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Take it from our family, long-term care takes a devastating toll on finances and emotional health

Take it from our family, long-term care takes a devastating toll on finances and emotional health

Picture of Andrew Lam
Photo courtesy Andrew Lam
The author's mother, surrounded by family members. (Photo courtesy Andrew Lam)

The cost of aging in America is exorbitant as my siblings and I are finding out firsthand through our struggles over the past three years to take care of our aged parents. 

My mother, suffering from Alzheimer’s, spends her remaining days mostly in a hospital bed in hospice care, but mercifully next to my father. Both live in an apartment in a high-end assisted living compound in Fremont, California.

It hadn’t been easy to get them to this apartment, to say the least. After an epic struggle to get their coverage under long-term care insurance activated (my father had the wherewithal to buy such coverage for himself and my mother while working for the Port of Oakland many years ago) our family still faces a gap in the monthly budget.

The cost of hospitalization and emergency visits alone for both are in the tens of thousands for each of them, just in the last three months. And the cost of assisted living for both is around $14,000 a month, a figure that only increases as more services are required.

My parents’ story is part of a growing crisis. According to a 2016 study from the Department of Health and Human Services, 52 percent of Americans turning 65 today will require long-term care services during their lifetimes. About 12 percent will need between two and five years of long-term care, and nearly 14 percent will require five or more years — that’s one out of every seven adults. Such extended care can quickly dwindle savings and lead to bankruptcy, while placing tremendous pressure on family members forced to double as caregivers and health advocates. 

As it is both my parents can barely pay for these stratospheric healthcare bills and assisted living even with Medicare and my father’s long-term care insurance, which only pays half of their monthly bill. And what is not mentioned in the formula when costs are calculated is this crucial factor: family ties and support.

Indeed, hidden behind my parents’ relatively good fortune is an asset sociologists call human capital — something that they couldn’t possibly do without. In my parents’ case it’s consisted of their three adult children working together. Without us — and especially without my devoted sister, who as my parents’ legal guardian works tirelessly to pressure their insurer for payment and fights for every detail of their health care on the daily basis — I can confidently say that both would have been dead by now. 

My sister makes sure doctors and nurses pay attention to their eating habits, pay attention blood pressure changes, that my parents get their medical checkups on time, and she demands blood tests, X-rays, and hospice care for my mother — services that are available but only if requested. 

And still, it remains a constant struggle. If long-term care insurance has saved my parents from complete destitution in old age, it still falls short of the overall cost to keep them at the assisted living facility. All their monthly income — retirement, investment interests, social securities, you name it — now goes to pay the remainder left over after insurance, which covers less than two-thirds of their bills. The costs keep rising, chipping away at what remains of my parents’ personal savings. 

We three adult children visit as often as we can to keep my parents’ company. And it helps that, being close to the second largest Vietnamese American community in Santa Clara, my parents have many guests who visit them on a regular basis.  

It makes me shudder to think what it would have been like had my parents struggled alone, without financial backing and a support system? As is the case for many others, it surely would have shaved years off their lives. 

All things considered, my parents are faring much better than others in their age group within their community. None of my father’s friends, for instance, bought long-term care insurance. Many now live in crowded convalescent homes, three people to a room, and with little support system, while others put tremendous pressure on their adult children who take care of them at home.  

A friend I know gave up his job working at a tech company to take care of his mother full time. Another friend gave up his job as a journalist to take his mother home to Vietnam so that she would have round the clock care and in her language. She too suffered from Alzheimer’s, and he did not want to put her in a home full of strangers. 

The examples are endless.  

And the costs are staggering. According to Paying for Senior Care, the average cost for assisted living in the San Jose area in California is $4,825 a month, a figure that rises to $8,850 for nursing care. And according to the Genworth Financial, which tracks the costs of long-term care, the bill for a private room in a nursing home is around $91,250 a year in 2015.

All these expenses are before human capital is factored in. My sister, for instance, who lives in a different city an hour drive away, easily spends 18 hours a week caring for my parents. The stress is tremendous. According to a study by Indiana University Center for Aging Research in Indianapolis, caregivers often experience stress while helping their loved ones. Decision-makers had fairly high levels of anxiety and depression while their relative was hospitalized. About half had moderate to severe depression, and 14 percent had symptoms of PTSD.

This all seems like a nightmare for any baby boomer facing retirement with the hope of leaving something behind for their children, besides stress and PTSD. For immigrants like my parents, who toiled for over three decades in America before retiring and who are lucky enough to have children advocating for their well being, the American Dream still fades further away the moment each health care bill arrives in the mail.

Andrew Lam is the author of two books of personal essays: “Perfume Dreams: Reflections on the Vietnamese Diaspora,” and “East Eats West: Writing in Two Hemispheres,” and a book of short stories, “Birds of Paradise Lost.”

Comments

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Congratulations on a powerful and compelling post that sensitively captures the challenges with Long-Term Care. I really appreciate your willingness to share your personal challenges and shed light on this catastrophe.

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I read this in tears as I sit beside my 88 year old mother in the cardiac unit. My father died last year after three years in nursing care that devestated their savings and my mothers health. They were two people who never had a chance to go to college but often worked two jobs so we could. They were very proud people Our family especially my brother has been able to be there through the quagmire of hospitalizations and endless insurance fights and vigilance over care. But the toll is enormous and heartbreaking - what do people do who have no family to help

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Does anyone know if there is an insurance policy that children can buy to take care of their parents in this situation?

Thanks,

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You could buy a longterm care insurance policy with you paying the bills, and your parents named as the beneficiaries. You'd need their cooperation. However, the premiums may be high, many companies have gotten out of this part of the insurance business, and other companies have failed due to higher than expected payouts.

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At this fragile stage of life, the addition of a physician (geriatrician) house call service can be invaluable in reducing unnecessary, stressful, and extremely expensive emergency room visits. So can bringing in palliative care -- a humane, less restrictive medical approach for people approaching the end of life who do not yet qualify for hospice. Sometimes adult children think the loving thing is to advocate for more medical treatment-- more tests, more drugs, more interventions. But sometimes what the frail elderly need is more "care" and less "cure." They feel better and are actually healthier. A hard road to travel, Andrew Lam, I've been there and I feel for you. Katy Butler, author, "Knocking on Heaven's Door."

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My father also had the wherewithal to get long-term health care coverage many, many years ago when it was affordable. He never got to use it as he died before he qualified. However, my mother has been living for over three years in assisted living, thanks to this insurance. I do not know how anyone affords the cost without it. However, I am scared about my husband and myself as we enter our mid-sixties. Every option I have looked at is so totally expensive, much of our income would go toward insurance without much left to do anything else. And like all insurance, if you never use it, you lose it. You do not get anything back. Plus, the policies are not what they used to be. Three years, five years max it all they will pay out if those policies are tapped. The insurance companies have found out they are losing money on these policies sold in the 1970's and 80's. It is a tragedy that is only going to get worse as the Baby Boom generation ages. I will go to the old argument that other countries like Denmark, France and Norway have figured out how to take care of the elderly. I can only hope the United States will do the same in the next decade.

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Thanks for the article. I too had to jump through a myriad of obstacles to get the insurance company to deliver on my mother's long term health care policy. It came through at last and has worked to defray costs. She could have never done it herself at 90. I wonder how many people never get to claim their benefits. I suppose that's why "they" make it such a challenge. So sad.

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Absolutely insightful, Andrew! Your account of how you dealt with long term care is very inspiring and can provide help for adult children and families that are going through the same thing. Also, it shares a valuable lesson on how families can prepare for the devastating cost of long term care and can get through this emotional turmoil as a family. Thank you for sharing this post! We’ve also included this in our monthly digest to share with our readers. You can find it here: http://www.altcp.org/aging-long-term-care/.

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