I am a caregiver for my mother in her 60’s who suffers from severe osteoarthritis/needs knee and hip replacements and has schizophrenia with paranoia/depression along with some incontinence and hoarding tendencies. I was named her social security representative payee in my my early twenties as she can’t manage money. She faced evictions and utility shut offs most of my entire life. Our relationship feels more like I’m the parent. I do have a medical disability as well and we live together.
At 30, after spending almost my entire 20s as her primary caregiver I realized that I have an almost blank resume and no real life of my own outside of her care. Over the last few years she finally aged into and qualified for our Area on Aging and after much pushback I was finally able to obtain a waiver subsidy to hire in home care aide to help her so I can go back to school, finish my degree and possibly have a future. We are a very low income household and qualify for state health insurance benefits. However, both our income is counted together as the household income and if I earn more money, then my mom/our household will lose all the benefits and my financial aid package as we are very close to the limit anyway. I was actually advised to look for unpaid internships to not risk my package. Once out of school I won’t be earning anywhere near enough to cover all the benefits lost with entry level positions. We would not be able to make the rent if we lose the housing subsidy either.
I am very upset that our finances are tangled in such a way that I can’t afford to move/live on my own with just my income and any attempt I make at earning more to help myself get ready for my future jeopardizes her/our benefits now. Most of these benefits are not easy to replace/reinstate either. She was on the rental subsidy waiting list for YEARS and they lost her paper work many times before she was accepted and it took over 2 years to get waiver approval for in home care aid. I am very cautious about losing these services because I fear she may not get them back and end up with a a large care gap while on endless waiting lists again.
Can anyone relate to being financially trapped in a caregiving situation? What did you do to get untangled? I have spent years finding and setting up medical services etc. for my mom to protect her and kind of forgot to look out for myself. I love my mom and thought I was doing the right thing as her daughter. Now I feel I can’t afford to move forward. I am even more scared that it will be worse when I graduate and have student loan payments to add in the mix. I love my mom and still intend to oversee and care for her, but living with her is becoming increasingly difficult and toxic for other reasons as well as finances. While she says she supports me going back to school, she sabotages, undermines and lays on the guilt when I try to make school a priority. Often I feel like I am on a sinking ship and she has a hammer and is making more holes.