Friday, February 22, 2008

You Say You Want a Revolution

I saw a new movie called "Across the Universe" last night that features songs by the Beatles and is a good representation of life in the 60s, the time period when those songs were written. Quite the nostalgia trip. I wrote an article about being a child of the 60s and a caregiver today that is included in my book The Spiritual Journey of Family Caregiving. Here's a small excerpt:

It’s an interesting role we children of the 60’s now have—in our youth we fought to change the world by joining protest marches and refusing to conform. We envisioned new futures and built whole movements of change around those visions. We created communes and worker cooperatives and new businesses that challenged the status quo. We carried freedom of speech to new extremes, challenged social and political discrimination based on every sort of difference, and created a sexual revolution that has completely changed the mores of the world for better and worse. We believed in revolution and created one mostly by rejecting the habits (and the wisdom) of our parents’ generation. We made anyone over 30 the enemy but now we need to take care of this same generation. The only way we can do that is by putting the battle down and making peace as best we can.

Luckily, most of us do have appropriate experience we can draw upon. During the last 10-20 years, my generation has spent most of our time as parents and breadwinners ourselves and have, for the most part, learned to mellow our approach to social change. We learned the importance of creating emotional and physical stability for our children while assisting them to change and grow in a gentle organic manner. We strove to respect our children’s feelings and right to make decisions for themselves even as we attempted to steer them in positive directions and help them make healthy choices. And there have been times when we have had to set the very same limits our parents set for us and say no to behavior that was counterproductive for all concerned. Chaotic revolution and anarchy is not the best way to raise a family!

And it’s not the most loving way to treat adults. If we continue to fight the 60s fight about change with our parents we will have a very rough road as caregivers. But if we apply the same principles to caregiving that we learned as parents, we’ll be much more successful. We need to help our parents maintain emotional and physical stability while introducing change gradually. We need to respect their feelings and their right to make decisions for themselves. We can suggest what we think are more healthful solutions but we need to accept their right as adults to make choices we don’t agree with unless that behavior falls into the legal definition of self-neglect or hurts someone else.

None of this has anything to do with accepting any status quo that keeps us trapped in an unhealthy dynamic for years at a time. Insisting that their behavior not hurt anyone else includes us! But changing these dynamics does require patience and the willingness to face the feelings we—and they—have been avoiding. Acknowledge the grief and fear that change entails outloud. Agree that their feelings are justified and promise to support them through it. When the time comes that the pain of doing nothing is worth the risk of trying something new, if your emotional support has been genuine and consistent, you may get an opening that will let you all get what you need.

Buy The Spiritual Journey of Family Caregiving by clicking here now!

Thursday, February 21, 2008

Basic Needs and Thinking Beyond

In several earlier blogs I wrote about the Seven Psychospiritual Levels of Family Caregiving—survival, emotional safety, self-esteem and personal power, love, communication, perception, and spiritual focus. Later I admitted that these ideas were similar to the New Age version of the Hindu chakra system. They are also quite similar to Abraham Maslow's psychological hierarchy of needs.

Maslow believed, as most psychologists do, that throughout their lives people progress through various stages of growth and development with characteristic needs that become the person's focus of attention and underlying motivation. We also revisit or can become stuck at certain levels of development because of outside circumstances beyond our control and our reactions to them.

Maslow recognized that the first stages of development—physical safety, emotional security, and issues of self-esteem and personal power—were what he called "deficiency needs." If those needs are met the person tends to relax and automatically chooses to focus on higher needs and desires like truth, beauty, creativity and giving to others. But if they're not met, people get understandably anxious, they shift into emergency modes of behavior, and their perspective tends to narrow. They lose track of their higher purpose. And the decisions they tend to make are changed as a result.

I always assumed that the answer to moving up this scale of needs or up through the Hindu Chakra levels of development was to work through whatever needed to be addressed on whatever level that you're on. And that's true to the extent that those issues hold you down. And yet most of us in the United States anyway are not living in such abject poverty that our basic needs can't be met. Even if you were to somehow lose everything there are social services that provide shelter, food, counseling services and job training to get you back on your feet. If you're willing to accept help a person's basic "deficiency needs" in this society are pretty much guaranteed to be met. But an awful lot of the time we lose sight of that. We get scared. We think we're alone. We sink into believing our survival and well-being is threatened and act as if all is lost when it's not.

For example, I recently went through a period in my life where I felt worried about money. A few unexpected setbacks, the yearly after-Christmas slump in counseling and sales, an upsetting series of comments from my loved ones, and then a bout of sickness and an inability to work that lasted weeks. My desire to take a long-term view for this book, get it out to the widest number of people possible, use it for the greater good, temporarily took a back seat to "how am I going to make a living from this??!!!"

The same thing happened with my counseling practice and my flower-essence aromatherapy perfume business. All I could think about was how to change things as fast as possible, totally losing track of the longer view.

But then things started to settle down. Sales picked up slightly, I asked for help, and with that help new ideas for how to grow the business and the counseling practice started to come into sight.

The last couple of days I've had a repeating dream. I pay attention when that happens. It's always an indication of what I need to pay attention to next. The content of the dreams doesn't matter but the message that came through was to pay attention to the value of what I do, not just my personal problems but how what I have to offer can help other people, too.

When I was so busy doing, doing, doing whatever I thought would get my immediate deficiency needs met I couldn't think about my higher motivations. I was too busy putting out what I thought was a blazing inferno. But now my subconscious is saying "Don't do that. Think about what matters most, the VALUE of who you are and what you bring to others."

In other words, slow down, relax and reach higher up the chart of Maslow's hierarchy of needs to being of service, doing something of value, and giving back.

It occurs to me today that family caregivers could learn something from this. When I was a family caregiving consultant I saw people stuck in emergency mode all too often. Running here, running there, totally consumed with what HAD to be taken care of RIGHT AWAY! Sometimes that had to happen temporarily but many people got stuck in this panicky short-sighted point of view. They lived this way. And they were miserable.

People in these situations rarely talked to me about the value in who they were and what they were here to do. They never talked about love or higher purpose. They never noticed a single joy in the caregiving work they had taken on and they made short-sighted decisions that turned out badly and frequently had to be changed. I can relate to their pain and struggle all too well.

But I know better, too.

When I was a teenager I took a training in being a Junior Lifeguard. I hated it and didn't continue but I wish I hadn't given up because something significant from that training was lost to me. We were told to go limp if we were ever trapped underwater. To slow down to preserve our breath, remove any heavy pieces of clothing weighing us down, and then do what we had to do to get back to the surface again. I didn't practice it enough to learn it in my gut. When my friends and I capsized a boat a number of years later I panicked because my shoes were too heavy and my sweater was weighing me down, I forgot my training and fought with all my might until someone noticed the thrashing and rescued me.

No harm done. The thrashing about did help me get saved. Sometimes that's what you have to do. But you can't live your life that way! At some point you have to slow down, assume you have more time than you think you do, and get rid of any baggage weighting you down. If nothing is in the way, you kick a few times and pop up to the surface for air. If no help is in sight at that point then preserving your strength is essential. In lifeguard training the first thing you learn is to float. Learning to relax and preserve your strength so you can assess your situation and weather it as long as possible.

12-steppers say "let go, let God." Faith. Trust. The stuff at the top of the Hierarchy of Needs and Chakra system chart.

A perspective many of us lose sight of all too often.

Friday, February 15, 2008

Aging Newsletter

Are you receiving the "Human Values in Aging" e-newsletter? This monthly publication sponsored by the AARP Office of Academic Affairs features items about positive aging, including spirituality, later life creativity, lifelong learning, and the humanities and arts. For a sample copy or free subscription, send a message to:

Thursday, February 14, 2008

Compassion for All Concerned

The Webster dictionary defines compassion as “sympathetic consciousness of others’ distress together with a desire to alleviate it.” Compassion is at the heart of what we do as caregivers but it is also the area where we get most confused.

What happens when your patient has a disease that has no cure? What happens when grandma refuses your help and insists on sitting alone in her chair day after day despite your best efforts? Is it ever compassionate to say “No, I can’t do this for you. You’ll have to try to do it yourself.”? When is it compassionate to put family caregiving down altogether and hire a case manager or use a care facility for the bulk of the care?

Very often in my work as a caregiving consultant I find myself asking the same kinds of questions. How can I help this person who seems to refuse my every suggestion? What can I do for this person whose problems seem so big I can’t even imagine a solution? What do I do when a person is begging me to help them avoid the pain of the only thing I know will make their situation better (using psychotropic medications, facility care, or accepting their patient’s impending death). Most of the time all I can think of to do is to simply sit with them and help them cry.

The one thing I’m sure about is that compassion needs to apply to all people involved. If the caregiver is not compassionate with themselves they can’t make truly compassionate decisions for someone else.

Lately, I’ve had a rash of caregivers who are in much worse condition than the people they are caring for. In their desperation to keep their patient from experiencing the disappointments, frustrations, and unavoidable sorrow associated with living a life with disability and loss they have put themselves through far greater pain and suffering. Is this really compassion?

To avoid pain is to avoid life. Avoiding feeling one’s feelings leads to addiction to alcohol, drugs, sex, food and TV. It’s a form of suicide and, in the most extreme circumstances, can literally lead to one’s death. Yet, ironically, in our society we think it is a form of “compassion” to focus all our attention on helping ourselves and others avoid difficult feelings at any cost. Rather than grieve our losses, move through the pain, and make decisions from a place of what makes sense, we medicate ourselves into a “happy” place and do whatever we can to keep things the same.

When a caregiver sacrifices it all so a loved one can refuse to be helped by anyone but her, she has chosen to impoverish her own being. A person who was rational and truly coming from a place of love and compassion for others would never expect someone they love to destroy his/her life in order to help them avoid developing relationships with more people who could help. A person who was truly being compassionate to themselves would never allow someone to treat them like that. They would say, “I’m sorry, Dad, that’s not possible. These are the options we really have. I’m sorry you feel badly about that. What will make this easier for you?” THAT is what compassionate care really looks like.

It takes courage. It takes knowing what your limits and boundaries really are and facing the fears and grief related to not doing what others have come to expect you to do. It takes knowing what you need for your own well-being and having the ability to say, “This is no longer negotiable.”

In reality, allowing yourself and others to be disappointed IS the best choice for all concerned. It allows people to see things as they are. It helps people accurately evaluate what needs to be done without the superhuman (and unsustainable) efforts of Super-Caregiver getting in the way. Super-Caregiver is really only human. We all have physical and emotional limitations and when we go beyond those limits eventually there’s always hell to pay. When we surrender to what’s actually happening—not only to our care receiver but to ourselves—we will always make the best choices. And sometimes those choices involve facing great loss and pain.

Sometimes the only rational thing we can do is help each other cry. This is NOT how we wanted our lives to be! This is NOT the sweet end of life we always dreamed of for our relatives! This is NOT working out the way we thought it would! And when we finally let go of the struggle to make life be what it is not, and our grief and tears are finally vented, we look up and see the world through new eyes. The old unworkable solutions can now be discarded and new choices can be made. They’re not the choices we thought we’d be making. They’re not the choices our relatives and friends might think we should make. But, they’re the best choices we CAN make given the reality of where we are today. To bravely go where we never wanted to go before, with the intent of making this choice be the best we can make it be, is the most compassionate decision a person can make.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. Buy the book at

Friday, February 8, 2008

Learning to Trust When You Really Don't Know

I saw a photograph in a funny book I really like called The Meaning Of Life by Bradley Trevor Greive that showed a happy goldfish in a goldfish bowl with plants and pretty rocks. The quote under the photo says something like, “Why do we try so hard to create our own little worlds so we have the illusion of being completely in control of our entire existence... “ The next page shows a cat peering into the goldfish bowl and the caption continues... “when we know with absolute certainty that we are not?”

So many of my clients want me to predict the future and tell them exactly what to do so that they are prepared for every inevitability. Now, truthfully, I far prefer the clients who want to be prepared in advance to the ones who don’t because it really is easier to put certain safeguards in place before the time a crisis hits. However, we never really can know for sure what’s coming next. Sometimes we go to great lengths to make things work out well and something we never expected, and could never have anticipated, happens and we have to scrap our perfectly designed plan and start over. People who fear this happening can waver back and forth between multiple options, going round and round in circles and putting off the decision for years. There are SO many factors! And they think they have to make the RIGHT decision because how could they ever forgive themselves if it didn’t work out? And on and on.

Yet others go with great uncertainty into the great unknown and something wonderful happens!

I’ve come to depend on the value of both options: planning ahead for the most likely scenarios, knowing how I want to respond to my greatest fears, and then assuming that I DON’T REALLY KNOW how it will turn out. I take a deep breath and ask, “What’s the best thing that could happen if I take this option? Is it worth a chance? Have I covered my bases so I know what to do if I hate how it turns out? Yes? OK, here we go!”

Do I make mistakes and have to reverse direction? Absolutely! Just ask anyone who has ever driven in a car with me! Do I hate it when I do this? Yes! Have the consequences ever been painful? Many times. And yet the learning and growth I experienced from these wrong turns has led to better decisions in the future and sometimes entirely new directions I never would have found otherwise. Great things have happened as a result! So, even though none of us really want to make mistakes, sometimes that’s part of the process that has to happen. That’s what Thomas Edison thought. Here’s what he said about how many times he failed at trying to invent something before getting it right: “I have not failed. I’ve just found 10,000 ways that won’t work.”

Now I know that taking care of a loved one feels more wrought with anxiety than inventing a lightbulb and you certainly don’t want to make 10,000 wrong turns so call your family caregiving consultant or local social service center to help narrow down the choices. But, to tell you the truth, I very rarely hear about caregiver decisions that are a matter of life or death. Nine times out of ten, the worst that will happen if a wrong turn is made is a few weeks to a month of high emotion while the care receiver and the family get used to something new or have to reverse direction and try something else. It’s inconvenient and highly distressing but then things settle down and a new order to life appears. It’s often worth the pain and distress and, even when it isn’t, people rarely regret having taken a chance to try to do what they felt was right. At least, they’ll never have the regret of never trying to care for their loved one at home. At least, they’ll never regret that they didn’t use in-home or nursing home care when they needed it most. At least, they’ll never have to regret that they didn’t even try to do the thing in their heart of hearts they most wanted to do.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. Buy the book now by clicking here.

Sunday, February 3, 2008

Bulk Discounts!

I've received some questions about whether I would offer a bulk discount to people who want to buy several copies for their support group, caregiving organization or to sell as a fundraiser for a particular cause. The answer is yes! I can offer a 15% discount for orders of at least 5 copies to a single address, 25% off for at least 15 to a single address. But don't click on the link at right to buy the book through Lulu. You'll need to buy the book directly from me and I'll order them using my author discount and have them send the books to you. Contact me by clicking this link.

Saturday, February 2, 2008

Default Caregiving One More Time

"I thought I would benefit by doing family caregiving but it didn’t work out that way and now I’m stuck!"

Many people get a free place to live by taking care of an ailing parent or other relative. It looks like an easy way to take a break from ongoing financial struggles and it provides a service to someone else at the same time. Everyone wins! Or so it seems, at first. But when dementia is involved—and often when it isn’t—the dependency that care receivers tend to develop for their primary caregivers gradually takes its toll.

The caregiver gladly does what appears to be needed. It’s wonderful to know you are needed and to know exactly what needs to be done and just do it. Far easier, at first, than tackling the issues in one’s own life! But then, slowly but surely, the care receiver starts to need more help. Whether this situation is caused by continued physical and mental deterioration or by unconscious emotional dynamics between the care receiver and caregiver doesn’t matter. Eventually, unless this process is anticipated and avoided from the beginning, the caregiver’s ability to focus on her own life can become consumed by the care receiver’s ever increasing need for care.

A caregiver in this situation usually feels like she doesn’t have the energy to deal with her own life and be a caregiver at the same time. But by putting off addressing her own problems she’s undermining her self-confidence and increasing her anxiety and feelings of dependency. When I talk about giving up being the primary caregiver a person in this situation always balks because they believe they need to continue caregiving in order to have their own needs for housing, etc. met (as well as to ensure that the care receiver continues to get the level of care they appear to be depending on). The caregiver needs to make a change because this situation is intolerable but they’re too afraid to relinquish the role. She isn’t necessarily stuck in this situation—the family would just make new choices if she bowed out—but she is too afraid to do that.

A caregiver in this situation needs to consciously choose to separate her financial concerns from caregiving responsibilities by scheduling time specifically for getting help for this issue. Depending on what the situation is, a financial planner, credit card counselor, career counselor or professional coach would be worth their weight in gold. You might need to go back to school, sign up for a job training program or get a paid part-time job.

Once you look into this, you may need to make alternate arrangements for taking care of your family member so you can follow through. But, more likely, you might decide that being there for your mom is actually the most important thing you could be doing—as long as you can relieve your anxiety about the future by having a plan that will help you pick up the pieces of your life after your caregiving responsibilities are over. If so, that’s the conversation to start having with your friends and family: thinking ahead to the time when the care receiver will no longer be living, or when they will no longer be living at home, and getting help to set a plan in place to tide you over that transition (temporary housing, assistance with basic needs, schooling or counseling) so you can feel better about your caregiving role, knowing that your future is being cared for as well.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. Click here to buy it now.

Friday, February 1, 2008

Default Caregiving Continued Again

When a person feels trapped in their caregiving role there's usually a family pattern coupled with a set of practiced belief systems in place. In this excerpt from The Spiritual Journey of Family Caregiving I take a look at a very common scenario: the primary caregiver has brothers and sisters who leave all the work to her:

“My family ought to be doing more! I’m only doing so much because they’re not!”

Consider these possibilities instead:

My brother and sister do less because I’m doing more. You can test this by choosing NOT to be so available. Call a family meeting to determine how mom will be cared for when you’re not there.

My brother and sister do not understand the level of care required. An independent assessment from a doctor, social service agency or care management agency might be helpful to get everyone on the same page.

My brother and sister do not agree with me about how best to provide the care mom needs. “They would put her in a facility and I won’t let that happen! They would leave her alone more often and I won’t do that! They would...and I won’t....” Under these circumstances you may need to accept that you have different beliefs about what’s needed and that you choose to act on your beliefs despite your family’s lack of agreement.

Unless something happens to change their belief systems, you cannot expect them to cheerfully shoulder more responsibility. As I said earlier, you cannot force someone to caregive against their will, at least not without major repercussions. So accept any help they choose to do as a gift. And do what you can to gently and respectfully provide information about your mother’s condition. But know, that if nothing changes, you might need to make a different choice about how YOU approach caregiving. That doesn’t mean that you would be wrong and they would be right. It means accepting things as they are—funky family dynamics and all—and being prepared to make different choices as time goes on because of it.

The Spiritual Journey of Family Caregiving is available online. Click this link to buy it now.