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.

Tips for caregivers of people with Alzheimer's

Great tips here for caregivers during National Family Caregivers Month and National Alzheimer's Disease Awareness Month:

This article from The Daily Herald was written by the Alzheimer's Association.

All the tips are helpful, but my favorite is "Make a standing appointment to give the caregiver a break." Some of you who know people with Alzheimer's and their caregivers will be able to stay with the care-ee to give the care-er a break. Don't worry about understanding which stage of Alzheimer's the care-ee is in. The care-er can easily brief you on what challenges you might face for an hour or two. For example: "You can expect him to ask you where I am about every ten minutes. Reassure him I'll be back soon. He likes to go out to the mailbox. He won't get lost, so don't worry. If he wants to walk around the block though, could you please go with him? If he wants to watch TV but can't remember the golf channel, it's 242." 

On the subject of standing appointments, I also suggest initiating social invitations to your caregiver friends. If your friend's care-ee is in a stage of Alzheimer's that requires supervision, you might have to figure out a way to find a sitter so that you and your friend can go to lunch or coffee. Trust me, your friend probably does not have the social energy to initiate toward you, but he or she would love your company. Even regular phone calls to chat would be so very welcome.

Squirrels and Ducks

I recently saw a sweatshirt with a funny saying, something along the lines of

I do not have ducks.

I do not have a row.

All I have are squirrels,

And they’re drunk.

That’s how I feel lately. I keep thinking I will get my ducks in a row. But then the ducks waddle off into the woods, and when I send squirrels in after them, they scamper about hunting acorns, completely oblivious to the assignment: Bring back the ducks! My mistake of course is assigning squirrels anything, but they’re all I’ve got.

My brain used to be able to think in a straight line. First, break down the big goal into little tasks. Second, make a list. Third, rearrange list in priority order. Do tasks, take notes, communicate, etc. Nowadays, my brain freaks at the big goal, finally settles down and may think of one or two related tasks, may write them down, then almost always misplaces those notes. Squirrels!

I keep telling my siblings I’m burnt out from caregiving of our parents for fifteen or so years. I keep telling my siblings my brain doesn’t organize any more. I’m scarily forgetful. And they’ve been great at accepting my new limitations, filling in, reminding me of things. Recent changes in our mother’s life would not have happened without my capable sisters. I thank God for them every day.

I still have anxiety, however, about coordinating communications among Mom’s health care providers. Why does a nurse named Cecile call me every day about meds and test results? I thought Mom’s nurses were Jungsin and Jocelyn. Let’s see, where did I write down the case manager’s and social worker’s names and numbers? Does Mom’s gynecologist fax test results only to the nursing home doctor or also to Mom’s floor nurse?

I once—back when I could line up ducks— wrote an article called “Nine Things I Wish Health Care Personnel Would Do Differently.” Someone challenged me to find a tenth thing because “Ten Things” is a catchier title. My nine things all came out of actual frustrations with how my parents were treated, and I couldn’t think of a tenth at that time. This week’s events at my mother’s nursing home have sparked a tenth idea. So I guess at least one of the squirrels has sobered up and come back. Now if I can find the article with the nine things, I’ll put them together. Squirrels AND ducks!