In November of 2007, I returned to the workforce after staying home with my three kids for ten years. My youngest child was in Kindergarten, and I needed something beyond the mommy and household stuff. I also wanted to start contributing financially. We had decided to sacrifice lots of things, especially money and the “extras” it can buy, so I could be home with our kids. It was extremely important to us. Two weeks after I returned to work, my husband’s tumor was discovered. In addition to the toll on my husband’s health and the incredible stress it placed on the family emotionally, it began to destroy any hopes we had of financial freedom. Over the past almost 7 years, any hope of financial freedom is gone, and has been replaced with the dream of just being able to be comfortable every month. By comfortable, I mean that the mortgage and monthly bills are paid, we have enough food on the table, and perhaps we can do a few fun things during the month. Our hopes of providing college educations to our children, or going on great vacations, or giving our daughters big, beautiful weddings are gone. I don’t know if I will ever be able to retire.

We are in survival mode and have been every single month since my husband stopped working in October of 2009. It’s a way of life for us. It is possibly the absolute most stressful part of my life. It’s like constantly dangling from a noose, trying to hold yourself up so you don’t suffocate.  In addition to raising three kids, managing a household, and dealing with an ill husband, I work to try to make ends meet. Medical retirement and disability payments barely cover the mortgage and food. There have been times we considered shopping at the food bank. We get energy assistance so our electricity doesn’t get shut off in the winter. Our kids qualify for free or reduced lunch. We didn’t pay our mortgage for 6 months, and still could barely make it. We get free stuff for our household from the dump. When we have a little extra, we do something fun so our kids don’t have to miss out all the time. We do our best to give them things, and as a result we sacrifice what we want, or live with that much more stress. They only get one childhood, and I refuse to make them feel “poor,” or let them feel as if they are missing out.

My husband and I have both worked since we were about 12 years old. We both have a good work ethic, and we do what we need to do to provide for our family. We always paid our bills, and were responsible with our money. Then the illness took it all away. I have sat around dinner tables where people talked about how “irresponsible” people are who “live beyond their means” or don’t “keep up with their mortgage.” They criticize people who need help with mortgage programs, or who “live off the government.” Comments are made by people who have no idea what it’s like to be in that situation. People judge with no regard to the facts. They judge people who would do anything to be healthy and provide for their family. Living this way isn’t laziness or irresponsibility.

We commonly hear comments from friends or family members who complain about how they struggle or how upset they are over some financial stress they are having. These same people are hiring people to clean their houses, or are taking their kids out to eat or to some fun event several times a week. They are planning multiple vacations every year, and buying new cars. I even had one person tell me they were a little upset that they are now making so much money that they are in a new tax bracket and no longer qualify for the child tax credit. Their tax refund was going to be less this year. I sat there like an asshole and gave sympathy, when what I really wanted to say was that I would literally give one of my arms to be in the next tax bracket, rather than struggling every damn day of my life. I had just told her that we qualified for a new child tax credit because we are low income. These same people know how hard it is for us. Sort of.

There is a shame that goes along with the way we are living. I don’t know why. Shame implies that we have done something wrong. We haven’t. We’ve tried to do everything right for ourselves and for our children. I never, ever share our true financial story with anyone. We pretend it isn’t as bad as it is. People have some idea, but they don’t know what it’s really like. It’s exhausting and hopeless and depressing and frustrating. The stress leaves me teetering at the edge sometimes. Yet, somehow, we always make it through. We are lucky to have some family and friends who have been Godsends at times. There are times we wouldn’t have made it without them. The struggle is never ending, and sometimes people get tired of helping. We don’t know if we will ever be able to repay people for what they’ve done to help us. There is no end in sight to the struggle. We try to pay it forward and help other people when we can.

People talk openly about the physical, emotional and psychological effects of chronic illness on themselves and their families. But when it comes to money, people keep it to themselves. Yet, I suspect it’s one of the most detrimental aspects of living with chronic illness for everyone involved. It is by far the most stressful part of my life and affects my mood, stress level, health and outlook on life every single day. The nonchalant comments from other people make it even worse. I don’t know what the solution is, but putting it out there without shame is a good start.

by Renee PalumboRunning on Empty

Written by Renee Palumbo
Renee Palumbo is living life with a chronically ill husband, three children, a dog, and a cat. In the 10 years since her husband’s diagnosis, Renee has learned that life can change in an instant, and we all have choices in the way we handle a crisis. She holds a degree in journalism and sociology from the University of Massachusetts at Amherst. Renee writes a blog called Running on Empty, which is about seeing the humor in life, dealing with the stress of a family member’s illness, and looking at life from a slightly warped perspective. She hopes that by expressing her thoughts and feelings, she can help another caregiver feel less alone and more understood. Read more of her thoughts at runningonemptyblog.net.

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8 Comments

  1. I can relate a lot, my wife had a liver transplant 10 years ago and that took a lot out of us. Then we were hit with a big one, her heart. We just about lost her a couple of times, we were told she has 2 leaking valves and plus many other health problems on top on this. She is 60 and we have been marry for 30 years now. It is hard, from hold down a job and caring for her. It is hard being care giver and I feel for her and many others. And as my wife has said ” I’m proud of you that you never give up”.

    Reply
  2. I got you babe! And I hear you. That life coach? Do you charge for that service? Sorry, I got no money to pay you. Too many people out there in the same situation. False hope. It’s not going to be okay. Who helps with that? I put my story out there, all of it. The good, the bad and the ugly. And I’m not stopping….. Tell your story. All of it. The only shameful thing other than what is happening to you, is other ‘experts’ telling you how to do it better.

    Reply
    • Actually, Phil, many of the services I offer caregivers are at no charge simply because I know from experience, what it means to be a caregiver. I am sorry that my input has caused you offense and consternation. Unfortunately, because of my circumstances, I have limited availability on my calendar to help all of the people who might benefit from caregiver coaching.

      Reply
  3. It would be wonderful to be debt free, but in my situation very unlikely. My husband has a cancerous brain tumor. He is in active treatment. The medical bills keep coming. We make too much money for assistance, they do not consider medical expenses when the forms are filled out., no food stamps, no heating assistance, no break on medical expenses. We make to much for the senior apartments in our area. Our home is in need of major repairs and we still owe $37,000 on the mortgage. My work schedule is down to 1/4 of what I used to do, and his disability pay. Well, it is 60% of what he used to make, without overtime. In reality it is less than half of what he made 9 months ago. We are down to one car, and it is paid off, 2008, something is bound to need repaired on it soon. I feel the struggle, it is nauseating, irritating, humiliating and exhausting.

    Reply
  4. As a caregiver life coach I always address the financial stability of my clients. As part of the overall coaching experience, financial stability coaching and personal development coaching touches on the four pillars of person hood: the physical, intellectual, emotional, and spiritual.

    I just completed taping a new program for cable TV titled The Caregiver’s Corner where I interview professionals who help navigate the stormy waters of care giving. In speaking with a wealth and estate attorney, finances are the security net that every caregiver must be attentive to. My wife and i have found that becoming and remaining debt free is the key to managing life and care giving. I know that is not everyone’s reality, but having a plan can help and that is where life coaching comes in.

    Reply
    • How does a disabled person become debt free without starving him/herself, or becoming homeless? My daughter’s s.s. income covers some of her medical expenses not covered my medicare (it’s amazing how many doctors refuse to take medicare) and maybe some of her food, and maybe some of her mortgage, but it doesn’t cover all. I am raiding my retirement fund to keep her phone & water bills paid enough so that her services aren’t turned off. She is too sick to figure out how to move & sell her house, and hasn’t been well enough to pull together all her not-yet-filed taxes so she hasn’t been able to file for bankruptcy. Her situation is quickly spiraling out of control, and I am nearing 70, with a husband with dementia & a brain tumor. The insurance and disability systems seem to be rigged against those who need the services the most!

      Reply
      • Financial stability doesn’t always mean debt free. That is just the place from where my wife and I strive to operate. It is better to have a plan even if the plan is to effectively and efficiently use the resources you have despite debt. It appears that my input has offended some so I will just leave it at that.

  5. I really feel for Renee -although my experiences as a caregiver are different from Renee’s, I can empathise quite a bit with her situation. I’ve found that being a Carer not only rearranged my Life but also played havoc with my financial position (such as it was). As I was caring for both my children, I resorted to retail therapy to try to make my children’s lives happier by buying them presents, taking them on as many outings as I could and spending pennies I didn’t really have to show that I loved them and wanted to care for them. I also used this retail therapy to try to negate the my very negative feelings (therefore, creating a positive out of the truly dreadful black hole that was my life) – so I have some inkling of how Renee feels, and I certainly will go on her blog – she is a very brave lady and I really admire her.

    Reply

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