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.
IF those assumptions are correct, then you need to find some temporary affordable housing before you begin your entry level job. Is there a relative with a guest room you could rent at a nominal fee for 3-6 months? Someone needing a roommate? A rental available cheap provided you clean and paint during your tenure? A garage apartment available for someone who maintains the lawn?
It might also be possible to become your mother's tenant and only include your rent in her income stream. The Agency on Aging social workers should be able to provide some guidance in how this might work.
It is an unfortunate fact that our current welfare programs provide a better standard of living than entry or less skilled middle class working wages, particularly if your job does not include health care. Unfortunately this leads many people to choose to remain on welfare as long as possible and not transition to the working class where an individual can eventually earn higher wages, purchase a home, and have much more control and lifestyle choices.
I agree and do think ultimately I will have to move. It makes me very sad because I know mom does better emotionally when I live with her. I have looked into rooms for rent/room shares in my county and have noticed that many offered are by men who will give a discount for ‘maid’ services and it kind of creeped me out. All are priced very high and would consume my entire disability benefit. Then including utilities, student loan payment, car insurance, gas, credit card payment, phone etc. I don’t think I could cover it even with an entry level job plus my health problems.
I will look for over the garage type apartments like you mentioned and contact Area on Aging about becoming a tenant of mom’s if possible. However, bothvour names are in the lease and since I’m her representative payee, I’m not sure if that would conflict.
So true what you mentioned about the welfare system. I thought the caseworker would be happy that I was back in school and trying to not let my disability and mom responsibilities keep me from a chance at a decent future. She went through a list of all the benefits that would be lost, with many warnings and it has been feeling hopeless after that.
Your reply was really helpful and gave me some good things to think about, thanks so much!
You should be able to break away without effecting Mom.
I’m not sure I understand, ‘This should be a conversation for the people who help you’?? I am an only child, my father passed many years ago and I don’t have a family support system. It is mostly just mom and me. I have spoken with caseworker/case manager and they just warned me of all the specific benefits that will stop if our combined household income goes over the threshold and really not much other advice. In fact it kind of seemed like they were steering me away from having my own life.
Mom is on SSD and has Medicare. Our state no longer has full coverage Medicaid, we have been migrated into keystone first/health choices etc. similar to Medicaid, but has much more out of pocket costs and copays. Because we are low income she qualifies for the ‘extra help’ program that pays her Medicare monthly premium (approx. $100) and full prescription coverage, she pays $3 or less for all her prescriptions at this time. Once our household income crosses he threshold she will no longer have the premium paid and it will be deducted from her SSD monthly and will not have prescritpion coverage.
I also receive medical coverage that will cut off if income goes above the threshold.
I am really lost.