My Two Elaines
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  • “If there’s one thing worse than Alzheimer’s, it’s ignorance of the disease.”  — Marty Schreiber

“Care-heimers” can be as deadly as Alzheimer’s

April 24, 2018 By Marilyn Krause

Many people think of Alzheimer’s as a memory-loss illness and don’t realize that it’s a disease that kills. In fact, it is the sixth-leading cause of death in the U.S., taking more lives annually than breast cancer and prostate cancer combined. It’s the only killer among the top 10 that cannot be prevented, delayed or cured.

Pretty grim, I know.

As I’ve often said, when there’s a diagnosis of Alzheimer’s, there are two patients: the person with the disease and the caregiver.

People caught up in caregiving may become ill themselves because of the strain they are under. They often don’t eat well, exercise, get enough sleep or have time to themselves. I call that illness “care-heimer’s.”

“Care-heimer’s”can be fatal too – but it doesn’t have to be.

"Care-heimer's" may result from caring for someone who has Alzheimers.

Loneliness and isolation, as well as physical stress associated with Alzheimer’s disease can be deadly for caregivers.

When you tell others what you are experiencing, you’ll probably get more hugs and maybe even a chicken casserole. When you go to counseling or a support group, you’ll learn skills to deal with the daily challenges of caring for someone who lives with Alzheimer’s. When you open up, the burden of caregiving may seem a little lighter.

I know what a lonely and depressing place it is when a loved one has Alzheimer’s. Maybe you feel guilty about asking for help – but you shouldn’t. The Alzheimer’s Association (1-800-272-3900 or alz.org) is there for you with free services and support. They’ll help you survive “care-heimer’s.”

Your loved one is counting on you more than ever. Don’t try to go it alone. Don’t become a victim of “care-heimer’s.”

#AlzCaregiving

Filed Under: #AlzCaregiving, Alzheimer's, Alzheimer's Association, Alzheimer's disease, Care-heimer's, caregiver Tagged With: Alzheimer's, Alzheimer's caregiving, Alzheimer's disease, caregiving, Governor, Marty Schreiber

Alzheimer’s caregiving: Never let “perfect” be the enemy of “good”

April 10, 2018 By Marilyn Krause

For me, the headline sums up one of the big challenges of Alzheimer’s caregiving: you think you have to do the job flawlessly.

If you have a Type-A personality, you’re always trying to be perfect. As my Alzheimer’s Association counselor says, you’re uptight until it’s just right.

You might be trying to keep Mom’s house as neat-as-a-pin as she did before she was diagnosed with Alzheimer’s. Maybe you want to make all of your husband’s favorite meals, even when you don’t always have time to cook from scratch. No matter how hard you try, it seems there are never enough hours in the day to do things the way they “should” be done. You feel like a failure.

If you can, try to let go of your guilt. Weigh your aspirations versus your ability to provide a picture-perfect home. Maybe a tidy house isn’t so important today. Maybe your wife would be happier if you took a walk with her instead of making a time-consuming dinner. Try to find the sweet spot.

Sometimes good is good enough.

— #AlzCaregiving —

Filed Under: #AlzCaregiving, Alzheimer's, Alzheimer's Association, Alzheimer's disease, caregiver, guilt Tagged With: Alzheimer's, Alzheimer's disease, caregiver, guilt

#AlzCaregiving – hashtag highlights people in the shadows of Alzheimer’s disease

March 26, 2018 By Marilyn Krause

If you don’t receive our newsletter, we’re officially rolling out #AlzCaregiving …  

Schreiber also announced the revised edition of My Two Elaines 

MILWAUKEE, Wis. —- Alzheimer’s caregivers go about their days in the shadows while others go about their busy lives. Caregivers work to keep a loved one who lives with Alzheimer’s fed, bathed and safe, often forgoing sleep and exercise at the expense of their own health. For all of that, they experience guilt, illness and are often forgotten by friends outside their shrinking world. 

Alzheimer’s caregivers don’t quit when the person for whom they care eventually forgets who they are. When someone else becomes dependent on you, you step in and do what you can to make that person comfortable like author and former governor Marty Schreiber did for his wife Elaine 14 years ago when she was diagnosed with Alzheimer’s disease.

To honor and put a deserved spotlight on Alzheimer’s caregivers, Schreiber has created the hashtag #AlzCaregiving which he uses on social media platforms and beginning this week, encourages others who love and appreciate the more than 16 million Americans who in 2017, provided an estimated 18.4 billion hours of unpaid care for people with Alzheimer’s or other dementias.*

In addition to the #AlzCaregiving mark Schreiber announced the revised edition of the nationally renowned book, My Two Elaines, Learning, Coping, and Surviving as an Alzheimer’s Caregiver.

With his book and nearly 140 presentations in 2017 alone, Schreiber has become a national ambassador and coach for Alzheimer’s caregivers so they don’t have to endure the physically and emotionally painful learning curve that he did.

“We encourage all who know or love an Alzheimer’s caregiver to join the #AlzCaregiving movement by using the hashtag to tell this group that they’re special – that they do a great job despite enormous challenges,” Schreiber said. “Someone who is diagnosed with Alzheimer’s may live more than a decade for what I call a death by a thousand cuts to the person who lives with the disease and the caregiver. It’s not a chicken casserole disease where people deliver meals and a hug because the person you care for is alive albeit, not intellectually. As a result, caregivers are often forgotten and become isolated which can take a long-term toll.”

*Alzheimer’s Association 2018

###

Filed Under: #AlzCaregiving, Alzheimer's, Alzheimer's Association, Alzheimer's disease Tagged With: Alzheimer's, Alzheimer's disease, hashtag, Marty Schreiber

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Net proceeds from the sales of My Two Elaines will be used to promote Alzheimer’s caregiver support programs.

Who Is This Book For?

- Spouses and partners of persons with Alzheimer’s
- Children of persons with Alzheimer’s
- Extended family and friends of persons with Alzheimer’s
- Extended family and friends of caregivers
- Professional caregivers for persons with Alzheimer’s
- Others who come in contact with caregivers and persons with Alzheimer’s, including: nurses, social workers, clergy, elder law attorneys, estate planning attorneys, financial advisers, human resources directors, employers, supervisors and co-workers.

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