My needs are not being met! My mom had a brain aneurysm 4 years ago but since then had numerous setbacks due to infection, negligent care in rehab centers and physical setbacks leaving permanent setbacks. She is no longer able to do anything without assistance. My father, while he walks independently and drives, he has a very rare form of cancer and treatment is not working. I have felt strongly his behavior shows signs of dementia/Alzheimer's/irrationality/hot-headedness and so forth. I am in the home caring for my mother 24/7. I am unable to work due to all of my responsibilities. I have no help from my father or any outside help. I alone dress my mom, change my mom, shower my mom, administer medication or extra water via feeding tube, do mom's hair, brush her teeth, stretch and perform exercises with her, walk her several laps around the house, recreational therapy, crossword puzzles, reading out loud, taking her out and about, coordinating all outpatient PT and doctor's appointments, (more than 100 since 2010) coordinate my father's cancer treatment, diagnostic testing and doctor follow ups, file and manage application for Patient Assistance to take care of a tier 5 drug's co-pay ($2,749.68) deal with a lawsuit brought against us by the nursing home mom was in rehab for, responsible for caring for mom's dentures and hearing aids, I alone do the household cooking, cleaning, wash the dishes, vacuum, laundry pay the bills with parents money and I'm sure I'm skipping some things but I believe you understand that this is a very heavy load for 1 person. During the night I wake to check my mother and see if she needs to be changed, empty the urine bag, she wears a foley catheter, and I turn and reposition her. As a result, I sleep on the couch. I cannot hold a job due to the responsibilities and if I'm gone for any extent of time, literally there is nobody else to take over. My father is very selfish and I truly feel he cannot comprehend what is really going on around him. He is very abusive verbally towards me which is not good for my mother to hear, and he is angry for things he can't comprehend. My mom is 70. I'm 39. I will never be able to work again? Am I not allowed a day off to spend as I choose? I'm not receiving ANY pay for the things I do which go unnoticed anyway. I spend time in the wee hours trying to throw things out because my father is a pack rat! He was just in the hospital for a mini-stroke and while he was in inpatient therapy for a week, I rented a dump truck to clear out some things. Within 2 hours, the 15 yard truck was filled to capacity. We needed 2 of those to trucks to get everything out! All day long on top of everything I do, I clean up after him like a child and listen to him scream at me! If I don't do something it just doesn't get done. I have spoken with the police, 911 and Adult Protective Services and they were a waste of time. I really am trapped and do not appreciate this part of my life. I wish it were just my mom and I and things would be less stressful.
So in a nutshell, just because I am living in my mom and dad's home rent free, do I have rights to respite care or being treated with understanding of everything I have given up and all the money my father is saving? Can I legally have an authority figure step in to make changes?
Yes, you have rights. You have the right to be fairly compensated and there is a money and legal tab on this site which will help you understand how to get paid for caring for your parents.
It has to be done legally, so you'll have to get an employment agreement drawn up which dad may or may not agree to since he likes the free ride and likely feels like "you owe them cause your their kid"....if you do get paid think of everything to include including hourly wage, expenses, mileage, vacation pay, retirement, healthcare,just like any real job. Yes you will need vacation and maybe at least one or two days per wk off which means he has to take over the care or hire outside care for he and mom when you are off.
If you live with them, then they'll want to deduct rent...But even a live in CNA gets via an Agency will make several thousand dollar a month (I know because we had to check into this for mom a few months.
If he doesn't accept, and you are not happy about your future and current sacrifice of real income and benefits, then consider hiring help for mom, moving out and getting a real job--even if you have to share an apt. Etc.
Dad doesn't appreciate you and or is in denial about moms care needs and his own.
You aren't obligated because you are their kid. Only you can set boundaries.
Your parents have income and probably have savings or other assets. I doubt dad will notice a quiet approach to change, he likely needs something major to happen. My suggestion is for you to squirrel away enough $ for you to stay in a hotel & gas for the car and take a week long but frugal break. If you can find a friend to stay with or house-sit for that would be even cheaper. Contact 3 or so home health care agencies and have them come out to give an estimate for a weeks worth of services. You want to make sure they deal with you and you get a copy of all items, just incase dad decides to hurl elder abuse charges at you. Then when you have the 3 estimates, tell dad & mom that you are going to take a break as per doctors advice and they have to decide whichever agency they want to have provide for care. Then give mom her med's & a big hug and LEAVE.
During your week away go to the library and do the research to find an elder law attorney and contact them to set up an appointment to establish a "personal services contract" for you to get legally paid to take care of your parents (and this also builds up your SS quarters you will need when you "retire"). Use the home health care as baseline for what is FMV for these services in your area too. Do you have insurance, if not, signed up for ACA (Obamacare) again at the library do what you need to make that happen. Get out, take a walk, go to the zoo, take in a cheap movie, get your hair cut, buy a crazy color glitter nail polish and get those feet beach ready. Also wherever you go, get a job application or even a volunteer application, so you are poised to get out and find a job if need be. Good luck.
Of course you deserve help and respite. Don't continue to allow your dad to hold you hostage. Decide for yourself what you need and when you need it and then implement it. This may include your mom going to an adult daycare during the day so you can have a break or it may include hiring outside help for several days so you can get away.
And like other people have said, set boundaries. You're helping your mom out of the goodness of your heart, not because you're obligated. If you need a break you are entitled to take it. If dad won't accept help then maybe it's time he lived somewhere else like an assisted living facility. You have a hard enough time as it is without his nonsense everyday.
1. Advise your parents it's time to get help, either within the house or at a facility. If you have HIPPA authority, talk to their doctors privately about the situation and ask about home care, at least initially. Be prepared for your father to resist but document his actions if he sabotages the home care efforts.
2. Think about getting a job, dust off your resume and start job hunting. Even if you don't get interviews right away, just taking that step should help you feel more independent. Start out part time at first if you feel more comfortable; making the transition from literally being a slave to holding a job and accepting different responsibilities can be a bit unsettling, but you can do it.
3. If you can get home care, have a private talk with a social worker about what's available at placement facilities and whether either or both of your parents would qualify. Take time off when home care comes and start looking at facilities.
Also ask the social worker about any Medicare, Medicaid and long term planning issues that you think might arise.
4. And rethink your screen name: AnnetteisMyMom defines your identity in terms of your mother. You are your own person. Choose a name that fits your personality, as you were before becomeing a caregiver and who you want to be.
Your post reminds me of Cinderella who was literally imprisoned by her evil stepfamily. You have no life but you're the only one who can reclaim it. Sit down, right now, and start planning for the rest of YOUR life, and good luck!