People Are Getting Real About Their Experiences With Eldercare, And They're Being Described As "Bleak" And "Nightmarish"

Taking care of an aging parent can be stressful — physically, mentally, and financially. Because of that, it's not uncommon to seek out assistance. But when it comes to options such as skilled nursing, in-home care, assisted living, and other branches of eldercare, what does that really look like? Recently, members of the BuzzFeed Community shared their experiences and struggles with eldercare, and their stories are equal parts startling and insightful. Here are some of the staggering realities of dealing with eldercare in the US:

1."I'm 83 and my wife is 75. She's had Parkinson's, dementia, and anxiety for 13 years. The last year or two have become difficult financially, and I'm still trying to provide most care myself. I'm spending over $40,000 a year for four hours of evening help, six days a week. I'm up at seven in the morning and am very tired by mid-afternoon. My wife gets meds nine times a day, and I fix all the meals. She qualified for hospice, so I'm expecting to put her in sometime soon. Needless to say, I'm stressed out in many ways, financially and physically. After my wife dies, I'll have nothing left to care for myself."

2."My dad needed special care, so we were exploring our options. One place quoted us $600 a day. Another place — for a shared room, mind you — was asking for $900 a day. Who the hell can afford any of this?"

—cupcakesfordinner

3."My aunt has Alzheimer's and was placed in eldercare after a bad fall. The hospital recommended a specific facility so that she would have around-the-clock care. She was there for less than a week. The facility wouldn't even take her to the bathroom, lied about her receiving PT when she didn't, and the staff was rough with her. My aunt BEGGED to come home, and she is now being cared for by family. I am thankful that she is light enough to be lifted without needing special equipment, and, honestly, she's easy to care for in comparison to how much harder it could be. We are fortunate that family care is an option for us; however, I can't imagine what life would be like if she had to stay at that facility in terms of money and care."

4."My mom can afford a shared room, but I wanted to see if we could afford a single room. It was $350 a DAY."

—ellene8

5."I've been dealing with assisted living facilities for my mom for years now — beautiful, brand new facilities, too. They all SUCK and are all the same. Our minimum base price at one facility was $7,000 a month, and they do NOTHING. My mom has been in five different facilities and is 99 years old, and I just went ahead and brought her back to my home. It's tough — beyond tough."

6."I have two parents with dementia, and I receive zero help. My parents 'made too much' for Medicaid and couldn't afford skilled nursing even with insurance. They never planned for this, and they never told anyone that they had dementia. I came into this unexpectedly in the middle of their respective stages. Both my parents require care that they cannot afford, and as a result, they are part of a system that basically lets people deteriorate. I recently was able to become the power of attorney and have been able to self-pay, but that is not sustainable at all. Simply put, they cannot afford it. I, a person with zero medical training, am the 'eldercare' for two seniors with dementia. This system is broken."

—Shona, 50, South Carolina

7."We had to force my 89-year-old dad into assisted living after a series of falls and a hidden dementia diagnosis. He is not close with anyone in my family because he was a terrible ex-husband and father, and he had almost no savings until after we sold his house. He has two years left until he runs out of money and will need Medicaid. Assisted living was so expensive in Long Island, New York, so when I moved to North Carolina, we transferred my dad down here to a slightly cheaper place. But I've been disabled due to long COVID since March 2020. I'm currently on SSDI, so I have my own problems. The eldercare system is a mess, and the younger generations are being tasked with picking up the pieces for our parents."

8."I have a parent in their 80s who has lost a lot of mobility and has therefore also lost the ability to care for themselves. Over the past year, as their health has declined, I've explored in-home and facility care for them. In the Washington, DC, metro area, I've seen home healthcare aides requesting as much as $36 an hour. And most of the time, it doesn't include the cost of medication, food, utilities, and other housing and medical costs. It's a tough place to be in, and it definitely needs to be part of life planning — just like college and estate planning."

—Vicki McGill, 56, Washington, DC

9."My elderly mother has needed many hospitalizations and short-term nursing home stays in the last two years of her life. She was lucky to have good insurance that paid for most of that, but at home, she had to pay big bucks out-of-pocket for aides and nurses. If she had to permanently go to a facility, she would have had to sell her house before Medicaid would cover the cost. It was shocking to me that some medical providers thought untrained family members could care for her despite her many infirmities. This took a toll on us, too. The system definitely needs fixing."

10."My husband, who's 71, has cancer and suffered a stroke. He was transferred from the hospital to a nursing facility for rehab from the stroke. One Monday, I went in and was told by the PT that my husband wasn't making progress, so they had to release him. The next day, admin reiterated this info and informed me that they needed $12,000 by Friday, or else I had to take my husband home. He was a candidate for hospice, but I had to rearrange my house and make other pans, so I handed over my credit card. My husband is a big guy, and I was using a walker myself. It was a nightmare! Thank god I have insurance that covered him until discharge and had a credit card to use. It could have been much worse."

—Anonymous

11."My dad has dementia and a laundry list of other ailments. The dementia is getting bad, and it's getting harder and harder to care for him. My mom (not his wife) looked into facilities, but the waiting lists are out of this world. Oh, and Medicaid doesn't pay for everything. It's just a shame because he needs and deserves better care, but no one can give it to him. Getting older and ill just sucks ass."

12."My mother was able to pay for her care for three years, but we still had to refinance my house to finish up paying for her care. The cost was $12K a month. If I am diagnosed with any type of serious illness where I have to go into a care facility, I'd rather just disappear and die than make my family pay what I had to."

—Anonymous

13."I am dealing with this right now! My mom passed away 10 years ago, so when it was time, I was the only one who could take over my grandma's power of attorney. She was staying at a facility at the time, but we had to move her from "independent living" to "skilled nursing" within the same place. In doing so, the monthly expenses went from $3K to $12K. Not only that, but her $3K apartment was a one-bed place with a kitchenette, and she was provided two meals a day. Meanwhile, the $12K apartment is the size of the BEDROOM she was renting before, and now she has a roommate. She gets about 1/4 of the space for four times the amount. The real kicker is that she and my granddad did plan."

14."My mother lived well on her own until dementia took that independence away from her. I'd been diagnosed with Parkinson's several years earlier and had lost my ability to drive safely. My husband and I did what we could to coordinate care for my mother, but that became more and more challenging, as I'd hoped to be able to continue to work full-time until I could retire. We decided on an assisted living facility that was 'only' about $4,500 a month. We spent down all of my mother's savings until she was eligible for Medicaid. My mother's dementia continued to get worse; she died shortly before her 95th birthday."

"Coordinating my mother's care and hearing about similar experiences from my coworkers made me realize that I had no answers for my future care. Despite our best efforts, our bodies age, and we die. Our healthcare system is broken; Patient care will continue to deteriorate if we continue to support a model that puts corporations over people."

—Diane, 72, Washington

15."Our person was admitted to a hospital after a fall. The hospital released him to a rehab facility, and he was there for nine days. On the fifth day, he developed a cough. The staff said he was fine, but it turned out that he had COVID. Mind you, our person was 85 years old, and no one told us that he was positive. Even at the facility, no one was wearing masks. How I found out was the one of the staff members casually said to me, 'For someone who has COVID, he doesn't have any symptoms.' I said, 'He has COVID? No one told us.' And the staff member said, 'Well, we are not required to tell everyone.' Unbelievable! As soon as our person's quarantine was up, I took him out of the facility and went to the hospital. He was then diagnosed with pneumonia and had developed a rash from sitting in his urine and feces for hours on end. Our elders have no voice. Good luck with your loved ones."

16."At 90, my mom was the care provider for my dad, who was 92. My dad was getting in-home care to help with showering one to two times a week and was getting occupational and physical therapy once a week. Once it was determined he was no longer making progress, services were discontinued. At 93, my dad began losing his ability to stand and walk, so he was transferred to a care facility that cost $8,000 a month. At that rate, my mom's savings were going to be depleted in six months. My mom hired an attorney and paid $10K to get my dad qualified for Medicaid so that he could afford to live in a care home."

—Ja, 65, Michigan

17.Lastly: "I tried to take care of my elderly mother in my home with the help of in-home care. After a while, it was apparent that this arrangement would no longer work, so we pivoted to assisted living. One day, my mom managed to escape — she just walked away and rode on a bus to the end of the line. She didn't have money, and she couldn't say where she lived. Eventually, she was found and returned to the facility. She was then placed on a lockdown floor. Being a loner by nature, my mom didn't leave her room unless attendants came for her for meals. After selling her home, the $60,000 was spent in no time due to the care she was receiving. After the money was gone, she went to a Medicaid facility until her death. This was the saddest time of my life. I made daily phone calls to her; hearing and seeing her cry because she wanted to go home was heartbreaking. I did the best I could."

If you've ever had to explore eldercare options for yourself or a loved one, what has your experience been like? How accessible has information regarding eldercare been to you? Let me know down below in the comments, or you can anonymously submit using this form.

Note: Some responses have been edited for length and/or clarity.