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

Alzheimer’s paints July 4th differently than in the past

June 30, 2017 By Marilyn Krause

Independence Day to many of us includes patriotic music, cookouts with friends and families and of course, beautiful fireworks. But if you have a loved one with Alzheimer’s disease, you want to consider highly modifying how you celebrate.

Crowds and noises can be upsetting to people with Alzheimer’s and other dementias. The further they are along in their journey, the greater the likelihood that he or she doesn’t know it’s July 4th or what the day represents. As I learned with my wife Elaine as her Alzheimer’s progressed, special days are no longer about our friends, community or how to enjoy a festive gathering. As a caregiver, you have to remember it’s their world now. If you find a happy medium, if you find a way to share a smile or a few kind words, consider the day a fantastic success.

No expectations

When it comes to Alzheimer’s, we must leave expectations at the door. All of the joy we knew as children about the Fourth of July may be gone. Loud, crowded celebrations can make someone with dementia feel overwhelmed. You must watch and listen to your loved one for cues about what makes them happy or uneasy. Read her expressions and if she seems uncomfortable, it’s best for everyone that you kindly excuse yourselves and find a quiet place. Know that he or she may become easily agitated, by no choice of his/her own.

Patriotic music may set you free

We know that music can be a wonderful way to share quality time with a loved one with Alzheimer’s. He or she may hear patriotic songs and start to sing or tap their feet to the beat. Music is, after all, one thing that can bring someone with a dementia back to the present. They may like the colors, but may not remember that red, white and blue are our national hues, and decorations with them may provide a moment of happiness, much like seeing a flower in bloom during a walk.

Forgo bright lights

On the same level, you may think that sparklers are a quieter way to enjoy sights of the day, but like fireworks, they may be upsetting because of the flickering, errant light.

The bottom line is that your loved one with Alzheimer’s no longer has independent days. He or she is physically and emotionally in a different world and for you, the caregiver to enjoy a special day like July 4, you must enter their world, be patient and find celebration in unexpected, simple ways.

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Filed Under: Alzheimer's, Alzheimer's disease, caregiver, dementia, July 4th Tagged With: Alzheimer's, Alzheimer's disease, caregivers, July 4th

“Get in the boat with him” — life with dementia

May 20, 2017 By Marilyn Krause

I’m continually touched by the wonderful comments about My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver and how the book resonates with Alzheimer’s and other dementia caregivers.

Many times, I’m humbled by the stories I hear from those who provide care to a family member. One reader I recently met spoke with great wisdom about how she defused a possible argument with her father, who lives with dementia.

This woman, who is in her 40s, got a call at work one day from her mother. “Come right away,” the mother said, “Dad is very confused and I can’t talk sense to him.” So of course she hurried to her parents’ home.

When she got there, there stood Dad in the living room, extending one arm as though he were casting a fishing line and cranking his other hand as if he were reeling the line back in.

“Whatcha doing, Dad?” the daughter asked.

“Fishing,” he replied.fishing rod

“Whatcha fishing for?” she asked.

“Walleye,” he replied.

“I love walleye. Can I join you?” she asked.

“Sure,” he replied.

So she stood next to him, pretending to fish and carrying on the kind of gentle conversation that you might expect out on the lake. She had joined her father’s world, rather than expecting him to live in hers.

Her mother, meanwhile, was unable to make the connection. “What should I do if he’s like this again?” she asked.

The daughter had the perfect answer: “Get in the boat with him.”

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Filed Under: Alzheimer's, Alzheimer's disease, caregiver, dementia Tagged With: Alzheimer's, Alzheimer's disease, caregivers, dementia

AHCA defeat is a victory for people living with Alzheimer’s and caregivers

April 8, 2017 By Marilyn Krause

Hello all,

On behalf of the millions of people who would be adversely impacted, I’m pleased that the AHCA (American Health Care Act) bill was pulled. To many, services and options for health care would have had detrimental effects on people in their 50s and 60s, many of whom are caregivers to someone with Alzheimer’s and dementia.

Is the current ACA perfect? No, but what was proposed as a replacement would have been catastrophic to people who would lose benefits that allow them to seek healthcare of their own and continue to work if their situations allow.

I hope you’ll join me and continue to better educate and help make life better for those who live with Alzheimer’s and their caregivers. There’s much work to be done.

— Marty

Filed Under: Uncategorized Tagged With: ACA, AHCA, Alzheimer's, caregivers

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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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