Tag Archives: Caregivers

“Still Alice” reminds us to remember the challenges facing the caregiver

Guest post by Laura Wayman,  The Dementia Whisperer

In the film Still Alice, Alice Howland is a linguistics professor who endures, at the unusually young age of 50, dementia symptoms caused by a form of young onset Alzheimer’s that runs in her family. Although this type of Alzheimer’s is rare, the dementia symptoms are the same as the more common form of the disease with which more than 5 million older Americans are living.

This movie poignantly portrays Alice as she struggles with the painstaking loss of herself, including her career, individuality, cognition, and connection to the world around her with disturbing swiftness.

Watching the movie, I was primarily transfixed by the impact Alzheimer’s had on those around her as Alice faded into the darkness of dementia, specifically the effect on her three grown-up children (also at risk of the disease, which is 100% passable to offspring) and the emotional devastation experienced by her grieving husband.

Of course, every family and situation is different. If you are a caregiver, you may have been thrust into this caregiving role unexpectedly—without any training or even any encouragement. Perhaps the care is being provided at home, with or without other family or professional in-home support. Or maybe the care is provided in a specialized memory care unit, an assisted living environment, or a skilled nursing facility. Although caregiving is often inspiring and rewarding, it can also be difficult and challenging. And caring for someone with cognitive impairment can be much more difficult than caring for someone with a physical impairment who is full competent mentally and emotionally. The complications of confusion, forgetfulness, and memory loss, and the behaviors that go along with them, can be traumatic for the person with the disease and for the person providing care. Because of the dementia, neither the person involved nor the relationship will ever be the same

This disease is not just destructive to the person diagnosed with Alzheimer’s but also forever alters what family members have come to know, expect, and adore about their loved one over the years: those individual expressions and ways of interacting with which we become lovingly familiar with. The disease takes away pieces of our loved one, sneaking up little by little until family members can no longer recognize the person or the cherished relationship any more. And the toll on these family members is shattering, yet there is no end in sight, no cure, no prevention, and no way to effectively slow it down.

As The Dementia Whisperer, my mission is to provide you and all those who are caring for a loved one with any form of dementia support in the way of education, inspiration and encouragement along this challenging journey of dementia care. We are all so focused on the most horrific illness of our time (and well we should be) and the ruinous effect on those diagnosed with one of the over seventy estimated causes of dementia that we often overlook the long ranging damage inflicted on the family caregiver: the real hero of the “Alzheimer’s Generation.”

Caring for a person with dementia brings with it much more work (and stress) than caring for someone with other types of illnesses. It can be a long journey, and if caregivers do not take time for themselves, they will not be around to take care of the person with dementia. The following is the story I often share about my mother, Peggy, and is a classic example of the devastating effects of caregiver stress. She was thrust into the role of caring for my father, who was diagnosed with Alzheimer’s. When my father’s health began to fail and he began to present memory loss and other signs and symptoms of dementia, my mother stepped into the role of being his full-time caregiver. Some of her friends had been caregivers of spouses with dementia and she had witnessed what a hard and stressful job it was. I offered to help, but my mother insisted she was okay, and would alert me if his condition became unmanageable. However, in spite of this, disaster struck. One night, after two years well into the care journey, my mother and father sat down to dinner together. They were alone in their home. My mother suffered a massive heart attack. My father’s reactions to this emergency were slowed by his dementia, which was far more advanced than anyone realized. By the time help was summoned, my mom was already gone.

If only I had learned how the overwhelming stress of caring for a loved one devastates the primary family caregiver who selflessly takes on too much, refusing to ask for or accept help. This personal experience has driven my passion for education to all caregivers, both family and professional, in the awareness for caring for themselves, along with the tips and tools to assist them in effectively caring for adults with any form of dementia. My vision is to bring light into the darkness of dementia through support, encouragement, education, and hope. My book,  A Loving Approach to Dementia Care, is a special guide, filled with respect, calmness, creativity—and love.

WaymanLaura Wayman holds an associate in arts degree in gerontology and is a certified social services designee. She has over a decade of experience in and a strong dedication to quality aging. She is the director of dementia education and services for Comfort Keepers (Sacramento). the CEO of The Dementia Whisperers, Inc., and a sought-after speaker on issues of aging.

 

 

 

 

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The 36-Hour Day Podcast: suggestions for caregivers

Today is the fourth in a series of brief podcast excerpts from The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. This bestselling title by Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H., is in its fifth edition and is now available in an audio edition.

In this excerpt from Chapter 3, Dr. Rabins offers practical advice and addresses some common frustrations for caregivers, such as solving one problem at a time to avoid feeling overwhelmed, relying on common sense and creativity, and sticking to a predictable schedule. Dr. Rabins emphasizes the importance of getting enough rest and “caring for the caregiver.” Dr. Rabins explains the latest medical understanding of dementia. He describes the types of dementia, when and how the condition progresses, and how diagnosis determines treatment options.

You can find this podcast and the rest of the series of podcasts here.

mace

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Introducing The 36-Hour Day: A Podcast

Today begins the first in a series of brief podcast excerpts from The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. This bestselling title by Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H., is in its fifth edition and is now available in an audio edition.

We begin the series of podcasts with an excerpt from the book’s Introduction and Preface. In it Dr. Rabins describes recent advances in understanding the needs of people with dementia, along with the importance of supporting the families and friends of patients afflicted with Alzheimer dementia. He also offers an overview of all the topics covered in The 36-Hour Day.

You can find the first podcast and the rest of the series of podcasts here.

mace

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Alzheimer’s Action Day

Guest post by Laura Wayman

To bring attention to this widespread and incurable disease, the Alzheimer’s Association has chosen September 21st as Alzheimer’s Action Day. It asks everyone to wear purple to show their support for the search to find a cure. 

Alzheimer’s is the equivalent of a Category 5 hurricane that is barreling towards us, destined to leave a path of emotional and financial destruction, and poised to bankrupt our healthcare system. While the number of people living with Alzheimer’s continues to grow, last year was an eventful year for research and funding related to the disease. Although no scientific breakthroughs have yet occurred, with perseverance, support, and, most of all, hope, I still believe that a cure can and will be found.

However, at this stage we still have no way to stop, prevent, or cure Alzheimer’s, leaving us with the fact that today we can only focus more on positively affecting how people live with it.

Dementia care exacts an immense toll on both the one diagnosed as well as the one who is thrust into the care giving role. Family members caring for loved one with any dementia often lack the time, knowledge, and resources to help in meeting the overwhelming daily challenges along this roller coaster ride I call the dementia care journey.

And so this Saturday, September 21, 2013, on Alzheimer’s Action Day, I encourage you to take individual action in recognition of how Alzheimer’s (or any dementia) severely affects the person providing care—not just the person suffering with the most horrific illness of our time. Let us focus additional attention on these dementia care champions who truly deserve a day when their courage and fortitude are honored without exception.

As a worldwide advocate for the caregiver—the true hero of our Alzheimer’s Generation—I will be proudly wearing purple to show my support. And in keeping with the knowledge that caregivers who are caring for a loved one with dementia need all the assistance they can get,  I also will  be looking for opportunities to provide much needed hands-on support.

My action plan for success is to go directly to the care giver and make specific offers of help, such as the following:

  • “I’m going to the grocery store. What can I pick up for you?”
  • “I’ve got a couple of hours this tomorrow afternoon. May I sit in for you while you run a few errands or take some time for yourself?”
  • “I doubled my famous lasagna recipe so that I could share it with you. I brought enough to last you for several meals.”
  • “Do you need some laundry done? I can pick it up today and bring it back clean tomorrow.”
  • “With all of the falling leaves, I see your front porch and deck need to be swept and your front lawn needs raking. I can take care of that for you.”

You might even have other thoughts of ways to provide care giver help—feel free to send a list of additional ideas in the comments section of this blog. Even sending a card or making a phone call to check in on a caregiver can mean the world to them. Emails and text messages work, too, but often a personal visit is even better. Contact with the outside world can help lift a caregiver’s spirits.

Are you with me? If you know someone who’s caring for a loved one who has Alzheimer’s disease, wear purple and find a way to make a difference and lighten their load—and don’t take a polite “no” for an answer.

WaymanLaura Wayman, also known as The Dementia Whisperer,  is author of A Loving Approach to Dementia Care: Making Meaningful Connections with the Person Who Has Alzheimer’s Disease or Other Dementia or Memory Loss.

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