve got to learn how to do all of that.”
  • Seek professional advice: Lea says, “A paid financial advisor may be the right answer, or the right kind of lawyer. It’s sometimes a case of unlocking financial resources.”
  • Ask for help sooner: Cash says, “If you can, rope other people in so you’re not left solo. Share the load.”
  • Deal with stress better: Lea says, “When you’re in the hole, you believe that there is no way out of the hole, and furthermore, that you’re not worthy to be helped out of the hole. And neither of those things is true.”

Lea is right: We are worthy, and there is a way out – if we make ourselves a priority.

“I think there has been an increasing tendency to recognize the needs of carers,” Lea observes. “But the last people to do that are the carers themselves because things happen very quickly, and you get trapped in a situation. And you can’t think your way out of it because people often feel, ‘This is my duty.’”

My new sense of duty is now to myself.

I plan on using the money I inherited from my mom to pay off my debt. Not everyone gets that chance for a clean slate, and I would give it all back to have one more day with her. But I think she would want me to finally put my own mask on and breathe.

After that, maybe I can start rebuilding everything else.

The Christopher & Dana Reeve Foundation is committed to improving quality of life for those living with or impacted by paralysis. If you are a caregiver or know someone in need of support, resources, or mentorship, connect with an Information Specialist at the National Paralysis Resource Center by calling 1-800-539-7309. 

Has caring for others pulled you deep into debt? It’s time to put on your oxygen mask. Call Debt.com at (833) 237-0255 and get financial peace of mind today.