The System Is Beyond Broken

Jen

The System Is Beyond Broken

Jen

glass-602889_640As family caregivers, I'm sure you all understand the difficulties that people face when they have to provide for someone else's needs continually, but I'm pretty sure the government doesn't, and doesn't care to either.


As it is, I'm struggling to care for my mom. Before I went to get her, I was told she was walking, using the toilet, and assisting with her own care. She wasn't. I literally have to do everything for her, which is near impossible, since I care for three kids already, and I work 10 hour days from home, seven days a week. We're making it work, but some days, it isn't pretty. The only thing getting me through is the hope that I'll have help... and soon. Physically, I can't keep doing this.


But, here's the deal. We're floundering financially as well, and so much of it is the result of government inefficiency. When my husband bailed, I decided to rent out one of the rooms in my home so the kids and I could afford to stay here. Now, she's not paying rent. She was a month late last time. I'm serving her eviction papers today, because she's late again. She is late every month, and I rack up late fees on my bills. On top of that, my ex isn't providing child support. He's legally bound to, but we're at two months of no support now. So, I work even more to make up the difference... well, most of it. I can't fix it all. Those are just my financial issues, but I really thought my mom's benefits would provide for her needs.


Nope. I told Social Security to remove her representative payee at the end of January, in preparation for her February move from a facility to my home. Ah, but the wheels turn slow. Her first check is due to arrive here at the end of April. The money is still going to a representative payee agency who will not send the money, because of policy. Apparently, they have to get a release from Social Security (which they got, but swear they didn't), and then they send the money back to the government, who will then disperse it to us. SS said it will take at least a month. Oh. My. Word. Two months of supporting my mom with no outside financial help. I am single-highhandedly supporting six people, if you include my non-paying roommate.


Thankfully, I started the wheels turning on my mom's state benefits a month before she arrived as well. She has basic medical coverage, which is paying for her prescriptions. In an almost miracle-like way, her prescription coverage kicked in the day before she ran out of her meds. But, she doesn't qualify for food assistance or anything else through the state. They also don't cover dental, and she needs to see a dentist very soon.


Long-term care and disability. HA! That's a separate entity and they're not processing her yet. They think her husband makes too much money, but they'll process the application anyway... just as soon as he sends them paycheck stubs, bank statements, a copy of his vehicle title, and a copy of his marriage certificate. Guess what he's not doing? Exactly. He won't even return my messages. So, we'll have to file for divorce, which I can do, because I'm my mom's guardian and she's okay with it. Ah, but she has to have resided in AZ for 90 days first. I may be able to file in WI, because he lives there, but they want $300, and the process takes 90 days or so. Really. We may not have any help at all for four months. I was counting on that to provide in-home healthcare benefits. I was counting on that to provide her with physical therapy, so she can continue the recovery process. I also just found out that if/ when she does qualify for long-term care, the state will only pay for 15 physical therapy visits in a year. In a YEAR! Do they want her to recover as much as possible, or would they like to keep paying for all these services for the rest of her life? Insane. She was getting one to two every week in Wisconsin.


At this point, I'm pretty much toast. I have bad hips, and they ache from the continual lifting. I'm exhausted. I'm broke. It's sheer willpower seeing me through. No less than every 15 minutes, someone stops me from working so I can tend to their needs. I get that. I understand. But, it doesn't stop me from being anymore scatter-brained than I am.


Now, I'm griping to you guys, because I'm pretty sure you get it, and maybe somebody will know how to grease the governmental wheels. The reality of it is that we're okay. We have food. I've kept the power and water on. We even have internet and cable. So, in the grand scheme of things, we're okay. It's just frustrating that my mom can't access the benefits she's entitled to, and the courts aren't doing a thing about my deadbeat ex, and I have to go through the process of having my roommate legally removed, and then finding a new one. Bah.


With that said, here's my thought for the day. I know my family is okay. We really are. This stinks, but it will pass, and we'll be better and stronger because of it. In some ways, we're really, really lucky and blessed. What about the people who haven't gotten the breaks I have? I was a food stockpiler and had a pretty good stash when this all started. I also had a credit card that I could put my mom's disposable briefs on, buy her a commode with, and get some other necessities. What if I didn't have those things? What if, when I became ill, I didn't have a credit card to put my doctor visit and antibiotic prescription on? There are people who haven't been so lucky. There are people who have their own physical ailments and can't properly care for their loved ones. What becomes of them?


This is an incredibly dark thought, so please forgive me for it, but elder abuse is a huge problem in the US. How much of that is related to lack of support? If you have a baby, and you can't care for him, there are a million resources. The hospitals won't even release a new mom until she's been taught about shaken baby syndrome. If you have a baby, and can't care for him, and change your mind, you can take advantage of the safe haven laws and leave your baby in a designated area, knowing he will be provided for. Where is this support for the disabled and their families? Don't get me wrong, I don't want to drop my mom off at the fire station or anything (although I'm sure she'd love a visit with some studly firemen), but, if I came to the point where I was no longer physically capable of caring for her, what could I do? Nothing. She has no coverage for a nursing home, or assisted living, and she likely won't be covered for several months. I have no choice now but to keep her with me. Again, to be clear, we're ok. I'm not ignoring my mother's needs. She is clean, fed, and changed when she's soiled. We have family dinners together. She plays with my kids from her chair. She's bored to tears because I work so much, but otherwise, well cared for. Even still, I know there are homes across the country that aren't weathering the same storm quite as well. Yes, the system is very, very broken and I haven't the slightest clue how to fix it. What's become of America? What will become of our most vulnerable citizens?

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Jen

It's sad that they'll gladly push pills, but won't give something that will provide wellness. I hope you can get the number raised for him.\r\n\r\nIf I can get my mom on long-term disability, there will be some caregiver coverage, but I'm not sure how much. It looks like that's at least four months away, because I will have to wait for cash from social security and then start the divorce process for her. Thanks for the support. :)

Jean

Jen, \r\n\r\nOh how I understand so many of the things you expressed. And I pray your body survives the transfers. My MIL had stoke and eventually was total transfer. One day I literally scooped her up from bed, by then she was probably only 90 lbs. I know my back took a hit from all the years of abuse I put it through. But when you don't have options, you do what you can in the moment.\r\n\r\nI hope you find some more options soon. You have so much on your plate and then the added hassles of bureaucracy only to find out you jump through hoops for nothing...!\r\n\r\nWe had a social worker give us this long list of referrals and agencies that could help, and we told her we had already contacted/explored everything on her list. She didn't believe us, so she said she would make the call for us, that they would respond to her since she was a social worker. We never heard back, but we weren't waiting either. She was young and naive and just hadn't learned what the \"system\" is really like yet.\r\n\r\nAnd yes, the local domestic abuse shelter is reporting a huge increase in elderly abuse. Believe me, I can see how easily it could happen with all the pressure and stress of caregivers. I lost it a couple times but was lucky to have a partner in caregiving. When I was losing I would tell him he had to take over so I could go outside to scream.\r\n\r\nI hope you get more assistance soon... !

Hansolosgirl

I have been told, if they go to the hospital and you can't take them home, they can become a ward of the state who then must provide care. I heard this from this other AWEFUL website where all they ever said to everyone was put people who are sick in nursing homes. I don't know if it's true or not. I do know it took 18 mo for SIL SSDI to kick in and she was off work for 3 reasons! During that time we were her only support...I can't imagine what would have happend if we weren't there and she was nowhere as sick as she is now. I spoke to a family member who works in nursing homes about SIL and the care she requires and was told ( as I thought) she'd be in bed period and medicated to the gills. Total restraints. That's why I continue to keep her at home no matter how difficult it can be! The system is completely broken.

lookingheavenward

I am SO sorry that everything seems to be happening at once! Know that you have support here. We, for the most part, have been in at least a part of your shoes at one time or another. This is a safe place to vent and hear creative ideas that have worked for others. Keep fighting!

bootsie

Wow! You are going to be even stronger when you make it through and you will make it through. I can definitely relate to the pain from lifting. Write letters, ask for help, make a plan and just keep moving forward. I applied for Medicaid for my Mom last April and she was in a nursing home by October. I had been told it could take 3 years for a bed to come open. I did get in touch with someone running for office and he reached out for me and I got one person at the agency to walk me through the process. I also toured different homes and got my face out there and advocated for my Mon. I knew I would physically not be able to keep it up. You have to be vigilant about following up. I will say that the home care therapy I got for my Mom while she was with me was not very helpful. The patient has to be really motivated to work really hard and sometimes that is just too much for them. Hang in there and I am happy you are able to recognize some of your blessings!

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