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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 AlzAuthors.com, and a caregiver advocate.

Connect with Susan G.Miller

Website: AlzheimerCaregiverAdvocate.com

Amazon page

AlzAuthors Page

Ambassador and contributor to The Caregiver Connection on Facebook

Categories
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 www.careyearsacademy.com to learn more.