Wednesday, April 02, 2008

PBS: Caring for your Parents: film and panel discussion

On April 2, 2008 PBS stations aired a two-hour special “Caring for your Parents.” The link is here.

The first ninety minutes consisted of a documentary film directed by Michael Kirk. Five families in Rhode Island (and Massachusetts) deal with the emotional, logistical and financial problems in dealing with severely ill elderly parents. In some cases, families struggle to keep their parents out of nursing homes, but are unable to do so. In one case, a two hour visit to home (with pets) is a real “treat” for the mother. Caregivers juggle work and caregiving, and seem to work at home as Internet consultants, often with odd, broken hours.

There is a point where the film says, that the best predictor of the length of time an severely disabled parent can stay at home is having a daughter. The whole issue has a gender "unfairness" to it. Men, unless well socialized by marriage, may be less emotionally nurturing to parents, but also men often don't live as long once disabled and frail as do women, and may not expect or want to. (My own father passed away in early 1986 from advanced prostate cancer at 82, but was actually ill for only about a month.)

In one case, the caregivers are a married couple, late in middle age themselves, caring for the husband’s divorced parents. The husband’s own health is faltering, and there is a doctor’s visit on camera. At the end, he says that the experience of caring for his mother will prepare him to care for his wife.

The caregivers did not express resentment of "giving up their own lives" in the film, partly because generally the families were large and cohesive. This will surely be a problem in practice, especially with childless adults and "modern" individualistic values. On daughter in the show, however, had worked as a musician in Germany, and found, after returning home and staying for five months, that the loss of income was a serious issue. Adult children, especially singles, are likely to have moved to other cities. The effectiveness of home health and "life alert" devices can become significant in some cases (especially with parents less seriously but still significantly impaired).

After the movie there was a half-hour panel discussion led by Dr. Art Ulene, who says he had to care for his mother, and that the experience drew him closer to her, and that he did not care for his father. The panelists discussed some issues, such as resentment among siblings as to who does the most. There were issues as to when to take away the car keys, and when to seriously consider assisted living or nursing homes. The adult child and parent "reverse roles" and the panel even said that the adult child needs to allow the parent to believe that she or he is "in control" when obviously this is not "true". The emotional issues mask what otherwise would be perceived as moral or duty problems. One panelist said that caregivers should be paid (apparent to mean the non-cargiving siblings should pay the caregiving one). The discussion pointed out that many people don’t know that Medicare does not care for custodial care, and that it may not pay for some medical care at home in a custodial situation. The panel did discuss Medicaid, but did not go into much detail about the legal complications (including look back periods, and, in 28 states, filial responsibility laws or “poor laws” which are still not often enforced). In the film, the families appeared to be much more intact financially (one daughter had turned her home into a one-patient assisted living facility with 24 x 7 staff hired by her).

PBS has aired two major programs on eldercare and retirement in the past two days, and ABC aired one last night (two entries down on this blog). This program came down to earth, as to the very real problems many families face, because in practice many elderly live a long time while in very poor health, including the development of Alzheimer’s Disease or other forms of dementia (now an epidemic). This has become a serious problem in the past fifteen years because medicine is able to keep people alive a very long time without keeping them vigorous. This is occurring in a society where many families have had fewer children (although some of the families in this film had several). In past generation, there tended to be more kids, usually including one or two unmarried people (often women) expected to stay home and look after the parents, who usually did not live nearly as long once they became disabled All of this makes an interesting comparison (for me) to caregiving and “buddying” for People with AIDS in the 80s, who usually did not live long in the beginning. Once medications for HIV disease improved (by the early 90s), PWA’s often tended to return to independent living and economic productivity quickly, so the caregiving issues eventually, over the years, became much less challenging in general. In practice, eldercare issues are much more difficult to manage.

On the other hand, the ABC program “Live to be 150” presented a rosy view not only of longevity but of the physical condition of many people in their 90s and even over 100. So the prospects for major eldercare problems, in practice, varies enormously from family to family, but the demographic problems are much more severe today than they were twenty years ago. Our political candidates should start talking about this.

Also, last night, PBS had aired the first half of "The Retirement Revolution" (next entry).

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