by SUSAN W. AUMILLER, CLTC, Dublin, Ohio
Recently I was sitting next to my husband on a flight to Nevada. I had buckled my seat belt and was casually listening to the flight attendants delivering their safety message. When I heard them say that I should put on my oxygen mask first, before helping the person next to me, I gripped my husband’s hand tightly. Nearly one year ago, both my husband and my son were diagnosed with FSHD. Our lives haven’t been the same since then.
After our 36-year-old son Bill was diagnosed, I sobbed for months with breakdowns that came out of nowhere. Bill is a vibrant outdoor adventurer who lives in Colorado with his wife Jamie, and our two grandchildren. I was heartbroken that FSHD might take away the activities he loved so much and that some day he might not be able to care for his family the way he wanted to.
Six weeks after Bill was diagnosed, my husband, Bob, was also diagnosed with FSHD. His test showed dystrophy (scar tissue) in every muscle of his body from his face down to his ankles and feet. We had never even heard of FSHD, and now it cast a deep shadow over our family.
Looking back, I am so grateful that Bob and I had purchased long-term care (LTC) insurance five years ago at ages 58 and 56. As a long-term care specialist, I was insistent because longevity runs deep in our family.
I never expected that my husband might need help from our LTC insurance policy before me. As his muscular disability progresses, I will not be able to lift or transfer him without hurting myself.
When we face a health crisis, we need to put into play realistic solutions not only for our loved one(s) who face a disabling condition, but also for ourselves. After Bob was diagnosed, I insisted on moving out of our home of 30-plus years and into a condo. I wanted to get that done while he could still help me with packing, lifting, and moving. He now has everything he needs on one floor, and there is less upkeep for us to manage.
Our son, Bill, is a certified financial planner. He had intended to purchase LTC for himself and Jamie when they turned 40. After the initial shock of his diagnosis, Bill called me to ask if there was any possible way for him to purchase that policy now. When I told him that he no longer qualified, he was devastated.
What made sense instead was to purchase a LTC policy for his wife. Bill knows that there is a chance he won’t be able to help her as they age together. If Jamie needs care, an LTC policy would help pay for a home care provider to help with the heavy lifting. It would also pay for home modifications. The policy would pay for all levels of care, not only home care: assisted living, daycare, and nursing home care.
Buying a long-term care policy is like putting your oxygen mask on first―you’re better able to take care of others when you take care of yourself first. For women, this is hard to do because we want to take care of the world. As for men, they typically don’t think they will need help.
But we can’t ignore or escape life’s unexpected turns or the natural processes of aging—it happens whether we’re ready or not. My advice is to pull down your oxygen mask first. Create a plan for the time when you or your loved one may need help with day-to-day activities.
Knowing you can pull out that policy and hire someone to handle the heavy lifting without disrupting the lives of your spouse, family, and friends will give you peace of mind. There is dignity as well, to have the ability to continue to live where you desire, with long-term care decisions made and costs covered.
Making a plan for long-term care and discussing it with your family is very important, especially if you expect your children to take care of you. After all, when was the last time they were in total agreement about anything?! If you are interested in learning more about long-term care and how to plan for it, I encourage you to contact a financial advisor.
Editor’s note: Susan W. Aumiller, CLTC, is a financial professional and educator. She is director of the Columbus, Ohio, chapter of the FSH Society.
Judith Durbin says
What a wonderful article!
Please tell me where and how you were able to get such a thorough diagnoses. I live in the midwest and go to Iowa City. IA to the University of Iowa about my FSHMD. They certainly haven’t told me that I have scar tissue in every part of my body. What tests were performed, if I may ask?
It seems to me one must live near a large metropolitan area to get such good treatment.
Thanks for answering my rather personal questions and good luck in the future!