The Fearless Caregiver Manifesto

Gary Barg is editor-in-chief of Today's Caregiver magazine. Recently he published The Fearless Caregiver Manifesto. I became energized just reading it. Here it is. 

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The Fearless Caregiver Manifesto By Gary Barg

I will fearlessly assess my personal strengths and weaknesses, work diligently to bolster my weaknesses and to graciously recognize my strengths.

I will fearlessly make my voice be heard with regard to my loved ones care and be a strong ally to those professional caregivers committed to caring for my loved one and a fearless shield against those not committed to caring for my loved one.

I will fearlessly not sign or approve anything I do not understand, and will steadfastly request the information I need until I am satisfied with the explanations.

I will fearlessly ensure that all of the necessary documents are in place in order for my wishes and my loved ones wishes to be met in case of a medical emergency. These will include Durable Medical Powers of Attorney, Wills, Trusts and Living Wills.

I will fearlessly learn all I can about my loved one’s healthcare needs and become an integral member of his or her medical care team.

I will fearlessly seek out other caregivers or care organizations and join an appropriate support group; I realize that there is strength in numbers and will not isolate myself from those who are also caring for their loved ones.

I will fearlessly care for my physical and emotional health as well as I care for my loved one’s, I will recognize the signs of my own exhaustion and depression, and I will allow myself to take respite breaks and to care for myself on a regular basis.

I will fearlessly develop a personal support system of friends and family and remember that others also love my loved one and are willing to help if I let them know what they can do to support my caregiving.

I will fearlessly honor my loved one’s wishes, as I know them to be, unless these wishes endanger their health or mine.

I will fearlessly acknowledge when providing appropriate care for my loved one becomes impossible either because of his or her condition or my own and seek other solutions for my loved one’s caregiving needs.

Books for Caregivers

Here are some newish books you might find helpful. They won Today’s Caregiver magazine’s 2015 Caregiver Friendly award.

The Caregiver's Companion: Caring for
Your Loved One Medically, Financially
and Emotionally While Caring for Yourself
By Carolyn A. Brent, MBA

(January 2015)

Seasons of Caring: Meditations
for Alzheimer's and Dementia Caregivers
By Virginia Biggar (of Clergy Against Alzheimer’s Network)

(December 2014)

Gift of Caregiving
By Beverly Kidder

(November 2013)

Alzheimer’s People Power by Paula Spencer Scott

Sunday’s Parade magazine featured an encouraging article by Paula Spencer Scott: “People Power.” So many of us have encountered frustrations caring for loved ones with Alzheimer’s disease, and some caregivers have taken actions that will benefit the rest of us and future generations of caregivers.

I remember feeling shock and dismay at how my father was treated on the rare occasions when the Alzheimer’s wing staff at the nursing home sent him to the hospital. Hospital staff seemed completely ignorant about the normal disorientation and anxiety of a person with Alzheimer’s in an abnormal environment. They strapped him to a hospital bed, which catapulted his anxiety into panic and set him up for several months of trauma-induced depression. Gary Joseph LeBlanc lobbied his local hospital administrators for six years to adopt a wristband policy. Now a sticker of a purple angel gets put on the wristband of a patient with dementia. The purple angel is an international symbol of Alzheimer’s. Now if we could just increase hospital staff training in the gentle arts of Alzheimer’s care.

Which leads me to another of Paula Spencer Scott’s examples of grassroots efforts along these lines. Kathy Broggy brought together a team of influencers who have made her city “dementia-friendly” by training government and hospital employees how to interact kindly with memory-challenged folks in ways that preserve their dignity and provide the help they need.

“People Power” cites other examples, such as Dan Cohen’s Music & Memory project, which I love the idea of. We instinctively did something like Cohen’s customized music playlist when we gave our father the pleasure of listening to his favorite tunes, which he had ~ handily for us ~ recorded on cassette tapes in pre-dementia years. Dad used to smile dreamily and dance in his wheelchair when he heard his music. Cohen’s donated iPods have made it into more than a thousand memory care facilities.

Paula Spencer Scott includes empathic caregiver support ideas springing up from the creative minds of caregivers who have stepped up into activist roles. “People Power” also has a list of caregiver resources, stories of celebrity involvement, and websites for the grassroots ideas mentioned. To find out where these efforts are happening, to read more than I could say here, and to be encouraged, please read Paula Spencer Scott’s full “People Power” article here.

Paula Spencer Scott is the author of Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers.

The Nearest Doorknob

Caregiver.com's weekly newsletter again features my article, "The Nearest Doorknob," which recounts a time of crisis in my parents' lives and what it meant for me. Sometimes all you can do is throw everything on the nearest doorknob. But when the crisis passes, how do you sort it all out and get back to relative normalcy?

Ignorance is not bliss with a dementia diagnosis

From the Alzheimer's Association today came a Huffington Post article written by William E. Klunk, M.D., Ph.D. Citing the Alzheimer's Association publication 2015 Alzheimer's Disease Facts and Figures, and reflecting on his own patients with dementia, Dr. Klunk encourages doctors to more universally disclose dementia diagnoses. Revealing the truth about dementia diagnoses will ultimately aid research for prevention and cures ~ and help families address the issues they now face. William Klunk's article, For Most People With Alzheimer's, Ignorance Is Not Bliss is an article you'll identify with if your loved one exhibits dementia symptoms.

What will you say at your loved one’s funeral?

I surely don’t wish to be morbid. I didn’t want my father to die, and now I don’t want my mother to die. Plus, I’m sure others are wiser about this joy topic than I. But attending two memorial services for two dear men in two months has given me pause. In both memorial services, joy was palpable. Not just joy that the men are now with Jesus—but also joy in having known them and in telling their stories. Perhaps the Lord will take me next, but if not … When the time comes for my mother’s or my husband’s or a sibling’s memorial service, I want the very best memories to bubble up when I share stories.

I think only two habits assure that what bubbles up ISN’T the time Bambi borrowed my ivory sweater without asking me and spilled mustard on it; the wedding anniversary dinner Fred blew off; or the gnawing suspicion that Mommie Dearest always liked Bambi best.

Habit number one is to walk in forgiveness—not sweep hurts and disappointments under the rug, but talk with God about them and if He prompts, talk with the person about them. Remember all Jesus has forgiven me for, and forgive others.  “… love covers over a multitude of sins.” 1 Peter 4:8

Habit number two is to follow the golden rule of opinions. Think about others as you would have them think about you. I don’t much like it when someone assumes the worst about me. For example, that just because I haven’t finished a project yet, I’m obviously procrastinating or uncaring about a deadline; that if my coat is on the floor of the closet, I (what a slob) must have thrown it there; or that if I haven’t called, I don’t care. I would much rather people simply be excited about my project and if they must worry about its completion, approach me with compassion for any delays I might be facing; figure oh, dear, Jane’s coat must have slid off the hanger she put it on; or be confident I do care and will call. Wouldn’t you rather be given the benefit of the doubt and not judged? Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Philippians 4:8

In caregiving situations, emotions often run high. Your dad with dementia refuses to give up the car keys, and you are scared for his and others’ safety. You’re also frustrated about how to accomplish what you know is the right thing to do at this time. As you proceed with the plan and his car gets sold, your dad experiences grief and possibly shame. Then you feel so very sad for him and his loss of freedom. Misunderstandings are bound to show up somewhere in this emotional mix. You might consider him stubborn; he might think you’re mean. Accusatory words may be spoken. Both habits one and two, mentioned above, would be preferable in this situation. Maybe the car key story could end up being an endearing story related at your dad’s funeral. Maybe not. But at least you’d communicate love to your dad throughout this hard transition.

Caregivers of aging parents face so many emotionally charged situations. Sometimes with dementia, Parkinson’s, and other diseases comes clinical depression. As an older person loses control of bodily functions, he or she may sense despair or a loss of dignity. Adult children with lives of their own must take time to become educated about their parents’ challenges and available resources. Siblings acting from childhood scripts may unwittingly open old wounds and flounder adapting to teamwork in the new normal with Mom and/or Dad. Involved family members may be angry over decisions made by the person with health care power of attorney. If you’re caring for a loved one, you could probably add at least 97 examples of emotional situations you’ve encountered.

Thinking the best of others and forgiving hurts will go a long way toward

• smoothing out what is usually a fairly uneven, rocky path;
• truly making a loving connection with your aging parent;
• and maybe even ending up with more joyous stories to remember and honor Mom and Dad.

How to Choose In-Home Care

Over the years, our family has used three agencies for home health care for both Dad and Mom. In all three cases, we chose agencies based on personal and professional recommendations from people my mother knew in her assisted living community. My mother’s advisers were more experienced than we kids were, and we had good—not perfect—in-home care from all three agencies.

My mother may not use one agency again, however, because the nursing supervisor aggressively, repeatedly, tried to upsell my mother on services she didn’t need. We nicknamed her “the barracuda.” The barracuda’s agency provided good service but will lose our future business. Although frequent supervision of home care workers is important to look for in an agency, a comfortable, open rapport with the supervisor is also critical.

No in-home care is perfect, and you need to be able to communicate and solve problems with the supervisor. If you have time to meet several times with each prospective caregiver supervisor, give yourself that gift. Ask pointed questions about typical problems and how they get solved and—better yet—prevented. If the person who initially comes to your house to sell the agency’s services is not the supervisor, please don’t sign on the dotted line until you have established that the supervisor is someone you can easily work with.

Choosing in-home care is worth careful research. Only recently have I read that the home health care industry is largely unregulated, which places extreme importance on an agency’s internal safeguards. What background checks do they perform on workers? Criminal records in just your state or other states as well? Are they licensed and bonded? What if the worker charges personal items on your credit card? Who is liable if the worker is injured in your home? What if Dad suffers adverse effects because the worker gave him the wrong medication? Who pays if the worker and Mom are in a car accident? What training does the agency give each worker? Ask these questions!

And do check the agency’s website for a list of services provided. If you want light housework, be sure that’s on the list. Even if it is, you might ask the supervisor to expand on the agency’s idea of light housework. Vacuuming and dusting the whole house weekly? Washing windows twice a year? How about cooking? Can you expect the worker to plan meals and list groceries needed? Inquiring about this helps the supervisor choose a worker with initiative and organizational strengths. Your questions should result in a better caregiver match for you.

To start your research, check out AARP’s article, Types of In-Home Care Providers. This will help you know if you need a medical professional, a home health aide, or home care aide. This article discusses paying for care as well. A related article, Choosing an Agency for In-Home Care, gives you additional questions to ask to safeguard your family in this important decision.

Last but not least, I highly recommend using an agency. Resist the temptation to just hire an individual on your own, no matter how nice or highly recommended the person is. If the injury and theft legal liabilities mentioned above are not enough to convince you, consider your liability with the IRS if you fail to get an employer identification number; withhold Medicare, Social Security, and other taxes from your employee’s wages; and pay your portion of payroll taxes.