Caregiver's Home Companion Caring for someone who has trouble hearing the phone?

Posted March 3, 2008

Ask An Expert

Finances: Digging Out of a Caregiving Money Pit

Q. I'm hoping you may be able to steer me in the right direction. I've taken care of my relative for 10 years. I moved her into my home after she survived a stroke that was compounded by dementia. Her pension and Social Security have covered our living expenses as I am unable to leave her home alone to go to work.

Because her income level is above $1,869 per month, I could not get state services such as respite. I recently placed her in a facility because she was falling in the middle of the night, and I was afraid I would find her one morning dead from hitting her head on the hard tile floor.

After not working for over 10 years, I quickly found no one would hire me because I've been out of the work force so long.

I applied for her Medicaid and even jumped through the hoop of opening up a Miller Trust (QIT) required by Florida Medicaid because she has income above $1,869 to cover the nursing home. But I had to appeal the application denial after they said one form was missing (the nursing home was sending bills stamped do not pay).

Meanwhile, because I cannot find work, I was getting behind on my mortgage and utilities. So I borrowed from my relative’s Social Security and pension that directly deposits into our power of attorney joint acct. Now it seems the nursing home wants their money. I've paid them all that was left in there, but still owe them a tidy sum as they charge over $7,000 per month and it’s been four months. I cannot afford a lawyer as I still haven't gathered enough money for my $1,400 mortgage this month. I'm scared to death.

I think of all the money I saved the state and the federal governments for 10 years of care and wonder why do they not have a program to assist a transition back into the workforce and help the family caregiver meet expenses while doing so. I'm scared and need somewhere to turn. I hope that you may know of something.

Mandi F., Florida.

A. This situation in which you tried to do the "right thing" by providing care for your relative and now find yourself in dire financial straits must be extremely difficult and emotionally distressing, especially as you point out that you are now in danger of falling behind on your own loan payments.

Most states have taken a tighter approach in how they view the use of a Medicaid beneficiary's funds. As it appears you had no legal contract defining the provision of room and board and/or services for this relative, it's now being left up to you to come up with the funds which once belonged to your relative. 

Since we cannot go back in time, the steps you now need to take involve establishing every "good faith" effort with the nursing home, the state Medicaid office, and your own bank. 

Here are some suggested steps:

1. Contact your local senior center. Are there caregiver support groups? Ask to speak with the social worker or public health nurse at the center to learn if they know of other families who have hit these kinds of issues and what, if any, suggestions they might provide.

2. Contact a credit counseling bureau. They can advise you about how to stay current on bills and help intercede on your behalf with creditors.

3. Talk with an elder law attorney to learn what steps can be taken to help you establish the fact that your relative's funds were used on behalf of your relative's care.

4. Talk with your bank loan division. Let them know just why you are at risk of falling behind on payments. The bank may be able to help you keep your home but they will want to see good faith efforts made by you toward that goal.

5. Register with your state employment/career service office. Begin to take classes on resume and interview skills. If available, take classes in computer skills. Computer classes may be available at the state job center, local community center, senior center, etc. Do whatever you can to begin to build your job skills. Registering with the employment center will also demonstrate that you are seriously invested in getting into the workforce.

6. Consider that many private agencies are hiring for companion caregivers. You may find that your caregiving experience is an asset to these kinds of employers.

7. If you are getting met with only roadblocks and truly feel you cannot obtain help, then contact your state representative's office. I've known of a few folks who have done this after having explored all other options and sometimes additional and helpful alternatives have been offered. 

I hope these suggestions prove helpful. Keep reaching out, keep a notebook handy for documenting calls and contacts, and try to get enough rest and proper nutrition during this very stressful time.

This answer is provided by Paula S. McCarron, a writer with more than 20 years of experience in healthcare, including nursing homes and hospice. Her writing includes extensive reporting on caregiver compensation issues. She lives in Chelmsford, Massachusetts, and can be reached at

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