When people are confronted with the challenges of caring for an elderly loved one, the single most common (and usually the first) question people ask is “what does eldercare cost?”

Great question.  Unfortunately for some folks, they don’t have access to the best sources of information and either spend more than they should or forego needed services because they think they can’t afford them.

My story is the perfect example of this.  When I became the caregiver to my grandmother I didn’t know anything about eldercare.  Like most people, I had a loved one that needed help and I started doing what needed to be done.  There wasn’t any rhyme, reason or planning involved.  I did the things that were necessary in the ways that made the most sense in the moment.  Also, like most caregivers, I was too busy with other things to really sit down, understand the industry and create a strategic action plan.

Without a plan, you do what you do and deal with problems if and when they happen.  Most people live their lives this way but this is absolutely the wrong way to approach caring for an aging loved one.  Remember the old saying: “what you don’t know won’t hurt you.” In eldercare, what you don’t know not only will hurt you, but can financially devastate you.

At first, my grandmother needed minimal assistance.  I did her grocery shopping, helped around the house, accompanied her to doctor’s visits etc.  As time progressed she needed someone who could be more available than my work schedule allowed so I hired a caregiver who could be there several hours a week.   I paid for the services out of my own pocket.

Several months after hiring the home care aid my grandmother was hospitalized for some minor issue.  While there, a social worker suggested I enroll her in the Medicaid program because Medicaid would pay for the home care service.  I figured all the years of taxes my grandmother paid would finally come back and provide a benefit to her when she needed it most.  Wonderful.  She would get the care that she needed and I could save my money.  Win-Win.

My excitement lasted about five minutes.  The social worker and I started filling out the forms and near the top was a question relating to my grandmother’s assets.  At that time, you could not have more than about $1500 in cash (recently raised to $2000).  Also, there was a five year “look back” period so if you moved money, your bank accounts could be audited for the previous five years.  In short, since my grandmother had more than $1500, Medicaid was not an option — or so I was told.  I was advised to spend down her savings and when it was less than $1500 come back and apply at that time.

This is the same advice that is literally given to thousands of people every day all over the country.  Thank God I didn’t listen to it.  When the lady gave me the threshold as $1500 I thought she misspoke.  When she repeated it, I thought she must be new to the job.  So, I found another hospital social worker and asked her.  She confirmed the number.   By this point, I was confident the hospital needed to better train their staff and I decided to speak with people elsewhere.  I was then referred to local “eldercare” attorneys.   They told me the same things.  During this period I spoke with no fewer than five social workers and four attorneys.  They all said the same things.  I refused to accept that threshold number was accurate or alternatively that there wasn’t some exception.

Finally, as a last desperate act, I decided to “upscale” my search for information.  I found one of the most expensive eldercare attorneys in New York City.  The consultation cost more than my living room set.  I explained the situation about the assets and what I wanted.  He said: “no problem.”  This was just what I wanted to hear.  But ever the skeptic, I asked him why he gave a different answer than the other people who were all 100% consistent.  He said because they were doing the equivalent of “going to the IRS and asking for tax planning advice.”  Essentially, they were quoting the rules but did not have the next level of information about how to LEGALLY navigate the rules and still get the services.

I now own a home care agency and I once ran the numbers, my grandmother received over $400,000 of market rate services.   Had I listened to the info from the social workers et al. I would have taken technically accurate advice that was none-the-less “bad advice.”  The tragedy of this all is that no one gave me bad information.

The social workers at the hospital gave me technically correct answers and I can’t fault them for what they said.  Unfortunately, over the last several years, I have seen far too many instances of people who received similar advice, relied upon it and squandered their loved one’s assets “spending down” to get under the threshold.

In one truly sad case, I sat next to a gentleman on a flight back from Europe.  Once he learned what I did for a living he told me the whole story of what he went through with his mother.  He and I were given essentially the same information the only difference was that he accepted it.  He told me that he and his sibling liquidated most of the assets his parents spent a lifetime building.   By the time we landed I was absolutely certain that his mother died prematurely from a broken heart.

So there are two lessons here: First, When it comes to eldercare, the information you don’t have can very seriously hurt you in terms of quality of caregiving services and financially; and  secondly always try to find the very best people accessible to you. Don’t be afraid to ask them questions-even if you think you already know the answers.  This is especially true if someone has already told you something can’t be done.

Derrick Y. McDaniel is the author of Eldercare: The Esssential Guide to Caring for Your Loved One and Yourself and founder of Caring Hearts Homecare of New Jersey. Follow him on Twitter @MrElderCare101.