Caregiving Special Focus

Solutions To Your Caregiving Situations Throughout Your Caregiving Years

When Caregiving Causes Debt Surviving to Find a New Life We asked Carmen Leal to share her story. She cared for her husband, David, diagnosed with Huntington's disease on their third wedding anniversary when he was just 43 and Carmen 40. David died in December of 2004. Caregiving: You cared for your husband for 12 years. What financial challenges did you encounter? Carmen: Because David never passed probation with his job, even though he had been employed by for over two years, he was let go with no benefits. We had no health insurance for myself or him, no life insurance, no retirement. When David and I married, I owned a marketing firm in Hawaii, had a growing music ministry, and had been asked to run for the House of Representatives in my district. They even had a war chest for me. My future was about as bright as you could imagine. With David's diagnosis I lost everything. I closed my company, moved 4,000 miles away, lost my home and every penny and all benefits. Caregiving: How did you manage? Carmen: We moved to Florida thinking it was a more affordable location. It was a disaster because David was in his forties and did not qualify for programs. In the beginning my church in Hawaii helped with Ensure and various jobs needed done around the house. When we moved we were on our own. I used several credit cards to purchase the Ensure and medication and juggled. I was not working and had, in addition to David's social security of $1,000 a month, $590 child support from my children's father and a combined $600 social security for the children. David was on a liquid diet requiring 5,000 calories a day along with, at times, over $700.00 of medication. With rent of $900.00, food and clothing for teen-aged boys, phone, car payment and insurance, etc., you can imagine I did not manage well at all. A couple of churches helped now and then and I did get utilities paid once by the Salvation Army and a furniture bank in Orlando provided furniture. Eventually David got Medicare which helped in some ways. (Editor's Note: Persons under 65 years of age and disabled for more than two years can qualify for Medicare benefits.) I learned to manipulate the system and was able to get his food and medications covered through Medicaid for a time. Eventually David needed more care than I could provide and I was able to get him placed through Hospice at a nursing home. When Hospice dropped him because he didn't get worse I was forced to divorce him so that he would be indigent and get back on Medicaid. That was a terribly hard decision but I needed to take care of my kids. I became his legal guardian instead. A few months ago I did the math of how much I had lost during my 10 years as a caregiver. My $600,000 home, my business, no income for 10 years, bankruptcy, etc. I figured all combined I probably lost $3 million. Then I remembered that God said that what Satan stole he will replace 10 fold. So it would seem that God "owes" me $30 million dollars. Honestly, God has already given me the promise of eternal life and that, as the MasterCard commercials say, is priceless. Caregiving: What was the hardest part about managing the financial difficulties? Looking back, would you do anything differently? Carmen: The hardest part was trying to meet the needs of growing kids and a dying husband. It was all difficult. If I could do one thing differently it would be to stay in Hawaii and go on welfare and let the system take care of us. Caregiving: How would you describe your current financial situation? What are your future financial goals? What steps are you taking to meet those goals? Carmen: I eventually filed for bankruptcy two years ago. I have no savings, no retirement, no home, no credit, no nothing. Starting over after the age of 50 is hard. And I also had to re-enter the work force. But during my valley times of living in Florida I wrote and published nine books, countless articles and developed a speaking ministry. I remarried and my current husband, David's only friend at the end, was with us when David died. With his support we have moved back to Hawaii to start over. I have launched a national caregiver conference and will soon be starting a non-profit group for Christian caregivers. Caregiving: What advice and suggestions would you offer to other family caregivers struggling to make ends meet? Carmen: Don't be afraid to demand that people help. Enlarge your circle of family and friends and help them so that when you need help you have people to ask. Be shameless about asking and realize that you are doing it for the benefit of your loved ones. Also, remember that nothing lasts forever and that God really does love you even when it feels like no one else does. Truly my faith gave me the courage to continue and the fact that my children needed a mother who could hold it together. Had I not had my sons or my faith I think I could easily have committed suicide. About Carmen: Carmen is the founder and director of SomeOne Cares Christian Caregiver Conference and the author of nine books including The Twenty-Third Psalm for Caregivers, The Twenty-Third Psalm for Those Who Grieve, Faces of Huntington's, and Portraits of Huntington's. Her writings have been featured in Guideposts, Focus on the Family, Decision Magazine, the Orlando Sentinel, and numerous national and local publications. Her personal experience stories have appeared in dozens of compilation book series. A storyteller with a dramatic testimony, she is a popular presenter at women's retreats, church groups, conventions and conferences. For information, visit Carmen's website at http://www.someonecaresonline.com. Index of Articles Caring for Two Most Important Women In His Life Surviving to Find a New Life The Choices Sometimes Mean a Financial Hardship How I Survived My Dark Days Resources to Help Your Care Recipient Resources to Help You Caregiving Forum: Speak Out About Our Stories and Your Financial Worries Tell a friend about this article:

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