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.