You may be completely absorbed by how to provide the best care for your loved one when you’re a caregiver. As you get started on the caregiver journey, you may wonder what to expect or even how you’ll handle it all.
Here are some of the most well-regarded books written just for caregivers so you can make the best possible decisions for your loved one — and yourself — throughout the journey.
1. Creating Moments of Joy for the Person with Alzheimer’s or Dementia by Jolene Brackey
Jolene Brackey, author and nationwide speaker, is passionate about helping families who care for loved ones with Alzheimer's and dementia.
This book will help you center in on how to make things better for your loved one. You can find Brackey’s supplemental material, forums, and links to her speaking engagements on her website.
2. Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste
Joanne Koenig Coste learned about Alzheimer’s firsthand once her husband developed dementia. Her book offers some helpful ways to navigate caregiving.
For instance, Koenig Coste explains that repetitive questioning may not be about the answer. Instead, your loved one may be trying to express an emotion or need.
3. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss by Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH
Revised and updated for 35 years, The 36-Hour Day is a great tool. The authors cover almost every topic or question you may have.
You'll find legal and financial tips as well as advice about grooming, exercise, and moods. As a caregiver, you'll also find some information on self-care and how or where to seek help, too.
4. How to Care for Aging Parents: A One-Stop Resource for All Your Medical, Financial, Housing, and Emotional Issues by Virginia Morris
As you read this book, it might be helpful to start making some lists. You might want to take notes on the sections about Medicaid and Medicare or make some notes for financial and legal consideration.
The author notes that it’s good to be honest with yourself about any reservations or limitations you may have so you can be a better caregiver.
5. Eldercare 101: A Practical Guide to Later Life Planning, Care, and Wellbeing by Mary Jo Saavedra
Eldercare 101 covers legal, financial, living environment, social, medical, and spiritual topics. If your loved one has a retirement account, you may find great advice in this book.
However, if your loved one wasn’t great at financial planning, you may find some gaps in this book. The author offers some honest, practical information in hopes that you'll be able to better navigate end-of-life planning.
6. Awake at the Bedside: Contemplative Teachings on Palliative End-of-Life Care by Koshin Paley Ellison and Matt Weingast
Once you’ve finished the practical guides, read this book — because it's about you.
Professionals, caregivers, and even poets have come together to help and guide you along your journey as a caregiver so you can manage the emotional and mental stresses involved with caregiving.
7. Elderhood: Redefining Aging, Transforming Medicine, Reimagining Life by Louise Aronson
Geriatrician Louis Aronson tackles a misperception about old age. Rather than seeing one's more aged years as the end, she considers elderhood as part of life's journey. Elders are alive and well — they’re just old. Like you, they get sick, and then they also get better.
They have ambitions, hopes, and dreams. This book discusses how the health care industry goes into medicine mode when it should go into care mode.
8. On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families by Elisabeth Kübler-Ross
On Death and Dying, by the famous Elisabeth Kübler-Ross, takes a look at the five stages of death and interviews various people to address each of the stages.
You'll read the points of view of the doctors and patients and how that also affects you. This classic book is a must-read for palliative caretakers.
9. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley
In Final Gifts, the authors write that there’s beauty in transitioning from life to death. Now there’s a growing movement of death doulas that work to erase the stigma of death.
There’s just as much spirituality in giving birth as there is in dying.
10. Cultivating the Doula Heart: Essentials of Compassionate Care by Francesca Lynn Arnoldy
There are several workshops and programs you can attend to become a death doula. If you are unsure or have some questions, this book outlines the components involved.
You'll also find some guidance if you are currently giving palliative care. Arnoldy writes that the hardest lesson for any of us to learn is to be present without judgment.
11. Come of Age: The Case for Elderhood in a Time of Trouble by Stephen Jenkinson
Once people get old, our society turns off the lights and shuts the door. Jenkinson wants to change that — and claims that we’d become better people and contribute to more successful communities.
12. The Intimacy of Death and Dying by Claire Leimbach, Trypheyna McShane, and Zenith Virago
The Intimacy of Death and Dying approaches topics often overlooked in caregiving and grief. What if there is no body?
What happens when your loved one doesn't come home one day? Most of us have an idea that we are going to see or tangibly experience our loved one's death. The authors tackle these subjects and more. If your experience in caregiving or death is uncommon, you may find some help here.
13. Die Wise: A Manifesto for Sanity and Soul by Stephen Jenkinson
Be prepared to read a poetic, philosophical book about death. As a caregiver, it's important to note that the considerations you give your loved one will come full circle.
If you can see death from this perspective, you may be able to reach a different level of compassion and maybe a higher level of care.
14. The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief by Francis Weller
Psychotherapist Francis Weller doesn't want you to avoid grief. He believes you avoid a connection with others when you bottle up your pain and hide it.
As a caregiver, this is an essential read so you’re able to communicate your feelings with other loved ones. When you understand your grief, you become a better caregiver.
Check out our recommendation for the best books on grief if you're looking for more on the subject.
15. When Your Parent Becomes Your Child: A Journey of Faith Through My Mother’s Dementia by Ken Abraham
Author Ken Abraham didn't expect to travel the road of dementia with his mother. You’ll follow his struggles in his heartfelt book, When Your Parent Becomes Your Child.
Through his family's experience, you'll gain some insight as well as some coping mechanisms to make it more bearable.
16. Where the Light Gets In: Losing My Mother Only to Find Her Again by Kimberly Williams-Paisley
Williams-Paisley's mother has primary progressive aphasia, a form of dementia. Every family member (her father, siblings, and Williams-Paisley herself) experiences the diagnosis in their own way. The family ultimately learns to cope together.
Check out our selections for the best books on Alzheimer's and dementia if you need more recommendations.
The Amazing Gift of Being a Caregiver
Being a caregiver can be an amazing journey — it can offer small rewards in a sea of challenges. The key advice in most of these books: Don’t forget to care for yourself, too.