This week, and every day for 6 years, my day goes something like this:
Wake up, go downstairs, prepare breakfast, change mom’s bandages on her arterial stasis ulcers, get cussed out, get mom dressed and sat at the table. Then she and my daughter eat, I clean dishes, go to moms bedroom, clean up urine, feces, food, soda cans or whatever else was thrown beside the bed the night before. After that I get the sheets off the bed, put new ones on, start the wash. She huffs and puffs about how long it takes (I've mastered doing it quickly) she lays on clean sheets, proceeds to complain as I get my daughter settled to homeschool, then I go to my office (in house) to work. Hospice nurse comes afterwards around 12 or 1. They give me MORE things to do-after they leave (mom announces need: sodas, cigarettes, meds whatever) I go get the list at the store. Come back, aid comes gives bath if mama allows it (it's like bathing a cat) change bandages again- then I'm back to work, I work till 4, go downstairs, fold clean sheets, start dinner, get everyone fed, check daily school work. COLLAPSE into the bed, then do it again!
Yesterday, I spent the majority of the day cleaning up boxes and washing clothes in my *spare* time. Mama ordered hundreds of dollars of useless junk online I now have to send back.
Today, mom needs suppository (guess who has to do THAT?)
Then my sister calls...
She is EXHAUSTED, what from? 🙄 She had to go get her new extensions in her hair, get her nails and toes done and had to go have a massage. SO exhausted she says!
Meanwhile, I'm having to insert a suppository up my mom's whatnot while she screams obscenities at me and tells me what a horrible nurse I would make because I'm too rough! Well I wasn't using a jack hammer to insert the stupid thing (I had to use MY finger). As disgusting as that is it isn't as disgusting as having to debride the nasty wounds on her disgusting feet!
So in all that nonsense I have a question,
How in God's name can a hospice provide NOT think this woman NEEDS to be inpatient SOMEWHERE other than my house? I don't give a tinker's damn what "the patient" says! She has vascular dementia has had her butt powdered her entire life! She is abusive to an adult child, she was abusive to and allowed to be sexually abused as a kid!
When does MY mental and physical health matter? Never mind that, when am I going to be allowed to raise my own child?
Also, obviously I haven't been blunt enough with my sibling and "I need your help with mom," wasn't direct enough. I swear I spoke slowly and used small words! What do I do? If I'm not going to have help, does anyone know if NC USA has a way for caregivers to be paid?
I am scraping by at the moment as my work is taking a back seat to the needs of a person who could've cared less about me as a child.
Is she in your house, or you in hers?
There is absolutely nothing that says you're required to do all this caregiving, so I'm wondering why you are, especially after all the abuse you've tolerated from her all your life.
I think your problems begin and end with you and what you're willing to put up with, plus why you're willingly put your child through such a home life. That's not blaming you, but just an opinion that once you figure out that stuff, then you'll be able to make some concrete decisions that affect you and your daughter in a positive manner.
Rule #1 -- You don't owe your mother anything
Rule #2 -- You DO owe your daughter a safe, peaceful home to grow up in. She can't even escape during the school day, so that even compounds the misery.
Rule #3 -- You have a right to be respected and to make your own choices about how you live your life with your daughter. Mom's presence in that life is not required just because she has a pulse.
I'll second lymie's comment. Mom can "announce" anything she wants. My children used to announce that they wanted ice cream for dinner. It didn't mean they got it. My MIL, and then SIL, spent years waiting on my FIL hand and foot. The end result. A obnoxious, overbearing, pompous man who thinks that the world revolves around him and that everyone should stop what they are doing to do his bidding. Exactly WHY do you have to stop what you are doing to run to the store to pick up what she needs when she needs it. My SIL was conditioned to jump because she didn't want to deal with my FIL's tantrums if she didn't do what he demanded.
He's learning a lot in the SNF - about waiting his turn, about the fact that the world doesn't revolve around him, about the fact that the fact that you catch more flies with honey that vinegar.
The next thing - getting her into a SNF- yes you are never going to get her into one - as long as everything she needs is taken care of. No one ever wants to go to a nursing home. But that doesn't mean that it isn't the best solution for some people. And in your case - you are burning the candle at both ends.
You need help. As others have mentioned - the ER "dump" may be your only option. If you can get her to the hospital - you tell them that she is an "UNSAFE DISCHARGE" - use those exact words. Use them over and over and over until someone listens. You want a social worker. If she is capable of taking care of herself - she can manage to get herself home. Do not take her home. No matter what they say to you - and they will tell you that you HAVE to. You don't. They have a responsibility to assist you in finding care for her if you tell them that you can no longer take care of her at home.
If she is able to take care of herself - she can go home- and that means she doesn't need you to take care of her. That means you are off the hook. But you already know the answer to that. That's your angle. And that's when you tell them that she can't take care of herself and that you can no longer take care of her needs - and you add to that the fact that you are trying to juggle taking care of her and your daughter who has Autism and you can no longer balance the two and that she needs more care than you can support.
You and your daughter both deserve an environment where you can have peace and calm. You don't mention where on the spectrum your daughter falls - but you mention that you homeschool her - I'm not sure if that is simply because you have a preference for homeschool in general - or if you feel that your local schools can't meet her needs. But as a parent of a child (well she's a young adult now) with Autism, I know they need an environment that is conducive to their needs if at all possible. There are other places that your mother can live where she will be well taken care of. Your daughter only has your home and you. And both she and you deserve this time together. Especially if you want to homeschool her - that requires a peaceful, uninterrupted environment as well.
I wish you the best of luck. I know you are between a rock and a hard place. But protecting yourself and your child is paramount. And in the end, it is safest for your mother as well.
WHY are you providing all this care for your Mom?
You have three obligations. Your child, your employment, and your mother in that order. Something will have to give here, and you have seen it.
Find a caregiver's support group that meets via Zoom. Jump from one to another until you find one that not only vents (which is great) but is actually a great source of resources. Not only resources but tried and true resources.
In one of your responses, to a response, you mentioned that you don't know where to being. Create a spread sheet indicate in the first column the name and phone number of a hospital, then call and briefly say you need to speak to an advisor regarding desperately needing help in this impossible situation. It could be a social worker. In the second column type out the name of the referral and their direct line. Type in note in another column. However you want to do it.
When you are told "no we don't have anyone here", still ask if they can make a recommendation.
Research everywhere in your county or neighboring counties. Perhaps a church can provide resources.
Go online and hunt your a** off like you and your child's lives depends on it.
You are beyond red flags.
You may be part of the problem. As I read your message it's easy to see you have what it takes to get this resolved. But depression and exhaustion is a huge hurdle. Ask yourself what is really stopping you.
In my case I found that I can't let go of my beloved care recipient even though it's killing me to continue. There's a dash of ego maybe in this stew too. Will I be failing him. I will be a failure. And the money is an issue too.
What helped me make my decision (just this morning) to place my husband in memory care was the realization that at least if I drop dead or even get helplessly sick he will be taken care of. It's a fine place. It's killing me.
I know you situation is different.
Dig deep online, or by word of mouth, a school, and yourself. You'll find the answers and help that you need.
I found info on NC caregivers getting paid but then thought it would be more appropriate to point you to inpatient hospice. Is Gainesville, Palatka, Lake City or Orange Park near you? There are inpatient hospice centers run by a company called Haven.
Who has POA/guardianship for Mom?
Clearly your life is NOT a beach : > / But it CAN get better. Keeping in mind that sometimes the best way to care for a family member is to put them in the hands of professionals, what is hospice doing to address your needs? Is respite care available? Nursing homes nearby?
If you haven’t already, talk to Adult Services under Brunswick County Social Services at (910) 253-2250. Their website says they offer “many programs that can assist seniors or caretakers of seniors, including assistance with placement in a rest home or skilled nursing facility, assistance with placement in an adult day facility, and monitoring of adult homes.
BSRI: Brunswick Senior Resources, Inc., is a registered 501(c)3 non-profit that operates senior centers, coordinates the Meals on Wheels program, assists with in-home aide services, and offers numerous other programs to seniors, their family members and caregivers.”
The more care you bring in (or can send Mom out to), the more your life is yours to get help to heal your wounds and be with your daughter.
I hope you will find breathing space soon.
Talk to her doctor about suitable placement as you cannot keep doing this job.
I agree with you -she needs to go into a facility.
The next time mom falls, do not pick her up. Call 911. Have her transported to the ER.
Call the ER. Ask for Social Services. Tell them that mom is a danger to herself and others and can no longer reside in her home.
Do not show up at the ER. Do not sign for discharge,
If they send mom home in a cab, she falls again, repeat as often as is needed until they place her.
If she is "independent" and "competent" she doesn't need you to provide her care.
As long as you keep stepping in, no one will place her. Stop catering to her demands. Keep her fed and clean.
Step back from all else.
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