NEW BOOK: Waking Up In the Great Recession Mormon Desert

Going through a Great Recession crisis in addition to family caregiving has got to be so intense... I don't want to think about it! But the one thing that makes it better is banding together in family and community. I'm announcing my latest book today. It's not about family caregiving or Alzheimer's Disease or dementia at all! But it IS about the great importance of going beyond differences to band together to heal our deepest, most critical concerns.

The book is called WAKING UP IN THE GREAT RECESSION MORMON DESERT and people who reviewed an advance copy of it have given it some wonderful reviews. For example, David Spangler who was the previous director of Findhorn and has sometimes been called the father of the New Age movement had this to say:

This book is a winner. It has everything a good book should have: suspense, excitement, pathos, joy, laughter—-lots of laughter—and great characters you care about and can genuinely root for! And it's non-fiction! But what it has most is love and wisdom. Profound, heart-opening love and wisdom. It is hands down one of the best books on spirituality and its role in meeting the challenges of our time that I have read. And did I say that it's funny, too? Be good to yourself and read this book. Be good to your friends and buy them a copy. ~ David Spangler, author of FACING THE FUTURE and SUBTLE WORLDS: AN EXPLORER'S FIELD NOTES.

My partner Paul and I are the "great characters", by the way. The book is a memoir and it follows our path from our original home in the beautiful New Age, ultra-progressive town of Santa Cruz, CA to a predominantly ultra-conservative Republican Mormon community in the eastern Arizona high desert. The timing is immediately after the election of Barack Obama and the passage of Proposition 8 (the law repealing gay marriage in California). The result is at turns poignant and funny and eventually leads to a spiritual wake-up call that shows the importance of connecting the political and the personal in our task of developing spiritually on the planet.

Read more about it, read excerpts and reviews,  and get your copy here.

It's available as an inexpensive instant pdf download or as an autographed physical book, both directly from us. It is also available on the Kindle and soon other places as well.

Being Still, Letting Go

Painting © Copyright 2009 Sheryl Karas

When life is chaotic it can feel extremely difficult to find a calm center to relax into and let go. I think this painting I did recently epitomizes that. Too much happening to feel "meditative". But it is a mandala. Breathe in and focus on the very center.

Or close your eyes and begin again.

The mandala above is a challenging place to begin a focused meditation practice. I can't do the practice I suggested above with this piece myself. But that's why I chose it for this article. Living with someone with dementia is like that. The chaotic disrupting influence of the dementia patient's fractured thought process and the worry, frustration and seemingly endless series of problems creates a backdrop that screams for attention even when you find a few minutes of "peace" just for yourself.

Some things in a caregiving situation take a lot of time to work through. Throughout my book I offer lots of suggestions caregivers can do to make things go better. But what about those things that can't be improved? You know what I'm referring to: the endless repeating questions that you just answered 10 minutes ago, finding the roll of tin foil in the refrigerator along with the unwrapped meat that mom insisted on putting away, the obsessive paranoia, the accusations that someone broke in and stole the purse you know will someday show up someplace weird. The list gets longer all the time and no well-meaning guidebook or caregiving professional has an answer for how to deal with it all.

It's natural to obsess on a situation that is this upsetting. And if there IS something you're overlooking -- maybe Mom's medications need to be adjusted? -- it's wise to get a professional opinion.

But, I know, sometimes you've done everything you can think of to do and the craziness doesn't end. Today I had an insight into this. Just going away, closing the door and obsessing on how much you hate the situation you're in does NOT make it better. :-) Yeah, it was an insight. . .  or rather a reminder to be in the present moment. In this perfect moment in time there is no dementia patient in the room. In this perfect moment there is nothing going on that can't wait until someone (not necessarily me) returns.

By really being in the present, I can breathe and return to a feeling of peace myself.

Everyone Has Value, Just Breathing

An old counselor friend of mine from India, who I lost touch with years ago when she moved back, had an enormous impact on the people she worked with when she lived in the United States. Her insight into the U.S. national psyche is that most people she met didn't feel good about themselves. Even worse, this was amplified if they were sick, disabled, unemployed or struggling. She took to asking her clients to lie down while she sat beside them and held their hands. She would tell them to just breathe and when they would protest that they weren't getting "enough work done" in their session with her she'd tell them to think of themselves as a young infant -- a newborn, unable to move or talk, or even lift their own head. And she would say

"Did your mama love you any less for that? No! She was so excited to have you, to welcome you into her life, to just hold you and look at you and smell you! She saw you as a perfect miracle when you were just born and unable to do anything but lie there, breathing. And she was thankful for that."

"Just breathe. You are of value to the world just being here. You are a miracle. You are loveable. You are welcome on this planet. You belong."

"Think of yourself as that little newborn. You are still that same child. And nothing changes that except what you have been taught to believe."

In this video is a graphic example of how valuable a being can be just lying there breathing. It's a tribute to Baxter, a dog who brought joy and comfort to people at the end of their lives even though he couldn't do anything anymore himself but lie in their beds, be held by them and lick their faces.

He died on Friday, October 16, on my birthday. I didn't know him personally but I know he is deeply missed.

Gratefulness and Family Caregiving

Is the glass half full or half empty? It depends on what you choose to focus on. When times get rough you can't ignore the empty part because that's information about what needs to change, eventually, as time goes on. But neither should you ignore what you have left because that's what makes life worthwhile. Who do you love? Who has loved you? Do you have a roof over your head? If things get really bad will you have the family, friends and community support to survive?

Most of my clients are very focussed on what they've lost, as is normal and natural when life is filled with loss and change. But I had a conversation with a friend yesterday that changed my perspective. He's been given a death sentence -- he was diagnosed with an illness that, theoretically, at least, only gives him a few months to a year to live. Of course, he wants to beat those odds and live a long healthy life but he knows -- like all of us -- that he could die in his sleep at any time. He feels healthy enough now so he was trying to decide what to do with his life. Should he take on a long-term commitment to make a particular dream come true? What if he doesn't have enough time left to accomplish his aims? Or should he take the next flight out to the Bahamas and live the rest of his life on a boat in the Caribbean, fishing, drinking rum, with his feet up in a hammock? The answer, for him, was to live with the paradox. To live as if each day was his last while continuing to do the long-term things that those of us who think we have forever would choose. On his deathbed he didn't want to think that he could have accomplished his dream but threw the opportunity away because he was so afraid he might die. AND he wants to enjoy the time he has left. He wants to be grateful for the time he has left and use that time to work towards his dearest life dreams.

That's the paradox we live with as caregivers, too. Yes, we want things to be different and need to plan for and make changes as time goes on. AND we need to find things to appreciate every day because every day COULD be our last. What do you appreciate within the context of being a family caregiver?

This blog is an excerpt from The Spiritual Journey of Family Caregiving.

Introduction

For five years, ending in 2005, I worked as a family caregiving consultant for the Alzheimer’s Association and, more recently, for Del Mar Caregiver Resource Center, a state-supported nonprofit sponsored by Health Projects Center in Santa Cruz, CA. My duties remained the same in both agencies: to provide support for people taking care of an adult family member with neurological impairment through one-on-one consultation, support groups, workshops and special programs. Alzheimer’s Disease was the most common ailment but we also commonly met with families coping with Parkinson’s Disease, stroke, MS, ALS, Huntington’s Disease, traumatic brain injuries, and a number of other lesser known but equally traumatic dementia-causing illnesses.

While there were specific issues related to each disease the impact on the families was surprisingly similar: one or more people became the primary caregiver for a person who didn’t get better or progressively needed more help and care. In the case of age-related dementias such as Alzheimer’s Disease, Parkinson’s Disease and stroke the person would eventually need 24-hour care and, unless that care was divided among several family members or provided by professionals, somebody close to the patient would pay an extraordinarily high price.

In the not too distant past people tended to live in extended family groups and small interrelated communities where women could expect to be taken care of while they stayed at home and took care of the family unit. Today, people are more likely to live in isolated family units and, because of sky-rocketing divorce rates, those units are headed by a single parent more than ever before. Furthermore, families are smaller than they used to be, adult children often move away to other parts of the country, and women not only want to work outside the home, they frequently have to do so to make ends meet. That means families have far fewer people available to take care of sick and elderly loved ones at a time when advances in medical technology and healthcare keep people alive years longer with debilitating conditions they would have died from in the past. Too often the money to pay for services runs out long before the patient’s body and both the know-how and the ability to provide adequate levels of long-term care is often sorely lacking.

The vast majority of people take the job on without using help and services outside the family at all. After all, it’s family! We’re trained to think that, despite the changes our society has created, that we’re supposed to do it all without help and without complaint. Families take care of their own! The toll this takes is enormous. According to the Journal of the American Medical Association, among people who are 65 and older, those who are caregiving have a 63% higher mortality rate than those who are not caregiving. Caregivers of all ages report deteriorating health and high rates of depression and frequently find it challenging to take time for and pay for their own care due to the economic burden this situation creates.
There were many days in my work with family caregivers when I wondered how they did it at all. The answer became clear over time: they can’t do it alone. The successful ones ask for help and they find it in each other, in other family members, by using social services, paying for services, joining support groups, joining online communities of support, in books, and through prayer and spiritual sources of support. Preferably, all of the above.

The spiritual part was a surprise to me. Everyone needed physical help on their caregiving journey but those who were also buoyed up emotionally through their relationship with God or those who saw their caregiving as a spiritual journey (even if they had no specific religious affiliation) held on and even flourished in the most difficult situations I ever saw. They were more likely to see their caregiving as an opportunity to be of spiritual service and rallied to the task in ways caregivers in much easier situations sometimes could not.

In time I saw that the spiritual path of family caregiving involved a willingness to go out the door metaphorically speaking. To go beyond one’s limited personal perspective, to see beyond the horrors and trials and tribulations of the path, and to expect that the rewards and value in what one had taken on meant so much more than clinging desperately to the past and trying to keep the status quo intact. Change is inevitable when someone has a deteriorating physical or mental condition. One has to stay in the present moment, be with what is, and be open to solutions one would not have previously anticipated. Sometimes the worst things people feared led to the best possible outcomes.

The previous blog entry was an excerpt from the Introduction of my latest book, The Spiritual Journey of Family Caregiving. Buy Now from Healing Communication Press at Lulu.com. Thanks!