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?
Do not count on your family for help — they clearly won’t help. However, especially if your mom is incompetent, you can proceed without them. That’s what the Legal Aid lawyer can tell you how to do. Once your mom is taken care of in the nursing home, her house will probably have to go on the market. However, that will still give you time to make some plans yourself. Perhaps you can temporarily stay with one of your siblings while you seek work. It’s never a good idea to fall behind on child support, but you may be able to work something out with your ex and the state while you’re getting a better-paying job.
You clearly can’t go on as you have been doing. There is a way to be found to extricate yourself, but it’s always much harder to find it from inside. Please don’t let guilt stop you from getting your mom into a nursing home — you’ve been a devoted child, and still will be later. Once she is cared for by others, you will have the emotional freedom and physical freedom to turn your attention to your finances.
A final thought: In some ways, you’re stuck choosing between caring for your mom and caring for your son. Your siblings want you to choose your mom, but your child needs you, and the court will push you to care for him. That is the right thing for you, for him, and your mom.
Best of luck to you!
I would love to put mom in home but my sister has that authority and she’s refusing!
One approach might be to ignore it, and move your mother into appropriate care. Apply for Medicaid, if that is what it takes. Sister is a long way away, knowing about it and then intervening will be difficult for her if you are just ignoring the whole ‘proxy’ issue. If she then objects, it’s up to her to work out her next steps. And they will include making sure that your mother is adequately cared for.
We all know the old line about ‘possession being nine tenths of the law’. It’s not always true, but many of our posters ask for permission, when the best thing to do may be just to get on with it. That leaves it up to the ‘non-permission’ people to work out a better alternative.
One approach might be to ignore the ‘proxy’ claims, and move your mother into appropriate care. Apply for Medicaid, if that is what it takes. Sister is a long way away, it may be hard for her to find out about the early stages or to intervene, if you just ignore the whole ‘proxy’ issue. If she then objects after it's done, it’s up to her to work out her next steps. And they will include making sure that your mother is adequately cared for.
We all know the old line about ‘possession being nine tenths of the law’. It’s not always true, but many of our posters ask for permission from someone who disagrees but doesn’t help, when the best thing to do may be just to get on with it. That leaves it up to the ‘non-permission’ people to work out a better alternative.
I don’t know if you’re male or female (not that it matters), but I would sit down and ask your mom questions about her view of your life. “Mom, why do you think I have to sacrifice MY life to take care of you? Why does Sister get to be married and have a life outside of the family and I don’t?”
Did she do this for her parents?
Note - ‘why’ questions are usually discouraged in discussions because it can place the other person on the defensive.
In home care for my area runs about $25 an hour. It sounds like you’re doing a lot more than 10 hours a week.
One suggestion I have is to get a part time job AND cut the strings - don’t contact her while you’re at work. Or you might look for legitimate work from home opportunities - they do abound now.
One thing I did when I felt stuck in a job I disliked was to start brainstorming ideas in a notebook—one of those cheap things that are a dollar at the store. I'd research one career idea, jot down some pros and cons, and usually end up putting a big X through it when I realized it wouldn't work (maybe it took too much additional education, maybe the pay wasn't good). But if I learned something that was useful, I would highlight that paragraph. Later I'd flip through my notebook of nixed career ideas and re-read the highlighted lines. That would usually give me an idea for a new direction to go in. Because I had written down all of my thoughts on various occasions, and kept the parts that were useful to me, it felt less like idle dreaming and more like I was building my escape route—laying down tracks. And it forced me to be really honest with myself about what I was and wasn't capable of. Eventually, one of these brain-storming sessions led me to information about a short training program that would start me in a career I had always thought I'd be good at. I'm in that career now. By the way, I was around your age when I started the notebook.
This approach might not work for everyone, but it's a thought. Figure out what you can change about your situation, amongst all the things you can't change. To be clear, I'm not talking about career ideas—that was just my own personal example. I'm talking about how to get out of this caregiving situation and start living your life and providing (better) for your child. Research the ways out, a little bit at a time. Even if it takes a while to figure it all out, you'll feel like you're doing something. Good luck.
You wouldn't say the OP has no life skills, but the reality here is that the OP really doesn't have any.
The mother has diabetes and the OP thinks she's also developing Alzheimer's. The OP is 41 years old, has been caregiving for ten years, and has lost jobs because of mom's needs.
Do you not see a pattern of behavior here? The OP's financial situation is not the mother's fault. They state in the comments not being able to earn more that $250 a week for years and also has to pay child support.
No insult intended here, but this person has no life skills. They cannot make a living let alone provide for their child. There are many people like this and it's nothing to be ashamed of. People can learn and get help so they can learn to function in today's world. Many use being family caregivers as an exuse for not being able to make a living. They make scapegoats out of the people they claim to be caring for to cover their own inadequacies. This is wrong.
If you think the OP can walk away and go get a caregiving job where they're well paid and appreciated, then you're not being realistic.
I was a caregiver for 25 years and let me tell you I can count on one hand the jobs that paid well and came with an appreciative family.
Caregiving well paid or not, is a tireless job and often fraught with family drama that is inescapable.
What would happen if you were no longer there? I am sure your Mom would still get the care she needs some way, some how.
Look at places like care.com or indeed for live in caregiver jobs. Apply, get hired and tell your siblings "I've taken another job and will be moving out such and such date." You are mom's proxy you need to figure out what YOU are going to do with her.
This will probably destroy any relationship you have with them but you just might live a better life. And perhaps time will heal the wounds.
If she is competent, has not yet been diagnosed with dementia or declared by a doctor to be incompetent then she does not "need" a Proxy.
If you are getting paid from an agency to care for her then give notice and they will have to find another caregiver.
Between the time you give notice and the caregiver starts you look for a job. One that will pay you a living wage. (between now and then save up as much as you can)
To give you a break would your mom be a candidate for Adult Day Care? a few days a week for between 6 to 8 hours would give you a break to care for yourself.
Would she do well at a Senior Center for a few hours a day?
If mom can be left alone for hours at a time next time you plan to go out and she says she is sick call her bluff and call 911 and have her transported to the ER. The hospital staff can contact your sister for instructions.
If when EMS arrives and she says she is fine then you can leave with them and if she says you can't leave because she is "sick" they can then transport her.
You answered your own question by admitting that you are at rock bottom.
That's the first step and it's always upwards. If your sister in Japan is the one who has mom's legal authority to make decisions, she is the one legally responsible for her.
Not you.
Clearly you have no life skills and cannot manage on your own. That's okay and don't be ashamed of yourself. There are many people like you. You can learn and there is help out there for you.
Please seek out mental health services. Be honest about how despondent you are and that feel you're a danger to yourself and your mother. Be willing to voluntarily go for a 72-hour mental health evaluation. Don't be afraid. This will be a step in the right direction for getting you some possible financial help and housing.
I was where you are with my mother too. Only I was fortunate enough that my ex-husband (soon to be new husband) stepped up and helped me.
There's help out there for you. Please seek out help for your mental health. Even if you have to go to the hospital on your own and tell them that you're at the point where someone is going to get hurt. They will connect you with a social worker who will help you.
I wish you the best of luck and hope you keep us updated.
My ex sister-in-law helped with my dad and then went on to care for 3 other people.
Or will you just suddenly be on your own immediately with no way to pay the bills and no access to funds? Because the agency will not be paying you at that point.
I say all of that because the time to act is now when you can do something about it. Later on, your hands could be tied and you really could be in a very bad spot with no options.
As much as it feels like it, they can't force you to care for her. It is a choice. Sometimes we have to choose between one really crappy choice and another really crappy choice. But we still have choices. They can't force you. You have options. You have to take the first step to decide what option you want. It's not an easy step. I don't envy you. But the only way anything will change is if you change. Your family will 100% continue to expect things to continue to as they have for as long as you continue to do things as you have. Nothing will change. They have no reason to change their behavior. Only you can change the situation. And that will involve doing things you don't really want to do.
You know you need to get out of there. Your problem is having a place to go and you need a better paying job for that. Your in a catch 22. Damned if u do, damned if you don't. You realize that if you walk away, you will probably lose your family. Just a thought came to my mind. A good job for you would be a maintenance man/manager at an apartment complex. Usually you get an apartment with that. You have to be paid at least minimum wage. You kill two birds with one stone. Get a job and housing too. Then you say to dear Aunts, "u think u can do better, here she is. Wouldn't that be nice.😊
Do you have any friends willing to take you in just till u get a better job? Then you have time to maybe rent a room, a loft above a garage?
She is lazy. She will not make a full meal for herself. She will let leftovers rot in the fridge. She will not eat reheated food. She’s annoying and I can’t force a spoon in her mouth. If I put leftovers in front of her she complains and whines and does not eat. She will stubbornly let her blood sugar drop. And I have to be here to care for this child.
I should probably specify that I live in the projects in NYC and all my homies are not in great places either. They all rent rooms. The way it is here, if there’s a room for 700 or less, your room mate is a crack addict or the building / apartment has health hazard/safety and security issues. A safe room is out of my budget. If push came to shove I probably would have options, but it would be a lot of couch surfing around with my cats.
I wish my sister would take her to Japan to live with her, but she just won’t. I’ve been getting the runaround about it for a while. Every time I ask she tells me “it’s a process” (she lives on a military base). Enough is enough. When does the process go through??
thank you for taking the time to respond.
I think the former may be the case.
Give your sister notice of when you will be leaving.
Whether you have initially to start living at a shelter or whatever the case is, you CAN find work now in a booming economy. You have been caring for your Mom. For YEARS. There are many jobs as aids in ALF and MC that will train you. You will work up to being able to afford perhaps a room in someones home, a shared apartment. Then to your own studio. And on you go.
Those who op to be slave labor for an elder write often to the forum with ruined mental health, with no job and with no place to live. That will happen for sure eventually, and it is easier by FAR to address at 41 than it is at 61.
After you resign your duty your Sister may agree to work out payment and a contract for you to remain for a while. If you that payment will allow you to save for a small apartment and you can tell sister you will agree to do this for one year period. After that it is up to the health care proxy, your sister, to place or to care for mom herself.
Best out to you. Consider some low cost/no cost therapeutic care such as group counseling to help support you. We often stay in a situation not because it is GOOD but because we have formed a habit and it is a safety in the "known". It takes great great courage to move on your own to change your life, so be certain to stop and pat yourself on the back as you move forward and slowly learn to advocate for yourself and your ONE LIFE. I wish you the absolute best.
I sometimes think that men who really do care about their loved ones get given a very hard time and very little credit for it. Poor OP, I second your best wishes to him.
I was living with my mother in housing. My relationship was right across the street. I was basically living in both places because I needed to take care of my Mother.
I get paid through an agency to care for her. Having a full time job elsewhere is impossible with my Mother, so quitting as her caregiver makes no sense unless I want no income whatsoever. I’ve had part time jobs and mom makes them all difficult to hold. We’ve had home aids through the agencies but they don’t help well, and I had to do everything anyway, so now I get paid through the agency to do their job. She is a diabetic, I take her to dialysis several times a week, I run errands. She will not be cared for if I am not home. She won’t even eat leftovers because she is a stubborn child. So I can’t prep food in advance. She wants it fresh or she WONT EAT. This is an ongoing fight.
If I had the money to move out, I could consider it, but where can I go with 160 dollars a week after child support comes out? My checks haven’t been more than 250 for years no matter how many hours I do. I have no savings for rent or security deposits to even last me until I get another job if I move.
I went on a trip for a week once. Mom went to the store, bought a bunch of snacks and I came home to her all screwed up and sugar high. Did my family call or come check on her while I was gone? No. If I leave they’ll leave her alone for a month thinking I was being dramatic and that I’ll come back. And what’s going to happen? They know I’ll crack because they’re going to play chicken with my Moms life.
On what basis do they have "a lot to say", other than the sister who's proxy? But she's not proxy over you, nor does she apparently have any legal control over your actions. How did they gain this control?
Have you given the aunts an ultimatum, such as that you need financial as well as physical help? That's something to try, and indicate that you can no longer provide services if help isn't forthcoming. And start job hunting ASAP.
The only method I can think of to override proxy authority is to file for guardian or conservatorship, but you'd have to ask that a guardian or conservator be appointed, and it wouldn't be you.
As I read your post, I couldn't help thinking of Cinderella doing all the work while the sisters bossed her around. You don't have to be a Cinderella, but you can escape this literal prison by announcing your intent to live your own life, and find ways to do so.
You mentioned one sister is in Japan. W/o seeming intrusive, are you of Japanese origin? And, if so, is your subordinate role something that would be expected of one sibling?
I also completely agree with CountryMouse's advice.
Whenever I approach my family with my stresses, struggles and concerns or how I need help, they have this ability to shut it down. They won’t hear it. It ends in screaming matches and one time over zoom, I blacked out. Even seeing that, they didn’t care. They didn’t think “Maybe we should help him, he’s losing it”.
“They have a lot to say” meaning they call to dictate how I should feed her, what she needs and things I should be doing, yet they have no clue what happens here because they aren’t around. Once in a while when I’m being stern with Mom, she will call them to complain that I’m being bossy, and they all run to yell at me. They don’t understand how stubborn she is, or how she acts more feeble than she is to trap me here. Everything I do for her is for her good, and she’s the best she’s been since she fell ill.
I also thought about guardianship, but I don’t have the money that legal fees would cost to do so. After child support comes from my check, I take home 160 a week. Never more than 200. I have no savings. Everything goes into survival and taking care of Mom and my son.
If I leave my mom, my family would let her fester until I came back or until she died. I love my mom. She’s a pain in my ass but the decision to leave is a very complicated one.
At this point I have to really sacrifice it all and be homeless under a bridge somewhere to be free??
Change 'aunts' to 'brother', and you described my situation....to a 'T'
1. Prioritize finding a job.
2. Give up the caregiving allowance.
3. Move out.
I am only guessing, but my guess is that you moved in with your mother after your relationship ended and you are now stuck. Unsticking will not be easy but that is what you have to do.
As your mother's proxy, your sister is responsible for sourcing care for her but your sister does not have the authority to make you provide it. There is nothing except fear to stop you leaving. Your only duty is to tell (not ask) your sister what your plans are. Telling mother is optional, but you are going to have to train yourself not to come running every time she squeaks.