Taking Care of the Caregiver

How can a caregiver maintain energy and spirit while caring for the dying? It is one of the questions we discuss at screenings of my film, Caring for Dying: the art of being present. Here are some tips:

1. Regularly check in with yourself. Take slow, deep breaths and look inside. How are you feeling? What do you need? Can you do anything that will help right now? This is an exercise we would all do well to practice even if we are not caregivers.

2. Take a mini-vacation. If friends and family are unable to help you with this, check out support organizations in your local community. Some may offer caregiver respite. Hospice volunteers can provide short-term breaks that allow the caregiver to simply rest. Once you have the respite in place, use it! Have a bath, take a nap, visit a spa, go for a long bike ride -- whatever helps.

3. Use modern technology. One woman advises texting daily updates to family rather than talking on the phone. After a day at the hospital, one is usually too tired to deal with phone calls. Texting fulfills the updating needs of family, instantly, with minimal effort. Cell phone are available with a keyboard, for the digitally-challenged.

When a close friend of mine was dying, I regularly emailed her support team and all the out-of-towners. It was not always easy to face my computer at 9 or 10 at night after a long visit at the hospital. Texting throughout the day might have been better, particularly since the verbal expectations are not as great as they are with email. On the other hand, I am happy to have all the details of a very special time, preserved in my messages.

Another person suggests setting up a facebook-type webpage where people can post photos, videos, family updates and stay in touch with the person who is sick, particularly when long distance precludes face-to-face visits. The website, Lotsa Helping Hands, provides an on-line calendar where friends and family can coordinate volunteered time and services with specific requests of the patient and caregiver, e.g. meal, coverage, transportation, laundry, house cleaning, etc.

4. For those less computer literate, designating a go-to-person is a simple low-tech solution. The go-to-person receives all the updates from the caregiver and then shares the information with any friend or family member who calls in.

5. See the links on the Resource page of my website for more information about caregiving.

These tips are just a start. Please share your own sanity-preserving techniques. What has worked for you? What didn't?

Caring Attorneys

Recently, I did a screening of my film, Caring for Dying, for a group of South Bay estate attorneys. I learned a couple of things worth passing along. The lawyers were not anything like the wizened, vampirish lot depicted in Dickens’ Bleak House, who drain away your inheritance in legal wrangling until there is nothing left. They are actually committed to creating a plan that not only satisfies the final wishes of the client’s but also reduces the squabbles among the heirs.

Of immediate interest to me, is the estate attorney's relationship with the dying. I had never thought about it, but dying is often the state of the client when he/she finally gets around to making an estate plan. The term “estate plan” rather than “will“ is the term in vogue as other inheritance vehicles like “trusts” have gained popularity. “Estate plan,” more general than the term “will,” also cleverly conceals its association with death. People, however, do not seem to be deceived and, like everything else related to death, put it off until it is unavoidable. My dear friend Marianne did not get around to her “estate plan” until she was in the hospital heavily drugged on pain medication. I suspect she believed that writing her will was tantamount to giving up on life, something she steadfastly refused to do until the very end. Fortunately, she lacked sufficient property to inspire any litigative greed; by the time she composed her will she lacked the “sound mind” required by law.

Establishing “soundness of mind” is one of the hurdles a client and his/her estate attorney must get past in creating a litigation-proof estate plan. If you wait until you are dying, really dying like Marianne, that can become an issue. Of course those of you with children are probably on top of this, since you naturally want to make sure your children are cared for in the event of an untimely death. But those of us who have no immediate heirs may feel indifferent to the task until death is poking us in the eyes. This is not the best time to be making such decisions. Dying can be a very exhausting process and not conducive to clear thinking.

Another important concept relevant to an estate plan is “undue influence.” Undue influence is basically someone hanging over you while you are writing your estate plan and convincing you that their ideas are superior to your own. Others' influence prior to the actual creation of the plan, such as months of caregiving or other service is fair game -- although it can become a point of argument in a lawsuit when coupled with the issue of “soundness of mind.” For this reason the responsible estate attorney should meet the client alone when discussing the terms of the plan. Meeting alone is not always easily accomplished when the client is ill and fragile and has come to rely on family for support and communication and/or the family see itself as the client’s protector. The estate attorney must navigate the choppy waters of family dynamics always remembering who the client is. If the client is slow in thought and words and a helpful child is willing to translate, the waters can become very muddy indeed.

The likelihood of a contested estate plan is greatly increased when substantial property is involved (i.e. enough property to warrant the expense of an attorney) and the division of property is uneven, or perceived as uneven, by the likely heirs. There are some tricks for discouraging litigation but even these are not failsafe. (see Phillip Campbell, Esq.’s article Bulletproof Estate Plans)

This concern about undue influence made me wonder about my own family experience following my mother’s death. While there was never any threat of litigation, there was plenty of dissension and even a family split that never truly healed. Might this have been avoided had my mother used an estate attorney instead of her attorney daughter? Certainly it would have cost more, but would it have been worth the price? There’s nothing quite like an impartial third person to reassure us that the plan, if not what we hoped for, was according to the wishes of the one who made it. Something to bear in mind if you have children.

What most humanized estate attorneys for me was hearing about their skill in balancing the social needs of their client -- which could be considerable after weeks of lying in bed -- with the more onerous task of creating the estate plan. California law requires that estate attorneys charge “reasonable fees” for their services. They simply cannot charge for all the hours they invariably spend at a client’s bedside, or the bill would quickly become unreasonable. One estate attorney recalled having to forfeit numerous weekends, while working for a large firm, to make up the “billable hours” that were lost while listening to client stories. I was impressed by her generosity and care for her clients and at the same time wondered if this balancing problem was specific to FEMALE estate attorneys. Might they not be more readily cast in the role of caregiver and taken advantage of? I could imagine a very business-like MALE attorney deftly silencing his client’s outpouring with a stern glance. But apparently I am wrong, it is a universal issue for all estate attorneys. When dealing with the dying, a certain amount of nonbillable time appears to be inevitable so that the necessary trust and required dialogue unfold.

Please share your thoughts and experiences with estate planning. Have you formalized any plans yet? If yes, how did you go about it? If not, how likely are you to use an estate attorney in making your plan?

People I Met at the Funeral Fair

As I promised, here are further details about the Green Funeral Fair that took place at Grace North Church in Berkeley last November.

Jerrigrace Lyons came all the way down from Sebastopol to extol the benefits of home-based funerals. Her organization, Final Passages provides workshops on a very low-cost, hands-on alternative to traditional mortuary services. I met Jerrigrace back in 2001, when I was interviewing for Secrets of Life and Death. Her explanation of the value of touching a loved-one's dead body came back to me when I went with my family to see my brother at the mortuary after he died suddenly and shockingly in May of 2008. She said that when you touch the dead you really get it, in a visceral way, that they are no longer present. So I touched my brother's serene face peaking out of a black body bag (this was not an official viewing). His skin was very cold. My eyes insisted he was only sleeping but my fingers assured me he was gone. And maybe because I touched him, others felt able to do the same. I think it helped. Jerrigrace has been busy training other people in her line of work, and some are even setting up shop in the East Bay.

There were a number of tables selling books about death. One in particular caught my eye called A Graceful Farewell by Maggie Watson. Its a workbook that helps you organize personal, financial, insurance, medical and legal information. A little daunting in it's scope and size. But, I am sure any caregiver and/or executor would be thrilled to have such important information so ready at their finger-tips rather than having to sort through a pile of unorganized files and envelopes.

Other end-of-life support services at the fair included, estate planning (you'll hear more about these unsung heroes in my next blog when I write about the film screening I did for estate planners in San Jose), geriatric care managing to organize the daily needs of aging parents and obituary writing for those who would like more than "born, died and succeeded by."

Of course there were funeral products galore: fully biodegradable Final Footprint eco-caskets by (did you know that cremation uses upward of 4000 megajoules of energy?); Green Burial Products; and high-end Funeria art urns and Memory Markers.

Also worth checking out is the Funeral Consumers Alliance which has a nifty little pamphlet on recycling medical equipment including those pricey pacemakers that are such a waste to throw away when they might be of great benefit to some needy person in the third world. Search on their website for "recycle medical" for the link to download a pdf version.

I wish I could tell you more, but I did have to spend some time at my booth.

Green Funeral Fair

After a month of speaker events on death, Grace North Church of Berkeley culminated their ground-breaking (pun intended) program with a Green Funeral Fair.

I shared a booth at the fair with the volunteer coordinator, Merry, from Sutter VNA & Hospice where I am a volunteer. She was pushing advanced care directives and telling people about hospice volunteering. I brought a laptop with my film trailers and some DVDs. Didn't manage to sell any DVDs, but met a lot of nice people.

Vendor booths were all upstairs in a large room. On display: eco-caskets, funeral shrouds, home-based funerals, memory markers, high end art object urns, obituary writing help, books on death, caregiving and organizing, and more. I'll be sharing more information on these booth in subsequent blogs. As a tease, I've given you a couple of links. Stay tuned.

In addition to the upstairs room with all the vendors, the church sanctuary below had a full day of events and activities including: mask making, coffin painting, sugar scull decorating, wheat weaving, paper-flower constructing, live music, a sing-a-long with the Threshold Choir and a funeral hat parade and contest which I participated in, but unfortunately didn't win. Too bad. It was a $150 prize. The woman in the black veil won. There was a prize for the men too. With only three male entries, a much easier competition.

I had a great time meeting all the vendors. You can see my photos on my facebook site for Secrets of Life and Death (I hope the link works, if not, just search for Secrets of Life and Death in Facebook).

Congratulations to Grace North Church on trying something very different. Hope they do it again next year.

Hierophant and the Ego

The hierophant card of the Tarot was the subject of a recent discussion I had with a friend, a Sufi dance teacher. She said she always draws a blank when it appears in a reading. Historically, the card refers to a traditional religious leader. It certainly did not fit with any idea she had of herself or her dance work.

A student of hers, an anthropologist, offered an intriguing interpretation of the card: the hierophant as the giver of blessings or benedictions. Benediction, in old sense of the word, suggests a dual motion of ascending prayers and descending blessings. Up and down, up and down between heaven and earth, a lot like breathing, only a celestial breathing. The hierophant, in this view, is the instrument or intermediary of the heavenly blessing or heavenly breath. While a much more dynamic vision of the card, I had some reservations. Below are my musings as addressed to my friend (with editing).

In the William Blake tarot deck, the hierophant is called Religion. It recognizes the human need for spirituality and warns against the rationalization or codification of spirit through organized systems of religion. Blake had no great love for organized religion. In the Sufi work (according to the work of Sufi Master, Adnan Sarhan), the dance must always come from the moment. As long as you stay in the moment, the energy of spirit flows. The hierophant card can be seen as a warning against "the ego,” the ever lurking enemy of the moment. As soon as one thinks of oneself as "something special," i.e. “religious leader,” the moment vanishes into intellect and ego.

It can be dangerous to see oneself as a mediator or intermediary between your students and heaven. It is really a very traditional view -- that ordinary people cannot connect to the sacred or divine except through the intercession of a priest or spiritual leader. People do not need a mediator because heaven is inside, not outside and above. We do not need an intermediary to the divine because we all are part of the divine.

When a teacher is in the flow of spirit and students are in the vicinity of that energy, their own spirits are entrained. That is the dynamic of the Sufi work as I understand it. When in the moment, one vibrates at a higher frequency. That vibration stimulates or induces a similar vibration in the others. Like plucking a guitar string, the near-by strings also begin to vibrate. The stronger your vibration, the greater the effect. Eventually the students learn to vibrate on their own and thus access their own spirit. Of course the vibration is always stronger when surrounded by the vibration of others flowing in the moment. This is doubly true when near to someone strong in the practice of being in the moment.

The trick and warning of the hierophant is to be a teacher and yet not fall prey to the ego of teacher. Yes, all of the things you must do as teacher are true, like holding the space and making people feel safe and stepping in and taking action when someone falls out of the space, or disrupts the space. So it is necessary to acknowledge your self as a leader or teacher. At the same time, it is heady to be in the front, having people attending to your every word and action. The ego lurks.

In a way we are all teachers. We teach each other important lessons every time we come together (as in The Celestine Prophecy). Being conscious of being teacher is essential, but in an active way, in the verb sense of "I am teaching" as opposed to "I am THE TEACHER." As teacher, which in itself is an active noun, one enters the energy field of teacher, which included space holding and wide attention. Teaching in this way can bring you into another level of consciousness. You attention is alert, you are totally focused and aware, but the focus is outward or, perhaps to put it better, your “inside” expands to encompass the outer boundaries of your group. The group becomes your body and you are the brain or maybe the heart of that body. There can be no thought of the future or past. You must be totally in the moment, feeling through every sense and responding to each moment through intuition or what Adnan calls “intelligence.”

When I am facilitating a grief group or doing a screening/discussion of my films, I connect with the essence of the goddess Demeter -- mother goddess, all encompassing, watchful, loving, insuring her children are safe and growing. When I think of her, I connect to the love part of teaching. As long as I am in that love and in the doing, I can keep the ego trap of the hierophant at bay.

The Art of Being Present

At a screening of my film, Caring for Dying: the art of being present, there was a discussion on, well, the art of being present. When asked how one goes about "being present," the people in my audience had no ready answers. Yet, when I asked them to take a moment and check in with themselves, they quietly closed their eyes and looked inside. Perhaps they thought I was asking for something more esoteric. But no, being present is as simple as checking in with your self. Take a moment to look inside, feel your body, observe your feelings.

The problem is, we forget to do it. We don’t check in. We’re too busy, too worried, too uncomfortable and maybe too afraid. Afraid? Yes, I think so. Ever notice how uncomfortable people are with long silences or with having too much time on their hands? Don’t you take a book or magazine along when you expect to wait somewhere? We are afraid to look inside, afraid of what we might find, of what we are really feeling. That we really hate what we are doing, or we’ve screwed up or wasted our lives, or we are bored with our partner, tired of our children, unsure where we’re headed and we’re angry, pissed, sad, or just plain unhappy. Whoa, let’s not go there! Turn on the TV, call someone on your cell phone, clean the refrigerator. The irony is that there is really no fear in the present. There is no judgment, no shame, no blame. There is just -- presence. However (and there always is a however) to get there you might have to tamp down a lot of negative mind-noise first, a lot of internal ugly, judgmental monologue.

Eckart Tolle, the guru of the "present" and author of The New Earth and The Power of the Now, calls that mean, negative internal voice “the ego.” This is not the positive ego of “self esteem” fame, but closer to that “Whew, that guy’s got one big ego!” kind of ego. And, while we’re pointing a finger, be aware that we all have big egos, only they rarely make us feel big and important. Mostly they tear us down. And if they do build us up, tomorrow it will be down. Bet you that guy with the “big ego” is constantly being blasted by his, that’s why he’s so desperate to convince you and everyone else what a hotshot he is.

I like Tolle’s use of the term “ego” because it is the same word my Sufi teacher uses to refer to the “negative self.” -- the self that tries to sabotage all my efforts to hang out with my spiritual self. I already know a lot about this ego self. It’s what makes us worry about how we appear to others or how we measure up to some internalized value system of achievement. It is the voice that makes us uneasy and stressed. A low level hum of disquiet, “What did I forget?” “Please don’t let me screw this up!” “Oh God, I can’t believe I did that!” We run from this voice by staying busy, watching TV, drinking, eating or doing drugs -- anything to numb or dull the voice. But it never really goes away. It’s always in the background nipping at our heels.

The only real escape from the ego is to see it for what it is, to name it, recognize it and in doing so, to enter the moment. It’s my ego that’s making me feel bummed about the funding grant I didn't get for my film (that I didn’t have a snowballs chance in hell of getting any way.) Hi, Ego! Sounds easy. It is and it’s not. The ego is very strong, wily, willful beast that will not give up without a fight. The ego wants to be in control. I like this idea of an ego beast. The ego as something separate from ourselves. Years ago when I was working on my Ph.D thesis and getting booted out of my first teaching job I drew a picture of this snarling monster riding on my back. This was long before Sufi or Eckhart Tolle. I already knew inside what the ego was. I just didn't know how to get rid of it. I didn't know about the present.

Staying in the present takes concentration and discipline. The ego is always there slipping in thoughts about the past or future, worrisome thoughts about what you should really be doing or what you forgot to do. Each time the ego throws in these thoughts you have to pull away, stop the train and return to the emptiness of no thought. That is basically the essence of meditation. Of course it’s difficult to focus on nothing, so typically you focus on something like the breath or a mantra or a visual image. It takes practice. It takes the will to do it especially when you're feeling awful and would rather eat some ice cream.

There are other doors to the present – really any activity that puts you wholly in the moment of here and now, will do. Playing a musical instrument can do it. Dancing does it for me as long as I can stay away from the thought that other people are looking at me and maybe I should change what I’m doing because I’ve been doing the same stupid move for the last ten minutes. Opps, just lost my footing. Mountain climbers enjoy this focus because a momentary lapse could mean death. Nothing like a strong motivator. Unfortunately, we can’t run off to the mountain every time we need to check in with our self. And we really should do that a lot -- every time we feel stressed, or stuck or anxious or sad. Because those are all signs of ego intrusion. That’s why I like using the breath. It’s so portable.

The Breath is always there. Waiting for the bus? Breathe in, watch where the breath goes. Stumped on the next sentence for your funding proposal? Send the breath to various parts of the body. Notice how each area of the body feels. Had an argument with your partner? Play with the breath. Breathe in for five counts, hold for five counts, breathe out for five counts, hold for five counts and repeat. Lots you can do with your breath. Breathe until the mind empties and the heart and stomach feel calm. Enjoy the peace.

One more suggestion -- keep reading books, watching movies, talking to friends, writing blogs that encourage and remind you to stay present.

Word Power

The conversation at lunch began with polar bears and morphed into a discussion on the nature of gossip. Someone had read that a polar bear had successfully mated with a brown bear in the wild and this was a hopeful sign as the brown bear may be more adaptable to climate change than the polar bear.

How we got from bears to gossip is a bit complicated but had something to do with the need for humans to secure their own survival. We were all in agreement that humanity is at some risk given its slowness in responding to current environmental warnings. Then I brought up Don Miguel Ruiz’s Four Agreements, as a way of transforming us in positive ways that might be beneficial to our survival. The four agreements are: 1) be impeccable with your word; 2) don’t take things personally; 3) don’t make assumptions and 4) do your best. You may ponder for a moment how sticking to these agreements on a world-wide basis might play out.

Our discussion never got past the first agreement: be impeccable with your word. Words are powerful, according to Don Miguel. So watch what you say. Need I convince you about the power of words? You see it readily in advertising, politics, and the current media war over the Obama’s healthcare initiative. Government control vs. insurance company predation. We use words to define our reality.

The power of words also operates on the personal level as we define and judge ourselves and our friends in daily interactions. I casually say I’m no good at sales marketing and BOOM, it is so. A companion complains about the movie we are watching and KAZAM, I no longer enjoy it. Does it work when we say positive things too? That's what the power of positive thinking is all about. Sociologist Alfred Schutz, called this phenomenon the social construction of reality. We are continuously creating meaning and sustaining our social reality through conversation and on-going social interactions.

Gossip is one of the ways we use words in our social interactions that Don Miguel warns against. Simply put, we should not gossip about ourselves or anyone else. Oookay. But wait, what, exactly, is gossip? Is it only when we say something negative or judgmental, like “She’s so prickly, you can hardly say anything without her taking offense.” Our lunch group all agreed that this is clearly gossip. But what about positive comments and stories about someone? Is this gossip too? Don Miguel tells us yes, this too is gossip. Don’t do it!

Gossip, even when it is intended to be positive, might be misinterpreted or misconstrued in a negative way. A member of our lunch group gave an example. When she was a child her mother would say to others (about her), “Oh, she’s so creative.” At first blush, this statement would seem pretty positive. But the woman always wondered if it was not a cover-up for some awful inadequacy. Perhaps she was not very bright and being “creative” was her compensation. Oooh, we all nodded our heads, getting the idea. We could inadvertently hurt someone by talking about them even when we think we’re being positive. And certainly in the case of positively gossiping about yourself, you might be perceived as bragging or full of ego, not the intended consequences at all. Ok. OUT WITH ALL GOSSIP!

Uh, have you ever tried to give up gossip? Dang, it’s hard enough to give up even the negative gossiping. Are we really being asked to refrain from all storytelling? What will we talk about? How will we keep up-to-date on all our friends? Ok, we could check out their facebook and twitter entries. But come on, it’s not the same is it? Besides, I like the stories we share about what is going on in each other’s lives. Could there be a gender bias here? I’ve noticed that my husband is not much of a gossiper. He’ll talk on the phone for an hour with a mutual friend and then I get two sentences out of him about what’s up. Don Miguel, give us gals some slack here. What if we purge our stories of all judgment or opinion. “Nothing but the facts, mam.” Like ah, like a NEWS REPORT! Ahhh, yesss. One can certainly see the potential for self-delusion as we slide down that slippery slope.

Last defense! Story telling is a great way of conveying important lessons, insight and discoveries. Like the example I gave above of my lunch group friend -- much more effective than explaining things theoretically. But wait, you don’t know who she is, so maybe that’s not gossiping.

I’ve been struggling with this for several months (hence the lag in my blog entries). What do you think? Try not gossiping for a day and report back. But remember not to gossip when you do.

And what does all this have to do with death? Can we gossip about the dead?