Resource: 'Book Tools for a Carer's Journey'.
Resource: 'Book Tools for a Carer's Journey'.
Essential books I recommend
Book recommendations that offer priceless advice, tips, empathy, heart and soul. I’ve read all of these and recommended each of them many times. This list will resonate most with Carers, but I’d highly recommend anyone read them. Together, we can change the narrative, raise awareness and shift the discussion from behind closed doors to shape the collective social need.
Defined by the NHS England. A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid. This means unlike trained nurses or paid carers, people like myself have no training and have to figure it out as we go along. We rely on the internet, word of mouth and our ability to find resources - imagine what it’s like for a partner or husband or wife who needs to care for their loved one in a crisis.
Please forward this email to anyone you think could benefit from it. Get primed for your loved ones, and prepare for your future is my advice!
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The Selfish Pig's Guide To Caring: How to cope with the emotional and practical aspects of caring for someone. By Hugh Marriott. EVERY Carer I talk to recommends this book. There are many memoirs about being a Carer, but, hand on heart, this is THE go-to reference book to feel sane, normal and seen.
Contented Dementia: 24-hour Wraparound Care for Lifelong Well-being. By Oliver James. If your loved one has some form of dementia this is a good reference. Identify and manage your team Chapter 11 is an important read. My Dad had vascular dementia, and I've friends whose parents suffer from Alzheimer’s. Connecting through the use of a photo album, not contradicting whatever your loved one says, and writing down explanations are a few of the most powerful strategies that helped. No one can be a perfect carer. We try our best, but we're human and thus imperfect. Carers can have especially harsh inner critics with extra-tough standards that can set up a self-guilting complex and undermine our feelings of self-worth. This is why I recommend the next book 'Who Cares'
Who Cares? The Hidden Crisis of Caregiving, and How We Solve It - the 2023 Orwell Prize Finalist By Emily Kenway. It’s an intense read because it is so well-researched, presented, articulated and offered. This together with Bruce Feiler’s ‘Life is in the Transitions’ were my biggest ‘aha’, mind-blown moments of 2023. Emily Kenway’s book laid out everything I could not articulate. It also meant that I was ‘unstuck’ from having to try and explain the premise of this website. When the general population, non-carers, don’t know what they don’t know, it’s difficult to present a Premise for doing something! [except it’s becoming clear everyone is aware but we don’t talk about ‘care’, ‘death’, ‘caregiving struggles’ because we think it’s an individual’s issue or a ‘family’s problem’ instead of treating the crisis as a collective social need of our times.
“Deftly blending memoir with forensic research and the voices of caregivers from as far afield as Norway, Nepal and Nebraska, Who Cares is an essential read for anyone who has ever cared for, or will receive care from, another person - which is to say, for everyone”. Here is the short review I did:
Burnout: Solve Your Stress Cycle By Emily Nagoski and Amelia Nagoski. Read about the ‘Human Giver syndrome’ in the introduction. ‘Complete the cycle in Chapter 1’ makes absolute sense. Two sections which will burn ‘The Game is Rigged; The Bikini Industrial Complex.’
The Mindful Self-Compassion Workbook: A Proven Way to Accept Yourself, Build Inner Strength, and Thrive. By Kristin Neff and Christopher Germer. Also Self-Compassion: The Proven Power of Being Kind to Yourself. By Kristin Neff. Self Compassion for Caregivers By Kristin Neff. They have a wealth of resources on the website, offered freely. I used their guided meditations many times.
It's OK That You're Not Ok: Meeting Grief and Loss in a Culture That Doesn't Understand By Megan Devine (see the quote below)
Emotional Agility: Get Unstuck, Embrace Change and Thrive in Work and Life. By Susan David. I wrote the key messages I took from her TEDx talk for rapid reference for you. I read her book every year and take away fresh insights. Susan David's work has been the most useful touchstone reference for me. (see below).
The Happiness Trap 2nd Edition : Stop Struggling, Start Living By Russ Harris. Susan David and Russ Harris' are useful because they don't gloss over the hard parts, or try to convince you that things are easy. There is work to be done and choices to be made. Exercises, explanations and no BS.
Atlas of the Heart: mapping Meaningful Connection and the Language of Human Experience By Brené Brown. I hope the amazing Brené needs no introduction. Here are 2 article posts I made to share her two TED talks one in 2010 'The Power of Vulnerability' and the next on in 2012 'Listening to Shame'. Atlas of the Heart maps our emotions in a way that enables us to decipher what's really going on. Naming the thing we find so difficult to articulate in the moment. I recommend exploring 'Paradox' ''Near Enemies', and 'Story Stewardship', which she highlights here in the new ABK Edit section of her website.
Palliative and End of Life Care in Nursing. By Jane Nicol and Brian Nyatanga. As we are expected to muddle through, I sought out this book. Paid carers or nurses are trained and have resources to leverage. Unpaid carers have no training and limited ‘tools’ and learn by doing through crises.
The first and last books here are painful but useful.
This is the book that I recommend to anyone. Man's Search For Meaning: The classic tribute to hope from the Holocaust. By Viktor E. Frankl
Additional Book recommendations:
These are going on my list to read.
Here is a key quote from Megan Devine’s ‘It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand’ (pp. 59-60). Sounds True. Kindle Edition.
In discussing ambiguous loss and the West’s foundation of unspoken grief, psychologist Dr. Pauline Boss brings up Western culture’s “mastery orientation”: we’re a culture that loves to solve problems.1 That mastery orientation is what lets us find cures for diseases, gives us cool technology, and generally makes a lot of life better. The problem with mastery orientation is that it makes us look at everything as a problem to be solved, or a challenge to be vanquished. Things like birth and death, grief and love, don’t fit well inside that narrative of mastery. It’s that intention of fixing, of curing, of going back to “normal” that messes with everything. It stops conversation, it stops growth, it stops connection, it stops intimacy. Honestly, if we just changed our orientation to grief as a problem to be solved and instead see it as a mystery to be honored, a lot of our language of support could stay the same. We can’t wage war on the “problem” of grief without waging war on each other’s hearts. We need to let what is true be true. We need to find ways to share in the shattering experience of loss—in our own lives and in the larger world. Shoving through what hurts will never get any of us what we most want—to feel heard, companioned, and seen for who we are, where we are. What we need, moving forward, is to replace that mastery approach to grief with a mystery orientation to love: all the parts of love, especially the difficult ones.
If you’ve read one of these books please leave a comment: Which book and what was the most impactful takeaway or learning for you?
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I have read a couple of the books - one of which is the Oliver James suggested book. I am going to investigate some of the others though. I personally find chatting to close friends who have been carers in the past is very very helpful as they too experienced the ambivalence I am feeling with regard to my husband's medical non compliance. We are not 'Saints' and many if not most Carers make HUGE sacrifices over a period of years, to continue caring. Wonderful article Thank You.
Victoria, what a treasure trove of book recommendations! I am so grateful to you for putting this together. My reading list has grown exponentially! While Atlas of the Heart by Brene Brown sits on my coffee table as one of my most frequently refererenced books, along with Mark Nepo's Book of Awakening which I read daily (and can be a tonic to carers and all humans alike!), so many of these other titles I was either unfamiliar with or had been meaning to read, especially Emily Kenway's book. I am very familiar with that wonderful Victor Frankl quote, and should read his entire book. I am also grateful to be introduced to Susan David's work. I look forward to sharing the link to this excellent list of books in my resource round-up on Friday for my readers with a shout-out to you. Thanks again for all you do to support carers, Victoria.