• A Long Term Care story

    I usually do a lot of blogging for the coming week over the weekend, but I spent most of Saturday and Sunday painting my house in preparation to put it up for sale this week. This sudden decision was precipitated by my wife’s conclusion that her mother can no longer live alone, and that we need to purchase a house into which she can move with us (I agree with the need for this move as does my mother in law).

    The story really begins around 11.5 years ago when my wife’s father died. Soon thereafter, my wife’s grandmother moved in with my mother-in-law, and they lived together for 7-8 years. They moved to Durham where we live after a year or so to be closer to us so that we could assist them if need be. Eventually, my mother in law could no longer care for her mother as the burden of caregiving became quite profound, especially shown through severe depression; my wife’s grandmother moved in with another child. Soon thereafter, my mother in law moved into a one story town home near our house, where she has lived alone for about 4 years.

    On some day’s my mother in law is quite active and mobile, but on other she days has trouble getting out of bed. There are more of the latter days over time, and a couple of weeks ago during a difficult period, my wife said she wasn’t sure she could keep going to her moms so many days after she got off work to help her mother amidst the chaotic schedules of two teenagers and an 11 year old to boot (I, of course, am low maintenance). My mother in law’s living situation seems unsustainable, so we are trying to make a change without some sort of precipitating catastrophic event. A few thoughts:

    • It is common for people to call for ‘skin in the game’ in the blogosphere; persons making such calls should love long term care. The majority of LTC is provided by family members to one another, first spouses and then adult children, who are typically caring for their mother who has outlived her husband. AARP estimates the annual cost of informal caregiving was around $350 Billion in 2006 ($450 Billion in 2010), or about 3 times as much as the total nursing home bill in the U.S.
    • Costs of informal LTC include reduced work hours, increased depression and health effects on caregivers, and explicit financial costs.
    • Care burdens do become too much for families, and formal LTC is expensive, with the Medicaid program as the payer of last resort paying for around 43% of all NH care.
    • There is very little private LTC insurance for a variety of reasons.
    • Benefits in the range of $50-$75/day like  what CLASS would have provided could enable family caregiving situations to be continued longer, possibly keeping people out of NHs, or could enable care plans that result in less harm to caregivers.

    We need to develop a better long term care system that encourages planning ahead, and that provides families with the flexibility to tailor care situations to the needs of individuals. It will take public policy intervention to do this. I think the main barrier to such action is the lack of understanding of the role and burden (costs) that informal care plays in our LTC system.

    Update: Nancy Folbre this morning in Economix with a detailed post on caregiving.

    • Thanks for sharing this story with us. Your experience illustrates the problems with LTC in America. Your willingness to accept your mother-in-law into your home is very admirable.

      The solution is going to have to be comprehensive and multi-faceted, support for individuals living alone, group housing, and institutions. It is both an economic and a social problem. We cannot and should not put everyone in a nursing home. And government will not be the entire solution, help from charities and public service groups will have to be there also.

      The failure of ACA in this area is going to plague us all for years to come.

    • As a veteran of the home care/hospice “industry” — and as the oldest son of a 92-year-old mother who lives nearby — I have first-hand experience with long-term caregiving. My mother still lives independently, with 20 hours a week of home health aide services, but it’s not clear that can continue much longer.

      Don’s thoughts on LTC are on the mark. Unlike David R, I’m less confident that charities and “public service groups” are a realistic option to government action. Many charities depend at least in part on government support (local or state if not federal), and the competition for donor support has grown increasingly fierce — with the result that some charities tailor their programs to what wealthy contributors find attractive, or (sometimes) recognition-worthy. It astonishes me that anyone familiar with the facts of aging in America could contemplate cutting Social Security or Medicare benefits when most families in LTC situations already have lots of “skin” in the game. All those additional dollars in the pockets of the top 1% don’t translate into addressing the elderly’s actual needs.

    • To Bill

      You are correct in that charities and public service groups are not a realistic option to government health, but they will be forced into supplementing government support by the fact that government support for health care for retired and aged individuals is simply not going to be sufficient.

      While the Paul Ryan plan to end Medicare and privatize it is not likely to be adopted, some form of reduced government support with shifting of much of the burden to the private sector is likely. At that point in time people who simply cannot afford care will either have support from charity and public service groups, or will literally be left on the curb.

    • Don’s comments and the responses are helpful, emotional, and it is an issue which has, may, or well effect all of us.

      A few observations:

      1. Long Term Care Insurance is expensive? Compared to what, not owning long term care insurance?

      We own home, auto, health, life, and other forms of
      insurance for an event which may or may not occur.

      2. People are in denial that something will happen to them and therefore defer until an illness, accident, fraility, or dementia occurs to them, to their family, or their friends.

      3. Not long ago, companies provided most benefits — health, retirement, vacations, disability, life insurance, and other benefits. In most situations, a proportion of the cost has to be paid by the employee for that benefit.

      When pay raises are few and rare and cost of living is rising is it thought to be expensive? Of course as a percentage of your income. Why? Most of us rarely if ever considered that benefits is a cost of doing business and part of our pay benefits.

      4. What do we do? Owning long-term care insurance to cover some of your possible care-giving costs is better then having no long-term care benefits. In other words you co-insure for a possibility which may or may not occur.

      What I forecast is fewer people may remain where they live rather then having to live with family or go to assisted or nursing home whether by choice or circumstances.

      Why? Development of affordable and effective monitoring devices is similar to a security system. It informs family and a monitoring company or a health provider know whether a person is taking medication or if something has occurred and there is no response.

      I welcome your thoughts, suggestions, and comments.