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Caregivers Need Care, Too!

Larry James

In Honor of Rev. O. E. "Jack" Jarvis, Larry's father.

My dad was a dedicated caregiver of my mother during her battle with Alzheimer's disease.

He knew about isolation; financial troubles; sleep deprivation. These are just some of the problems facing the more than 50 million Americans who care at home for family members who are disabled, chronically ill or elderly.

Mom would often awake during the night and begin to wander around the house. Once she lit the gas oven, put a pan on to cook something, forgot what she was doing and went back to bed. Dad was lucky that night. He smelled the smoke from the red hot pan. He was always there to assist her back to bed or to sit with her until she was ready to go to bed again.

It's time to acknowledge the contribution made by these selfless individuals. They are an indispensable part of the country's health-care system, however family caregivers don't receive enough recognition or support from government or health officials.

Caring for a loved one with Alzheimer's may be one of the biggest commitments a person can make. Alzheimer's is a disease that can span up to 20 years.

Since no two people experience Alzheimer's disease in the same way, there is no way to predict what your role as caregiver will entail. Responsibilities can include making important legal decisions, managing changes in your loved one's behavior, and helping him or her maintain hygiene.

Family caregivers provide 80 percent of all home-care services in the United States, and that care carries an estimated value of $196 billion annually. That compares to $115 billion for paid home care and nursing-home services combined according to the National Family Caregivers Association.

There is a need for caregivers to reach out for help and for friends, and to ask other family members, employers, communities and governments to help provide assistance. "Pride cometh before a fall."

Caregivers need support too. If you are a caregiver, please ask your family or friends to share with you in your selfless task.

Being a caregiver can be a terrible financial drain. Families providing in-home care for a relative spend more than four times as much on out-of-pocket medical expenses than other families.

There is also the potential for a serious money crisis if the person who requires care was the family's primary breadwinner, or if the person providing care has to stop working, reduce his or her hours or turn down job promotions.

Fortunately my father had the forsight to invest in an assisted living complex many years before he actually needed it.

Many family caregivers suffer health problems that range from depression and sleep deprivation to stress and anxiety, along with back problems from the difficult physical duties involved in the care-giving. My dad was willing to sacrifice his own life to care for my mother.

There's also an impact on relationships with friends and other people outside the home, including their own family. Little did I know that my mother's battle with Alzheimer's was keeping him up at nights and literally draining the life from his body.

Isolation is considered one of the most daunting problems faced by family caregivers themselves. You feel separated from other people, that your problems are not their problems, that they don't understand. And if you're so busy care-giving and working and responding to other family issues, by definition you just don't have a lot of time to interact with others.

There are a lot of emotional demands, especially with somebody who's dealing with somebody with a chronic disease like Alzheimer's disease, where they're losing the ability to take care of themselves and you're literally watching that person lose the essence of who they are.

It's vital that caregivers seek information about their loved one's condition, as well as support groups, resources and assistance programs. For example, if you're caring for someone with Alzheimer's disease, contact your local Alzheimer's Association chapter.

The Internet is good resource to find information and make contact with organizations that can provide advice and assistance.  Alzheimer's Links.

Caregivers also need to ask friends, neighbors and others for help so they can take a break from the strains of looking after a loved one. Caregivers must understand that being able to take time off is essential if they want to continue caring for their family member.

Many times families are very frustrated and angry with what's happening with the disease and the disease process, and I want to encourage families to channel that anger and that frustration into a positive direction.

How can they do that? By getting involved in policy decisions and making state and federal lawmakers aware of the issues confronting family caregivers.

Once a picture of health, I witnessed the wearing down of my father's body as a result of his devotion to my mother. With tears in his eyes, my dad finally confided in me that the strain of being a caregiver for my mother was taking it's toll. By then it was almost too late.

My father died about six months before my mother.

"When you lose a loved one. . . you gain an angel whose name you know."

Oprah Winfrey

If you would like to purchase the books below, click on the book title link or the book cover!
Alzheimer's 911: Help, Hope and Healing for the Caregiver - Frena Gray Davidson - This book is a must-read for absolutely everyone associated with anyone with dementia. With humor, spiritual sophistication, practicality, and twenty-plus years of experience, Frena Gray-Davidson takes the same approach to the inner world of people with dementia that she did as a foreign correspondent in India, Nepal, and China - looking with fresh and curious eyes to understand the people from their perspective, without judgments.

For a FREE copy of The Alzheimer Prayer" by by Frena Gray Davidson, author of "Alzheimer's 911: Help, Hope and Healing for the Caregiver," click here!

Alzheimer's 911: Help, Hope and Healing for the Caregiver

Taking Care of Parents Who Didn't Take Care of You Taking Care of Parents Who Didn't Take Care of You: Making Peace with Aging Parents - Eleanor Cade - This is a guide to taking care of difficult parents, parents who were themselves not very good at parenting. Sympathetic and sensible, it suggests ways to navigate the minefields of aging parents and family dysfunctions and shows how to create new, emotionally healthy roles among the old family scripts.

Larry's Review: Although this book is not specifically about caring for parents with Alzheimer's it is well worth reading if you are a caregiver.

CAPs - Children of Aging Parents is a nonprofit, charitable organization whose mission is to assist the nation's nearly 54 million caregivers of the elderly or chronically ill with reliable information, referrals and support, and to heighten public awareness that the health of the family caregivers is essential to ensure quality care of the nation's growing elderly population.

National Alliance for Caregiving - Dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregiving.

www.EmpireHealthStore.com - Empire Home Care is a health care support service for aging parents, seniors, family members, nurses, caregivers, family members, and those concerned about future disability, sickness, or injury.

Caregiver Directory - Find the best nursing home, assisted living, adult daycare, retirement communities and senior homes in your location (more than 15,000 listed in the U.S. and Canada), share your experience or get help from others.

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The Alzheimers Book Shelf - Featuring a listing of over 100 books about Alzheimers disease, plus a link to nearly 800 more.
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