| Mark Swartz
| You can learn a lot from Reddit about the stress and anxiety of caregiving in America today. These lightly edited snippets from the Caregiver Support and Eldercare communities display the financial, interpersonal, and psychological toll of these underpaid and unpaid jobs.
“I feel as if I just had a reality check about how surreal and harsh life and the world can get. My only reasoning for still going to the U.S. was to pay off [a] loan. However, since I’ve been here, I was getting decent hours but not enough to pay rent.
“It’s near to the end and I had to make the sacrifice to help my mom pay for my tuition and finish paying off the loan, which is my major priority, which is what I did. For my last two paychecks I sent $2000 to my loan agency and $400 to my mom. Because of this I couldn’t pay rent right away. I had to use my last $100 to get to the social security office to get my number. I did the maths and the calculations and realized that I can finish paying off the loan and pay them $1000 worth of rent with my last paycheck.”
“I still feel so WRONG for leaving her when she is in this vulnerable state. She also does not want me to leave and constantly tells me how she’s scared of being alone. Which just adds onto my stress.
“So what am I supposed to do if I have to wait to sell his house to get him into Assisted Living, and then he’ll have no coverage and no home after that money is gone (there won’t be a lot after his debt is paid, we had a lot of medical expenses). Do I just say fuck it and not pay them? Not like his credit rating matters now.”
“My charge refuses to eat. Should I document the meals I make that they refuse to eat?”
“We grew up in nice suburbs and lived a comfortable life, and I am so shocked my dad is completely broke. My siblings don’t seem to want to help, and they are also in denial. I know they both get social security but don’t think they have any other income.”
“I’ll be going home to the constant worries of my mom struggling to do things on her own and getting even sicker. I don’t have the time, energy, or bandwidth to have a baby until my mom is gone.”
“I am caring for my husband. He had surgery, then serious complications. I am a retired nurse, so I feel extra responsible. I do a lot, handle husband’s meds, his hygiene, ambulation. The problem is he is so grouchy and will not offer any appreciation. Plus I can’t go to the gym, which is the highlight of my day. Hopefully he will improve. I need to call his doctor about an issue but husband won’t let me. I am doing this alone. He has very few family members, so no help there. I just need to vent.”
“Mother is blowing through retirement and will be homeless.”
“I hate how this is such a beautiful day and I’m just stuck here.”
“I have a sister that is 19 years older than me, never married. Our parents are deceased, and I have no other siblings. There are no other family members living. I’m 58. Almost three years ago, I was notified that she had called 911 and was almost dead by the time they got to her after a fall. She was taken to a rehab center. I lived two hours away, and to come up with a solution for her care. The only thing I could do was bring her home with my husband and me. I went to her apartment to find out what things we need to bring back, and walked into the most horrifying and gross conditions I have ever seen. I won’t go into details, but I had to hire a company to clear out everything, then had to pay the leasing office to condemn and then redo the entire apartment.
“She was addicted to pain killers, smoked like a chimney, and didn’t take her other medications. She was also addicted to online shopping and ordering junk food to live. She had past due bills up the wazoo, blew her 401K on a condo that she left in the same condition.
“So she falls again in December 2023, and gets sent to the hospital again. She comes home with me again. She falls again right after Christmas and breaks her hip. Back to the hospital and surgery on only Medicare Part A because she didn’t want to get Part B since she couldn’t afford it. Okay, so now she has thousands of dollars in medical bills. Mind you, she has absolutely no savings to her name or advance directive. The bills go unpaid. The hospital releases her to a rehabilitation/long-term care facility.
“Physical therapy wasn’t covered by Part A Medicaid, so I applied for her Part B and was approved. Too expensive, so we’re back to square one. So in order for her to be a resident, her social security isn’t enough to pay for it. Now I’m footing the bill for her care for that, plus apartment rent, and utilities for an apartment she thinks she’s going back to. I was at my wit’s end draining our own retirement savings, receiving phone calls at all hours of the day and night with her demands to do this and that. (Including at work), and about to lose my job.”
“My dad is 82. He lives on his own two states away from me. He had knee surgery on Tuesday. I got here two weeks before that, and got his labs and pre-op appointment taken care of. I came prepared to be here for as long as he needed me, up to 90 days. In those two weeks, he fell three times. He has had several episodes of being very disoriented, one time not knowing how to open the garage door in a house he has lived in since 2008. Since his surgery, he has been very altered and has been hallucinating. They haven’t been able to do much physical therapy because he’s been so out of it. They stopped opioids to see if that was the problem, but he’s still talking to people that aren’t there. So instead of coming home, he’s being transferred to a rehab facility later today. On top of that, in talking to the physical therapist about my dad’s gait, he told me that my dad is showing signs of Parkinson’s as well. So in a very short time, we’re looking at the very real possibility that he is going to have to move into an assisted living facility. I have to talk to his doctor about tests and evaluations. Once we have that information, I’ll have some decisions to make, including possibly moving him to the state I live in, which will make him very unhappy.”
“Dad has kidney cancer that has spread to his brain. He’s had seven brain tumors, had his brain radiated seven times, had full open brain surgery, and a few weeks ago the radiologist called it: no more radiation, and the oral treatment clearly isn’t working. As you can imagine, that much radiation to the brain has had a toll on dad’s cognition. He’s been losing words and fine motor skills slowly over the course of his fight/treatment, but this last one was devastating. On bad days he has problems answering anything other than yes or no, and his mood is paper thin. The oncologist told us he has “months, and not many,” which was clarified to 6 or less.
“One of the two main issues that brought me to reddit is this: dad will not accept what his doctors are saying, and will not discuss hospice care. Right now I live 2 hours away and mom is in the house caring for him. Mom is very fit, but he’s over six feet, and we are at the edge of our capacity for what we’re able to manage without losing our minds or running away from home. We NEED him to accept hospice in order to access whatever care will come with it. He’s close to the point where he needs diapers full time, and mom and I are not up to that level of care for the next six months. We need to pivot to home health at minimum, or a nursing home.
“I think we should start looking into nursing homes now. If we got him signed up and start familiarizing him while he’s still mostly aware of what is going on around him, the move will be less traumatic when he has no other choice. We could potentially bring him back home for sleepovers so that the transition feels less permanent/final to him. It also, based on my initial research, seems like the most cost-effective option for us. It looks like full-time in-home care is in the ballpark of $7000 a week, although I have no idea if that is before or after insurance, what insurance covers, etc. We’re in a suburb of DC, which means we have at least one or two good options near us, but everything is WILDLY expensive.
“Dad wants to be kept at home until the end, which… I am not sure we can afford. If you all could put the cost of specific services you’ve used in the comments, it would be hugely helpful for me in Point 2: Mother.
“Mom is exhausted, grieving, traumatized, and past the end of her rope. She’s not willing to piss dad off too much by mentioning nursing homes, and she keeps putting off discussions of in-home daily care (particularly a night nurse, that would be life changing at the moment) or nursing homes because “we don’t need those yet.” She agrees with all of my points–that his neurological condition is continuing to deteriorate, that we don’t want to be totally off-guard when his level of need increases, that we need to know what we can afford… but she will not go into details on this with me because we don’t have a jumping off point of “The cost of X thing is about $$, and you get A, B, and C service.” Right now it’s just her vs inevitable death, and looking up from that is clearly overwhelming her.
“I am on all of dad’s forms and doctors as someone who can get into his records, pick up his meds, ask questions, etc. It’s not that I am not wanted or involved in the process, it really seems like neither of them is able to have a logical discussion about these things because of the emotions it dredges up.
“I’m going down for the week at the end of September, and after that will likely be bouncing back and forth between my hometown and current residence. I’d like to make calls/visit places/ask questions when I can, but now *I* don’t know where to start either. Do I call his insurance company and see what is covered and what needs a doctor’s recommendation? Do I try to find one of these hospice companies that comes with a case worker and see what they recommend?
“It’s been a slow slide since his first cancer surgery back in 2017. We’re all exhausted, and this is so fucking sad, but I’m not convinced we can afford to respect dad’s preferences here, and I’m just— AHHHHHH. Why does America/capitalism have to extract every bit of peace, dignity, and money from even our deaths??”
”Hey everyone, so I’ve worked homecare in total for about three and a half years. All the clients I’ve had up till this point have treated me with basic respect and I’ve really not had too many problems other then people are f*cking stressful. Butttt…. This one lady, I work inside her home and for her husband in their home as well, the woman client nit-picks everything I do. No matter if I even do it exactly to her liking she’ll find some sort of excuse to make me feel like I’m not doing enough or doing it right. She’ll have days where she almost explodes with anger at either me or her husband. She’ll say passive aggressive things to my face like: “Do you have eyes?” “I told you to empty the pockets before washing”… etc etc (even tho I fucking emptied the pockets). She just belittles me and has no faith in me (maybe cause I’m not Christian??). It’s like poison being around her because I never treat anybody that shitty and in that tone. Idk what to do because I can’t talk back to her but I HATE the way she treats me and treats her husband. I know she doesn’t love her husband for some reason even though he’ll do anything for her. What do I do? I feel extremely disrespected and I have no one to ask these questions to. The normal response would be to make a comment to feel justified but what choices do I have???”
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