Finally, I can see the light.

I’m slowly but steadily climbing my way out of a mountain of debt that I accrued as a caregiver.

The financial burden of being a caregiver can be devastating, but it is often overlooked. We don’t like to talk about caregiving in dollars and cents, because acts of compassion are priceless, right?

Well, not quite. Doing the right thing morally can destroy you financially.

Caregivers shouldn’t be forced to choose between family duty and financial stability. A new University of Pittsburgh study, “Addressing the Needs of Caregivers at Risk: A New Policy Strategy,” outlines the grim realities caregivers currently face, while offering suggestions for policy improvements. According to the study, family caregivers provide over 90 percent of the long-term care for 12 million Americans, yet lack access to meaningful financial resources and helpful programs like flexible working schedules.

In five years as my parents’ caregiver, I racked up over $20,000 in credit card debt. I burned through my modest savings and drained a Roth IRA before tapping into my parents’ savings. I was a few months away from tapping into my 401K before my financial situation began to improve.

In many respects, I was fortunate.

Initially, the additional expenses I incurred as a long-distance caregiver were manageable. My parents retired to New Mexico and I live in Georgia. After my father was placed in a memory care facility, I paid for what the monthly fee didn’t include, such as adult diapers and nutritional drinks. Even with my father’s Teamsters pension and Social Security, there was not enough to cover the over $4,000 monthly facility payment, so after exhausting dad’s limited savings, my mother was forced to dip into money she had won from a lottery jackpot. After taxes, the amount totaled about $60,000, and over half was spent on my father’s medical care.

Without that windfall, I have no idea how we would have paid for dad’s care. My dad was too much too manage at home, and the condo, which my parents were still paying for, was not suitable for a person with dementia. Like many seniors, my parents’ savings were meager and they lived modestly on their retirement benefits. I could have shouldered some of the financial burden, but it would have stretched my budget thin.

My father died five days before Christmas in 2011. While of course there was mourning, there was also a sense of relief. My father was finally free of Alzheimer’s grip, my mother still had enough money to live on, and I would be able to pay off my modest debt quickly.

Six months after my father died, my mother became ill.

In a stroke of terrible luck, I had just started a new job, which wiped out any opportunity for Family and Medical Leave Act benefits. Even with FMLA, my mother’s slow and bumpy recovery would not have covered the time that I would have required to be away from the job. Don’t assume FMLA is a given; the law comes with many rules and restrictions.

My mother was diagnosed with stage III colon cancer and required emergency surgery. Her recovery was going to require me to be present as her full-time caregiver, so I quit my new job. The job was not structured in a way that would have allowed me to work remotely on my own schedule, so I felt I had no choice but to resign. I had no idea how I was going to take care of her and pay my own bills, but there was little time to dwell on my financial future; I was in pure, raw survival mode.

Like many Americans, I had nowhere near the six months to year of living expenses in savings; I had a few months at best. I take responsibility for that, though I was using any extra money I had to pay off debt accrued over my father’s final year of life.

That summer, I essentially lived on credit cards. My mother was hospitalized an hour and a half away from her home and remained there for two months during her recovery. As my mother’s designated health care agent, I spent many nights in nearby hotel rooms in order to be readily available as medical issues would arise without warning. I also paid for my mother’s medical expenses that Medicare didn’t cover, such as the daily coinsurance for the skilled nursing facility that kicked in after day 20.

My mother returned to her condo in the fall of 2012 and I stayed with her for a few months to help her get situated, scraping together spending money by writing articles. I am fortunate that I have a skill that allows me to work remotely and earn a bit of income and strongly suggest that other caregivers tap into their own skill sets. How much could you earn if you had to move at a moment’s notice and couldn’t maintain a traditional  job?

At the beginning of 2013, I was cautiously optimistic. My mother was doing great and I was back home in Atlanta. Surely I would find full-time employment soon, I have always been an excellent employee.

Boy was I wrong.

The brutal job market was for real and there were plenty of talented journalists seeking employment. As the months wore on, my despair grew. I felt guilty using my parents’ savings, and I didn’t want to leave my mother without a nest egg, but I had a mortgage and bills to pay as well. I used as little savings as possible and wrote as many articles as I could to stretch my income. Finally, at the beginning of 2014, I found steady part-time work which a few months later, turned into a full-time gig with benefits.

I began to pay down the debt once again. My mother started to experience abdominal pain in the summer of 2014 which became debilitating over the next several months. Doctors were never able to determine with certainty, but it was assumed that the cancer had returned. I visited more often and made sure my mother had needed supplies shipped directly to her home. I paid for private caregivers to assist my mother with daily tasks as she teetered on the edge of independent living, fearing a nursing home was in her near future.

While emotionally devastating, there was little financial impact this time because my current job allows me to work remotely. That flexibility is huge for a caregiver. I spent the last month of my mother’s life in New Mexico serving as her primary caregiver until she died in May 2015.

I know I was lucky. I was never late on a mortgage payment, though my attempts to refinance due to hardship were rejected. My home didn’t go into foreclosure and I didn’t have to declare bankruptcy. The lights never got turned off and I never went hungry. My 401K, while underfunded, remains untouched. But debt, like grief, lurks like a dark cloud over my life.

The University of Pittsburgh study concluded that the current climate that family caregivers in America face is unsustainable. Family caregivers provide a tremendous resource to this country, providing an estimated value of approximately $500 billion, so caregivers should not feel guilty when accepting government aid. The study suggests options such as tax breaks, grants, insurance benefits and greater access to respite care and flexible work schedules.

The more we share our stories, that caregiving isn’t just some selfless act carried out by angels on earth, but a physically and emotionally draining job with potentially devastating financial consequences, the more awareness will be raised. Legislators need to recognize that aging and caregiving are urgent issues that America must address.

Written by Joy Johnston
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.

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  1. Agreed. Literally in thousands of dollars of medical debt and now have destroyed credit due to not having insurance while being a caregiver – live in a state that has not expanded medicaid. Even though I’m a caregiver of an adult, because I’m a woman who is not a caregiver of a child or pregnant I cannot get medicaid. The dismal pay rate provided via the insurance to be a caregiver only covers 20 hours a week (20 hours a week? Try 20 hours a day. One day I counted a day full of caregiving tasks that left me on and off my feet for about 19 hours in one day. My feet were so sore with blisters forming I had difficulty walking for days.).The pay is not enough to pay or even qualify for insurance in the market. With wrecked credit good luck to me.

    There have been times I’ve literally had to choose between food for myself and my family member’s medical expenses. Last night I was exhausted. Low on money, I made myself a pack of spaghetti noodles that I mixed with some leftover other food to last myself for the week. After I shut the stove off and had a plate I sat down on the couch. I fully intended to put the pan in the fridge within a couple hours after it had cooled sufficiently. I was so exhausted though after caregiving, I fell asleep on the couch (didn’t even realize I fell asleep) and woke up to obviously spoiled food. I now have no food to eat for the week, and no money to buy food. Can’t take out an Amscot loan, because I already did to cover food and other expenses the other week. Oh well, right?

    I’m a former star employee. I literally won an award at one company for outstanding performance. Yet, most companies are inflexible and do not offer remote working options. The family member I provide care for who is disabled, is on a lot of blood pressure medication; and living with congestive heart failure makes her prone to spontaneous episodes of passing out. I need to be present to intercept should she have an episode. Caregivers NEED REMOTE WORK OPTIONS WITH FLEXIBLE SCHEDULES WHEN NEEDED. I’m such a dedicated employee that when my relative’s health started to really go down hill, when she was in the hospital at one point I sat there with my laptop getting work done for my then employer. SO MANY PEOPLE HAVE TO LEAVE A FORMAL ON-SITE WORK ARRANGEMENT TO BECOME CAREGIVERS. Even though I’m incredibly accomplished, with multiple certifications, a phenomenal work ethic, and professional references to prove it, I cannot find remote work, Unfortunately, being a caregiver also means employment gaps. Then you have out of touch hiring managers who automatically look at any employment gap as a red flag. A lot of these recruiters are young and don’t understand or consider the reality of what the mid to latter end of a human’s life trajectory may look like especially for a woman. Women historically have had to leave work to tend to caregiving needs regarding children or aging parents.

    Some people say things like “oh have a relative help”. In my case, I’m the only living family the family member has nearby. Or, “oh, just put them in a facility.” People don’t understand that if a person doesn’t want to go into a facility they cannot be put there unless you can legally prove cognitive decline to the point where a person cannot make their own decisions. Often caregivers with family at that point, find that their relative is uncooperative and the only legal recourse is to hire a lawyer (not affordable for the typical financially uncompensated or poorly compensated caregiver). My case is different. My family member is an immediate family member who became disabled at a younger age, with a plethora of serious medical issues. She is mentally young, and not at the point psychologically where a nursing home would be the right fit for her. Additionally, she doesn’t want to be in a nursing home and is not into the fraternizing environment care facilities often push on residents in effort to get them to be “social”. Also, I would never do something to a family member I love like place her in a home when I know it would break her mentally and emotionally. She already has enough challenges physically, and is often psychologically drained due to all the medication and medical care she has to go through. She doesn’t need psychological heartbreak on top of her already incredibly depressing and challenging life.

    Caregivers have to be so tough, America is bereft of adequate resources that actually aid caregivers (and not just blithely tell them things like “practice self care”). Corporations are mostly unwelcoming toward remote work arrangements that caregivers really need and would thrive in. It’s not just that something needs to change; MANY things need to change. Caregiving is a reality for many human beings, especially women.

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  2. This is ALL so sad!! We worked for years, did just what we should, raised our children, saved, took care of ourselves (with no help from others) paid our bills, built a retirement. Did I think my husband would be yanked away from me before the age of retirement?? We don’t look at life that negatively. But when it happens everything we built can be wiped out in a heartbeat (his last heartbeat I might add.) But, same old story, I make too much in SS to be eligible for anything. Hmmmm, wonder if that’s because I worked my butt off for 28/29 yrs. With six back surgeries, two implants in my spine
    & mess of medical bills, I make too much!

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  3. Me too. Not only from my husbands injury but mine as well 6 years later.

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  4. What a choice! But I chose my mother and now tell everyone that I am independently poor.

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  5. The reason for many bankruptcies in this country. When my wife was in care center it was 9000 a month ! VERY pricey…

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  6. Most home caregivers are just that—-in debt. My mom, dad & sister needed my care. My family was my priority, simple. Then my husband & daughter. They are all gone now, the source of my greatest pain. After saving the gov’t millions by keeping my loved ones home & giving them what I knew was the most loving and compassionate care they could have rec’d this is how were left. I guarentee you, even having good insurance doesn’t pay for the high deductibles for radiation & chemo treatments, especially when oncologist ‘ s insist on doing third chemo (which wasn’t even for the type of cancer my husband had. What does colon chemo have to do with thyroid or esophageal cancer?? I’ll tell you what—-more money for the oncologist. Because that third chemo is what killed my husband. He would have probably had a couple more years with me if that chemo had not poisoned him!

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  7. Yep, totally…The debt just keeps accruing and so many people don’t understand and just want to bury me further. Then people say you need to take better care of yourself…..

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  8. With my father’s care being 24/7, no way I can work a job outside. I’m grateful for his military coverage and pension to help us out. Just dear lord, the budget is super tight compared to our needs.

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  9. Sad that what we deserve and what we get are two utterly different things!

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  10. And caregivers isn’t just parents, I was a caregiver to my sisters 3 children, their mother for a while another sister and her 3 children and my brother and numerous fosterkids. Spent a fortune of my own money to get them raised.

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  11. That’s why I’m making sure I work. I’ve been through the struggle…I can’t go back to being broke. Gotta do something for myself.

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  12. I utilized hospice services. A person does not have to be terminal to be placed on hospice but have a condition that’s not going to get better. My mom has medicare and they pay 100%. She will get an aide 2X week for showers etc… all necessary supplies…pull ups, wipes, lotions, barrier creams, shampoo and medications all paid for and it’s all delivered. I was so overwhelmed trying to take care of my mother while trying to work and I just couldn’t do it. Google hospice in your area and see what they could do. Also, before we decided about hospice, she was on palliative care for pain management. Call and ask. It is a tremendous burden that was lifted off of me. (I’m all she has)

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    • I have often wondered about hospice care for my situation. Thanks for the info, as I will be checking on this next week.

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  13. I am caretaker for my husband and the hardest part for me is watching our dreams for things in the future slip away. Each year we think next year will be different but financially it keeps getting worse.

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    • check to see if he qualifies for hospice services. a person doesn’t have to be terminal to get it.

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    • It is not the care necessarily but the costs involved in his disease…he has progressive MS. Today I talk to you from a nursing home where he is staying after a week long stay at the hospital for pneumonia. I could not take him home since he was too weak to help me transfer him from bed to wheelchair to toilet etc. This year was going to be a better year for us but after an ambulance ride, hospital stay and rehab in nursing home…our finances are again shot. We have private insurance since he does not qualify for MC yet. We love to road trip and see this beautiful country of ours but this will be just another year we are unable to do so.

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  14. As an only child in my 50’s, I decided I need to save up for legal. I’m killing myself with fear

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  15. No payment, no social security credits and it’s looks like now no ACA. Thanks for nothing

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  16. I’m currently drowning and no one cares. Just one more reason to not get a full night sleep.

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    • check to see if he qualifies for hospice services. a person doesn’t have to be terminal to get it.

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  17. Colorado gives financial support to caregivers.

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    • As does Kentucky. It is called KIPDA.

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  18. Unfortunately this scenario plays out in millions of homes each and every day .. Including mine .. Our lives changed the moment my husband was sitting at home and he started slurring his words and having a hard time standing or walking .. A stroke caused him to lose his entire right side .. We got him to the hospital quickly hoping he could get the stroke reversal drug but there was not a neurosurgeon on staff at the hospital and they couldn’t move him and could not administer the drug without a neurosurgeon ..
    We were suddenly thrown into a moment to moment crazy unknown life.. He survived only to have a heart attack and open heart surgery with complications as well as other surgeries .. Total hospital time and nursing home was six months that time .. Somehow I summoned the strength and know how to survive just about every challenge thrown our way..

    Luckily I had purchased an insurance plan that paid $200 a day for each day you are in the hospital .. It was $46 a month .. Without that insurance we would not have been able to keep our heads above water .. I too had to stay at hotels close to the hospital and nursing homes because things were critical all the time.. I never went home for those six months .. I bought t shirts from Walgreens 3 for ten dollars and wore those every day.. The parking fees at the hospital were $3 every time you leave .. So you can imagine..

    After my husband made it home ( we live in a motor home) in an RV Park .. He was in and out of the hospital every 3 months .. CHF , diabetis , high blood pressure etc .. And several surgeries ..

    We are on Medicare and eventually we bought a supplement to our Medicare .. It’s $370 a month for both of us plus $52 a month for our RX plans plus the $92 each month taken out of our social security .. So over $600 a month for insurance ..
    Without the supplement when he had a PPO Advantage plan we had to pay $5,900 a year out of pocket . Since husband was in the hospital in December of 2011 and still in hospital in January of 2012 we had another $5900 to pay out of pocket . Plus it was an extra $1000 a month at nursing home for private room .. Due to all the equipment needed for his care .

    Costs just start to snowball till you just try to take it a day at a time and negotiate what you can .. The first hospital we received for 20 days in hospital after the open heart surgery was $900,000. That was just part of the bill .. He was in three different hospitals for 4 months so you can imagine..

    We are living on social security and a pension from 55 years as a union plumber / Pipefitter.. So not rich and can’t qualify for the social security discount QMB ..

    Husband is now home bound and is 76 years old come October and I will be 73 .

    Things I find that help

    Meals on Wheels $ 20 for five days each person
    Signed up for county door to door transportation $2 a trip
    Mobile Physicians Service ( doctors and nurses. Come to us .. All medical
    Covered by Medicare and supplement

    Use Shipt grocery delivery service ( $99 per year) they shop for you .. You choose items from the app on phone for local Publix Grocery

    Found one insulin we need at Wal Mart over the counter for $24 a bottle ( Novalin N) the slow acting insulin.. No RX needed

    It helps when in the donut hole

    Drop off laundry and have it done then pick up next day .. Since we don’t have washer and dryer in motor home it’s almost the same amount to have it done as it would be to use laundry here in park .. And I don’t have to purchase detergent etc

    For anyone reading this if your loved one was in the military there is a Veterans Pension for Aid and Attendance which would be a great help .. It’s worth checking out online ..

    Take care and Bless you all

    I also sign petitions online and write and email my representatives regarding any bills that will help caregivers

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  19. God Bless you! I cared for my husband for 2 years during his cancer battle. With 12 doctors, meds that changed daily and all the expense that went with that we were fortunate and I thank God every day because I witnessed many in treatment that were not. Not only were they fighting the cancer beast but also trying to keep their family from going bankrupt. This should not be happening to families during their worst times.

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  20. I am currently paying $7000 a month for my mother to be in the nursing home. This is for half a room. my father would be so sad that his hard earned life savings is being used for this. he was great at saving money,but took it for granted that medicare and Tricare for life would take care of both of them. So sorry dad.

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  21. Joy, that was a well thought out good read. I found it very interesting, sad, bit lonely. and very educational. And it is true, being a caregiver can be brutal on ones financial stability. And I don’t think this country or the people are prepared for what might be around the next corner. I know, I wasn’t. I just hope people read this blog and understand the nature of the beast. It will eat you alive during care giving, if you are not prepared. However, in this country, a cracked bridge with six cars on it, has to fall into the river before they will fix the bridge. In other words, this country don’t usually fix things until their broke. Our caregiver system is broke…Time to send in the “Cavalry.”

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  22. Dreadful, simply dreadful! I have no advice, but you have my sympathy. I hope someone reading can offer some kind of advice.

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  23. This article really struck home. I’m a caregiver to my 33 year old quadraplegic son. I’m getting ready to turn 61. I have no income and no insurance. I know there are programs where your can earn money in being a caregiver. Unfortunately I don’t qualify because my son doesn’t have Medicaid and is unable to qualify for it because he owns property. It’s a house he bought several years ago for his sister,my daughter and her family with the intention of paying rent. Well they don’ t pay him and can’t afford to move. He receives disability but it’s not enough for he and I to live on. He got a settlement 14 years ago when he had his accident, but that money is just about gone. I’m unable to work; one because we can’t afford to bring someone in to help, and two I’m physically unable to work. I hope someone reads this and can offer some advice. Thank you for taking the time to read my comment. Cynthia Crowder

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  24. I too am at the top of the mountain of debt. I’ve exhausted my life savings when my mom reaches tier 3 of her prescription coverage for her Alzheimers meds. I work when I can in real estate, everytime I have a huge opportunity to flip a home that would make a big dent on my debt some medical emergency would happen.
    I don’t ask for help eventhough family knows about my financial situation, but a little emotional support would be great but my family only sees $signs when my parents are ill, and this is the saddest part.
    I’ve even suffered depression from caregiver stress and had to get help from county services. The part that hurts the most is that both sides of the family know how sick my parents are but don’t bother to help.

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  25. I don’t know….there’s something that doesn’t quite sit right with this story, tragic as it is, though it had a good outcome. The parents seemed to have quite a bit of income and savings, and it was all used up? Is it a case of being too middle-class to get any real help, as the destitute would get? I’m sorry for the caregiver, I always wonder in reading about cases like this – what would happen if the poor caregiver died in the middle of all this – what would happen to the condo? What would they do with the mother? The caregiver killing herself all those months or years, surely there had to be something else she could do. Medicaid? Nursing home? A cancer patient, a dementia patient – keep them in that condo no matter what? It’s a very sad story, though I am relieved there wasn’t a grim ending of being broke and homeless trying to keep the parents afloat…..I do know only the very rich and the very poor make out well in these cases, and I totally agree something should be done about the middle class! God bless you all.

    Reply

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