End-of-Life and Pacemakers that Keep on Going

If you are not a regular reader of the New York Times, use this link to go to What Broke My Father’s Heart, by Katie Butler, published in the June 14, 2010, NY Times Magazine. Butler writes about the enormous difficulties her family encountered after a pacemaker was inserted into her father’s chest despite that he had advanced dementia. She describes the enormous stress and health consequences her mother experienced, as well as the thoughts and actions of the adult children in her family.

All of us should be aware, alert, and protective of our parents. When end-of-of-life decisions are unwittingly changed because of the addition of  life-prolonging medical devices, tragic problems can occur — even if all of a parent’s papers and legal documents are in place.

A May 14, 2010, MedlinePlus/Health Day article, As End of Life Nears, What to Do With Implanted Defibrillators?, provides additional background and discussion.

Late-Stage Dementia, Hospitals, and Feeding Tubes

A professor at the Brown University Medical School was the lead author on a recent study published in the Journal of the American Medical Association (JAMA), Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Dementia (abstract). Joan M. Teno, MD, used Medicare data from 2000 to 2007 to evaluate how often feeding tubes were inserted into late-stage dementia patients, age 66 or older, who were hospitalized by the nursing home or skilled nursing communities where they lived. The records used in the research came from data that included 163,000 patients who were hospitalized 281,000 times at 2,800 hospitals. The data for the study was taken from Medicare claims files.

The research concluded, “Among nursing  home residents with advanced cognitive impairment admitted to acute care hospitals, for-profit ownership, larger hospital size, and greater ICU use was associated with increased rates of feeding tube insertion…” The results, by hospital, are posted at this web site.   Continue reading

After a Parent’s Death: Paying Bills

Four months after Mother died her bills have continued to arrive. While we were prepared to pay her final utility bills as well as the end-of-life and memorial service costs, it felt a bit strange to receive so many others, and doubly so more than four months after her death. Yet all of the bills were legitimate.

Here’s what we received:

Continue reading

Dementia: Choosing Her Own End-of-Life Strategy

Take a few minutes to read a post at the Intrepid Paper Girl blog about the life and dementia-related death of journalist Lynn Forbish. Forbish’s last years of life demonstrate how people with dementia continue to think, feel emotions, and make decisions. Her end-of-life experience illustrates the cognitive model that researcher Justin Feinstein and University of Iowa colleagues presented in the journal article Sustained Experience of Emotion After Loss of Memory in Patients with Amnesia (abstract). A related post here on As Our Parents Age, Dementia: Emotions May Continue, highlighted the small study published in the Proceedings of the National Academy of Sciences (PNAS).

The author of Intrepid Paper Girl is a Nieman fellow at Harvard. If you enjoy reading newspapers, like journalism in general, or just want to live vicariously the dream of many an aging child  — winning a funded year to return to a big university campus as an adult, when you can really appreciate it — this is a blog to enjoy.

Aging Parents: Lengthy and Possibly Arduous Caregiving

Take a few minutes to read Long Goodbye of the Elderly Can Create Crisis for Family Caregivers in the April 6, 2010 Washington Post Health section. Abigail Trafford describes what we experienced during three years of aging parent caregiving. She writes, “The long goodbye is a predictable chapter in our lives. Giving care — and receiving care — is what to expect when you’re expecting a long life.”

We miss my husband’s mother, who died in January a few months shy of 91, ending three years of increasingly complex caregiving, but since then our life has become more relaxed. During the last six months of mother’s life we were always tired. Often we commented that we felt like we were saying good-bye to her that whole time. When the phone rang regularly at odd hours our minds instinctively ran through the possibilities, wondering if the end might be near. On a regular day, in addition to our jobs, there were always doctor’s visits, medicines, therapies, activities, assistive devices, time with Mother, and so much more.

Yet the two of us also figured out how to share the burden, being especially alert to help each other when frustration was overwhelming. We kept exercising as much as possible and went out to eat a lot more than unusual. Oh, and we paid someone else to iron the beautiful long-sleeve cotton blouses that Mother loved and wore daily until the day she died.

Google Search Suggestions Support Suicide Prevention

Google Gets ItAccording to the New York Times, when a person searches with terms that could indicate suicidal thoughts, Google results will automatically include suggestions about suicide prevention, including a hotline telephone number. This policy, thought it cannot respond to every potential end-of-life search term, may make the difference in helping a person decide to live. I’ve pasted in a graphic of the Google response. Bravo!

When a suicide occurs in a family, it is never really forgotten. On a beautiful April day more than ten years ago, my parents lost a son and I lost my bother to suicide. I read somewhere that in spring, as the days get longer and the flowers come out, people with depression or bi-polar disorders can’t figure out why they are so unhappy. Some of them decide to kill themselves. Recently when my aging parents and I visited my brother’s grave, I realized again how raw the pain is and that while they have moved on in life, the grief continues. How much it has affected their health in subsequent years, I’ll never know.

Thank you Google. If even a few people have second thoughts, an enormous amount of grief and pain will be prevented, especially for aging parents who never stop asking, “Why?”