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I knew I had finally found the right title for my book when an elder I was visiting repeated several times after I said the title – “Isn’t that a great title?” Then she asked me to repeat the title after which she repeated again, “Isn’t that a great title?” When this same exchange repeated itself on my third visit to Maribeth, I realized that she acted like she had never heard the title before in her life. Shortly after leaving Maribeth in her room, her caregiver confided that Maribeth makes her understand the difference between the mind and memory.

It was clear that Maribeth, a retired brilliant college professor turning 90, sharp as tacks, still had a very quick active mind, but she couldn’t remember what was said a minute ago let alone a week ago.

When my Mom would try to identify me, she would often mistake me for my sister’s oldest child. I just could not grasp how she could say that. It made me feel like I was walking in another dimension almost like I was just in a car accident and I didn’t know what the hell happened. As caregivers, we cannot catch up with the invisible distortions of a demented mind. So how do we walk in the shoes of the cognitively impaired?

Since I now work with the bereaved families and friends, I often find myself helping someone through the confused, often traumatic, shocked early raw stages of loss/grief. Clients express numbness often like Novocain – that is slowly wearing off after dental work. Or, sudden breakdowns – waves of grief – when they reach for their loved one’s hand in the morning half-asleep then remember slowly that he/she is dead.

To walk in their shoes we have to experience what it feels like to lose your memory. Education about dementia and bereavement is absolutely necessary to understanding the special communications needed.

“As Long as You Sing, I’ll Dance: The bond not the burden – the blessing of reciprocal caregiving”” is available at www.amazon.com and www.reciprocalcare.com

Press clips at http://www.timesunion.com/default/article/Capturing-rhythm-of-dementia-3836885.php

http://www.troyrecord.com/articles/2012/09/06/news/doc5047810d1a5d4628823491.txt

http://poly.rpi.edu/2012/09/12/caregiving_book_makes_convincing_points/

“I think I have a lily going to sleep,” my mother would say in the early stages of her dementia. Why didn’t I realize then that she was talking about death of her own brain cells due to Alzheimer’s as well as death of her flowers? A long denied stigma especially in the medical world of advanced technologies and interventions, death may become a friend, a destination like home with a welcome mat at the gate spread with peace and hopeful rest.

I wrote “As Long as You Sing, I’ll Dance” to help caregivers help themselves and the people who suffer with illnesses (often hidden as well as terminal) understand and cope with death. Hospice care for the dying goes hand-in-hand with understanding and accepting incurable illnesses and the common mortal factors of our existence.

But how can we finally understand death? There are usually two or more headlines daily announcing or related to death (often the senseless violent and brutal variety). As readers/surfers of these endless morbid headlines we are offered no way to understand and process the tsunami with the morning cup of coffee.

From “As Long as You Sing, I’ll Dance”:

I see in the springtime, luxuriant irises blooming. Again, I will have to let them go to the wind and the changeful weather reciting the words of an old haiku I wrote to some invisible presence years ago:

So many irises

Go home silently with you

Surrendering perfume

I have dealt with my own transience while writing poems that help me stay in the present moment…. We often experience caregiving while letting go. So we must find peaceful ways to let a person know what’s happening and make clear closures.

When caregivers and families find a way to communicate together that enriches both giver and receiver, there is peace in the house. A peaceful understanding of our transitions is a benediction beyond words.

“As Long as You Sing, I’ll Dance” is available at www.amazon.com and www.reciprocalcare.com

This memory returns as I observe the current need for soothing modalities of caregiving for elderly dementia patients as well as for people in the crisis of grieving the loss of loved ones.

Thirty years ago, in the metropolis of New York City, I stood awestruck as I listened to parents and caregivers of many cultural backgrounds singing their children to sleep with lullabies. I realized then that they also wanted permission to relax and connect with their loved ones. As important as putting the child to sleep was the communication it encouraged. I witnessed not only a repertory of stories, songs and images, but also gestures, routines and human interaction. I collected not just music, but a multitude of intimate experiences as adults and children learned from and healed each other.

Recently, the Boston Globe published the results of an investigation on overuse of antipsychotic drugs in nursing homes. An Albany Times Union staff health reporter Cathleen F. Crowley wrote “Too many pills, too high a risk” about this report. She noted that “CMS, the federal agency in charge of Medicare and Medicaid, has launched a nationwide effort to reduce the use of antipsychotics in nursing homes.”

Crowley also interviewed Richard Mollot, executive director of Long Term Care Community Coalition, a New York City-based watchdog group, who is quoted as follows: “There are ways to do it (i.e. reduce the use of antipsychotics in nursing homes). It’s called good dementia care.”

How do you give, find and get good dementia care? Crowley’s article suggests increasing staff (not necessarily RNs), as well as introducing less dangerous drugs and complementary therapies like aromatherapy, music and massage to comfort residents with behavior problems. In my book, As Long as You Sing, I’ll Dance: The bond not the burden – the blessing of reciprocal caregiving, I introduce a new, non-chemical modality of soothing agitated patients.

Christine Knowles who has worked in the field of Psychiatric Nursing and Human Services for over 25 years, wrote in the “Introduction” about how I propose to give, find, and get good dementia care: “When those we love lose the very cognitive principal that animates us and sets us apart as humans we realize we possess another skill, a most divine gift within us – the power to comfort and soothe. In As Long as You Sing, I’ll Dance, Julia Soto Lebentritt enlightens us on this deep and almost mystical ability to comfort others. Her book is part history, part healthcare, part training manual and a comprehensive instruction on how to help heal our own hearts while caretaking others.”

As Long as You Sing, I’ll Dance is a tapestry of stories, illustrations, and creative arts activities that demonstrate both the power of the human voice to calm the agitated mind. “That voice is described” Knowles adds, “through Julia’s fascinating analysis of lullabies. She explores their association with communicating to the distressed whether a tiny baby crying or a confused elderly dementia patient. We see how the lullaby has come full circle. As Long as You Sing, I’ll Dance details that evolution and how we can use it to impact the lives of our loved ones stricken with dementia as well as our selves, worn-out and down by the burden of caretaking.”

Every human being today is aware of the increasing role of caregiving in our lives. This book is a necessary tool as well as a great triumph of the voice of the people who contributed.

Available at www.amazon.com and www.reciprocalcare.com

Link to C. Crowley’s article:  http://www.timesunion.com/default/article/Too-many-pills-too-high-a-risk-3530455.php