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

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

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

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

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

Alzheimer’s taught me anticipatory grief

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