AlzAuthors: Marie Marley

Carolyn is an 85-year-old retired school teacher living independently in Houston, Texas. She is beginning to need assistance managing her affairs and caring for herself. She’s having problems with bathing, dressing, cooking, getting to doctor appointments, doing her shopping and paying her bills. Her only child, Ralph, lives in Dayton, Ohio. He worries about his mother constantly and wishes he lived closer so he could help her out. He knows he needs to take action; he just doesn’t know what to do.

Martha is another 85-year-old whose needs are different from those of Carolyn. Martha’s memory and mental functioning are declining at an alarming rate, and she’s received a diagnosis of Alzheimer’s. It’s obvious that she isn’t safe living on her own. Her daughter, Susan, who lives nearby, hired a home-care company to help care for her mother. But Martha hated the arrangement and fired the caregiver the company had sent.

Susan knows her mom needs to be placed in a facility, but doesn’t know what level of care would be needed, and she isn’t familiar with any of the facilities in her area. To make things worse, Martha is adamantly refusing to move. Susan has simply reached the end of her rope.

Ralph and Susan have something important in common. Namely, both could significantly benefit from the assistance of an aging life care professional. Aging life care is a holistic, client-centered approach to caring for older adults. A professional in this field—founded in 1985—guides, advocates, and serves as a resource to families caring for an older relative.

You may need an aging life care professional if:

• The person you are caring for has limited or no family support.
• Your family has just become involved with helping the individual and needs direction about available services.
• The person you are caring for has multiple medical or psychological issues.
• The person you are caring for is unable to live safely in his/her current environment.
• Your family is either “burned out” or confused about care solutions.
• Your family has limited time and/or expertise in dealing with your loved one’s chronic care needs.
• Your family is at odds regarding care decisions.
• The person you are caring for is not pleased with current care providers and requires advocacy.
• The person you are caring for is confused about his/her own financial and/or legal situation.
• Your family needs education and/or direction in dealing with behaviors associated with dementia.

Aging life care professionals are engaged to assist in a variety of areas, such as:

• Housing – helping families evaluate and select appropriate level of housing or residential options.
• Home care services – determining types of services that are right for a client and assisting the family to engage and monitor those services.
• Medical management – attending doctor appointments, facilitating communication between doctor, client, and family, and, if appropriate, monitoring the client’s adherence to medical orders and instructions.
• Communication – keeping family members and professionals informed as to the well-being and changing needs of the client.
• Social activities – providing opportunity for client to engage in social, recreational, or cultural activities that enrich their quality of life.
• Legal – referring to or consulting with an elder law attorney; providing expert opinion for courts
• Financial – may include reviewing or overseeing bill paying or consulting with an accountant.
• Entitlements – providing information on federal and state entitlements; connecting families to local programs
• Safety and security – monitoring the client at home; recommending technologies to add to security or safety; observing changes and potential risks of exploitation or abuse.

Aging life care professionals typically charge between $100 and $200 per hour, although the fee may rise to $250 per hour in some large metropolitan areas. Medicare does not cover the cost but some long-term care insurance companies do. To find an aging life care professional in your area, go to AgingLifeCare.org or call the Aging Life Care Association at 520-881-8008.

About the author: 

Marie Marley is co-author of Finding Joy in Alzheimer's: New Hope for Caregivers and author of the award-winning book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. She also hosts her own blog and publishes a twice-monthly newsletter dealing for people caring for a loved one with Alzheimer’s. The newsletter and blog can be accessed through her website (ComeBackEarlyToday.com), which contains a wealth of helpful information for Alzheimer’s caregivers. Marie is the author of hundreds of articles on Alzheimer’s caregiving and is a regular contributor to the Huffington Post and the Alzheimer’s Reading Room.

This post first appeared on MariaShriver.com. 

AlzAuthors: Marcee Corn & Susan McCullock - Unclaimed Baggage

by Marcee Corn and Susan McCulloch 

 

Unclaimed Baggage is our personal story about Martha, our mother, and her journey through life and ultimately through Alzheimer’s disease. Our account is told in snippets of anecdotes from our mother’s perspective as well as other family members’ perspectives.  

 

As we begin our narrative, we are driving our mother to the Assisted Living Facility that we collectively agreed was where she needed to be.  

 

Excerpt from Unclaimed Baggage: 

 

Alzheimer’s leaps off the neatly painted sign, as if in neon, beckoning the driver to come on in. 

 

Upon seeing that sign fastened to the front of the building, we feel like traitors, like terrible daughters, and worse, uncaring caregivers. As we enter the lobby Mom is distracted by the colorful parrot in the cage in the corner. She walks the few steps over to him leaving us, and the Assisted Living facility behind, as she is transported back to Bush Gardens, Florida in the year 1963.  

 

She believes this caged parrot is the same one seen all those years ago. In her mind she recalls a memory of when she lined up the five of us to take a family vacation photo. Leslie, the youngest, won’t cooperate and the brightly colored parrot sitting on Bob’s shoulder won’t either.  Suddenly the bird bends his head slowly downward and snaps off her husband’s collar button. The whole family laughs as Bob swooshes the squawking bird with his hand.  To our dismay, Martha laughs aloud in the quiet lobby. 

  

 

Unclaimed Baggage is a love story as it spans over generations weaving back and forth over eras. Our tale travels through young Martha’s girlhood, through 2 wars, over changing decades, right up until the present as she faces and ultimately dies from Alzheimer’s.  

 

It is the story of a real life romance between Martha and Bob, our father. Portions of our story take place in the 1940s world of elevator boys and stolen glances between a young officer and a budding artist in NYC during WWII.  

 

It is also a love story of three daughters who become the caregivers of their mother, after the death of their father. One of the most heart-wrenching things we had to do was to stop calling her Mom changing that familiar name to Martha, the only name she knew. 

 

Ultimately, it is a love story of God’s love for us, his children. 

 

We wrote Unclaimed Baggage originally for our children and grandchildren, so they could know their Grandmother. It turned out to be so much more than that. Ours is a timeless American story, but a universal one as well, as most of us know of someone or have had first hand experience with Alzheimer’s.  

 

We have had an unbelievable response to our book. When we speak to groups, sharing our story of hope, we are sure to say that we are not experts on this disease. But we do have a unique story to tell.  

 

We have found that Unclaimed Baggage, with its positive twist on a devastating disease, has brought hope to our readers.  

 

As one reader says, “It is a story of heart, hope and courage and sometimes hopelessness, like life itself. “  

 

Connect with Marcee Corn and Susan McCulloch

 

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Email: unclaimedbaggagethebook@gmail.com  

Twitter: @marceecorn 

 

AlzAuthors: Picture Book Author Arthur Levine

by Arthur Levine

Last night I lit a Yahrzeit candle for my father, who’s been gone for two years. And I decided, at the last second, that rather than sing a traditional prayer, I’d just sing a few lines from one of his favorite Broadway tunes. It made me smile in a moment that was otherwise sad.

Like many, my father’s struggle with Alzheimer’s was a long and gradual one, but that did not make it easier for him, and it didn’t make it easier for all of the people who loved him. We had to say goodbye over and over as parts of who he had been vanished like color from a beloved garment, never to be restored.

It was toward the end of my father’s struggle (though even then, the end was agonizingly attenuated) that I wrote WHAT A BEAUTIFUL MORNING, a picture book about a boy and his grandfather (and grandmother!) coping as best they can with the changes forced upon them. I had been visiting my parents every summer on the island where they had a home. It was a special place for all of us.

When my son was a baby, those two-week visits were a blessed reprieve, as my parents would joyfully babysit while my husband and I snuck away for an hour or two to play tennis or go to a movie. And as my son grew, so did his love for these visits. He spent precious unstructured time following his grandfather around and helping with tasks like cleaning up the garden, raking sticks, riding to the garbage dump!

But now everything had changed. My son was still helping, but he was helping my father find his way around his own home. He was making sure grandpa got to the dinner table. It was crushing to him. And confusing.

Now I used my two-hour “break” not to relinquish childcare, but to cope with my own emotions about my father’s struggle, so I could come back and be helpful to my mother, and to my son. So I wrote about my dad and how much he loved to sing. I wrote about the very real way we could still – even as other means of communication had vanished! – sing songs together, how my father’s face would light up as all the lyrics of a complicated song would come flowing out of him. In those few moments of music-making, it felt like we were having a conversation again. And we were.

A dear friend who had been through this same loss advised me that, rather than focus on the long road of loss ahead, I should try to celebrate each individual day in the present knowing and appreciating that it was the best my dad would ever be. I found that awareness and appreciation in music. And I hope reading WHAT A BEAUTIFUL MORNING will bring a moment of comfort to other families as well.

Arthur Levine is the publisher of Arthur A. Levine Books at Scholastic, whose books include the Harry Potter series. He is the author, most recently, of the picture book “What a Beautiful Morning,” about a family dealing with Alzheimer’s disease.

AlzAuthors: Karen Malena, Love Woven in Time

by Karen Malena
 

Love in the senior years: A true inspiration to me. My parents are married over sixty years as of this writing. Sixty years of ups and downs, good health and bad, happiness and sadness. But one thing remains: a steadfast love. It is this love that inspired me to write; theirs, and another couple: my husband’s elderly aunt and uncle.

You see, when I was a little girl, my mother suffered from mental illness. There were times in her delusion when she barely knew who she was, much like Alzheimer’s. It wasn’t easy and she was hospitalized many times. That is why her recent diagnosis of dementia has been very difficult to take. But as I saw when I was a child, my father puts all of my mother’s needs first. At complete disregard for his own comfort, he would do anything for Mom. He’s remained by her side, loyal, loving, respectful, treating her as if she’s the young beauty he first married so long ago.

I saw another great love. Louise, my husband’s aunt, had a stroke several years back and was hospitalized and eventually moved into a nursing home. Her husband, Hubert, took the time every single day driving to see her, helping her to eat, talking with her even though she couldn’t speak well, and making sure every need of hers was met. There came a time he couldn’t drive any longer, and he would wait as the senior bus picked him up, not missing one day with his wife. When he suffered his own health crisis, he ended up in the same care facility. Though they weren’t in the same room, Uncle Hubert would wheel himself down the hall to spend time with his beloved each and every day.

Hubert and Louise didn’t have many family members, so I became a regular visitor of theirs. I watched as love appeared to grow even stronger as Hubert sat by his wife’s side, gazing upon her as if she was the most beautiful woman he’d ever seen, and talking to her as if she was the only person in the world who mattered.

It was then that a story began forming in my mind. What if an older couple actually met for the first time in an assisted living center? What if a warm friendship was forged, and eventually led to love? My book Love Woven in Time was born.

It chronicles the lives of Harry and Rose, two people who meet in the golden years, both with their own sets of challenges, but the main one being Harry’s onset of dementia. It was carefully written with the help of a dementia coach and author, Carol Howell, and with thoughts of my parents and my husband’s uncle and aunt, giving a story that is tender, believable, and written from the heart.

Though Hubert and Louise have passed, I am blessed to still have my parents. I continue to watch, grow, and learn from them about true love. A bond that cannot be broken. Even with the ravages of time, age, and memory loss.

Connect with Karen Malena

 

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