Alzheimer’s Pocket Reference of Tips and Strategies

Your wife has begun pacing? Your husband has begun having toilet accidents? Your mother wants to know why she can’t drive? And keeps forgetting your answer? Your father refuses to eat? And you don’t have time right now to read a whole book on dementia-related behaviors? I have just the handy help for you: Pocket Reference of Tips and Strategies. The pocket-sized flip chart shown here comes with a Coach Broyles’ Playbook for Alzheimer’s Caregivers, which you can buy here.

I have never seen the playbook. My mother got the flip chart somewhere and gave it to me after my dad died. I’m sure the whole playbook is an excellent resource from the Alzheimer’s Association, but I can only rave about the pocket guide’s kind, clever, protective, and simple solutions to loving someone with dementia.

I Heart Caregivers

AARP collects stories of real caregivers. Read some, or share yours, at aarp.org/iheartcaregivers. Be encouraged, or encourage others.

And every day, please know you make a difference!

Caring for Mom and Dad on PBS

PBS has already aired the documentary, Caring for Mom and Dad, narrated by Meryl Streep, but you can view it here.

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. 

I encourage you to go to www.caregiver.com to sign up for their e-newsletter, which contains some of the most practical caregiving advice I've read and creates a community of caregivers. You can also subscribe to the magazine at that URL and get handy tips.

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?