Podcast Interview with Carol Marak

Carol Marak is a woman who knows about the difficulties of balancing work and family caregiving firsthand. She took care of both her parents until their deaths and decided to create a website (WorkingCaregiver.com) designed to help other family caregivers in Austin, Dallas, Houston, and San Antonio Texas find the resources and help they need.

I had the pleasure of talking with Carol recently. She interviewed me for her Elder Care Expert Podcast Show and it went very well. You can read her blog and find the link to that interview here.

Default Caregiving Continued

An excerpt from The Spiritual Journey of Family Caregiving:

“I don’t have anything going on in my life compared to everyone else in my family, so I’m the one who has to be the caregiver.”

If this was a healthy motivation for caregiving I wouldn’t have a job! And I certainly wouldn’t be hearing so much resentment. Usually, what happens here is that the caregiver who believes this statement wakes up one day and realizes that her caregiving responsibilities keep her trapped in a life of pain and anguish. At a time in her life (her divorce, for example) when she most needed to be taking stock of her needs, her desires, and her ability to create a new life she put her life down and took on caring for someone else’s. Her brother and sister are busy living the lives they wanted while she’s losing precious time doing something that’s really not healthy for her over the long haul.

The best thing a caregiver in this situation can do is to choose a time when she will take a break from her caregiving responsibilities to get help figuring out what she most wants for herself. She needs to make plans well in advance (by choosing a class, finding a therapist or career counselor, etc.) and then let the family know that she won’t be available at that time. This is different than saying “I need help” and then having to deal with her siblings’ resistance to giving away their precious time to someone who’s not as busy as they are. By saying “I’m not available” she is making two statements: “I’m doing something important, too” and “Mom needs help I can’t provide at a particular time. What can we do?” If no one is available a new choice about how to handle mom’s care (paid help, church volunteers, elder day care or social programs, or community service support) could be arranged.

The Default Caregiver—Do you Really Have To Be?

Many books on family caregiving talk about the challenges of family caregiving from the standpoint of how to manage the daily tasks of the job and how to gather the resources you need. My book does that, too, but one of the things that became clear to me early on was that not everybody's motives for doing family caregiving were the same. It's not always a labor of love; for some people it's a trap they fell into, an obligation, a task they resent and struggle to survive. In the next several weeks I'll be putting up blogs about the situation of caregiving by default and how to change this worst case scenario into one that actually works.

From my book:

One of the saddest and most frustrating situations I come across in my work as a Family Caregiving Consultant is when a client says she didn’t “choose” to be a caregiver, she’s a caregiver by default. The story usually goes something like “My brother says his career keeps him too busy. My sister says she’s too busy with her three kids. I just got divorced and I don’t have kids or a career I care about. Mom insists on living at home and refuses to let a ‘stranger” into the house despite how much help she needs, so the job of taking care of her fell to me.” If I press I might hear that she cares about her mom and would feel guilty to say no in this situation... but the truth is that this caregiver doesn’t believe she had any choice but to say “yes.”

The anger and resentment this caregiver feels is palpable. She can’t talk about her brother and sister without spitting out the words. Later I find out that her relationship with her family is miserable because she keeps trying to guilt-trip them into doing things they don’t choose to be doing. Family dynamics are a disaster and she wants someone (me) to come in with my magic wand and fix it... but I can’t.

The caregiver, however, IS capable of making a change. Nobody can force a person to be a caregiver against their will. Our beliefs shape our experience and we always have the ability to change our experience by examining those beliefs and the choices that stem from them. Let’s examine the ones that might be running the show in the scenario above.

The previous blog is partially excerpted from my book The Spiritual Journey of Family Caregiving. Available now from Lulu.com.

Paradoxes of Life with Alzheimer's

Sometimes families I worked with would tell me that the person they knew, the person they once loved or, in some cases, felt like they "owed allegiance to" no longer existed. They saw their loved one as an empty shell and said that it helped them make all the disappointing choices they needed to make at the end. Their loved one no longer knew them, knew where they were, or even recognized themselves in the mirror.

And yet, while I hated to disabuse them of what they believed to be a "truth," if they asked me I had to tell them what at least three caregivers in five years told me. The story was eerily similar for all of them. Their loved ones had not recognized anyone for years and one didn't even speak. But on their death beds, they suddenly had a moment of incredible lucidity. They looked straight into their primary caregiver's eyes, called them by name, and thanked them for everything. It gives me goose bumps every time I think about it.

Alzheimer's appears to strip away a person's identity but my belief is that it simply strips away the outer trappings—the personas, the socializations, even the beliefs about who one is. And yet the inner essence of the human being still exists. It can awaken spontaneously when one doesn't expect it, be accessed through a smile, familiar song, the right kind of touch. And sometimes when the old masks come down, aspects of the person's being become even more clear.

An excerpt from my book:

Lisa describes her mother with great warmth and affection. Family photographs show Verna to be a vivacious beauty with a twinkle in her eye, always dramatic in appearance because of her inflection and expressive body movements. In her final years she liked to wear wonderful hats that showed off her deep blue eyes and thick white hair. Lisa says her mother loved “beauty, mischief and adventure.”

Verna Mae was born in Ridgway, Pennsylvania in 1912. She was an accomplished pianist but grew up in the shadow of her sister, a well-respected conductor. Verna never played in public until Alzheimer’s Disease robbed her of her inhibitions but, from that point on, she played piano constantly and loved to dance. She was a great favorite wherever she went, always ready to grab an arm and twirl around the dance floor. People described her as the “eternal 16-year old”, always sprightly and girlish. It was a paradox of Verna’s dementia that she needed to lose her mental faculties in order to express her most authentic self. As Lisa describes it, her mother’s essence remained intact to the very end and, in fact, became more pronounced. She couldn’t recognize anyone except for Lisa at her death but never lost her appreciation of love and beauty.

The Chakra System

If you're a practitioner of Kundalini Yoga, an avid meditator or have a strong interest in metaphysics or New Age philosophy you might have noticed that the seven psychospiritual levels of family caregiving I've posted blogs about recently bear a strong resemblance to the seven levels of spiritual development in the Hindu chakra system. I'm not a proponent of this system of belief. I grew up Jewish, lived in an Irish Catholic community on the East Coast as a child, later studied Buddhist and Taoist philosophy, and choose a very personal and somewhat eclectic form of spirituality today. However, what I learned about the chakra system was extremely beneficial at the time I wrote the previous articles and still influences some of the work I currently do.

The Chakra system is a very ancient philosophy which correlates certain parts of the body (which incidentally appear to correspond to bundles of nerve ganglia along the spine) with different sets of physical, emotional and spiritual life issues or phases of development. In Hindu culture it is thought that a person must pass through each of these phases of development on the path to enlightenment.

I first learned about the chakra system when I was a book designer and acting art director at Crossing Press. Crossing published many books on alternative healing and spirituality and we were given a copy of any book we worked on. I loved their titles and I read all the ones I designed and many more. One of my favorites was a book called The Sevenfold Journey: Reclaiming Mind, Body & Spirit Through the Chakras by Anodea Judith and Selene Vega. They teach workshops internationally to psychotherapists wishing to use the insights from the chakra system with their clients and in their own lives and this book was required reading in their classes. It's still in print, very accessibly written, and has lots of great exercises and down to earth examples of how to apply these insights to your everyday life. I loved it and I recommend it highly to all of you.

The Sevenfold Journey may not be specifically about family caregiving but one thing I discovered in my work is that family caregiving can serve as a catalyst for whatever phase of spiritual development you happen to be working on. For example, if you need healing in regards to your relationship with survival and physical life (finances, housing, etc.) you'll be forced to face those issues first in your work as a family caregiver. That's the work of Chakra 1. If your finances are mostly squared away, you have plenty of savings, a roof over your head and plenty to eat but you struggle with issues of personal power and self-esteem, that's Chakra 3. And so on.

Furthermore, it doesn't matter what religion or spiritual background you happen to be from. You can think of the chakras as levels of psychological development (which they are) and use the lessons in that context as well. I use this approach in my work as a spiritual counselor and throughout my own book. However, in The Spiritual Journey of Family Caregiving, I never even mention the word "chakra'. It's unimportant. Still, since I do use the word "spiritual," I thought it might be helpful for you to know the influences that led me to see spiritual significance in all the things we do. And to know what spiritual background I'm seeing the world from.

You can buy The Sevenfold Journey: Reclaiming Mind, Body & Spirit Through the Chakras by clicking this link.

You can buy The Spiritual Journey of Family Caregiving by clicking here.

Four More Psychospiritual Levels of Family Caregiving

Level Four: Love

When our physical and emotional safety is assured and we have the willpower we need to make a plan of action and follow through, the most natural result is a desire to make loving decisions. Unfortunately, caregivers can be so concerned about doing what is loving for their relative that they forget to do what’s most loving for themselves. Caregivers who struggle on this level appear to willingly throw their lives away in order to provide the level of care they believe is right. They might do the self-care needed to stay physically healthy but never make time for their deepest heart’s desires. Eventually, however, this can lead to severe depression and illness can become the result.

These caregivers need acknowledgement of how loving they are and support to continue acting from a place of love. But, spiritually, they need to hear that refilling their own cups so they can give freely of their reserve is ultimately the most loving act for all.

Level Five: Communication

Love doesn’t do much good if you can’t communicate it. Caregivers struggling on this level complain that nobody really listens to them when they say what they need or report horrible family conflicts stemming from miscommunication or lack of communication on their parts.

I coach a lot of caregivers to communicate in ways other people can hear. I also encourage people to spend time listening to their inner voices so they can be clear about what they are asking for. Spending time each day in solitude, in prayer or meditation or by using art therapy, journal writing and other forms of creative expression can work wonders. Other people benefit from conflict resolution workshops or support groups where they are encouraged to express their feelings and ask for what they need.

Level Six: Perception & Imagination

I’m always surprised by how often caregivers allow themselves to be straight-jacketed by nothing more than illusion. A person living in the lap of luxury, making more money than I’ve ever even imagined for myself, will tell me he can’t afford to pay for services while a person in a run-down trailer park living on a tiny fixed income gives me a big donation check. There are caregivers who tell me that their severely demented relative couldn’t possibly be so badly off because “look at how good he looks” and others, dealing with only the mildest of memory loss, who insist their relative should no longer have their independence.

How a person perceives him or herself can also get in the way of healthy caregiving. Whenever caregivers see themselves as inadequate in some way their stress level and depression scores go way up. If they see themselves as prisoners every caregiving task becomes a hated symbol of oppression; if they see themselves as playing the role of guardian angel every caregiving task becomes a source of pride. Sometimes the biggest task is to help people see things from a different perspective.

Level Seven: Spiritual Belief & Purpose

Because caregiving stirs up so many moral issues, caregivers often talk to me about the role spirituality plays in their lives. Studies have shown that spiritual people have significantly lower levels of stress and my experience as a family consultant bears this out. Some people tell me their lives are blessed to be able to share so much love and to be of service to the people in their lives. They tell me times are hard but God never gives them more than they can handle. When I give these caregivers a standard depression scale test their scores are often the lowest of anyone I meet despite caregiving situations that rival clients with the highest scores. I am always humbled by how even the frailest elderly caregivers can be so strong and determined when buoyed by spiritual devotion. It is hard to ignore the value of such empowering beliefs.

Essentially, this level is about life purpose. Caregivers who operate from a sense of purpose have a clarity about their actions that is almost startling. They know that caregiving gives them an opportunity to fulfill that purpose and use my services to gather the resources they need to accomplish their chosen task. Others believe their deepest purpose lies elsewhere and choose to do what they can do as caregivers while maintaining adequate time and energy for their true callings. All caregivers who operate from a place of commitment to their highest goals tend to make choices that are empowering, clear and decisive.

Full Circle

It’s wonderful to be full of inspiration and higher purpose but if that purpose stays in your head and is never realized in physical reality it doesn’t do much good. We have to use all the abilities we develop along the way. We envision where we want that higher purpose to take us (Level Six) and communicate our hopes and dreams to others as we make our decisions and plans (Level Five). We gather community to support our heart’s desire (Level Four) and use our willpower to follow through on our intentions (Level Three). We find healthy ways to enjoy the process of getting to our intended destination (Level Two) and use all the physical resources at our disposal to bring our ideas to fruition (Level One).

That brings us full circle and makes it clear, I hope, that one level is not more important than the others. They all work together. They all are paths for personal growth and development, and caregiving, within this framework, is the perfect catalyst for this to happen.

This blog is an excerpt from The Spiritual Journey of Family Caregiving, available now through Lulu.com.

The First Three Psychospiritual Levels of Family Caregiving

In a previous blog I mentioned that it seemed like the issues caregivers came to see me about fell into seven distinct categories of distress. This blog describes the first three; I'll post descriptions of the other 4 levels later this week:

Level One: Physical Survival

This is our foundation, what we need to survive. The problems caregivers have on this level always seem to revolve around money, adequate housing and physical health. They might have addictions stemming from their desire to escape their lives or act as if they are incapable of taking care of themselves on the physical level. Some people even become dependent on doing caregiving because they use the patient to supply them with housing and other basic needs.

My task with these caregivers is to help them find the resources they need to learn stand on their own two feet. I might suggest a family meeting to help the family divide caregiving responsibilities in a way that allows the primary caregiver to go back to school, get a part-time or full-time job or develop a plan that will help them separate their caregiving decisions from issues of personal survival. This is essential to create a foundation of support for both the caregiver and the person who depends on their assistance.

Level Two: Emotional Safety

The biggest problem for these caregivers is trouble with emotional boundaries. They might find themselves blown off-course by their patient’s emotional reactions and spend all their time jumping through hoops to keep the peace instead of making space for their own needs or desires. Or, conversely, they might put up such high barriers to protect themselves that they become isolated, untrusting, judgmental or depressed. They fear someone will try to take advantage of them in some way and turn away help that other caregivers jump at the chance to get.

My task with these caregivers is to help them create emotional safety either through learning to set appropriate limits or by learning to take small emotional risks. Both of these caregivers benefit by joining support groups where they get the nurturing needed to develop trusting relationships and the support to take care of themselves. For others I might recommend a self-help book, sessions with a therapist or a class. I also like to help people remember that emotional safety stems from enjoyment of life and encourage them to plan pleasurable activities every day.

Level Three: Self-Esteem & Personal Power

Caregivers struggling on this level may have every advantage in terms of money, respite assistance and family involvement but fret over every decision for fear of making a mistake. They repeatedly say that they need to make a change but do nothing because they fear it won’t work. They believe they are powerless to change the status quo.

Other caregivers go to the opposite extreme. They attack every challenge as if on a battlefield and overcompensate for their fears by compulsively staying in action. They find it hard to tell the difference between emergencies that require such superhuman effort and situations where slow relaxed progress would do the same. They antagonize people who might otherwise help and exhaust themselves through overwork and repeated stress.

My task as a family consultant on this level is to help people use their power in a balanced fashion with realistic action plans. We focus on baby steps and the reassurance that it is okay for things to be less than optimal even for long periods of time. I try to help people trust that slow steady progress that allows for adequate rest, time and attention for other aspects of one’s life can be more effective in the long-run than burning oneself out with frantic attempts to fix everything that’s not quite right.

This blog was an excerpt from my book The Spiritual Journey of Family Caregiving. Now available through Lulu.com.

I Got My First Book!

I bet you thought I already had seen my book. Nope. I was just so excited that the book was now available that I got working on how to let people know about it right away. The rest of us call it "jumping the gun" but the book industry calls it "preselling". It's the same thing movie producers do when they put a trailer for a movie they aren't even finished with yet out in movie theaters months ahead. They get you all excited about a new movie only to put a line at the end of the preview that says "Coming in March."

I was actually a little worried about "jumping the gun" but I got my first copy of the book in the mail this weekend and I had nothing to worry about. It looks great! I'll be adding a page of endorsements of my work to the front (I forgot that) and I'm making some insignificant adjustments nobody but a perfectionistic old graphic designer would EVER even notice. (I used to make my living that way.) Then I can hit the "okay" button and make my book available to Amazon.com and other online distribution services. It's already available to all of you though, buying it directly from the printer, the same way I did, through my association with Lulu.com.

I'm so glad it came out good. I didn't know if a print-on-demand service would be good enough but it looks every bit as professional as books printed any other way. I used to work as the acting art director for a book publisher (Crossing Press) so I know. Now it's off to get some other things done. I'll put more up later this week.

You can buy The Spiritual Journey of Family Caregiving either as a print-on-demand book or as an e-book download by clicking here now.

The Seven Psychospiritual Dimensions of Family Caregiving

The following is an excerpt from The Spiritual Journey of Family Caregiving:

Last week I had three phone calls from caregivers in almost identical situations. They were all adult children in their 50s who had moved a demented parent into their home to better manage their care. The patients had similar problems and the caregivers were in the same income bracket and had similar levels of support. However, the cases couldn’t be more different. One person was in crisis mode, and desperately spent her time putting out fires the other caregivers did not even detect. Another was outwardly calm and was clear-headedly collecting resources so she could be the most loving caregiver she could while keeping her life intact. The third was deeply depressed. She wound up caregiving because everyone else in her family expected her to do it.

Family caregiving isn’t a simple process of determining what a patient needs and providing it. Long standing personal issues come to the surface and make the process much more complicated. Over the years I’ve noticed distinct categories of difficulty which I now think of as separate but related realms of personal development. The levels are:

1. Physical Survival
2. Emotional Safety
3. Self-esteem & Personal Power
4. Love
5. Communication
6. Perception & Imagination
7. Spiritual Belief & Purpose

A caregiver lost in basic survival never talks to me about love or issues of spiritual morality whereas those who have their physical needs well in hand often do. On the other hand, there are caregivers who only speak to me about love and spiritual purpose while their physical health suffers and their finances are in a shambles. I’ve come to believe that physical, emotional, and spiritual health depend on maintaining balance in all these areas of life.

In my next few blog entries I’ll be exploring caregiving through the lens of each of these seven dimensions.

Caregiver Blessings

As I'm sitting here trying to decide what excerpt from my book to add next -- or what article to write -- I find myself wanting to avoid diving into the hard stuff first. There's a lot of hard stuff but there's one thing I learned the "hard" way in my career as a family consultant -- don't let yourself become blinded to the beauty of life through the pain and despair of the enormity of the situation you find yourself in. It's bad enough to be watching someone you love deteriorate step by step but to lose sight of the loving, the small things that make it all worthwhile, the positive remembrances of good times in the past.... well, then you lose everything.

I just took some time to scour my book looking for quotes from caregivers I worked with about positive things they remember about having been caregivers or what they learned. Here are a few that I found:

The time I spent caring for my mother was the most difficult in my life and also the most precious. It is hard to see the wonderful moments when one is immersed in the tragedy. In looking back, however, I seem to remember mostly those times and the misery and tragedy is gradually fading.—C. Pezzoni

You find out what you are made of. When I look back on the sacrifices I made, the amazing ways I found to cope, the people who helped me, I find a sense of wonder, and pride that I did it. I didn’t know what I was capable of. I kept my commitment to my mom to be there for her when she needed me most. She helped me into this life. I helped her out of it. We both know it, and nothing can take that away. —R. Ryan

What I have really learned is about my own depth and capacity to love. I’ve become more sensitive to my own mortality and to what matters in the end. Truly loving someone, being aware of beauty and keeping the senses alive helps you appreciate each breath. Some people get that from studying Zen or reading books, I learned it from taking care of my mother.—L. Ledin

Excerpts from The Spiritual Journey of Family Caregiving. Available now in print or e-book download from Lulu.com.

My Book Is Going to Be Reviewed!

Well, that is what any book author wants, assuming the book review is good. But that's the exciting AND scary thing about it. The opportunity to have a book reviewed in the national press can make -- or break -- an author's reputation. Ann, in her comment to my "Embrace the Present, Embrace Possibility" blog, said it best when she said "Change can be good or bad." And we can't control that and frequently we have no idea in advance what the true impact of the change will be. Sometimes it's both good and bad at the same time.

For example, I lived through a devastating earthquake in Santa Cruz, CA in 1989. My house was rocked partially off its foundation, my now ex-husband's business literally slid down a hill and never recovered, the framed pictures I was busy getting ready for a show fell and smashed to bits. Our downtown area was mostly rubble and took years to recover (one or two holes still haven't been filled in). But to say the change this created was "bad" would be both an understatement AND a mistatement at the same time.

Today, nineteen years later, I can truthfully say that in many ways the downtown has never been better. It's robust and thriving in a way that wasn't possible before. My own life was forced into directions I NEVER would have even contemplated and one thing led to the next and I'm doing things much more valuable and interesting than what I could do before.

So now I've embarked on the journey of being a book author again -- this is my third time -- and I only just got started publicizing it this week and the response from the very small effort I've made thus far has been immediate. I don't know about book sales yet but people have written to me and are checking out this blog, asking to review it for their publications.... all right then. Let's see what happens next.

Dementia Caregiving News Feed Added

I just added a newsfeed on this blog with up-to-date information from news sources around the world about dementia and dementia caregiving. It's way at the bottom of the page and includes the text of one news story and links to several others. Check it out!

Embrace the Present, Embrace Possibility

Worrying about the future is something I am way too much of an expert at. Aren’t we all these days? Life has been so full of turmoil with terrible news about war and terrorism and children being kidnapped and other horror stories on the nightly news, not to mention worries about budget cuts and the normal personal dramas of everyday life.

I got some advice on this the other day: Embrace uncertainty. (Personally, this advice sounds impossible to me but there’s a logic in it worth exploring.) Everything in life is uncertain. Security, as Helen Keller liked to say, is an illusion. We could be hit by a bus in freak accident tomorrow. We can plan our lives down to the nth degree and lose it all in an earthquake. We just don’t have that much control! And yet so many of us, myself included, spend hours every day trying to plan and control what happens next.

There’s a flower called Mimulus that likes to live in precarious places overhanging running water. Other flowers choose protected areas surrounded by grass and trees or prefer to be in wide open grassy fields but not Mimulus. It lives life on the edge and when it’s time to reproduce it just casts its seeds into the water below where they are carried down the stream and planted wherever they end up. Can you imagine what it would be like to trust life so much? To just let go and believe you’ll wind up where you need to be?

Anxiety comes from fear about the future. We want the future to be a certain way and then fear that it won’t be. We try to convince ourselves that we can make things work out the way we intend and spend hours trying to imagine and prepare for any possibility that would interfere with our idea of how things “have” to go. And yet underneath we KNOW we can’t control every variable so, because we get so invested in how we want things to be, we get anxious and afraid.

I think the best way to be prepared for the future is to understand that even the worst case scenario can open doors for the best. We have to embrace everything that happens in the present as an opportunity.

This blog entry was excerpted from The Spiritual Journey of Family Caregiving. Available now from Lulu.com.

Home Is Where The Heart Is -- What to Do When a Dementia Patient Keeps Asking to Go Home

“...Every day’s an endless stream
Of cigarettes and magazines
And each town looks the same to me
The movies and the factories
And every stranger’s face I see
Reminds me that I long to be

Homeward Bound
I wish I was
Homeward Bound
Home, where my thought’s escaping
Home, where my music’s playing
Home, where my love lies waiting
Silently for me ....”
—“Homeward Bound”, by Simon & Garfunkel, 1966

On a recent trip back east I had a megadose of “home.” People always ask how California is different from New England and I talk about old houses and white church steeples, green green grass in the hottest summer, autumn leaves, and rolling hills. I talk about the way people talk and what they talk about, how they dress and how they act. It’s a completely different culture in all kinds of subtle and not so subtle ways but what really makes New England home for me is harder to explain.

It’s a feeling of place, the absolutely solid conviction that this is a place that supports me, where I feel safe, where I can relax. I see those white colonial houses with their black shutters sitting peacefully around the town green with the white-steepled First Congregational Church at the corner (those classic New England churches are always “First Congregational”, don’t ask me why) and even though I’m Jewish and I’ve never stepped inside one of those structures in my life I feel right at home.

It’s the touch of familiar. I know this. I know how to act here. I know what’s expected of me. And I know what to expect. When my parents took me to a play and insisted that we arrive a FULL HOUR EARLY even though it was reserved seating and we had our tickets already I was surprised to see the parking lot filled with other people waiting in their cars for the doors to open. However, when the performance scheduled for 8 o’clock started exactly on the dot of eight I breathed a sigh of relief. I haven’t been to an event that started on time in 16 years, the entire time I’ve lived in Santa Cruz. It’s those little things that really don’t matter that give you the reassurance that all is well. It’s as it should be. I know this. I’m safe here.

Dementing illnesses strip this safety away. Little by little and sometimes in large chunks the familiar becomes unfamiliar. The little things a person unconsciously counts on to clue them in to where they are, who they are, how they should act and what they should expect disappears. The family starts to hear “I want to go home” over and over. What this really means is “I don’t feel safe anymore.” “Nothing is familiar.” “I want to go where I don’t have to worry, where I can rest, relax, breathe deeply and know everything is alright.”

Unfortunately, when you are losing your mind everything is NOT alright no matter what anyone says to convince you otherwise.

Families resort to all kinds of tricks to deal with this and sometimes that works. Sometimes going for a drive around the block and going through the familiar action of walking up to and opening the front door to one’s house is enough to trigger the feeling of “at homeness” for a confused patient. An old favorite dessert or a piece of music can do the same thing.

But when all else fails—the usual tricks, the false reassurance, the distractions—it’s time to get honest. Things aren’t the same anymore. Neither one of you is in familiar territory anymore and it does feel terrible.

But home isn’t just where things feel familiar. “Home is where the heart is.” “Home is where they have to take you in.” “Home is where everyone knows your name.” Home is where you know you are loved. So bank on that instead.

First acknowledge the pain and confusion outloud. “You’re right. Everything has changed and there’s nothing we can do about it. I’m so sorry. I wish I could make it different but I can’t.”

Then remind the patient (and yourself) that you still have love, the ability to show you care and the ability to receive it. Even the most demented patient is capable of holding your hand and vice versa. So hold hands together, be together, claim a moment of comfort together. The only thing any of us really have is the present moment because nobody knows what the future will bring and the past is over. So be in the present together. Remind your patient that they are safe, you love them and care about them. Say “We can’t go back now. I wish we could! I want to go home, too! But it’s too late now. We’ll just have to stay here for the night. But at least we’re together. Working together there’s nothing that we can’t handle. Can you help me with that? Let’s have some ice cream together and watch TV. We can cuddle up on the couch, look at old photo albums and reminisce about old times, maybe put on some music and dance.” Tell your patient “I’m sure in the morning it will feel a lot better.”

And it will.

This blog entry is a chapter from the Spiritual Journey of Family Caregiving.

How I Became a Family Caregiving Consultant

I've been daydreaming today about doing local booksignings. It's been a long time since I've done one of those.

I think I'll start by talking about how I was introduced to the Caregiving Consulting work I came to do. It wasn't part of my game plan. I went to school to get a Masters Degree in Transpersonal (spiritual) Psychology and intended to do private practice personal coaching, lead support groups and teach workshops for a living. Instead I ran out of money before I got started and had to find a regular job. Doing office work at the Alzheimer's Association and leading support groups there was the only one I found.

I was none too pleased with this. I knew nothing about Alzheimer's Disease and hated the idea of doing office work but figured the support group training would help while I figured out what to do next.

The first day the executive director handed me a copy of The 36-Hour Day, considered at the time to be the Alzheimer's Caregiving Bible, had me watch some videos on Alzheimer's Disease and two weeks later left me alone in charge of the office while she went to get something to eat.

I had a big stack of paperwork and filing to do on my desk and was sitting there dejectedly trying to imagine how a Masters degree in spiritually-oriented psychology was going to be of any use in this when the phone rang. The man on the other end was involved in a family argument about how to take care of his dad. He said his father lived alone on a ranch far out in the country and had been diagnosed with Alzheimer's Disease. His father had lived in that house his entire life and always said that he would rather wander out into the woods and die like all natural born creatures do than to be shut up in a nursing home away from the place he loved at the end of his life. But now his other relatives were refusing to honor his wishes. None of them could leave their families and jobs to live with him and they were all fighting about how (or if) they should take him away and have him placed. I suggested a few services they might take advantage of but spent most of the call listening and helping the caller sort out his feelings about the ethics of following through on his own request.

A day or two later I was left alone again and received a call from a woman taking care of her demented mother at home who was having what people in the field call a "catastrophic incident". She was extremely agitated, screaming obscenities and was accusing the caregiver of trying to steal from her. The woman on the phone was at wit's end and said "I've had enough of this—YOU talk to her!!" and, to my horror, handed the phone to her ranting mother. Keep in mind I had NO training at this point beyond a basic introduction, had never talked to a demented person in my life, and had no idea of what to do.

I listened to the mother's rage and vitriolic screaming for a few minutes, freaked out silently for awhile, and finally thought "this isn't what I get paid to do." I interrupted the raving and said the first thing that came into my head. "Mrs. So and So, could you help me with something?" Immediately, Mrs. So and So snapped out of her rage. "Of course, dear! What can I do for you?"

Then I didn't know what to say so I stammered out the truth. "I'm brand new on this job and I don't know how to help you and I have SO much I have to do! Could we do something else?"

"Absolutely!" she said. "Don't you worry about a thing. I'll take care of it." And then she hung up the phone.

About twenty minutes later the caregiver called back. "You're a miracle worker! What did you do? She's been happy and sitting quietly reading a book upside down ever since."

I was stunned. I didn't know why what I did worked but I never forgot it. By asking the patient to take care of me, by treating her with respect and letting her feel like she still had value, I somehow got through.

From that point on I realized how my Transpersonal Psychology background was going to matter in the work I had taken on to do. One client after another asked for "practical" help but the help that made the biggest difference was listening and honoring each person's sanctity as a human being.

Trust

Trust was the one element I saw people grapple with time again. “Mom couldn’t possibly be happy in a situation like that” people would say when it came time to make changes in a living situation. Or “I couldn’t possible allow such and such to happen!” they would exclaim, assuming the worst, not seeing the potential for good in every shift that had to be made. Caregivers guided by an inner sense that everything would be alright, that the best solution would come, that God or the Universe or their Higher Power would find a way, said different things to me. The situations and choices were identical but the emotional/spiritual beliefs underlying the questions allowed for solutions better than what they could conceive of on their own. Instead of saying “no” or “I can’t imagine it” or “I won’t consider anything but what we’re doing now” they would say “I’m ready to accept things as they are and I’m ready to embrace the changes that are coming our way. How can I do this in the most loving way possible?” “What could I do better?” And “how can I get help with that?”

Another excerpt from the Introduction of The Spiritual Journey of Family Caregiving. Buy the book at Healing Communication Press at Lulu.com. Thanks!

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!

Welcome Everybody!

I just spent several hours getting everything on this page to work right but now I'm way too tired to write. Rest assured, I will! I have more than 5 years worth of articles I wrote about family caregiving for people with progressive memory loss and dementia and I plan to put something up every day. Most of what I plan to put here can be found in my newest book, my third, entitled The Spiritual Journey of Family Caregiving. You'll find a link for that on the sidebar at the right. But on occasion I also hope to include links to other resources, book reviews (for books written by other people besides me), and a variety of other stuff.