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“Mom is getting older,” my brother said to me as we chatted on the phone. “We need to prepare.”

He started offering ideas.

“Should we make a fund for her care? There’s insurance, right?”

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“You mean long-term care insurance?” I responded. “That’s a joke.”

“OK. Let’s save up. You, me, my wife, and our two siblings could contribute $100 per month. That’s $6,000 a year, a realistic start.”

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But is it?

The median cost of living in a semi-private room in a nursing home for one year is $93,000. Hiring a home health aide for 40 hours a week costs $55,000. Assisted living costs $52,000.

Our mom was 70 years old. How much time would we have to save before she needed long-term care? Five years? Ten? At that point we’d only have $30,000 to $60,000 in savings.

What about our dad, who will be turning 70 in three years? What about my future spouse’s parents?

We were ahead of most families that fail to have these conversations before the need for care arises, yet we were nowhere near a solution.

To have banked enough money for our parents’ care, we should have started more than 30 years ago — but we were barely out of our mother’s womb.

Plan for long-term care, they say. But how? Even as a gerontological nurse practitioner and a researcher focused on improving delivery of this essential service for older adults, I was lost.

Nearly 70% of adults 65 years and over will need long-term care. That means assistance with activities of daily living like getting dressed, preparing and eating meals, bathing, and more. Nursing homes, adult day services, assisted living, home health aides, and informal caregivers can provide this help. Yet one-quarter of adults fail to believe they will need extended care and so don’t plan for it.

When long-term care is needed, many older adults and their families are hit with the realization that Medicare does not cover it. Anything beyond rehabilitation or 100 days of nursing home care is the older adult’s responsibility. A long-term care system exists only for the impoverished (Medicaid) and the wealthy (self-pay). There is no robust system for the middle-income people who make up half of the U.S. population, and there are threats to the sustainability of Medicaid, which currently covers 62% of all nursing home residents.

These issues are framed as a failure to plan, but there is little support for planning, and planning doesn’t solve many of the problems. Without a long-term care infrastructure, most Americans face exorbitant costs, undue burdens, and threats to their well-being in older adulthood.

Concerns about long-term care have been complicated by the Covid-19 pandemic, which has disproportionately affected older adults, especially in long-term care facilities. Families have weighed their options: Should mom be in a nursing home, with increased risks for isolation, infection with SARS-CoV-2, the virus that causes Covid-19, and death? (Long-term care facilities currently face decreased occupancy and insufficient funding.) Or should she be at home with the accompanying family, work, health, and safety challenges?

Government funding is the most obvious solution to building a long-term care system and reshaping and supporting planning for long-term care, but efforts in this area have failed. For example, Maine proposed a universal home care initiative in 2018 to provide no-cost home care, but it was voted down due to fears that taxing those who made more than $128,000 a year (especially physicians) would cause people to relocate to other states. In 2011, the federal Community Living Assistance Services and Supports Act proposed to provide up to $50 a day in cash benefits to help families pay for in-home assistance or nursing home care, but it was plagued with unreasonable premiums and uncertain sustainability.

The first state social insurance program for long-term care was recently initiated in Washington. Beginning in 2022, all of the state’s residents will pay into a long-term care trust fund $5.80 for every $1,000 of their income. This program provides a glimpse of hope, although the first payout for an individual’s long-term care won’t occur for 10 years after paying into the trust — three years after a catastrophic disabling event — and has a lifetime cap of $36,500.

Long-term care needs to be on the new administration’s agenda. Efforts that increase access to long-term care financing, resources, services, and supports are needed at all levels: local, state, federal and for all socioeconomic groups. No family should shoulder the burden of long-term care planning alone.

My brother and I will work together to make a plan, and we are fortunate to be having these conversations earlier and with more resources than some families. But for all families, long-term care needs long-term solutions.

Jasmine Travers is a gerontological nurse practitioner and an assistant professor of nursing at New York University Rory Meyers College of Nursing.

  • Nursing homes are a rip off. You have to share a small room with no privacy and have to share a bathroom with 3 other people who leave urine and feces on the seat and floor. You have no choice of toothpaste (Avamere won’t even provide toothpaste made for dentures, regular toothpaste damages dentures), no choice of deodorant, shampoo etc. If you are a woman forget about any make up or hair color etc. The state takes all but $30 of your social security monies and gives it to the home who serves food that can be compared to concentration camp food. If your roommate is incontinent it has yeast infection you are forced to smell it because of understaffing and lack of care… neglect. God forbid you need help at night because the nurses are outside smoking at the same time leaving the floor with no nurse on duty. Or they are on their phones sharing family videos with each other, or nurse too busy with her dog rescue business to help residents and nursing aides on their cell phone with earbuds in and can’t hear residents yelling for help and nurses ignore their screams because it is not in the job description to respond. God forbid family complains about neglect etc, the facilities will attack them to in ways you cannot image. Find a way to keep your loved ones at home. Broken ribs, broken shoulders due to aides dropping residents and to cover up their incompetence they say it’s the residents fault bfir one reason another. Read the two stories in the Eugene Weekly about the neglect, falsification of records and cover ups.

  • My partner of 27 years, has now spent approximately $300,00 for 33 mths of care in a SC skilled nursing facility. She took out a LTC policy long before it was popular; unfortunately, she will soon deplete the lifetime benefit & will have to rely on her savings. She had no idea when she signed up that she would eventually be diagnosed w/Alzheimer’s. She was very wise & very lucky. But she has been unlucky in that she has NOT gotten what she has paid for! Not even close.

  • Jasmine, there are a number of solutions available. Speaking to a LTC insurance specialist using Zoom technology may have given you and your siblings ideas that were cost effective not only for your parents but also you guys. Keep in mind we are not a welfare state. Personal responsibility is key. Policies have been available for 35+ years. Planning is key and this is the biggest risk to that plan. Find a solution and work toward hoping to never need it.

    • My mom is 90 years and purchased 2 LTC policies 30 and 29 years ago. I have hired 2 law firms to get them to pay the minimum amount. One company AFTER 2 lawsuits has paid less than half the 2nd won’t even respond to me. I do have durable POA. I have to spend thousands in legal fees for a pittance from LTC. The department of health in Maryland is well aware…i have spoken with them myself. They don ‘t care and refuse to get involved. Meanwhile the board of directors and officers are taking home $200,000 a year. I have it all documented. No one will take care of your elderly but you.

  • Thank you, Jasmine, for your comments.

    1. There is no requirement for people to own life insurance, have a retirement plan, or own disability plans. Companies may offer it, but companies’ benefits incrementally have been transferred to individuals and families to make those decisions.

    2. There is no requirement for people to own an LTC plan or have a long-term care plan conversation. Most people decide to ignore this planning until a crisis occurs, and then it requires choices: who will be the caregiver, where will those who need caregiving be situated, and who and how will families pay for care?

    3. Raymond’s Perspective:

    We believe we love our family.
    We believe we care about the lives of our spouse, children, and friends.
    We do not want to overwhelm our spouse or partner with every aspect of care that we may need while living at home.
    We believe we do not want to divert our children and friends’ lives to care for us.
    We believe we do not want those who need caregiving to feel alone and isolated.
    We believe it will be difficult for them to be part or full-time caregivers.
    We believe that we have commitments to our family and our legacy and do not want to disrupt our financial plans now or in the future.
    We believe we promised to take care of our families and provide for them in health or frailty.

    4.There is no “safe return on investment” available to you as an individual or with a spouse/partner to accomplish what an insurance company and the tax code provides a Long-Term Care Benefit.

    There is a simple way to verify my point. Please call your wealth advisor and ask them to do the following:

    WAIVE their management fees on any of the money they advised you to keep in place for caregiving. (They won’t)
    GUARANTEE a return on investments to provide Care Giving $$$$$ as soon as next month with ZERO risks to your money. (They can’t)
    MAKE THOSE DOLLARS TAX-FREE when used to pay for LTC expenses. (Not Possible)
    And there is an additional comment: My mother has an income of over $1 Million and capital in the $Millions. She owns a long-term care plan. I asked her why she owns a plan with her wealth and income? She said, “No one has that much money to pay for lifestyle expenses and pay for part or full-time caregiving.” She is 100 and has used her LTC plan for over 10 years.

    There is no more time for cliches, hoping that if we won’t take responsibility that social services will help people. I am fine with raising taxes to fund long-term care services. I am fine that insurance companies no longer offer LTC plans.

    It is about choice. We can’t agree to find a solution for universal health care or guaranteed wages, infrastructure, or many social service needs.

    Families have many caregiving responsibilities with children and families who have special needs.

    It is fine to make the choice not to have a care plan but there is no requirement that social services are obligated to provide services. Nor will they allow families or individuals to make personal choices if it is a government program.

  • Long Term Care insurance is touted but it is not worth it. Most individuals require LTC 18 to 36 months not decades. Technology makes at home care more of an option. Drastic rethinking required.

  • Also a gerontological nurse practitioner and PhD-prepared researcher here.

    Unsure of the reason you have dismissed, out of hand, long-term care insurance as “a joke”.

    For those who have managed to budget quarterly payments, and eventually meet ADL assistance criteria, with available Social Security and/or other retirement income, LTC insurance can mean the difference between comfortably residing in assisted living and entering the spend-down phase to Medicaid-supported care in a nursing home.

    Irresponsible of you to use a bully pulpit to dismiss senior financial options, without explanation, for later-life security.

    You are very young; your parents are relatively young. Good for you to be in the planning phase. Less good is using your “industry expert” status to anecdotally sway others’ thinking while attempting to guide and inform.

    • I agree. My 77nyear old mother contracted Covid-19 after being careless. Well, she will never be able to live independently again as Covid-19 has ravaged her body. 9 years ago, she took out a LTC policy. There are many variables to choose when taking out a policy. Her policy covers $178/day for away from home for a period of 3 years. Also, she has her house that is paid cor and some other funds in addition to a monthly income of about $3,000. She will be much better off with the policy than without even for 3 years while we liquidate her assets and invest conservatively formher use later when she will need cash.

    • I am over 60 years old. I worked in a nursing home as I went through college. I have had to threaten lawsuits and spend thousands on attorneys and still SHIP and TransAmerica refuse to honor their contracts that my school teacher mother bought and STILL pays premiums to since 1997.
      I don’t know what you mean by “industry expert”. I feel that my family are “industry victims”. I have a huge crate of documents with notes. If you want to take a stab at getting these theives to help with mom’s LTC please do write back. But don’t insult me. I am very tired of fighting for basic contractual specific performance. I think people can’t understand until it happens to them.

  • I moved my parents into a Assisted living facility 6 months ago. They pay 1300 a month. What bothers me is that the government pushes you aside once you hit a certian age. Not everyone in America are rich. Younger generation will get older too and someday need the help. Due to COVID 19, this facility my parents are in has had a hard time keeping people employed and struggle with 1 to 2 aides a shift with 50 to 60 people. I have been there for my parents daily, get little to no time off. It’s hard, stressful, heartbreaking and at times frustrating. I think the government should look at this issue more seriously without the attitude of just giving up on those past a certian age.

  • Our 93 year old mother didn’t plan for this. She is unable to walk or stand,has dementia, and is living in memory care unit. All needs are being met, but it’s 7,000$ a month private pay. We will sell her house and all of her stocks if she allows it. As a retired teacher I don’t have the money to help. Something needs to be done.

  • I am living with this problem now. My mother has end stage kidney disease and alzheimer 3rd stage also. The state of Florida wants me to put my mother into a nursing home but I am comfortable with that decision.

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