Roller Coaster of Caregiving

Jane Cassily Knapp, R.N., LCSWC, offers advice for the caregiver based on her insights into the emotions of caregiving and family dynamics. From my vantage point, I heartily concur with her wise counsel. And I'm so glad to see emotional aspects addressed. Everyone involved has emotions about the situation, practical decisions, major life changes, losses, and the primary decision maker.

I encourage you to read Knapp's article,"The Roller Coaster of Caregiving," in Caregiver.com here.

Kimberly Williams-Paisley's story and caregiver tips

I enjoyed reading Kimberly Williams-Paisley's story of the decisions her family made when her mother was diagnosed with a degenerative brain condition caused by Alzheimer's. Williams-Paisley's 2016 book, Where the Light Gets In, is more comprehensive. What I read was Amy Spencer's "A Mother's Memories" article in Parade magazine. You can read it here.

In the Parade article, Williams-Paisley adds a few tips for caregivers: Talk about it. Expect guilt. Stand your ground. Write down your wishes. She expands on each in the article.

Better Health While Aging

I'm excited to share a wonderful resource, a new website by geriatrician Leslie Kernisan, M.D., M.P.H. It is Better Health While Aging, at betterhealthwhileaging.net.

The site gives tools and practical info on topics many caregivers will encounter at one time or another. I encourage you to check it out.

Who Am I? Scrapbook

What a great idea presented in this week's Caregiver.com e-newsletter. Whether the care-ee has or doesn't have dementia, talking about the past can be a warm and bridge-building activity. And if the caregiver is new to the care-ee, having a Who Am I? scrapbook would be helpful. Even family caregivers might benefit from a few reminders about Dad's war years, Mom's pet charities from her volunteer positions, favorite sports teams, any awards they received, and so forth. Get ideas for what to include in Lynn Lancaster Gorge's article here. A Who Am I? scrapbook is a fun conversation starter.

Tips for Organizing a Medical History

We’re in the Emergency Room. The nurse informs us that because of their computer conversion two years ago, they no longer have my husband’s medical history. Well, I guess it’s nice to know we haven’t been in the ER in at least two years. There for a while, we visited so often, Dr. Epstein and the nurses recognized us when we showed up. Since it has been a few years, they probably won’t recognize us today. But here comes Dr. Epstein, and sure enough, he has a friendly grin when he sees us. He abracadabras the keyboard with his fingertips to unearth my hubby’s history from the archives. But it doesn’t go back far enough to answer a few questions.  

Oh, how I wish I had had the foresight to organize a medical history for my husband twenty years ago and for my mother these last ten or so years. Accompanying the two of them, I find myself in hospitals and doctors’ offices a lot. I take notes, which I file in some black hole somewhere despite better intentions.

My husband’s and mother’s medical histories in a compact notebook or even a spreadsheet I could fold and stash in my purse would help us answer questions and help the doctors see patterns. My own health issues, though not as life-threatening as theirs, are all in a jumble in my brain. What did that allergist diagnose? When? How many times have I talked with my doctor about shortness of breath? Were they all during the summer allergy season? Certainly some doctors have tested for asthma? Haven’t they? I have NO IDEA.

“Tips for Organizing a Medical History” tells what to include and how to organize a medical history. This practical article from Kathy Porter for Caregiver.com is very helpful, and I intend to use it as a guideline when I do this. So far, my fumbling around in my memory to answer doctors’ questions has not had dire results. Plus, my husband and mom have both been lucid and able to help. But as their health care power of attorney, I need to take this seriously. I recommend Kathy Porter’s “Tips for Organizing a Medical History.”

Some Things I Have Learned

If you've cared for a loved one for one week or twenty years, you've learned things. Take a moment to pat yourself on the back by reading "Some Things I Have Learned," an article by John Patterson in Caregiver.com's online newsletter. Click here.

Caregiver Book Club

Take a look through the twenty book club recommendations by Today's Caregiver here.

Here are just four that look interesting:
The Soul of Caregiving
A Guide for Caregiving: What's Next
Dementia Caregiver
The Ultimate Compassionate Guide to Caregiving

Lots of interesting choices for various aspects of caring for loved ones.

Toward better informed caregiving ... Being Mortal by Atul Gawande

In Being Mortal: Medicine and What Matters in the End, Atul Gawande, M.D., makes a powerful case for improving quality of life in our final years. Drawing on scientific studies, he points out that people facing the finitude of life want meaning. In sharp contrast are case studies of terminally ill or simply aging people caught in a medical system focused on curing what in reality cannot be cured. This results in a person’s last days or years being painfully full of treatment side effects that prevent him from enjoying what matters most to him.

Gawande begins the journey that became this book by questioning whether his medical training had adequately prepared him to help patients with their physical decline and mortality. He looks at how differently a geriatrician and a “regular” physician approach an elderly patient. Older folks are clearly better served by the geriatrician considering the whole person with multiple irrevocable issues natural to aging. Yet this field is lower paying than other medical fields, and not nearly enough doctors train for it.

To begin with, assigning aging to our medical system, as we do in the United States, is a core problem. Gawande posits that it doesn’t belong there. Aging is not about only safety and survival, medicine’s focus. He sets out on a journey to explore how we might change and until the system changes, how he might change to give his patients more control, options, and meaning. “What makes life worth living when we are old and frail and unable to care for ourselves?” [page 92 in my edition]

In conversational style he recounts stories of his elderly relatives, his own patients, and other people with terminal cancer. He looks at the quality of their last days/years when medicine railroads them into trying every procedure and medicine available to prolong their lives, or requires safety above all. He contrasts that with the last days/years of people who weigh their risks, decide what matters most to them (eating chocolate ice cream, visiting with friends, as examples), and choose the medical options that best enable that outcome. He adds to these anecdotes the results of scientific studies on the subject and the wisdom of hospice experts.

Gawande’s journey brings him to understand that the questions he asks a patient facing death are critical. One doctor-patient relationship style is the doctor telling the patient what to do. On the other end of the spectrum is an informative style in which the doctor explains options. Gawande discovers, “In truth, neither type is quite what people desire. We want information and control, but we also want guidance. The Emanuels [medical ethicists] described a third type of doctor-patient relationship, which they called ‘interpretive.’ Here the doctor’s role is to help patients determine what they want. Interpretive doctors ask, ‘What is most important to you? What are your worries?’ Then, when they know your answers, they tell you about the red pill and the blue pill and which one would most help you achieve your priorities.” [page 201] A doctor’s time and words matter. Gawande begins to move from informative to interpretive in his personal doctoring style. This changes choices for both patient and physician.

This book evoked a range of emotions as I read it. I was fascinated to learn the history of nursing homes and assisted care facilities. I felt excited to hear of facilities whose founders really thought outside the box in order to give more meaning to residents’ lives. Maybe I could find one of these places when the time comes for me. My mother’s nursing home does many things to enrich residents’ lives, and I feel glad to know this. Reading this book also helped me trust my gut sense of how to keep my mother from being railroaded by the medical system. I felt sobered learning the devastating trials of patients cited in the book. What difficult choices they had to make. I felt sad for them and their families. I felt vulnerable and oh so mortal. I felt heartened to see instances of the human body triumphing and persevering, at least temporarily, against unbelievable odds. I felt tickled by the sweet simplicity of people’s last requests. I felt awed by the sophistication of modern medicine. And I felt like jumping up and down and cheering for the profound beauty of hospice care.

Atul Gawande takes an uncomfortable topic, end of life, and makes it interesting. I recommend this book for anyone pondering life’s finitude—measuring his horizons in the here and now—and for anyone in any medical field. Gawande’s scientific sources for Being Mortal: Medicine and What Matters in the End are included in a bibliography.