Amy Berman’s daughter, Stephanie, with her greatgrandparents, Herb and Julia.
It tickles me to report that I live with incurable cancer and I am expecting. I am expecting that the cancer will take its toll, that I will need to make choices about my health and care, that I will need the support of my family, and that I will need resources.
Imagine if everyone understood that they are expecting. We should all plan for great beginnings and endings.
Elizabeth Parker Garcia, author of “Where the Truth Lies.” The story took second prize in this year’s John A. Hartford Foundation Heroes of Geriatric Care Story Contest.
In the second installment of our look at the prize-winning stories from the John A. Hartford Foundation’s Heroes of Geriatric Care Story Contest, we are pleased to present Elizabeth Parker Garcia’s “Where the Truth Lies.”
Her story, which took second prize in the contest in May, offers an example of geriatric care that recognizes the family’s role in caregiving. She tells a deeply personal and heartbreaking story about her father with advanced-stage Alzheimer’s disease.
In today’s cross-post from the Prepared Patient blog, we are pleased to present a thought-provoking article by Jessie Gruman, an author, advocate, and founder of the Center for Advancing Health. Ms. Gruman has been diagnosed with five life-threatening illnesses and writes about the need for patient engagement in health care. In this post, she conveys the challenges of caregiving and the potential benefits and pitfalls of using technology to help.
Last week, both my husband and I came away from a conversation with my doctor positive that we understood my new weight-gain plan. Funny thing: Each of us recalled a different plan. I am always struck by how our memories of the words spoken by my doctor can be so dissimilar. No, not all of them, but enough of them to be wary of going to any appointment without a backup listener.
In this final installment of our 2011 Annual Report series, we are pleased to share the voice of those who are too often overlooked—the family caregiver. This video features Mignonne, daughter of 82-year-old Roberto; she speaks candidly about her father’s delirium and the impact it had on both of their lives.
Delirium is a sudden, fluctuating, and usually reversible state of mental confusion that affects up to 50 percent of hospitalized older adults. People with delirium may present as disoriented and have memory problems. As a result, they are often misdiagnosed with dementia, depression, or psychosis.
Who cares for our ill, our aged, our vulnerable? Is it physicians, nurses, social workers, aides? Or is it perhaps another member of the health care team? The largest portion of health care is delivered by families.
Whether it is taking mom to the doctor, preparing meals, or picking up prescriptions, the 42 million family caregivers in the United States provided care valued at $450 billion in 2009, more than our total annual Medicare expenditure in that same year. They provide a lot of care. They keep our frail and complex elders at home.
Making the transition from the “for profit” world to the not-for-profit John A. Hartford Foundation has been an eye-opening experience. After a decade of pitching medications and strategizing over the benefits and deficiencies of a product, I realized that the overall well being of a person involves much more than getting a doctor to prescribe the best drug on the market.
Having spent my entire career in advertising, focusing on how certain medications provide solutions to specific health problems, I believed our health care system was working somewhat cohesively. I certainly was not naïve enough to think it worked flawlessly, but I also was not aware of just how badly it was performing.
Thankfully, my health status has changed little since my last update. I have occasional pain in my right breast, where my cancer began, and a little pain in my lower back, where the cancer has spread. I go to bed a little earlier. Otherwise, I feel like the same person.
Because—thankfully—I’ve been feeling so good, I have been putting off writing a blog that seems to be all the rage with other writers discussing terminal illness: the (before I kick the) bucket list. I have given this some thought over the past two years. For about five minutes I considered a few options: a trip to Antarctica (way too expensive to justify); volunteering in Africa (not a great choice for an immunosuppressed person like me); climbing the Great Wall (done that three times!). Then I realized that it’s not about taking a trip or doing something thrill-seeking and new. I am already doing the things that matter most to me:; making family dinners, talking with my grown children, visiting with dear friends.
I can’t deny it—I miss the mother I once had. Even at age 80, she was vibrant, loving, and independent. And she was strong. For nearly 20 years she provided care to my father, who before his death struggled with normal-pressure hydrocephalus and macular degeneration. What an incredible woman!
Unfortunately, time and illness are no respecters of persons. The past 12 years have not been kind to my mother. At 92, she has become frail and suffers with advanced dementia. Each challenging new decline—losing her memory; needing help to shop, bathe, and manage money; and now requiring assistance just to dress and eat—has left her feeling diminished, depressed, fearful, and incompetent. Recently, the appearance of other typical Alzheimer’s symptoms—changes in personality, behavior, sleep patterns, and in recent months, a growing disorientation to places and people—have deepened her feelings of inadequacy and frustration. It’s heartbreaking.
In addition to the good news of Health Affairs focusing on long-term care coupled with the additional bad news on hospital readmissions from skilled nursing facilities, as I reported a few weeks ago, this special issue of Health Affairs had many other features of interest. A non-exhaustive list includes:
Susan Reinhard, senior vice president of AARP’s Public Policy Institute and leader of a project to enhance nurse and social worker training in support of family caregivers, had a paper discussing promising strategies to help older adults move from nursing homes to less restrictive care—or avoid nursing homes altogether. Although effective, these initiatives are underutilized.
Diane Meier, leader of the Center to Advance Palliative Care at Mt. Sinai in New York, wrote a commentary on the need to implement palliative care in nursing homes. With her co-authors, she argues that essentially anyone in institutional long-term care is at the point where they would benefit from the application of the person-centered principles that are core to palliative care.
When we talk about what we do at the Foundation, we often get asked, “What are you doing for caregivers?”
This puzzles me in two different ways. First, I need to figure out which of the many caregivers is meant: the family and friends who provide care to their loved ones, the direct care workers (aides and attendants) who provide the most hands-on, paid care, or the professionals (RNs, MDs, etc.) who, I hope, also see themselves as caregivers? Second I’m not quite sure what to say. The Foundation doesn’t have many projects specifically focused on informal/family caregivers, but I think that all of our work benefits them as well as the older adults they love.