Announcement

My Caregiving Pilgrimage

“Cobwebs in my mind,” was Mom’s depiction of the disease. It was her answer to my question of what it felt like to have dementia. That image remains seared into my heart to this day.

Spider Web Photo by Jenny Downing

Spider Web Photo by Jenny Downing

Here are a few more descriptions of others’ experiences living with dementia. Dr. Richard Taylor was a psychologist and founding member of Dementia Alliance International. He passed away in June from cancer. Dr. Taylor described his illness as a veil, a curtain hanging over the window of his world. “Right now, I feel as if I am sitting in my grandmother’s living room, looking at the world through her lace curtains…There are large knots in the curtains, and I cannot see through them.” (Alzheimer’s from the Inside Out)

In her book, Dancing with Dementia, Christine Bryden, dementia survivor, and advocate for the rights of those with dementia, writes about how dementia might look to others. She uses the image of a swan, serene and calm on the water’s surface. However, its legs are

Swan on lake

Swan on lake

paddling a thousand times faster underneath the surface to make things “look okay” to others.

Kate Swaffer, Australian author, another dementia advocate, and a blogger, was diagnosed with semantic dementia while in her forties. She describes her illness this way: “My thoughts fly around inside my head like helium balloons high inside an auditorium.”

 

I was blessed to be the family member who was Mom’s primary caregiver for three years, following Dad’s sudden passing in 2003. In caring for her, I tried to imagine what living with the disease was like. A favorite fictional character of mine, Atticus Finch, says it so well in the book To Kill a Mockingbird: “You never really understand a person until you consider things from his point of view…until you climb inside his skin and walk around in it.”  Like so many of you reading this blog, I was not “just” a care partner. I became Mom’s companion and advocate, attempting to help make her journey through the disease easier, to minimize her suffering as much as possible. My caregiving turned into a pilgrimage, a spiritual journey of the heart and soul, bringing me closer to my parents, my family, and discerning my values in life.

In those years when I took care of Mom, there were not as many resources as there are today. I promised myself that if I ever had the opportunity to share my experiences to assist families like mine, then I would do so. “All sorrows can be born if you tell a story about them,” writes Karen Blixen. My memoir, Elegy for Mom, a Memoir of Family Caregiving, Alzheimer’s, and Devotion, is the result of that promise.

Author Natalie Goldberg advises those who write memoirs: “Write what disturbs you, what you fear, what you have not been willing to speak about. Be willing to be split open.” I attempted to write what I feared and what disturbed me, but also what blessings I discovered along the journey. If this book will help even a few families who read it, then it will have achieved its purpose.

The official publication date of my memoir is November 7, my birthday. My book is now available for purchase through this website. I offer it in tribute to my parents, Sophia and Frank, who continue to inspire me as I travel on this pilgrimage called life.

I wish you peace, patience, compassion, and courage in your caregiving today and everyday!

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I am an admirer of Kate Swaffer and follow her blog, “Creating Life with Words: Inspiration, Love, and Truth.” A few years ago she made a two-minute video of her feelings shortly after being diagnosed with semantic dementia. You can watch her video “Kate Swaffer – Dementia: My Story,” here: https://youtu.be/9ZUyIRq5DAs .

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The inspiring background music to Kate Swaffer’s video is one of my favorite concertos, Rachmaninoff’s Third Concerto. My parents fostered my love of classical music. Here is the great pianist Vladimir Horowitz performing in concert in New York, 1978. The orchestra is under the direction of Zubin Mehta: https://youtu.be/D5mxU_7BTRA.

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Dr. Don Hayen is a retired doctor and former medical director of an HMO. He was diagnosed with Alzheimer’s disease in 2005, at age 71. Over the past two years, Don has coped well with the disease — so well he’s been unable to meet the requirements to take part in clinical trials of experimental Alzheimer’s drugs. But his wife, Jane, noticed his decline. Listen to what he has to say about the importance of getting an early diagnosis: https://youtu.be/uAlkCMfTASQ.

A Warm Welcome From My Family to Yours

My parents in happier times

My parents in happier times

Dear Family Caregivers,

Today is a special day for me for two reasons. First, it is the ninth death anniversary of my beloved mother, Sophia, or as she liked to be called, Sophie. Second, this is the first day of the launch of my website and blog. Welcome!

The photo you see here is my Mom and Dad dancing the polka at my niece’s wedding in July, 2002. As you can tell, they were really having fun! This is how I like to remember them, enjoying life and each other. At the time, Mom was in the early stages of Alzheimer’s. She had been diagnosed with vascular dementia and Alzheimer’s in 2000.

One of my favorite sayings is, “The love of family is life’s greatest blessing.” I am blessed to have been born into a loving, creative, talented family with two sisters, Carol and Marcia, and two brothers, Frank and Mike. They, along with my husband Felix, provided support to me and our parents when Mom and Dad’s health began to fail. I was privileged to be Mom’s primary caregiver for three years after my father passed away suddenly in 2003.

Alzheimer’s affects the whole family. Responsibilities and relationships within the family will change. Disagreements may arise about the care of your loved one. Just knowing that what is happening to you has happened to others, can sometimes make life easier.

It is my experience that families attempt to care for their loved ones with Alzheimer’s for as long as possible, often at great personal sacrifice. I also know of families where this was not the case, and where the pressures of caring for a loved one created conflicts.

I am now retired, but caring for families was my career as a family life educator, professional counselor, and administrator. In fact, I have a passion for working with families, to support and assist them in a variety of circumstances and life stages. Yet, despite my professional training, at times I was overwhelmed with the responsibilities and challenges of caring for Mom. My family discovered a sense of greater closeness and cooperation as we worked together to care for Mom. It was such an honor to care for my folks in their time of need.

What I have to share with you will not be medical or legal advice. Instead, I will offer practical tips, suggestions, and recommendations for YOUR quality of life as a caregiver. I hope to use what I learned to help make life easier for you in your role. I will be calling on members of my family, as well as professionals in the field, to give you their advice, for what it’s worth. I even hope to use some of your creative ideas to share with other readers from time to time. Once in a while I will challenge you to perhaps try something new.

Please follow this blog over the course of the next few months to see if it can be of help in your role. Just click the “sign up” button and become part of my “extended family.” Send me an e-mail, if you’d like, so that I can keep you in my prayers.
I wish you peace, patience, and courage for the journey ahead!

Blog’s Purpose

For many years of her professional career, Vicki was a certified family life educator and counselor. During a fifteen-year period, she designed and facilitated about a hundred innovative workshops and programs geared to help families and individuals.

With this blog, Vicki establishes another opportunity to affirm families, especially those who care for loved ones diagnosed with Alzheimer’s. Her first-hand experience as a caregiver to her elderly parents will be the base of her sharing. Her goal is to help educate, support, affirm, and encourage caregivers, from those just beginning their caregiving journey, to those further along the way. She hopes her website will help you maintain your health and well-being, as well as avoid caregiving burnout.

Vicki will not send out her blog more than twice a month, some months only once. She believes it is her obligation to provide her audience, YOU, with useful, practical information. If you want to receive it, please sign up on the e-mail list. If you know others who could benefit, please tell your friends and family, forward the blog to them, and share Vicki’s articles on social media.

Communication is a two-way relationship. Vicki welcomes and appreciates your feedback and reactions. She would also love to know what you find helpful in your caregiving experience. You can e-mail her at: Vicki@CaregiverFamilies.com.

The Earlier, the Better

Dear Family Caregiver,

Forgetting where one lives, getting lost in traffic, forgetting how to write checks or pay bills — these may be signs of something more serious.

When I was growing up, I used to hear people “joke” that they had Alzheimer’s when they forgot something. As an adult now, I know that Alzheimer’s is NO JOKE or laughing matter. It is a serious neurological disease that leads to cognitive, emotional, and physical decline. Having Alzheimer’s disease is NOT a normal part of aging.

Alzheimer’s is the most common form of dementia, but just one of about eighty-four different kinds of dementia. This disease accounts for sixty to eighty percent of dementia cases. It is also not just a disease of old age. It can appear in people as young as forty or fifty. Scientists tell us that brain changes associated with Alzheimer’s may begin fifteen to twenty or more years before the first symptoms occur, ­even before the person notices a problem.

Financial skills, like writing checks, maintaining bank statements, paying bills, begin to deteriorate in the early stages of Alzheimer’s. The earlier your loved one gets a diagnosis from a professional who specializes in memory disorders, the earlier your family can make interventions. This leads to a better outcome of care for your loved one. It gives you and your loved one time to deal with important planning, like finances and legal matters, durable power of attorney, and his or her wishes for future care. You have time to meet with an elder care attorney, and, if you choose, with a geriatric care manager. You must ensure that you or another family member will have legal authority to act on your loved one’s behalf as their “health care surrogate,” as well as through a properly executed “power of attorney.”

A medical evaluation may also identify other causes for the loss of mental powers that mimic dementia. These other conditions include: alcohol abuse, endocrine imbalance, brain tumors, infection, drug interactions, emotional problems such as depression, and emotional or physical trauma. Unlike Alzheimer’s, some of these conditions may even be cured.

Another good reason to get a diagnosis early on is that the earlier drug therapy can begin, the longer your loved one may retain some memory functions. The Alzheimer’s Association website notes: “Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others.” Depending on age and other health conditions, people diagnosed with Alzheimer’s can survive from four to twenty years.

In the case of my mother, obvious signs of her memory loss began in 1996, when she was seventy-eight years old. Mom was a master at “covering up” some of the early signs of her illness. In hindsight, we suspect the disease actually began years before. She was experiencing TIA’s (transient ischemic attacks) for about two years before her doctor recommended she get a pacemaker in 1996.  She went to a memory disorder clinic for formal testing in 2000, and lived until 2006. I will detail more about TIA’s, vascular dementia, and what Mom’s testing involved in future blogs.

PLEASE don’t hesitate to get a full memory screening, if you or your loved one show symptoms of memory loss. For more detail what those early symptoms are, check the Alzheimer’s Association website: http://www.alz.org. If you need help in what to say to get your loved one to go for testing, call the Alzheimer’s 24/7 HELPLINE at 1-800-272-3900, and speak to a professional who can coach you.

I was once a caregiver, like you. Your experience is unique to you and your family, but hopefully what I have to offer by way of suggestions may be helpful to you. Send me an e-mail, if you’d like, so that I can keep you in my prayers. I wish you peace, patience, and courage for your caregiving journey ahead!