Alzheimer's disease Archives - My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver Gov. Martin J. Schreiber with Cathy Breitenbucher

Independence comes in many forms for Alzheimer’s caregivers

July 3, 2018 By Marilyn Krause

There are times when we crave time to ourselves. We need our independence — to decide whether we want to be alone or be with others.

Your loved one has Alzheimer’s disease and it’s like robbers are stealing her identity — her voice — piece by piece. The silence becomes deafening for a caregiver who desperately wants to share conversation, movies or music. When you want it least, you have independence — solitude. Maybe even to the point of isolation.

In the midst of months – maybe years – of daily responsibilities, caregivers need time to reconnect with people who have been important in their lives or need time to be alone. The Fourth of July is when many come together for cookouts, maybe enjoy a lake breeze and top off the day with fireworks. Hopefully you can include your caregiver friends in your Independence Day plans, or offer to spend time with a person who lives with dementia so the caregiver may take time for him/herself.

Enjoy a safe and happy July 4th.

#AlzCaregiving#

“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

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 —

#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

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I thought I was a healthy Alzheimer’s caregiver. I was wrong.

February 7, 2018 By Marilyn Krause

I always tell caregivers they need to carve out respite time for themselves. Do I listen to my own advice? Not always.

These days, I’m more of a care manager than a caregiver. My wife Elaine has lived in a memory care setting for 2½ years. I visit her every day that I’m in town and can see she receives excellent care. Knowing that the staff handles Elaine’s personal needs in such a skillful and patient way, you’d think my mind would be relaxed.

A couple of weeks ago, I landed in the hospital with intense intestinal pain. Don’t worry, I’m OK now. Doctors made sure of that, ordering a full battery of tests and having me monitored around the clock. For four days, I was tethered to tubes that made leaving the hospital out of the question. So, I wasn’t able to visit Elaine. Out of necessity, I was completely hands-off in terms of her care. On the work front, my office staff handled countless details for me. They definitely had my back.

Well-rested. In a hospital. Go figure.

The most interesting thing happened while I was in the hospital. I slept more – and better — than I had in many nights. Therapists forced me to get out of bed and move; the layout of the hospital allowed me to walk a lot. By the third day, dragging my IV pole, I was able to walk a mile at one time. I hadn’t walked that far in a long time. My meals were nutritious and brought to me on a regular schedule. It was almost like a spa vacation. Got to admit, when I’m home on my own or traveling around for presentations, I rarely exercise and I don’t always eat healthy.

Anxiety returns

Once the doctor told me I was cleared to go home, my thinking shifted quickly to Elaine and how wonderful it would be to see her again. After all, this was the longest I’d gone without seeing her since she moved to assisted living. The day after I was discharged, I eagerly drove to the memory care facility. But something unexpected happened when I walked into the building. Almost instantly, I felt … different. That well-rested, well-fed fellow couldn’t walk 30 yards down the hall before feeling tired and sad.

Later that day, I called my nurse and described what had happened. Her theory matched my own fear: my body’s response was rooted in anxiety. Ugly, unwelcome anxiety.

I long ago accepted the fact that Alzheimer’s is slowly killing my wife. I thought I was doing a decent job managing my health, but obviously that wasn’t the case. Meeting with fellow caregivers energizes me, but that’s not enough. I’ve got to build some respite time into my calendar. I’ve got to do better. With the help of my Alzheimer’s Association counselor and the health experts, I’ll get there.

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When a loved one has Alzheimer’s, is it worth visiting?

September 19, 2017 By Marilyn Krause

As Elaine’s Alzheimer’s has progressed, her world has become smaller and smaller. Before Alzheimer’s, Elaine was a voracious reader and lively conversationalist; my Second Elaine is neither of those things. She used to enjoy going to plays and performances, and loved putting together photo albums; my Second Elaine does none of that.

When thinking about the world of a person with dementia, I often use the analogy of an inverted funnel. Someone with a healthy brain can put the narrow end of a funnel up to their eye and look up, viewing the world through the large end of the funnel. You see the blueness of the sky and the hope of tomorrow. A person with dementia, meanwhile, experiences that funnel flipping around – he or she is now looking through the wide end of the funnel and sees only what is visible through the narrow end.

Someone in the late stages of Alzheimer’s does not care or understand what happened five minutes ago. They don’t care or understand what’s going to happen five minutes from now.

A fellow caregiver recently posed an interesting question during one of our presentations. Given the limited understanding of a person with dementia, he asked, is it even worthwhile to go out to dinner, listen to music, take a walk?

My answer is, yes – absolutely! What else can I give my wife besides the “right now” kind of happiness? Watch for what kinds of things bring a smile to your loved one’s face. Maybe it’s a dish of ice cream, a car ride or coloring a picture. For us, oftentimes it’s looking at the trees that shade the courtyard of her memory care assisted living facility. I don’t think Elaine could enjoy the view any more if we were looking out at the Swiss Alps. I aim to create moments of joy. It’s worth it, even when those moments are fleeting.

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Travels with Alzheimer’s Caregiver-in-Chief

August 8, 2017 By Marilyn Krause

This post is authored by Cathy Breitenbucher, an award-winning writer and Marty Schreiber’s co-author of My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver.

Cathy Breitenbucher co-authored “My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver” with Marty Schreiber.

If you’ve ever watched “American Pickers,” you have an idea what it’s like to travel with Marty Schreiber. I’m Frank, the more serious one who always watches the clock to make sure we’re not running late; and he’s Mike, often joking and never hesitating to take a detour so he can enjoy the view from a country road or a cruise down a small-town Main St.

We added more than 700 miles of “windshield time” during a recent tour of northern Wisconsin and Michigan’s Upper Peninsula where Marty spoke with Alzheimer’s caregivers and shared his story. That puts us at nearly 5,000 miles in 2017.

Every event, invariably, we pull out of town saying, “Those people in (whatever city) were so nice.” You feel for them, realizing they’ve been dealt a bad hand. And almost worse, you hear them fail to take credit for the work they do out of love for their family member. Alzheimer’s caregivers do their very best under almost impossible circumstances and should never feel guilty that they aren’t doing more.

Caregivers everywhere worry about whether to move Mom or Dad into assisted living. They’re worried – rightfully so – about paying for a nursing home. One person we met said a loved one was being duped out of his savings by various companies, but his family was unable to get the legal authority to stop him. Sadly, we couldn’t offer any real help, just our concern.

And so we go on to our next stops, hoping we can offer Alzheimer’s caregivers a little advice, some humor, and a bit of hope that they somehow can get through this.

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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 4^th 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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“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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Alzheimer’s taught me anticipatory grief

May 1, 2017 By Marilyn Krause

I used to think there was one kind of grief: the kind a person experiences when a loved one passes away. Now I know better.

As an Alzheimer’s caregiver for more than 10 years, I’ve learned about “anticipatory grief.” It’s that sadness you feel when you know a loss is coming. Most times, it’s associated with the loss of experiences. Early in Elaine’s illness, I couldn’t help but think of all the shared events we would miss – a European vacation, anniversary celebrations, our grandchildrens’ graduations and weddings. I’ve called Alzheimer’s disease “death by a thousand cuts,” which makes anticipatory grief something caregivers live with for several years.

Elaine and Marty Schreiber (front) enjoy support from their family.

Elaine, pictured earlier in her Alzheimer’s diagnosis, and Marty Schreiber, enjoy a supportive family.

At this point in my wife’s Alzheimer’s, anticipatory grief is giving way to what I’ve heard called “unconventional grief,” that is, grieving someone who is still alive. I’m grieving for the loss of a person. My First Elaine is gone; she is still here in terms of a physical body, but in essence, she has left this world. I’m a widower who still has a wife, and there was no funeral to help me process this loss. I work through my grief every single day.

I’ve come to appreciate how far we’ve come to understand grief and grieving through time. Thank heaven we no longer follow Victorian era practices, with widows expected to dress in mourning clothing for two years.

To cope as an Alzheimer’s caregiver, you must give yourself permission to grieve. Surviving the experience may come in different ways, at different times. Seek others to talk to who are in the same situation. Get counseling at the Alzheimer’s Association. Be open to finding joy in your Second Elaine. Accept that you deserve to find joy in life, period.

If you know an Alzheimer’s caregiver, try to understand that your friend or relative’s emotions are in turmoil. Acknowledge the pain the caregiver is experiencing. Talk about the good times. Try to be a good listener.

Grieving is an ongoing process, not a limited-time event, especially when it comes to Alzheimer’s disease.

Thank you to the American Academy of Bereavement for providing helpful suggestions.

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