11.28.16  DeMystifying Alzheimer’s with Mary Yamin-Garone, A Caregiver’s Changing Role

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Good afternoon. Welcome to Demystifying Alzheimer’s. I’m your hostess Mary Yamin-Garone.

Today’s topic is “A Caregiver’s Changing Role.”

Each year, an estimated 44 million American caregivers provide $257 billion worth of care to their family members and friends. Few are trained—physically or emotionally—to take on roles traditionally performed by nurses and social workers caring for someone with a chronic illness.

Physicians sometimes call family caregivers hidden patients because so many neglect their health and well-being while taking care of others. Caregiving for someone with Alzheimer’s is particularly difficult and it’s critical to get the support you need.

Caregivers are often labeled as victims or sufferers when caring for a loved one. They’re expected to always provide excellent care, never ask for help and be a martyr, regardless of the emotions they’re experiencing. High standards seem designed to create guilt, shame and a potential sense of failure if a caregiver doesn’t meet that criterion. Unfortunately, many believe that caregivers should conform to a cookie-cutter role. This one-size-fits-all view of caregivers overlooks their individuality and that of those they care for.

A caregiver’s role is ever-changing. So how can someone caring for an Alzheimer’s sufferer learn to be comfortable in that role?

An effective caregiver is constantly challenged to keep the lines of communication open with their loved one and concerned family members and friends. Some of the skills required for your job include being able to be attentive to your loved one’s verbal and nonverbal communication; initiate solutions to problems never encountered before and distinguish fact from feelings.

Because Alzheimer’s involuntarily changes an individual’s behavior, caregivers can easily be overwhelmed and have difficulty understanding their loved one’s behavior in a rational way.

Making good decisions calls for self-discipline. It requires caregivers to wait and, while waiting, think about how they’re going to act. Usually, these components of self-discipline occur simultaneously. By reflecting on these components, however, the three styles used most by decision-makers become obvious. They take into consideration the amount of power or control the decision-maker will keep or give away.

When using the first style, caregivers give all the power over to the person for whom they’re caring for. In the second style, the caregiver collaborates with family and friends and makes shared decisions concerning their loved one. In the third style, the caregiver maintains all the power and makes all the decisions.

An effective caregiver will change how much power they’ll retain or relinquish as the Alzheimer’s progresses. A healthy caregiver stops and thinks about what’s best for them and the person they’re caring for before responding or acting. Several questions can help a caregiver decide which style to use.

Use style one if you can answer “Yes” to most of these questions.

  • Can your loved one live independently?
  • Will they be safe and not be in any harm due to forgetfulness or inability to stay focused?
  • Do they want to help and can they follow directions?
  • Are they able to make sound judgments?
  • Are they generally “aware” even during times of forgetfulness?
  • Are they strong-willed and unable to take directions from others?
  • Have they told you that they’re not ready for someone to take care of their needs?
  • Are you able to let go of your opinions and ideas and follow your loved one’s lead?

In the early-to-mild stages of Alzheimer’s, most sufferers will want to be independent and have a caregiver who will act as an advocate and resource. As that caregiver, you can refrain from doing things for someone that they can do for themselves. You also can encourage them to be independent as much as possible.

In style two, you can collaborate with others and make shared decisions. Use this style if you can answer “Yes” to most of these questions.

  • Has a diagnosis of Alzheimer’s been made by a physician with expertise in dementia?
  • Are you becoming less able to meet the basic needs of the person you’re caring for?
  • Do you find yourself becoming overwhelmed, depressed or worried most of the time?
  • Are family members and friends showing concern and asking to be part of the long-term caregiving process?
  • Are you concerned about your loved one’s safety?
  • Has your loved one indicated that they’d like to go places or do things but can’t do so on their own?
  • Is there conflict among your family members regarding the method of care your loved one should receive?

Although a caregiver may be able to answer “Yes” to these questions early on in the progression of the disease, the need to share the decision-making power usually becomes apparent in the moderate stage. Although you’d like your loved one to have complete control over their life, more and more situations are calling for you to become actively involved.

The task of balancing caregiving and your needs will come into greater conflict. Delegating some of the caregiving to other professionals, friends and family members will become a necessity. At this stage, you can no longer allow your loved one to have full power over their life but you don’t assume complete control either.

In style three, the caregiver keeps all the power and simply makes the decisions. Use this style if you can answer “Yes” to most of these questions.

  • Have you been given Durable Power of Attorney—the authority to make decisions for financial matters or health care?
  • Are your loved one’s financial and material resources becoming depleted?
  • Is your loved one unable to comprehend the contents and implications of signing legal documents?
  • Are you, as a caregiver, comfortable taking the lead and making difficult decisions?
  • Is your judgment clear and have you considered the pros and cons of your actions?
  • Can you be counted on to act rationally in times of stress or crises?
  • Have you informed family members, friends and other concerned individuals that you’re carrying out your loved one’s wishes?

This third style is used when your loved one is in the severe stage of Alzheimer’s. You also may use this style in other stages of the disease whenever you’re carrying out wishes your loved one had previously discussed.

There is comfort in knowing that, throughout the progression of the disease, only three interactive styles are possible for a caregiver to take. Understanding and using these three styles properly—which means giving overall control, sharing control and taking the lead—can be invaluable as the challenges of Alzheimer’s become obvious.

If you are a primary caregiver, you may not think anyone else can anticipate or solve your loved one’s physical and emotional problems. It’s important, however, to think of yourself as a member of a team and work cooperatively with others to cope with the escalating demands of caregiving. Otherwise, you’re jeopardizing your health and well-being and your loved one’s care.

That’s all for today. Thanks for listening. I hope this information was helpful.

Join me next time for more Demystifying Alzheimer’s.

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About Lillian Cauldwell

Own and operate an Internet Talk Radio Network for 10 years, 2005 to Present Published Author of Non-Fiction Book, 1996, "Teenagers! A Bewildered Parent's Guide. Published Author of several fiction books, 2006 "Sacred Honor" and 20010 "The Anna Mae Mysteries: The Golden Treasure." Playwright of Theater of the Absurd and Black Comedies. Screenwriter, Black Comedies