I have been caring for my elderly mom in NY for over 10 years. I am 41 now. She has diabetes and is developing Alzheimer’s or something similar. I give this woman my life. I have no social life. I don’t go anywhere or do anything. Any time I try to leave the neighborhood she pretends she’s sick to keep me home. She doesn’t care that my quality of life is awful. I get paid to be her caregiver but I cannot live on this. I am struggling mentally and financially. Having real work is also hard because she acts like she is dying. I’ve lost jobs due to needing to leave to tend to her. I need to live my life and work to pay my bills and my child support. I am at rock bottom.
My sister and my aunts have a lot to say about how I care for my Mother, but do nothing to help. They do not give me any financial help. They do not give physical help. I tell them I am suffering and they don’t care. My sister (who lives in Japan) is Mom's proxy, so she doesn’t allow me to put Mom in a nursing home. It will get to a point where I am a danger to myself and my mother because I am neglecting my own health. Yet, my family doesn’t care. I want to do something to relieve myself and finally live my life, but I don’t have the financial status to do so. I also don’t know what I would have to do. How can I make my sister or a family member take my Mom? It’s someone else’s turn. Could I override the proxy to put mom in a home? Do I even need a proxy to do so?
Reading this post is triggering for me because I've met so many people who like to argue about this and who play sociopathic hobbies where they force me into contact with my abusers. They either make it sound like an obligation or try to convince you that the abuser owns you. I know what it feels like to be forced on someone who's demanding.
Another thing that happens is when people on the healthcare team play disability games where the object is to have you working their shift without getting payed. I have seen this happen in private homes where no agency is involved and also in a boarding house.
I would start calling your Area Agency on Aging and some other places to see if they can help you.
Caregiving is a long, difficult road, and we're happy you have found the support of others here on this site. However, there are limits to what untrained members of the forum can provide for you.
If you are experiencing thoughts of suicide, please reach out to experts for additional support by calling the 24/7 National Suicide Prevention Lifeline at 1-800-273-8255.
The New York State Department of Aging may also be able to connect you to additional resources and supports that can help you care for your mother and yourself. You can access their website here: https://aging.ny.gov/programs/caring-loved-one
You've already received some excellent answers and advice from other members. Hang in there!
And just because she had been diagnosed with Alzheimer's that does not automatically mean she is incapacitated.
Have you actually tracked the total amount of time daily you are actively providing her care? Are you being paid for the amount of time you are actively providing care? You WORK for the agency not her. It's already unusual for a family caregiver, most have to have a contract in place and be paid directly by funds from their loved one. But you are actually contracted by the agency to provide her care. So it seems to me that you should be paid by the hours you provide her care, like an actual timesheet. They have to be providing documentation for tax purposes on your wages and hours. What is the agency tracking for that purpose?
I recognize that you have child support and taxes subtracted from your paycheck. And I also know that the agency may get $20-$25 an hour but the caregiver may only actually make $15 or some subset of that. So this entire arrangement sounds like you are only working maybe 10 hours a week providing her care. I'm quite sure it's much more than that. Maybe it's time to rethink getting paid via the agency. Or increasing the number of hours they pay you for and bill her for weekly.
Or possibly look into reputable work from home jobs that you can do in tandem with caregiving to bring in extra money to put aside. While I recognize that would also increase your child support, it would give you a golden opportunity to set aside all of the remainder as savings to get out of this situation.
Do you know the value of the care you are providing?
10K-12K a month in my area, probably more in New York.
Contact the Department of Labor. This is illegal.
Get out and go see Legal Aid for help.
This sounds very codependent find a therapist, a real job and a place to live.
SAY NO MORE!
You stated: "I get paid to be her caregiver but I cannot live on this. ...I need to live my life and work to pay my bills and my child support. I am at rock bottom."
How exactly is your family forcing you to do anything?
How did this paid arrangement come to be, and who drafted the terms?
Were you employed and living in your own place before this paid arrangement was created?
I ask because a little background will help me to give advice. Did this paid arrangement start as a result of you simply volunteering? or... perhaps you were in a bad place in your life and needed funds. The history matters if you're seeking advice.
Ive lived with Mom this whole time. At some point my sister got married and moved out. She is a military wife. She’s moved at least twice to different bases over the years.
There were brief times where I lived somewhere else. I lived elsewhere for about a year and would come back to make sure mom was good every now and then. That didn’t work out, I went back home.
At one point I was in a relationship that produced my child. She lived across the street. I stayed with my new family and child, and could just go across the street and take care of Mom real easy.
I worked on and off in different food industry and production jobs. and Deli, Dishwashing, etc. Those are the skills I have. Mom made it hard to work away from home, and aids we had were not very good. They’d basically come clean the house and leave and not run errands or really help Mom with anything. So not too long ago I hooked up with an agency that helps family care for family and I now get paid to do everything I was already doing for her.
Yet they don’t want to put her in a home.
Mom is sinking into dementia so decisions need to be mad as soon as possible so she can legally agree to them. POA can be done with a form online that is witnessed by a notary and two witnesses. Once that is done the sister in Japans document becomes void.
You need to seek help in placing Mom once that is accomplished. You should seek out your areas agency on aging and see if they can help guide you so Mom can be placed in the proper facility or help get you an aide payed for by the state.
Start with sister in Japan informing her about your plan with facts, you want to move out, get another job?
Obviously, your family does not care and you cannot expect them to change or help you so you have to decide for yourself what is it you want?
What were you doing between the age of 21 and 31?
Have you never been away from your mom for even a weekend?
As upsetting as this may sound, and I'm feeling love for you while I'm writing this, you may be in a situation where you and your mom may be taking care of each other. You can achieve even great things while there.
If you can try to view the movie Now, Voyager. Maybe you've seen it.
Btw, did you know that the title of this movie was taken from a line in a Walt Whitman poem entitled "The Untold Want," it goes -The untold want by life and land ne'er granted, /Now voyager sail thou forth to seek and find.
If you can objectively look at your current situation and say to yourself that you are not also benefitting from being with your mother. And if you can objectively acknowledge that you were able to reasonably manage the many difficulties that life often throws at adults even when you were between 21 and 31. Then you are capable and just need to give yourself a chance to get use to it again.
Please also consider that if at 41 you have no savings, no investments, then perhaps you must reasonably say to yourself - maybe I should take advantage of my situation, meaning if you don't pay rent pretend to pay yourself a rent and place it in savings. If you don't pay for food or electricity, water, phone and internet service then figure out what a budget for these necessities looks like and add that to your savings.
Working towards a plan will put a smile in your heart and make the days that pass go more calmly. You are in control.
In the meantime, can you take a course online or at a local community college?
What are your interests?
If you can see a student counselor in a college take advantage of that too. Let them know your situation and that you need straight between the eyes guidance.
Information is gold. Many of us have just need a little nudge at one time or another at special times in our lives. Sometimes it's from a counselor, a teacher or a friend.
I wish you peace and happiness.
In my earlier years I was a mess. And I was perusing a sports entertainment career. That’s not something I physically can or want to do now.
There’s no taking advantage of the situation. We live in the projects. I still have to pay rent. And housing just raised the rent. We go half on the internet. We get some food stamps but not much because it is calculated from my gross pay. They include the child support even though I don’t get that money. Anything else we need for the house, I pay for. Plus I have my own phone bills and things to purchase.
So it’s not like I’m here saving money on my 160 a week paycheck. Which is definitely not enough for college. I have no interest in loans and more debt. There’s nothing I want to learn. At this point I just want peace.
I know I sound pessimistic but I am lol
If your sister is blocking appropriate care for Mom, then she is not an appropriate "proxy." You would benefit from meeting with an Elder Law Attorney to discuss your mother's placement.
As for you, where would you like to live? Decide that and then start applying for jobs. Find the job and the location and then rent a U-Haul and move. Dr Phil says, "We teach people how to treat us." Every time your sister plays "tug-o-war" with you, you let her win................time to get mom placed and get you a new life.
See a lawyer, see a counsellor, get your own life, wants and needs met -
somewhere else. Now! Before you no longer have the will or energy to do so.
You need to take time away from your mom even if its just one to two hours a day get outside and get some fresh air. Go talk to a minister on the way you are feeling. Get you some help.
With the Alzheimers you will need more help. I can understand the military it does take time but I don't think its taking that much time like you said. They may need to make your mother a dependent then they would have help getting her there and be with them.
The memory problem will get worse believe me I know from experience with my BIL I am his representative payee for soc sec and I am there at his place more now than I was before. The doctor told him he can't drive anymore so I have to sell his car because where he lives we can't register it no license driver. He doesn't understand why he can't drive he doesn't see himself needing anything.
Prayers that you find a way to get some of your life back. But you need to have a fund start putting $10 a week away and don't touch it. Do this for yourself.
I agree with BurntCaregiver: you need help: psychological/emotional help - therapy of some sort - to help you gain life skills that will allow you to stand up for yourself, set boundaries with your relatives, disengage from this unhealthy situation and live a full life. I realize that getting that kind of help will be difficult if you lack financial resources, so it will take some searching on your part - perhaps starting by contacting social service agencies in your community.
The reality is, you can't place your mom because you don't have the authority to do so, and you haven't made a successful argument for it. Nor can you make any family member take her in, but living a full life doesn't mean you are abandoning your mother. Paid caregivers - even live-ins - are not on call 24/7.
Good luck. I wish you well.
Another thought…can you use the money that you’re getting paid for her care and pay someone else to do it?
Consider pulling a third party professional who can help you set an intervention meeting with them if they aren’t willing to do what is needed to help share the load.
Sending prayers for God to help you and prepare their hearts to help..
Actually, this is no different than any other job. You give notice and let sister know when you will no longer be mom's caregiver. If you stay in same residence, you make an agreement to pay rent or agree to limited caregiver role for zero rent. Otherwise you get your own place to live.
You need to explain you cannot do this alone and need to get a job that affords you to pay your obligation to children. They need to have a back up plan to take care of mom so you won't lose another job due to excessive absence or tardiness.
I'd tell her you will be moving out or she is to move mother out by ____ date. Stick to it and don't let her bully you. If she doesn't come through, your mom will have to be hospitalized for something and you tell them you can't care for her anymore. Give them your sister's and aunt's contact info and leave, turn off your phone. I'm sorry you're going through this. It's time to take care of you and let the other family take over Mother's care.
Are you willing to do that? If not, you are stuck with no end in sight.
if your mom is hospitalized, tell the hospital social worker that you can’t do it anymore and they will help find placement.
This is your life and you get to choose.
Your sister in Japan may be proxy for your mom, but she isn’t proxy for you.
Is your sister the "Proxy" controlling all of the $$$ and you are doing all of the work?
You have to be careful in a family that the powerful (or stronger) personalities don't rule. Oftentimes in life, the one's who make a lot of noise don't exactly do a lot. This also goes on the in the workplace which you may have witnessed firsthand a person who in your estimation is not the greatest worker but they somehow end up getting promoted and win "employee of the year". You say to yourself, your kidding me right. They know how to plan the game to their advantage.
The quieter one's in family and/or work are on time, fulfill their obligations, meet deadlines, take exactly a one-hour, etc. You see what I am getting at. Their good deeds go unnoticed. They don't make a lot of noise and draw attention to themselves.
The goal is: When Mom passes you need to be still standing--in once piece.
Many women during the Pandemic had to work remotely. Most I speak with, myself included, love it. This is a very good economy. There are jobs on every street corner. Make yourself a schedule.
Next--pay yourself first. Put $$$ into an IRA faithfully. Pay down all debt, even if you have to drop your cable. Join your local Y, (swim, etc.) and be part of some group--not online, in person, where you show every week and meet people and they notice and check up on your if you are not there.
This is the whole thing. If you get paid as a Caregiver and your mother has to go into the a facility or when she passes then you are in bereavement without a job. Then you have to immediately conduct a job search while your grieving.
In my own humble opinion, some type of formal employment, now is a great time there are all kinds of contract based, remote. All you need is a computer.
For $20 a month your phone provider can put a camera on your phone and a sensor on the door if Mom leaves the dwelling.
I would start with a one morning (4) hour per week Respite Dementia Care program for mother in the neighborhood with transportation included. Some are on a sliding scale. This will give you a sense of security for mother and you can have a block of time to yourself without worrying and make some plans, write them down.
I'm in the same boat but I am working and I have wised up. I set boundaries and I don't wait on everyone when they come.
Ask your mother's Primary Care Physician (PCP) to write orders for home care and/or Respite. Contact your mother's health insurance carrier and find out what is included.
Have the Church people come on a Sunday. Widen your circle. Find a good hairdresser or Natural Instincts (CVS) home products and do your hair.
Clean out your closet, buy some perfume and get your groove back!