Alzheimer's Caregiving Community

Books Can Make the Difference on the Alzheimer’s Caregiver’s Journey

Reading often closely follows our personal progression in life. As we mature and our interests and life situations change and develop, so do our reading patterns.

My progression began with nursery rhymes and Golden Books that filled my imagination, then came Nancy Drew and Cherry Ames, who fueled my ambitions, followed by the requisite period of academia preparing me for “real life.” By the time I reached adulthood, my attention turned to the New York Times Bestseller List, and the occasional beach book.

For some, reading will become a way of life as they devour books; for others, a lovely, welcome pastime; for the esoteric, an experience or quest for advanced knowledge, and for a few, a necessity when an unknown arises. If you are a caregiver, no matter where you fall on the spectrum, reading will become your source of knowledge, your advisor, your friend, and your savior in those lost moments.

Having always been a reader it was inevitable I would turn to books upon the diagnosis of my husband’s early-onset Alzheimer’s. Books are what helped me make sense of an almost untenable situation, answered questions when there seemed to be no answers, provided direction in a sea of darkness, and helped me not feel so adrift. For those of you who are not readers or are occasional readers, I can assure you books, podcasts, and blogs will serve you well.

When I was a caregiver, AlzAuthors, the global community of authors writing about dementia from personal experience,  did not exist. But if it did, I can tell you with great certainty that my foray into the genre of caregiving books would begin with my urgent need to understand what I was dealing with. 

That was not an easy task at that time, as there was a myriad of books out there to sort through and decipher, almost as overwhelming as the disease itself. Thank goodness today for the AlzAuthors Bookstore, whose vast collection is sorted out by categories, enabling the reader to quickly hone in on specific needs at specific times.

If I were a new caregiver today, I would head right to the Caregiver Guides Section to peruse the selections in search of information and understanding about Alzheimer’s, followed by checklists and to-do guides to help me through the initial shock and start me on the caregiver path. Under Memoirs I would look for stories to inspire, illuminate, support, and help me not feel so alone.

One of the things I would be thankful for is the now firsthand information on early-onset dementia, something that was missing years ago. The honesty of the authors combined with their various coping methods helps readers feel less judgmental about themselves and their situation.

On a self-indulgent whim, I would purchase books under the Fiction category to go on a much-needed escape. And since I wouldn’t have much time to read (what caregiver has time?), the AlzAuthors blog is a real gift.

When one is dealing with a catastrophic illness, the sense of isolation, be it physical, mental, social, or emotional, can be daunting and overwhelming. It is no wonder some caregivers suffer various degrees of depression or feel isolated as their world shrinks in so many ways. The gift of reading helps to alleviate some of that by sharing other perspectives, and imparting knowledge.

While it is not a replacement for actual friends or family, reading is a wonderful substitute that is always there and available. The vast range of knowledge from clinical, to checklists and facts, to personal, all covering the range from diagnosis till the end, is what allows caregivers to stay on the path and complete their journey intact. Preparation and knowledge are among the top skills any caregiver can possess.

I am grateful to all the authors who accompanied me on my journey, whose dog-eared pages sat faithfully on my nightstand, whose eBooks and audiobooks let me read during those times when I had so little time. To be provided with such comfort, knowledge, direction, and insight was truly an invaluable gift.

About the Author

Susan’s background reflects her versatility. A wife, mother, grandmother, she has also been a schoolteacher, a realtor, a sales professional, a corporate trainer, a counselor, and a consultant and speaker on various aspects of Alzheimer’s and dementia. She holds a master’s degree in counseling and human resource development. She is the author of My Life Rearranged, a contributor to, and a caregiver advocate.

Connect with Susan G.Miller


Amazon page

AlzAuthors Page

Ambassador and contributor to The Caregiver Connection on Facebook

Caregiving Community Mental Health

How To Hire the Right Caregiving Professional to Support You

Keeping a life during a life of caregiving can feel like a tall order. How do you cope with the pressure, the stress, the worries, the needs and stay present in your career, your priorities, your relationships? How do you stay your best while getting the best for your caree?

A professional, like a therapist, coach, or consultant, can be a huge help as you navigate the caregiving experience. We offer suggestions to help you choose the professional right for you:

  1. If you want to heal a past pain, then a therapist will be the right choice for you. A therapist can help you cope with the past and its impact on the present while putting strategies together so you are ready for the future. For instance, a therapist can help if you struggle caring for a family member because of a past abusive relationship. In addition, the right therapist can help you heal from PTSD and the impact of the abusive relationship on you. If you work, check with your employer’s Employee Assistance Program (EAP) to learn if you have free counseling sessions available to you.
  2. If you would like a professional assessment of your caree’s situation, then an Aging Life Care Specialist can help. (Aging Life Care Specialists used to be called geriatric care managers.) Typically a nurse or social worker, an Aging Life Care Specialist can recommend services and programs for your caree, can put plans in place so your caree remains safe at home, and can help manage your caree’s team of home care workers. The Aging Life Care Specialist focuses on your caree’s needs because of their specialization in the aging process. You also can check with your employer’s EAP to see if you have a benefit that offers free consultations with an Aging Life Care Specialist.
  3. If you would like help for yourself, then connect with one of our Certified Caregiving Consultants™, who have expertise in the caregiving experience. A CCC can help you understand your priorities, create coping strategies and manage your stress. CCCs can help you find the right facilities, agencies, resources, products, and services for you and your caree. In addition, CCCs can brainstorm solutions with you and provide an empathetic ear so you can vent without guilt. Our CCCs also have a personal caregiving experience, which means they bring an understanding of the experience into their work. The CCCs focus on you because of their specialization in the caregiving experience.
  4. If you want to focus on achieving your own personal goals during a caregiving experience, you could hire a life coach to help. Life coaches help you start where you are to move forward into achieving personal or career successes. Many life coaches specialize in helping you with specific life goals, like losing weight, changing careers, or writing a book.

You can use these professionals in any way that works for you. Perhaps you hire an Aging Life Care Specialist every January to assess your caree and review what additional services or programs your caree may need. You may want to take advantage of free sessions with counselors available through your company’s EAP every year. When you exhaust the free sessions, you can hire a CCC or life coach. Maybe you hire a CCC for monthly sessions so you can talk it out with a professional who gets it so that you can hear the right solutions. Perhaps you hire a coach or therapist or CCC for quarterly sessions each year. Whatever will work for you works.

About the Author
Denise M. Brown began supporting family caregivers in 1990 and currently offers leadership and  coach training for both family caregivers and former family caregivers. She began helping her parents after her father’s 2004 bladder cancer diagnosis. Visit to learn more.

Caregiving Community

7 Days to Become a Better Caregiver

No one prepared you to be a caregiver. You did it because you care. I know you care because you are here reading this blog post. I know you want to be a better caregiver because you continue to seek out information.

Your next step is to take some action, and I want to help. I have created this simple plan, “7 Days To Become A Better Caregiver”, to support you in becoming the best caregiver you can be. These small steps will add up to make it easier for you and your loved one.

DAY 1: Spend 30 Minutes A Day With Yourself

Set aside 30 minutes to get away from all caregiver responsibilities, and just think about yourself. Use this time to read, soak in the tub, take a nap, pray, or simply sit outside in the backyard.

DAY 2: Set Some Goals For Yourself

Yes, you need some goals. Even simple ones – daily or weekly tasks. Dream a little. It will help you to have something to look forward to, and to work towards.

DAY 3: Find A Caregiver Buddy

Find another caregiver friend whom you can talk with, vent to, share stories with, and ask for advice. Take turns relieving each other or sitting with loved ones.

DAY 4: Plan A Healthier Lifestyle

Are you eating a healthy diet? Are you exercising regularly? Are you getting enough sleep? This isn’t about vanity. It’s about treating your body well and feeling good, so you have the energy and stamina to help care for someone else. Today, make a list of which foods to eat more of, and those you might cut down on. Incorporate fun exercises into your caregiving routine. Do them daily.

DAY 5: Search For Resources

Where can you get help if you need it? There are resources for help, advice, and respite. There are people to help you to find the support or help that you need. Contact at least one today. Check out the CircleOf Resource Center, and read 

DAY 6: Once A Week, Take 2 to 4 Hours For Yourself

Take a long break to recharge. Go to a movie. Take a drive. Write. Volunteer. Visit someone, or a place (museum, park, etc.) Take a class. See the doctor; get your annual physical.

DAY 7: Set Aside 30 Minutes With Your Loved One

Remind yourself that you are family—whether blood or chosen—not just a caregiver. Do an activity together, maybe something your loved one liked to do. Draw or color, or work in the garden. Have a conversation. Reminisce.

Simple! Right? With all you have to do, I want to make it easy. By taking these little steps each day of the week, you will find yourself healthier, more prepared, and less stressed. Even better, your loved one may be happier.

Toula Wootan

Caregiving Community

Gifts We’re Loving

The holidays are coming so we’ve put together a gift guide for things the caregiver or the care recipient in your life will really want. Show the ones in your life you love them with thoughtful tokens of appreciation – even something as simple as a card can brighten someone’s day!

Caregiving Community

5 Questions w/ Lori La Bey (Alzheimer’s Speaks)

Lori La Bey is located in the U.S., but is known globally when it comes to dementia care. Her mother lived with dementia for 30 years, and Lori created Alzheimer’s Speaks and Dementia Map to honor her with the mission to shift dementia care from crisis to comfort worldwide.

1. Who do you care for (now and/or in the past)? What is your role/relationship?

I cared for both my dad who passed away from brain cancer in 2001, and my mother who died from dementia after living with it for 30 years, in 2014.

2. When did you start to realize you were a caregiver?

With my mom, it was a slow process, assisting her as my father was her primary care partner. It was very natural and just something a daughter does for her parents. 

With my dad’s cancer, it hit quick. Everything changed with one phone call. We had to pick my folks up at their cabin and bring my dad down to the Twin Cities for emergency surgery. The hospital got him set up in a room and allowed us to celebrate Christmas with him for two days, before they did the surgery. They didn’t know if he would survive. From this point forward, nothing in my life was the same. Dad pulled through the surgery and actually did well for about 4 ½ years, but mom’s needs increased; so I had to step up and step in to support my dad and mother. 

3. What helps you when you’re feeling overwhelmed by your caregiving responsibilities? What advice would you give to family caregivers in this situation?

My spirituality helped me a lot. I hate to say that in the beginning of the journey, I saw friends trying to help more like another thing I had to coordinate, communicate, and oversee. Boy, was that a mistake! I didn’t realize how much I missed my friends. I didn’t figure that out until one day I broke down and took time to be with my friends. Actually, I met them to get them off my back. But then the magic happened. We laughed and cried together. I felt normal again. I found I could care better when my soul was full. 

I had gotten so task-oriented doing everything for everyone else, because I didn’t feel there was time for me. I felt that would be selfish of myself. I learned that to be a healthy care partner, I needed to take care of me, too.

4. What is the one thing you know now that you would tell new family caregivers?

  • Be just as patient and loving with yourself as you are with others.  
  • Don’t let your inner critic run you down.
  • Focus on whether the person you are caring for is first: safe, happy, and pain-free. Then do your tasks. You will find you are more compassionate, less stressed, and will get the job done in a better fashion.

5. How has caregiving changed you?

Caregiving has changed my life forever. It’s made me realize we all have the power to care better, to change the system, and to assist others on the same journey. I quit my job to shift dementia care from crisis to comfort. I advocate for dementia via my company, which raises all voices around the world, including those living with a form of dementia. We have a radio show, blog, and a variety of videos from Dementia Chats highlighting those living with dementia, plus Dementia Quick Tips (things I wish someone had told me). I also partnered with David Wiederrich to launch, which is a global resource directory free to the public, as well  as offering free and economical plans to those who have services, products, and tools to share. We feel strongly that budget should not limit access to those in need.

Click here for a downloadable brochure on Helpful Tips for Dealing with Dementia, courtesy of Alzheimer’s Speaks and Dementia Map.

Caregiving Community

Movies We’re Loving

Movies can be a great escape, or they can help us see ourselves and know we’re not alone in our journey. In no particular order, here are some movies that enlightened us, showed us the full spectrum of caregiving and made us feel more connected. Great for a rainy day or cozy evening at home!
The Father

A man refuses all assistance from his daughter as he ages. As he tries to make sense of his changing circumstances, he begins to doubt his loved ones, his own mind and even the fabric of his reality.


Sam and Tusker are traveling across England in their old RV to visit friends, family and places from their past. Since Tusker was diagnosed with dementia two years ago, their time together is the most important thing they have.

The Upside

A comedic look at the relationship between a wealthy man with quadriplegia and an unemployed man with a criminal record who's hired to help him.


A young man is rocked by two announcements from his elderly father: that he has terminal cancer and that he has a young male lover.

The Savages

A sister and brother face the realities of familial responsibility as they begin to care for their ailing father.


Georges and Anne are an octogenarian couple. They are cultivated, retired music teachers. Their daughter, also a musician, lives in Britain with her family. One day, Anne has a stroke, and the couple's bond of love is severely tested.

Still Alice

A linguistics professor and her family find their bonds tested when she is diagnosed with Alzheimer's Disease.

The Fundamentals of Caring

A man suffering a family loss enrolls in a class about caregiving that changes his perspective on life.

Me Before You

A girl in a small town forms an unlikely bond with a recently-paralyzed man she's taking care of.

Crip Camp

Down the road from Woodstock, a revolution blossomed at a ramshackle summer camp for teenagers with disabilities, transforming their lives and igniting a landmark movement.

It's Not a Burden

The humor and heartache of raising elderly parents

Sky Blossom

An inspiring film about today's students taking care of family with disabilities across America.

Caregiver: A Love Story

The tale of one man struggling to care for his dying wife. This film highlights an essential, yet largely unseen workforce—the family caregivers of America, and challenges viewers to acknowledge the growing strain placed on them.


A documentary. Care work is essential work. It's time for respect and a living wage.

Caregiving Community

Hands Off the Popcorn

“Hands off the popcorn,” I urgently declared.

It was a favorite joke between us. “Hands off the popcorn” meant I was done for the day. No more taking kids to school, extra-curricular activities, dinner, the inevitable long process of putting our toddler to bed; her demands for one more glass of water, one more book, one more song. Making sure the teenager came home on time and did her homework. And always in the background, what it took to live with Joanne’s illness, her slowly deteriorating body.

Most days, we were joyful in a way I’d never experienced. She had insisted we wouldn’t do this alone and I had become accustomed over time to the steady stream of helpers. I had learned to say “thank you” instead of “are you sure you have time?” Somehow, without my even realizing it, I had learned to take care of myself, to answer the call for time or rest or just a simple five-minute break. I had learned to stay up to date with me.

But not on popcorn days. Those were the days someone cancelled, or a child was sick, or I hadn’t slept well. And, in her wisdom (or maybe simply her endless love for me) she didn’t take it personally; she simply smiled that knowing smile and waited for me to do whatever it was I needed to do until I was ready to carry on again with the rich and lovely life we’d created out of the rubble of her broken bones.

She reached out a hand, playfully feigning a steal of the kernels, poised above my bowl. She lingered over a particularly buttery bite, and I shooed her hand away, her fingers flies buzzing around my treat. I was going to eat the entire bowl. Myself. I was not going to share. And I was going to enjoy Every. Single. Morsel. Even if I was full.

Right from the start she set the stage for me to discover what it felt like when I needed a “selfish” moment.  “You’re not doing it all yourself. I need you to be my lover, my beloved. If you are busy doing everything you won’t have the time or energy for that. And you’re the only one who can do that!

I finished the last bite of popcorn, savoring the taste on my tongue. As we prepared to sleep, to start fresh the next day, that bowl of popcorn had been just what I needed. I had been my own priority, however briefly, and I felt better for it.

I reached over and took Joanne in my arms, ready to be generous with a goodnight hug and kiss. She answered my invitation with an enveloping set of arms taking me in, open to whatever I had to give. When I answered the deep call for my own attention, I had so much more to give!

Cheryl Espinosa Jones (CA MFT#27876) is a grief counselor, educator, writer, and the host of Good Grief, a weekly radio show investigating loss, grief, and transformation. Her novel, An Ocean Between Them, describes a mother-daughter relationship struggling to heal after a cancer diagnosis. The heart of Cheryl’s work stems from the 10 years she supported her wife while she lived with cancer and Cheryl’s immersion into her own grief after her wife’s death, surprised by frequent moments of joy.

Caregiving Community

5 Questions with The Caregiver Coach, Benita Hampton

Benita Hampton, a Certified Dementia Practitioner and Caregiver Coach with a specialization in Aging & Dementia Education, is the founder and host of The Caregiver Coach podcast. During the span of her career, Benita has taught many workshops on the topics of aging and dementia, particularly, sundowning, dementia-related behavioral issues, and healthcare planning. Benita’s debut book, “Mama’s Got Dementia, Daddy’s Gone Crazy…and I’m Not Far Behind” is currently in the works and is scheduled for publishing by mid-next year. 

1. Who do you care for (now and/or in the past)? What is your role/relationship?

My mom and I cared for my grandma after she was diagnosed with dementia, over 20 years ago, and I credit that caregiver journey as the catalyst that pushed me forward to work in senior care, then become a caregiver coach. Back then, there was virtually no such thing as a coach or advocate in the caregiver support space and I watched the physical and emotional toll that caring for grandma took on my mom. It was then that I resolved to do all that I could to become a resource to others that found themselves thrust into their own caregiver journey. I also had the honor to care for both of my parents at the end of their lives, and I feel that the experience of caring for an aging parent just strengthened my resolve to support other caregivers.

2. When did you start to realize you were a caregiver?

When I am teaching a workshop I often ask the attendees to raise their hand if they ever looked into their parents’ eyes as a child and said, “I love you so much, I can’t wait until you grow old and can no longer care for yourself. I will find the best living accommodations for you when that time comes.” After 17 years of my career as a caregiver coach and an aging & dementia educator, I have yet to ever have an attendee or client say, “Yes! I’ve said that!” I think that caregiving is something that can just sneak up on you. It’s not always something that you plan for, and it’s certainly not something that you ever feel well prepared for. My personal caregiving journey is no exception. I did what so many other family caregivers have had to do, I saw that my loved one had a need and I just started providing care, while learning (through trial and error) along the way. It was something that just continued to evolve until one day I realized that I was a caregiver.

3. What helps you when you’re feeling overwhelmed by your caregiving responsibilities? What advice would you give to family caregivers in this situation?

I am very passionate about ensuring that caregivers create a plan of care for themselves. Whether you call it a respite care plan, an escape plan or something else, I believe that every caregiver needs to have this in place, and then make sure it’s followed. Every situation is different, maybe a family member can step in and provide regular breaks, maybe a professional caregiving agency can assist with providing care so that the caregiver can seek respite. Providing care for a loved one comes with a high risk of caregiver burnout, creating a respite plan of care for yourself will go a long way to help avoid the dangers of burnout.

4. What is the one thing you know now that you would tell new family caregivers?

In my coaching practice, we have a saying: “Stay Bendy” It’s how we remind ourselves and each other to stay flexible. The dynamics of caring for an aging loved one are constantly changing. What worked for you on Monday, might not work on Tuesday. Give yourself permission to stay flexible and breathe through the changes. 

5. How has caregiving changed you?

My caregiving journey has changed my life. Caring for my grandma, all those years ago, caused me to choose my career path and to serve in the caregiver support space. In the introduction to my podcast I talk about both the messy and the magical parts of being a caregiver to someone you love, and I believe that. Some days are messy, some days are magical, most days are hard. Caregiving has taught me flexibility, patience, gratitude and to celebrate the small victories. Caring for my parents taught me the importance of advocating for your loved one; to be brave enough to have conversations that matter; and that you can experience peace of mind that surpasses understanding when you know that you are carrying out your loved one’s wishes during their final days.  Caregiving is tough stuff, but you can still find joy in the journey, and it’s a journey that will change your life.

Caregiving Community

Boundaries Before Burnout: Caring for Yourself in the Thick of Caregiving

When my husband—debilitated, immunocompromised, blind, and unable to walk—was discharged after a devastating bone marrow transplant, his doctor told me he couldn’t be left alone even for a minute. I’ll never forget my terror and outrage; I spluttered out something like, “I can’t do that! I have kids! I have to…sleep!”

I didn’t realize it then, but just by saying “I can’t,” I was setting a boundary in the face of an impossible demand. I wish I’d advocated for myself so clearly in the face of other expectations that were slightly less unreasonable than solo 24/7 care. I often let the intensity of my husband’s needs pull me into managing his care and its attendant paperwork, phone calls, and logistical demands for such long hours that I reached a stressed-out, exhausted breaking point.

From that experience, I learned how important it was to set boundaries before I got burned out. Setting limits can be one of the hardest things for dedicated caregivers to do—especially for women, as many of us are socialized to give of ourselves endlessly. Saying no or taking a break from caring can prompt guilt, and it’s tough both to find respite care and to trust others with a fragile loved one.

Training a consistent respite service, however, is an investment in future breaks that will protect your mental health and make long caregiving sustainable. In the case of my husband’s 24-hour care needs, we were fortunate that we could dip into savings and hire home attendants for a short time. Many community organizations offer respite care services (now becoming more available after COVID concerns halted them), and friends and family may also pitch in, especially if you make specific requests. However you find relief, drawing clear lines about how much you can handle is a crucial step in surviving your caregiving journey—and maybe even thriving in it.

Kate Washington is the author of Already Toast: Caregiving and Burnout In America (Beacon Press, 2021) and a speaker on the systemic challenges facing family caregivers. Her writing has appeared in The New York Times, TIME, Eater, Catapult, and many other publications. She holds a Ph.D. in Victorian literature from Stanford University and lives in Sacramento with her husband and two daughters. Connect with her at or on Twitter @washingtonkate


If you’re in need of respite care or services to support you in your caregiving responsibilities, here are some resources that may help:

ARCH National Respite Network

Eldercare Locator

National Adult Day Services Association

National Institute on Aging


Caregiving Community

Spotlight on BJ Miller, President and Counselor at Mettle Health: “Difficult Aspects of Caregiving”

Originally published on Medium

There’s this thing where people call caregivers “angels” and such and that can be this over-hyped putting-people-on-a-pedestal thing is problematic in a lot of ways because we all need to be caregivers. Don’t immortalize someone for thinking or caring about another human being because we should all be doing that. It’s also mundane, hard work, it’s not heroism.


Checking yourself, introspection and self-awareness are a huge piece of doing this as well. Check in with your gut; are you helping or hurting this situation?


The Bodily Tasks of Caregiving

We are back to this idea that caregivers are “angels.” Well, they’re actually just human beings. You get to be grossed out, you get to not want to do it, and you also get to have help if you need it.


This is a big thing that keeps folks from really getting into caregiving, oftentimes it’s seeing someone else go through all this brings up their own fears about illness or death, so there can be a lot to process and a lot to work through.


We have to get over this idea that “normal” people are independent and invulnerable and only those poor pitiful sick people need help. We all need help, all the time and this is natural. This is normal.


But just because helping someone or needing help is natural and normal doesn’t mean it’s not also hard or disgusting sometimes. There is nothing wrong with being grossed out. The trick is to try to find a way to stay. If you can’t stay, maybe you just need to find a way to get help.


If you’re on the receiving end of caregiving, it can become a little demoralizing at some point. The times I’ve been a patient, it’s good for me when I know my friends, family, doctors, nurses, or anyone else is learning something or gaining something from my situation. So, look out for lessons learned and anything that can add enrichment to your own life to go along with the hard stuff.


You care for your person and you care for yourself and you care for the good of humans. I wish more people had this idea to just be a good neighbor.


There is an activism to caregiving. There can be some pride and a lot of importance in it too. Life can be incredibly unfair, right up until love comes in at the end in the form of caregiving. There’s a sense of justice until the end and can make sense of a life that would have otherwise been so hard.


For more from BJ, check out the video series The Mechanics of Caregiving with BJ Miller


Dr. BJ Miller is a longtime hospice & palliative medicine physician and educator who has worked in all settings of care: hospital, clinic, residential facility, and home. He has been profiled in The New York Times Magazine, and interviewed on Super Soul Sunday, The Tim Ferriss Show, On Being with Krista Tippett, and has spoken at the Aspen Ideas Festival and around the world. BJ’s latest project, Mettle Health, aims to provide personalized, holistic consultations for any patient, caregiver or clinician who need help navigating the practical, emotional and existential issues that come with serious illness and disability. He also co-authored the book, A Beginner’s Guide to the End, which was released in 2019.


Republished with permission of the copyright.