Real people share their experiences with the crippling costs of coping with the disease. Gordon Lilly, 92, with sons Doug (left) and Tom. The cost of Gordon's Alzheimer's care is covered by long-term-care insurance. Paul Lilly By Michael DeSenne, Executive Editor December 1, 2012 The cost of Alzheimer's is staggering. An estimated $200 billion was spent in 2012 alone to treat the 5.4 million Americans suffering from the disease. By 2050, when as many as 16 million people in the U.S. will be afflicted, the price tag is projected to jump to $1.1 trillion in today's dollars, according to the Alzheimer's Association.SEE ALSO: Retiree Tax Map In addition to the direct costs of care, friends and family members provide another $210 billion worth of unpaid care -- often at the expense of careers and savings. Here are the stories, in their own words, of how these unpaid caregivers and Alzheimer's sufferers manage to make ends meet under immensely challenging circumstances. Special thanks to American Public Media's Public Insight Network for support in the reporting for this story. Advertisement Long-Term-Care Insurance "We moved my father [Gordon Lilly] to a nursing facility in October 2011. Other than minor miscellaneous expenses, two long-term-care policies purchased by my dad in the 1980s cover the monthly cost of the facility. Dad may have Alzheimer's, but physically he is very fit, and he could be in long-term care for quite a while. The $3,645 monthly cost is entirely covered by a combination of the two policies. Know ahead of time exactly what is covered and what is not in a long-term-care policy. Also, make sure you know the insurance company's monthly payment caps. They are probably well below the actual monthly cost of the nursing home. One or more policies may cover assisted living, nursing-facility care, home health care or adult day care. Stop paying premiums for care you don't see in the future, such as adult day care or in-home care once you've progressed to the stage of nursing facility care." -- Paul Lilly, Superior, Colo. "I think it is great that people talk about retirement planning for this type of disease. For most people, this is something to prepare for in their later, post-retirement years. I worry that I will have early onset Alzheimer's, like my mom, so in my head I think of planning for retirement at age 50, not at 65 or 67 like my peers. I plan to purchase long-term-care insurance when I am 40, when my son graduates from high school. I can't afford to save for my son's college and my own retirement and pay the premiums for long-term-care insurance right now. I was quoted a rate of $150 to $200 a month for LTC insurance, which is what I put away for my son's college fund each month. I also increased my retirement savings to 15% of my income, and I have a 15-year fixed-rate mortgage. I should be completely out of debt before I turn 50. As a single parent, this has really crimped my available cash. I drive an 18-year-old vehicle and take the bus, and I pinch pennies through every means possible." -- Naomi Lund, Robbinsdale, Minn. More from Kiplinger's: Navigate a Course for Long-Term Care Advertisement Affording a Nursing Home "In my father's case, my brother and I hired an elder law attorney to place my father's limited assets in an annuity payable to my mom. This in turn allowed us to place him in a nursing home under Medicaid. Early on, the hardest thing is taking financial and driving duties away from the person. Later, it's having to make major medical decisions for them, because they can't." -- Katherine Vaccaro, Orlando, Fla. "My husband died in 2008. He was unable to work for the four years he was ill, and I had to cut back my hours. My husband had long-term-care insurance, which I used for one year to pay for certified nursing assistants to come in during the day while I was at work. He was in a nursing home for the last six weeks of his life, but the long-term-care coverage didn't pay for everything. I was short $1,500 a month. I know women who were forced into divorcing their husbands because they knew they couldn't afford nursing-home care, and that's a very sad thing. I would never have done that, not only because I wouldn't have felt right about it, but also because I would have had to explain it to my son, who was only 15 when my husband died." -- Diane Scholl, Denver More from Kiplinger's: How to Choose a Long-Term-Care Facility for a Loved One Advertisement The Power of a Power of Attorney "After the diagnosis of dementia, it is very difficult to predict how quickly the disease will progress. Financial planning should begin as soon as possible after the diagnosis. This includes granting the family member or friend who will eventually be responsible for financial matters and medical decisions durable power of attorney for both financial and medical affairs. Such granting of legal control can be a touchy subject, especially between spouses. It may be better for each spouse to grant the other such authority, so that the spouse with the diagnosis is not singled out." -- Richard Rubin, St. Louis "Make sure that financial power-of-attorney documents are completed well in advance. This also applies to medical directives and a medical power of attorney. I would say an adult child is the best choice for both as a parent ages. One thing I wish I had done earlier, given that I was my dad's POA, was have my name added to all his financial accounts (with signature authority) while he was still lucid and able to do it with me in person. It would have saved a lot of time and aggravation." -- Paul Lilly, Superior, Colo. More from Kiplinger's: 6 Essential Documents for Alzheimer's Advertisement Impact of Caregiving on Careers "My mother died in 2008. My husband and I are both self-employed, so it was easy for us to become the caregivers for my mother, but it took a big toll on our finances. Because we were caring for Mom at home, we each spent a great deal of time with her, or keeping an eye (or an ear) on her. This meant, among other things, sleeping with a baby monitor tuned to hear her stirring. We took turns being the one 'on call' overnight to help her when she wanted to get up, but neither of us slept very well, even on the nights we weren't on call. All these things combined caused us both to be much less productive at our jobs, and therefore we had much less that we could bill to clients. We sold our home in order to move in with Mom, and the income from that helped some, but only for a while. We had few investments and little savings. At one point, my siblings agreed to have Mom 'pay' us (my husband, specifically) a small stipend -- small enough to keep it under the tax requirements for a gift. By living with Mom we saved a bit (utility bills, mainly) but not nearly enough to counter what we were unable to earn." -- Martha John, Columbia, Mo. “My husband's mother had Alzheimer's, so I knew what to look for. When he started forgetting how to get home from places he had driven to many times, I knew. When my husband retired I was relocated for my job, and it meant a very nice salary. But when he started locking himself out of our home and forgetting where he put things, we moved back to Minnesota. I took a 50% pay cut to stay in Minnesota, work fewer hours, and not travel, which seemed to work for a while. But then he could no longer balance his checkbook, and he had always bragged about balancing it right to the penny. He would sit for hours trying to balance it. I went to part-time work, but my pay was not worth it. I had to quit my job and take early Railroad Retirement pay, which was one-quarter of my usual salary. We were draining my 401(k) money monthly just to make ends meet. We had no insurance to cover any of the cost of adult day care or assisted living. I also had to purchase medical insurance for myself, as I was not old enough for Medicare.” -- Rosina Hauge, Little Falls, Minn. More from Kiplinger's: Tax Breaks for Alzheimer’s Care Nest Eggs at Risk "I was able to pay for respite care for my husband. We had purchased long-term-care insurance for him, but there was a three-month waiting period after he entered a facility. He passed away just short of the three months, so I paid out-of-pocket for that period of care. He was young and healthy, and his death was quite unexpected. Without the insurance it could have been massively expensive had he remained in a facility for an extended period. I deducted medical expenses; Medicare helped with the drugs until we hit the doughnut hole. My husband and I had built a good retirement nest egg. It could have disintegrated had we not taken steps before his diagnosis.” -- Jane Templeton, Evergreen, Colo. "My mother, who is now 56 years old, has had dementia/early stage Alzheimer's for more than seven years. My dad, who is also 56, has really struggled with every stage of this disease. Alzheimer's is a soul-sucking, painful journey, after which the caretakers are depleted of their money, time and energy. My dad will be lucky to have any of his or my mom's retirement money left over by the time she passes away. This is a depressing thought, because unlike most of their generation they have diligently saved for retirement. Now it might all be gone before my dad can even retire." -- Naomi Lund, Robbinsdale, Minn. More from Kiplinger's: Prepare for the Financial Impact of Alzheimer’s Making Ends Meet "I retired three years early from a $36,000-a-year management position in health care. Our retirement account is adequate. We take a monthly $500 distribution to augment my Social Security benefits. We have long-term-care insurance coverage for at least five years, if placement becomes necessary. We use $800 a month of my wife's Social Security benefit to provide for an in-home health companion for her for ten hours per week at $20 per hour. This allows respite for me, and can continue as needed. Buy long-term-care insurance as early as possible, because the odds of needing it get worse every year. Check with the state social services to learn about Medicaid financial requirements so that assets owned by the patient are held to a minimum." -- Lewis Wilson, Wichita, Kan. "My mother died of Alzheimer's in August 2011. We had arranged for in-home care for five days per week. Otherwise, my father was the primary caregiver, with my three siblings and me helping as we could. I generally lived with them on weekends. Medical care was covered by reasonably comprehensive insurance while home health care was paid out of pocket. The nature of Alzheimer's disease seems to be that familiarity is highly valued, and this was a factor in decisions regarding where my mother lived. We made many accommodations to improve safety and function to allow her to live at home until the very end." -- Barry Romich, Wooster, Ohio "My mom passed away from Alzheimer's. My parents moved in with me as my mom deteriorated and my father was no longer able to care for her on his own. With my husband's support, I quit my job and became a full-time caregiver. Both my parents worked hard all their lives, raising seven children, but in the end the little bit they had saved in an IRA and their Social Security was all they had. We took on the financial burden of my parents. My brother lives in the area and he and his family helped as well. My life became a series of doctor's appointments, for both Mom and Dad, and runs to the pharmacy. Medicare helped. Medicaid helped Mom attend an adult day center one morning a week, which was my respite time. At the end of her life, a Medicaid bed opened up in the Alzheimer's unit at a local nursing home, and for my own emotional and physical health we decided to move Mom there. All they got was her Social Security check each month. And my dad, while he did not suffer from Alzheimer's, had heart disease and a stroke, so I was his caregiver as well. I count this time of my life as one where I came to understand what it means to plan financially for my future." -- P. Bryn Benson, Highland Park, Ill. More from Kiplinger's: Does Insurance Cover Alzheimer’s Care?