The reason for my reluctance has been mostly due to the purpose behind this blog, not because I am unclear about it, but because of my own discomfort to encourage people to spend any time focusing on death except as a very good way to put things into perspective. As I explain on the “about” page, I am attempting to get people to think about end-of-life (EOL) caregiving issues before they are smack in the middle of them. Why? Because that’s a horrible time to get up to speed. That’s what happened to me and I don’t want to see that happen to others.

Still, I am more inclined and comfortable to encourage people to think about life, so to get people to think about the dying process has been a challenge and the reason I haven’t broadcast this site too widely. Thankfully I have connected with some wonderfully dedicated and talented “caregiver” bloggers who’ve provided camaraderie and tons of encouragement to keep me going.

But now that the cat is out of the bag among my friends, it has forced me to come to grips with my discomfort. My conclusion is a non-deterred one; that I am not taking people away from focusing on life but just prompting them to take some time to prepare for what is inevitable. After all, when we go on a long vacation we always take the time to prepare without any philosophical fanfare. We hold the mail, maybe unplug all electrical items, call our neighbors to let them know to keep an eye out for the unusual, postpone our newspaper subscription and so on. A couple of major differences is that we don’t know when this vacation will occur and it’s permanent.

To quote Rosalynn Carter, “There are only four kinds of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.” With caregiving being such a certainty, where is the much needed education? It’s out there but the encouragement… no, encouragement is too weak – the shouting out about the importance of it hardly exists - and I can totally understand. It’s just plain uncomfortable to verbalize urgency for people to focus on the implications of dying. It reminds me of the last segment of Monty Python’s The Meaning of Life when the Grim Reaper pays a visit to people having a dinner party. Everyone around the table is attempting to include the Reaper in their banal conversations, offer him drinks and so on until the Reaper gets frustrated and tells them he’s there to take them and declares  “I am death!”. One of the guests turns to everyone else and says in a very understated way,  ”Well that rather casts a bit of gloom over the evening, doesn’t it?”

In a paper entitled Families and Elder Care in the Twenty-First Century, the authors note that, “For most of the nation’s history, caring for the elderly was a family affair carried out largely by women in the home. As the twenty-first century unfolds, however, elder care in the United States is an increasingly complex enterprise, with much personal care outsourced to paid, non-family caregivers.”

The way our society has evolved families are not as tight, women are making careers and families are smaller. When you combine that with a massive increase in the number older people (in the USA an increase of 11 times in just the last century), who are living longer and who’s number continue to grow, you don’t need to be a sociologist to figure out that we are in the midst of a wave in which either professional healthcare services are going to have to expand enormously, or families are going to end up taking up some of the slack – and they already are. Even an amazingly high number of young children are finding themselves as primary family caregivers today.

I was taught nothing about caregiving.  My impressions made it appear messy, complicated and something I was not hoping to ever do.  In my own imagination, and based on my experience, when a person became extremely sick they simply ended up in the hospital. There they could get around the clock attention and would eventually live or die. That’s the way my parents went – in the hospital. Caregiving for my parents meant showing up at the hospital, hanging out with them, talking with the doctors, running a few errands and hoping everything worked out okay. Both my mom and dad seemed comfortable enough.  But things are shifting; more people than ever want to die at home. They want to go peacefully, if possible, in a familiar and warm environment.

There’s a free online caregiving course called “End of Life” offered by Stanford University in which they refer to studies showing that approximately 80% of Americans would prefer to die at home. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home. A minority  of dying patients use hospice care and even those patients are often referred to hospice only in the last 3-4 weeks of life.

So who’s going to do all this “caring at home” when we are all so busy and so few?  It’s no surprise that only 20% of the people get to pass away comfortably at home, our system and culture (at least in the West) tends to push us in that direction. And for those who do I wonder what the experience is for the caregiver. I’ve noticed that most of the news articles you will find on caregiving, day after day, have to do with caregiver burnout. That should be telling us something.

Since having had my own EOL caregiving experience I have spoken to so many people who went through the same thing but with their own twist. Nonetheless, like me, they were unprepared and now, many years later, are still deeply affected by the experience. The grief that follows is understandable, but the experience of caregiving for us non-professionals is so often unexpected containing the sublime as well as unyielding strain and daily surprises. Afterwards you carry around powerful and indelible memories. The lack of knowing and preparedness manages to compound the difficulty and takes away from the entire experience being one of magic. Sounds surprising to use that word “magic”, doesn’t it? But EOL caregiving is just that – magical, and those who have been through it, and go through it daily, know what I mean.

So, though it’s far more comfortable keeping the topic of death under wraps, the situation is that we are all going to have to face a caregiving situation or be cared for. As a potential caregiver it is to our advantage to know what we are going to be dealing with not only physically, but emotionally and “spiritually” as well.

There’s a fear that focusing on death or talking about it may bring it on sooner. I also feared this. I never wanted to give K the feeling that she was terminal, and in my own denial I actually believed that she’d turn things around. Thankfully K was far more pragmatic. Even if it’s true that our mentality can make a difference, at some point it no longer does. And though preparing for caregiving may seem like something we can put off indefinitely, getting educated is important and something we must do. There’s little choice. It’s either sooner or later, and later means under duress.

So, I want to thank my friend Joan for posting a link to Conscious Departures on Facebook. I created this blog because I was thinking of my friends and family anyway. Since I am feeling quite passionate about being prepared early for an EOL situation I may as well be out in the open about it. And for those who are already in the middle of it I hope you are finding valuable support in your community and out in the virtual community as well. With hospice care and the growing wealth of on-line resources you can go about your task with greater ease. You can always check out my resources page for more.

One day it reached the point, in K’s cancer evolution, that she needed a hospital bed. We have a nice large king sized bed but she was rolling around in it so much that you wouldn’t know where to find her next. At the end of one day I actually found her pivoted 90 degrees and scrunched against the wall. The hospice nurse recommended we get a hospital bed brought in to make sure she didn’t roll onto the floor and get hurt. Great idea, and something I would never have considered on my own. A hospital bed has bars on both sides, much like a baby crib, with the ability to raise or lower the head or legs. The hospital bed came along with the hospice services, which made it incredibly easy to do.

The bed was brought over and I had it placed in our bedroom. The guys who deliver the bed are fine to set it up but they are not qualified to move anyone onto it. K was not walking around at that time either, so it wasn’t a matter of helping her shuffle over and hop in. They said I needed to call the fire department to have her moved. The fire department!? I just couldn’t imagine having the fire department come roaring into the neighborhood, with a team of big beefy guys stomping into the bedroom to move her. No way I was going to do that, it would have totally freaked her out.

I gave it some thought and decided to move her to the bed myself. I am strong and fit and K was down to a very light 80 pounds. My biggest concern was her neck because she barely had the strength to life her head, if at all. I worried that in her frailness her neck could snap or strain if I did not support it well during the move.  I stood there for a while strategizing how to do it with the utmost care. First I made sure the hospital bed was all set with new sheets, special cushions and a pillow. I let the bars down and took a deep breath. This was a small thing but I can’t tell you how risky it felt.

I went over to K. She was conscious and staring at me. I told her what it was I was about to do and why. Not seeing any any alarm or revolt in her eyes signaled she was game. I took a deep breath and decided to go for it. I got under her carefully with my arms, cradled her head on my chest, so that it wouldn’t flop backwards, and gently put her to rest in the hospital bed. Everything was fine and it took less than five seconds. For such a small thing it was an amazing bonding experience. Well, it may seem like a small thing but not when you are in the middle of it and untrained. Looking back I should waited and called our designated hospice nurse for advice. I was very lucky that it worked out okay. I shudder now when I think about it.

A few days later, while caring for her, I needed to lower the bars of the bed so I could maneuver more easily. I pulled the latch to let the bars drop down but a little red flag in my head went off stopping me from letting them drop full force. The bars had some serious heft to them so I lowered them gently all the while watching her face. After easing the bars down I saw K’s face take on a disturbed and agitated look. Clearly something was wrong. Then I noticed – I had lowered the bars onto her right wrist!  She had been laying there grasping the bars as if she were holding someone’s hand, but I hadn’t noticed, and so the horizontal support of the bars landed on top of her wrist. After seeing her expression it took a moment to figure out what the problem was and I immediately lifted the bars back up. I was terrified that I may have broken her wrist, but luckily all was well and the scowl went from her face. Thankfully, not only had I lowered the bars slowly but there was tons of soft padding between her hand and the bed. That one moment of being slightly conscious about making abrupt actions may have saved the day. Still, I was totally distraught and emotionally drained about this for days afterwards. K was very lucky to escape the potential harm of my amateurishness.

Back in October the AARP Public Policy Institute and the United Hospital Fund came out with a study entitled Home Alone: Family Caregivers Providing Complex Chronic Care that had some discomforting findings. In the executive summary it says, “Family caregivers have traditionally provided assistance with bathing, dressing, eating, and household tasks such as shopping and managing finances. While these remain critically important to the well-being of care recipients, the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once provided only in hospitals.” And the report shows that many non-paid caregivers are frightened and overwhelmed with the level of care they end up having to provide these days without training.

I can see great value for today’s family caregiver to get some basic training. It was something that would have given me more confidence and ability to respond more competently. Caregiving someone can be too complex to simply consider winging it. If anything terrible happens to our loved one due to our own inexperience and lack of training we’ll find ourselves haunted by it for quite some time.

I wish I could say there’s a lot of training support available but actually it’s not that easy to find unless you are ready to spend a lot of money. I’d suggest the first place to look for basic training programs would be with your local hospices. From my limited experience, and from speaking to others, you will find they are aware of many resources, offer quite a bit of services and will go the extra mile to help you.  I found that some community colleges offer courses which, although they cost money, look like they are a good value.  Also, check in with any universities or medical schools nearby. For instance I found that the U of Nevada School of Medicine held a free workshop for elder caregiver training specifically for the family caregiver. Programs like this may happen frequently, but you need to be proactive in seeking them out.

If anyone reading this has other ideas as to how a family caregiver can get some basic caregiving training without breaking the bank it would be much appreciated. Please weigh in.

Tablets: Just talk your way over to a holiday goose.

With the holiday season in full swing I am receiving enough sales and gift catalogs to fill the Library of Congress. Even Twitter is reaching out to me to buy something. I saw a tweet the other day that said “jeans that tweet.” What?  I couldn’t resist. So I clicked on the link which took me to CIO magazine’s 10 Twitter-Inspired Gift Ideas for the Holiday. Some of the items you can get are things like a Twitter Fail Whale Mug (you have to use Twitter to come even close to understanding that one- but it’s cute), or a “Stop Following Me” license plate. Then, of course, there are the Tweeting Jeans. What the jeans do is monitor your mood and tweet it out via your Twitter account to all your followers. I guess my followers might get a tweet right now that says, “IJ’ is dumbfounded and is in a snarky mood.”  So watch out.

You have to hand it to all the 5 hr energy fueled entrepreneurs out there. As the Cable Guy says in a recent commercial these folks are inventing things we “didn’t even know we needed.” But as one who has always felt comfortable and fluid around technology, I say go for it. As a matter of fact, while we have such new, great technology infiltrating our lives we need to be looking more carefully how to leverage it into the field of caregiving.

When K was winding down and losing energy she was still able to read, but a trip to the book store was a bit much.  Just getting to the computer in her office was becoming too hard for her, so I went out and bought a Galaxy Tab, Samsung’s version of the iPad. It was great for her. She was downloading books and found them very easy to read on the tablet. Right from the comfort of bed or the couch she had access to thousands of books and periodicals, photos, music and so on. The G-Tab has a voice recognition feature as well, so if she wanted to look something up on the browser she just needed to speak to it. For instance if I tell the Tab,  “I want to buy a goose for Christmas” it takes me right to Sassafras Valley Farms who’ll ship out a free range, all natural frozen goose just in time for the holidays. It’s amazingly accurate, fast and no typing is necessary.

When things got worse for K it was hard for her to get out of bed and at times she’d exhaust herself calling for me to come help. Since I was on the other side of the house in my office I couldn’t hear anything. This was frustrating so I went and got a walkie talkie. That was a big waste of money. It was a decent set but you needed the strength of Thor to press the talk button. Also, on occasion someone would find our frequency and start talking through her handset. She’d be laying peacefully in bed and all of a sudden a scratchy loud voice would appear from some truck driver, scaring the hell out of her. A baby monitor was a better idea but K would move from the bedroom to the living room so I figured we needed something portable. Anyway, that was one thing I didn’t get quite right.  I should have gone for the baby monitor.

These days baby monitors are pretty sophisticated and come with an entire suite of features including webcam with infrared so you can see what’s going on in the dark. You can even get them with temperature and humidity readings. Some of the interesting ones are Withings Smart Baby Monitor, BabyPing, Izon and Foscam. I could have used any of these and it would have been a big help, so long I was in the house.

Another way I could have kept an eye on her was with a simple webcam and microphone set up from one of our several computers. Many households have more than one computer these days and one can be used to keep an eye on your loved one. By staying connected to a service like Skype I could have had a visual as to how she was doing. With a microphone attached we could have communicated both ways by voice as well. With Skype there’s no cost. That may have been a good cost effective solution.

If your loved one is having to take medication at various times of day there are multi-alarm pillboxes. You can keep your pills organized just like other pill boxes but this will sound an alarm to remind you or your loved one that it’s meds time. There’s also a highly rated app for the iPhone called Rxmind Me Prescription which is pretty sophisticated. It will track multiple medications and alert you to take them at the appropriate time. It can also track when you’ve taken your meds and even maintain photos of the particular medication so when the reminder pops up you can see what it looks like. Want to find out about one of the meds? It also comes with the entire FDA Drug Database.

Actually there are quite a number of other iPhone apps good for caregiving and healthcare. I just downloaded one for emergencies. If I were to get, let’s say,  a heart attack or end up in an emergency situation, all I need is about 5 seconds to open the iPhone app and press one big button which will alert  people on my contact list by email with a note I’ve already composed (Help! I’m in trouble!) and will call 911, the police, and the hospital. When my messages and calls go out it also includes a GPS location of where I am. This is great to have if you are alone. It’s called Click2BSure. Of course there is always the Life Alert  (help, I’ve fallen and I can’t get up!) system which requires professional set up and a monthly subscription fee. But it’s endorsed by C. Everett Koop and although Click2BSure is only $1.99 and has no subscription fee it’s hard to wear an iPhone around your neck while bathing.

Tracking shoes. My uncle, who suffered from Alzheimer’s, was lost for days as he wandered Philadelphia. This could have helped his family tremendously.

A wonderful technology supported service  is provided by an organization called Lotsa Helping Hands. This service helps you to organize a group of people to volunteer their time with caregiving. So let’s say you have a friend who’s battling cancer but is alone, you could use this site to organize friends and family to pitch in.  You get a package of tools on their site to help your team of people manage the caregiving. For instance, there’s a “help” calendar which allows members to schedule and sign up for tasks. Your community has a message board to discuss things, a place for well wishers, notice of events, occasions, a place to store vital information and more. All this is a free service! There are some great stories on their website about how it has helped people deal with difficult caregiving situations. There are already 1.2 million community members on the site.

Helping a loved one to move around when they become very weak can be quite a challenge. A couple of years ago Panasonic announced a new product to help. It’s a hospital type bed that becomes a wheelchair and comes with its own hair washing robot. Sounds a bit like something out of the Transformers.  Here’s a blurb from their brochure: “Panasonic Corporation today announced the development of an electric care assistance bed with an integrated wheelchair and a hair-washing robot that drew on the company’s robotics technology. They are designed to help support safe and comfortable living of the elderly and people with limited mobility while reducing the burden of caregivers. “  It sounds interesting but I don’t know if I would have trusted a hair washing robot with taking care of K’s hair. Still, the Japanese seem to be pushing the boundaries on the kind of technology support we can get as we age or need serious care. I’m going to keep a close eye on their work, even though it’s unlikely such products will retail for under $20.

One thing is clear, there are people in the world looking for ways to make caregiving a little less stressful and more efficient through the use of technology. For us non-paid caregivers that is a welcomed thought. I know how easy it is to sneer at technology, but when we are in a caregiving situation having to manage what seems like a million different things, technology may prove to be a way we can more easily juggle it all. We are living at a time when the available technology is still being understood for its capacity to serve us. So, until we lose all electricity I say it is worth looking further in to it. I’d be interested to hear of other technologies you’ve come across that’s helpful. Meanwhile I’m going to try on a pair of those tweeting jeans. Happy Holidays!

I have to admit that I find taking only one day out of the year for a thankfulness celebration a bit thin, but I’ll take it. And, it’s my opinion that we don’t really need a questionable story as an excuse;  any thankfulness will do. Thankfulness is one of those rare economical pleasures we can indulge in at a time when our budgets may be stretched buying the latest high tech gifts which often have a “thankful” life of a few months at best.

This Thanksgiving I was feeling particularly thankful for all the wonderful people who’ve touched my life and contributed something to my personal evolution. Thanksgiving dinner was not only exceptional food-wise, but was also exceptional in the quality and warmth of my hosts and the endearing nature of their family and guests. It’s a great feeling to not only fill your belly with delicious food, but to feel your heart filled up as well.

A good friend of mine, John Chan, was a world class photographer and a frequent contributor to prominent fashion magazines. John died a number of years ago in a car accident after having moved to California. It was quite a blow to those of us who knew and loved him. At John’s memorial I was allowed to take several pieces of his work, but the one that caught my eye was a photographic portrait he did of the great trumpet virtuoso, Wynton Marsalis.  I was a decent trumpet player many years ago and still enjoy listening to great Jazz players, so this particular portrait had additional appeal (plus it’s a great example of John’s unique work).

A few years after taking posession of the photo I had the opportunity to meet Mr. Marsalis while he was doing a concert here in Vegas, and asked if he would autograph the portait. He remembered when the shoot took place and was shocked to learn of John’s death. After taking a few thoughtful moments he wrote “Ira; We are still here!”

It’s a simple statement but how often does anyone stop to feel what that means? “We’re still here!” I would even simplify that one step further and say, “We’re here!”.  If there is one thing losing K has taught me it’s that death is extremist in its ways. Wow, talk about no compromise, there just aren’t any grey areas with death; it’s absolute and unyielding. Yet, I am still here. How is it that I am not a puddle on the floor with my mouth wide open? I am part of an actual, non-scripted miracle in which I am given a small space to exist - and no explanation for it is given.  It’s so obvious that it’s almost impossible to see. I think if we actually understood the fact of  our existence we might run over to our neighbor and say “Oh my God! We’re here!” Instead it seems the focus is in things with so little consequential value. It’s a bit like taking a first-class vacation to the Grand Canyon and spending the whole time absorbed in looking at nothing except cigarrette butts on the walkways.

The stresses a caregiver goes through are relentless and at times overwhelming. Yet, there is so much to be thankful for. Every moment K was alive, even so slightly, was a blessing for her. It was a gift, and she knew it. I think that’s why she took her dying so calmly. Yet, though it was a blessing for her, her presence in this world was also a gift for me and many others. She contributed to the shape of my life and to the deepening understanding I carry today about being human and experiencing human love. She not only taught me things about life but also about the process of dying. She paved the way for me to accept and not fear the inevitable. I was lucky to have known her and for that I am thankful.

That we have an existence, a form and can experience all manner of human emotion is a gift. Maybe during the hard times our lives seems unworthy of thanks, but I have to remember that one day I will no longer participate in what’s going on here and that will be that. With life comes hope. With life comes learning. With life comes a story uniquely my own for which I will be the witness from the first breath until the last. And for that I am thankful.

K trusted me to be her caregiver and it was a great honor to be in that position. It was a discovery on many levels and an opportunity to treasure her company each day she remained with us.  Caregiving has made me a bit more human and more prone to kindness, and for that I am thankful.

So although I will remain skeptical about the origin of Thanksgiving, I don’t feel the same skepticism when it comes to how satisfying it is to feel thanks. As a caregiver, no matter where in the process, I hope you are able to feel thankful for the time you have with your loved one. For the moment, we are still here and they can receive our expression of love. Let’s not squander it; from my experience there aren’t second chances.

As is my routine, I went out early each morning when the streets are empty, to have a brisk walk and to get caffeinated at one of the coffee houses I frequent. After six days of gloom and rain the sun finally broke through one morning. When the sun peeks out, even a tiny bit, it’s celebrated as if it were the liberation of a country from years of bitter tyranny. Even in 48 degree weather people will be out in droves wearing shorts. I even saw a couple of people trooping around in nothing more than a T-shirt that day.

After my morning coffee, I left that wonderful section of town, called the Lanes, and made a left turn onto a main road almost colliding with a young woman rushing to get somewhere. She was wearing rather large headphones connected to a device hidden in her pocket; a smart phone I suspect. She seemed decisively cut off from the world. I was barely noticed and not acknowledged. It got me thinking.

My thoughts on such walks are usually all over the place but in their own fascinating way they always seem directed towards working things out or trying to come to greater understandings. For instance, I was planning to bring K along with me this year and while walking around town, every time I’d pass something that I really liked, I would get excited about sharing it with her – that is until I realized it will never be. I kept going through that thought process over and over again understanding a little more deeply each time that it would never come to pass. My thought pattern was part of a greater process of learning to accepting my loss and no direction was needed from me. In the quiet, distraction free periods of my walk the internal work I needed to do happened quite naturally. And it felt so good.

There was an article I came across recently about how, according to one nurse who specializes in caregiving end of life patients, grieving is a process in which a person seeks equilibrium. Normalcy.  She even refers to the bereavement stage as the creation of a “new normal” ; a kind of homeostasis. I really like that word homeostasis. At its Greek root “stasis” means “standing still”. It’s while standing still that one can observe with greater precision what’s going on.

We live at a time when it’s far too easy to distract ourselves, be in constant motion and not allow a natural inner process to happen. The result is that we give up a lot.  With the process I went through being a care-giver and a constant companion to another human being, I certainly could have benefitted from more quiet time with myself. There’s a time for distraction, but the insights that come as a result of “being still” are invaluable. It’s sometimes scary to be silent and alone with one’s self, but maybe it’s because we’ve made it such a foreign part of our lives. I remember times visiting my father and how uncomfortable he would be if we weren’t discussing something or busy. I spent a day with him once and I swear he spoke virtually non-stop from 9:00 am in the morning until I dropped him off at his home later that night. Whenever there was a moment of silence he just had to break it. On his way out of the car he said to me “You talk so little!”

It is so easy with our myriad devices to plug in, turn on and tune out around the clock whenever the discomfort of silence overtakes us. Ha! I not only travel with a laptop and smart phone now, but I also carry a tablet! How nuts is that?

Now that K is gone I find myself spending plenty of time alone and in complete silence. In the quiet I find I can more easily review what happened and see things that I hadn’t noticed before. I don’t try to do this, it’s automatic when not distracted from myself. I am now seeing things that could have made the end of life process and care-giving even more meaningful and warm for K and myself. I could have seen it then if I had given myself the space. Now it does no one any good. I don’t feel I’m beating myself up over this, I’m simply recognzing the value of the time we can spend with our self and how much it can reveal to us.

Our natural internal intelligence is an incredible gift and seems to have an extraordinary ability to take in a wealth of information and, if left alone, will in some mysteriously way make sense of it and show us our next step or reveal what it is we’ve been trying to see all along. It really amazes me. Have a happy Homeostasis.

He founded Paradigm Programs Inc, an innovative nonprofit organization with a mission to be an outreach and resource for terminally ill, chronically ill, elder and dying people. He was honored with the prestigious University of California San Francisco Chancellor’s Award for Public Service in 1999 for his work with sick, elder and dying people.

His book is a valuable contribution to the body of work available for coming to terms with end of life issues and one I wish I had when K was alive. Having been the primary caregiver and the one person who was with K day and night using a tool like this would have been invaluable. There comes a point where a person just doesn’t have the strength to do much, but they still do want to communicate. I could imagine K and I reading it together (me reading it aloud), and doing the exercises.  It could have provided a great format for the both of us to have those important and uncomfortable, conversations in an engaging way. At the very least it would have provided us a good platform to work with.

This is not a passive book. Richard Wagner takes an approach that makes the reader part of the story.  In it you become one of the participants in his work group along with a number of people coming from different cultural backgrounds dealing with a variety of issues from cancer to old age. You are a participant, not a fly on the wall, and if you allow yourself to enter his world and take the exercises to heart you will find yourself going through a very fulfilling process. For this reason I feel that this book must be approached when you or your loved one has the appropriate energy and mental acuity to take it all in. There are 10 members in the group, and if you intend to follow their contribution to the group it takes some effort.

I was so impressed with Richard’s approach and the experience behind the book that I felt I needed to meet him and do an interview. We met by phone. Here are his responses to my questions:

IJ: In your years as a health professional, what do you consider the biggest lessons you’ve learned about caring for someone with a terminal illness?

RW: I tend to lump health care professionals into two groups — healing and helping.  As a psychotherapist, I consider myself as part of the later group — those who help.

The biggest lesson I’ve learned is that precious few of us are able to face our mortality on our own.  This tends to complicate an already difficult situation, because few of us who are facing our mortality have people around willing to walk through this with us.

When I started to be present to sick, elder and dying people some 30+ years ago I began to see certain patterns develop.  Despite the uniqueness of each death I noticed two things that all these deaths had in common; they were difficult and lonely affairs.  Difficult because, in our culture we have a hard time recognizing when things are coming to an end, especially the things we enjoy.  This is a problem because being unable to acknowledge the end of something makes saying good-bye and thank you virtually impossible.  They were lonely affairs, because those who were dying often felt useless and disconnected.  It was like they were dead before they were dead.

IJ: How has this affected you personally?

RW: This had a profound effect on me.  Because I soon began to realize that the marginal status our culture assigns to the end of life, with all its fear, anxiety, isolation and anger is inevitably what each of us will inherit in our dying days.  I either had to come up with an alternative approach, or I would crash and burn.  I saw so many valiant fellow healing and helping professionals burn out; they just couldn’t face their inner turmoil and grief any longer so they had to leave the work they were doing.  And I did not want that to happen to me.

I figured there had to be a better way to deal with this fundamental fact of life.  So I decided to take a fresh look at my own mortality, because that seemed to be the most likely place to begin if I wanted to help others face their mortality.  In time, I became less anxious.  The monstrous thing I feared for so long was being transformed.  I was able to sit with death and not be afraid.  Death was no longer the enemy, she was becoming what St. Francis called her ‘sister death.’  Besides, death links us to the great round of nature.  I found that comforting.

When I began to ask the sick, elder and dying people I was working with if they wanted to join me in this endeavor I discovered most were up for the adventure.  I mean it was a no-brainer for most.  They knew better than I that few opportunities exist for them to connect with others similarly challenged in a purposeful life-affirming way.  I was encouraging them to take a lead role in orchestrating their finales; they were no longer expected to be unobtrusive, dependent on the kindness of others and to wait patiently for the curtain to fall.

IJ: What was your goal and inspiration behind writing the book The Amateur’s Guide to Death and Dying?

RW: Let me take you back to the early 1990’s.  I was successful in getting some like-minded people together for mortality-oriented support groups.  Initially there was some resistance, however, because most of the people who joined my early groups were only familiar with disease-based groups.  People with cancer met with other people with cancer if they met with anyone at all; people with HIV only met with other people with HIV if they met with anyone at all.  But I was proposing something really radical.  I was suggesting that facing one’s mortality had very little to do with a disease process, it had to do with simply being alive.  I had to keep reminding them that the thing that connected us was our mortality, not a disease, or aging process.

I figured if our focus is our mortality, we wouldn’t get bogged down with the medical issues we faced as “patients.”  This freed us up to find practical solutions to the end-of-life concerns each of us had.  And we would be able to receive the support we needed to design our own strategy for successfully navigating our final life passage.

By the mid 1990’s I had enough of these groups under my belt to create a pilot program for a nonprofit organization I had founded, PARADIGM; Enhancing Life Near Death.  I called it the Access Program.  It was seminar/support group hybrid, a two-hour a week commitment for ten weeks.

With the help of a handful of experts in their field, doctors, clergy, nurses, therapists and lawyers, participants were able to face their mortality head on.  They gained perspective on numerous issues related to modern dying … whether it’s filling out a durable power of attorney form, answering provocative questions about sexuality and intimacy, completing a death anxiety survey or personally designing a unique end-of-life plan … they were totally involved and engaged.  And this had a startlingly positive effect on the group members.

After a few years of successfully doing these groups I realized that I was reaching only a very tiny percentage of the people who might benefit from such a program.  Even when I was doing two groups simultaneously, one in the afternoon and one in the evening, I wasn’t able to keep up with the demand.  The only solution was to write a book.

I figured that if I could simulate participation in an actual PARADIGM, group in workbook form, my potential outreach would be enormous.

IJ: Who are you gearing this book towards?

RW: The short answer is — all those mortals out there.

My workbook is primarily for those currently facing their mortality — chronically, terminally ill, elder and dying people.  But concerned family and friends, healing and helping professionals, lawyers, clergy, teachers, students, and those grieving a death will all benefit from joining in.  Because, as we all know, none of us is getting out of here alive.”

IJ: The way you designed the book is unique.  What was your thought process for coming up with this idea?

RW: As I mentioned, it was imperative that The Amateur’s Guide To Death And Dying simulate participation in an actual PARADIGM, group.  Just writing a book about my experiences or my philosophy about living and dying simply wouldn’t cut it.  There were already a lot of those kinds of books in the marketplace.

If I was going to do this, it was going to have to be something really unique.  It was going to have to fundamentally change the conversation.  It was going to have to give those who were without a voice a chance to speak out about their concerns.  And it would have to advocate for the holistic self-determination for those facing the end of their life.

The most exceptional aspect of The Amateur’s Guide is its format.  Readers become part of an on-the-page support group.  Ten diverse fictional characters, representing a broad spectrum of age, race, and life situations inspire strong reader identification and provide essential role models for enhancing life near death.  This unique presentation exposes the reader to a myriad of life situations and moral dilemmas that arise as one faces his or her mortality head on.

Besides the group process, six presenters, each an expert in his/her field, offer timely advice designed to help the reader make the end of life less an intimidating process and more a rich, poignant transition.

IJ: What are you wanting people to take away from the process you put them through?

RW: I hope the reader will be able to celebrate our shared belief that living well and dying well are one and the same thing.  I hope the reader will find his/her voice as well as the confidence he/she needs to engage others in their end of live conversation.

I know that conscious dying has become kind of a buzzword these days and maybe it’s even lost some of its original meaning.  I think conscious dying means learning how to relinquish control before circumstances wrestle it away from us.  In many cultures detachment is an art form.  In many religious traditions detachment is a virtue.  Perhaps there is something here for each of us to consider.  Ultimate control has little or nothing to do with being able to manipulate externals, which I’m sorry to say, also includes our bodies.  Ultimate control is about inner peace and wellbeing.  And these are not dependent on being “well” or being “whole”.

And just to be clear, I’m not talking about adjusting deathbed pillows so that dying people can strike heroic poses for the edification of onlookers.  I’m talking about achieving a good death in the context of real dying—with all its unpredictability, disfigurement, pain, and sorrow.

IJ:What sort of reactions have you had so far with the book?

It’s all been exceptionally positive so far, even the reviews I’ve been getting from my end of life professional peers.  This kind of surprised me at first, because the book is such a radical departure from everything else in the genre.  But everyone seems to be enjoying the refreshingly new take on this age-old problem.  They love the interactive aspect of the workbook.  People are telling me that the fun, engaging yet poignant style of the book is helping them work through their own issues.

IJ: For further support, after reading the book what do you suggest people can do?

RW: Here’s the thing.  If you read through the whole book, if you participate in all the discussions, if you do all the homework and exercises you will, at the end of the book, be prepared for and have the confidence to discuss all your end of life concerns with the significant others in your life.

You will have everything you need to break open a discussion with your lawyer about estate planning and advanced directives.  You’ll have everything you need to address your intimacy needs with your intimate partner.  You will have everything you need to open a discussion with your spiritual advisor about your faith.  You will have everything you need to have a frank discussion with your physician about palliative care, comfort care and your thoughts about assisted dying.

The Amateur’s Guide To Death And Dying can be used to start your own group of people who want to face their mortality; even if that group is made up of just one other person.  You can see the ripple effect this will have, can’t you?  I hope the reader will take every opportunity to share what s/he learned with all those who might benefit, because, as you know, there are a whole lot of amateurs out there.

If you are interested in purchasing the book here’s the link:  The Amateur’s Guide to Death and Dying

Over this period I’ve been observing some interesting things about the grieving process; one of those things is the interplay between memory and feeling. Sometimes a feeling will inspire the memories and sometimes the memories will inspire the feelings. The feeling seems to be the key component though. I can at times actually go back to the same feeling I had as when she was in bed and I was caregiving. Once I get to the feeling, the floodgates of memories open up. Everything from that time becomes accessible.

Quite often this year I’d find myself in search of the feeling. This would play out for me by cleaning house and going through all sorts of items such as clothing, files, books, boxes and whatever else may contain some trace of K’s life. Every now and then I would uncover some surprise; something unexpected. Invariably, whatever I found would bring me back to the feeling where I would whole heartedly indulge in the experience. There, I could spend hours sploshing around in the emotion and the memories.

A few months ago I was cleaning out my office closet and came across several discs. On these discs were about 30 short videos that my then business partner and I and created. The videos were part of a training simulator we developed for sales people. In producing the videos we used K and another friend of ours to play the role of executives in a fictitious company. I had forgotten about this disc and now, almost ten years later, there it was. And what a fantastic surprise!

Kris and our friend Glenn appearing in a business video

I couldn’t watch it enough the day I found it, and still watch it quite often. It’s one of the rare videos of K to exist from the past ten years. I then took the set of videos, pulled out K’s part and edited them together to share with her family so we could all enjoy them.

Earlier in the year I was on one of my “hunting” expeditions sorting through a box K had created of family photos. I had actually gone through this box before but for some reason this time I discovered newspaper articles. Newspaper articles about K!

Several times over the years she mentioned to me how, while in high school, she organized a student walk out. She never went in to any detail and to me it sounded like a nice story but I always imagined a group of 10 students marching around the school with placards. I had no idea what the scope was of what she did, nor did I ask. What a mistake.

In all the time we were together K never showed me the articles I found. Reading them was a revelation. These were articles from major Twin City newspapers. In one article they have a photo of her standing in front of 1200 students being cheered for her leadership. The protests she organized in her school spread to other highschools throughout the metropolitan area as well and was getting considerable reportage.

Her concern was that the quality of education was going to take a hit due to stalled budget negotiations happening between the board and the teachers and she wanted to do all she could to prevent that from happening.  The articles spoke of her strength, her sharp intellect and ability to articulate her position not only to the students but to the adults.

Kris speaking to 1200 of her fellow high school students

One such article entitled “Walkout Organizer has Way With Words” is about how she confronted the superintendent of schools in her district. It starts off, “Kristin Carlander is a no-nonsense 17 year old High School senior who handles her school district superintendent by alternately slamming him with a plank of pithy sentences and sprinkling him with sugar.” To say I was taken aback by all this is an understatement. I found it so sad that I never got to enjoy these newspaper clippings with her, but oh how they satisfied my hunger to reconnect to the feeling. What a wonderful surprise! (Yes, the walkout turned out to be a success in acheiving its goals)

Many days during the week I poke around, cleaning something or the other, hoping that I will uncover another jewel. Maybe it’s a hair that’s fallen in the pages of a book or a grocery note sitting in the pocket of an article of clothing. But all of them seem to have that ability to make me smile, cry or simply feel that she is still here with me. It’s part of my process.

All this got me thinking about something we can do when it is our turn to be cared for.  How about writing notes or creating little hidden surprises for our loved ones to discover after we’ve gone? If any one of them is going through a similarly strong grieving process they would probably love discovering something left secretly behind by us for them. Maybe it sounds like a silly idea, but I know that it would certainly mean a lot to me.

I came across a company called Eternity Message that some people use for this very purpose. It’s an online service that allows you to send emails one year into the future (their free membership) or anytime 60 years into the future (premium membership). It won’t know when I die, but if I suspect I may have only months to live, and have the strength, I can write to a bunch of people and have it sent to them whatever future date I set it for. Or I can write thoughts about my life now and send them off to my loved ones for arrival 5 years from now. I don’t know how I’d react if out of the blue an email from K arrived while I’m sitting here typing, but I’d certainly take the risk.

Although I don’t think K left anything specific hidden away for me to discover I will still continue to look and enjoy finding traces of her existence. I know that each time I find something it will thrill me and bring me back to the feeling of her that I love so much. I have to admit that it’s part of the grieving process I really enjoy. Maybe one day all that will be left is the feeling.

“An appeals court panel on Friday ruled that a hospital could remove life support from a terminally ill Queens woman, but now there appears to be some doubt about what the patient, a 28-year-old bank manager with brain cancer, really wants.”

I created the section “Some things you need to be considering” to help non-paid caregivers, entering a caregiving situation, be aware of several key issues they may face caring for someone with a terminal (or potentially terminal) illness.

Taking care of someone in their final days is a great responsibility and an amazing gift as well if you can approach it right. Taking time to consider the various aspects of such caregiving is critical for both the person being cared for and the caregiver. The list of considerations I created comes strictly from what I experienced and so may not be complete for your situation, but there’s enough there to give you a heads up and a good, if not nearly complete overview of what to prepare for. Because of the list’s importance I decided to give each item a separate post to elaborate on the issue and also provide some resources as a springboard for further research.

The first item seems like a simple one: where do you want the caregiving to take place and where would the person like to die? It sounds simple, but it’s not always an easy decision and one that can be influenced by many variables. Not only that, it becomes part of a bigger discussion; one about the law. Before your eyes glaze over and the temptation to click away overtakes you, bear with me because although you may luck out and find you can go through an end of life caregiving situation without hassle, don’t count on it unless you prepare ahead of time. Oh, and that “time” can be any time. It’s not exactly something we control.

I know we can’t prepare for everything. For instance, as I sit here typing, if you ask me where I want to die I’ll say without hesitation, “at home”. But what does that mean? What am I thinking? What am I assuming? I could very easily, especially here on the roads of Las Vegas, get into a fatal car accident and have to go through my last moments of life laying on some filthy street surrounded by strangers gawking at me.

But let’s say I am in a position to die at home, practically how does that look? Well, realistically speaking, there’s no one around to take care of me on a day to day basis. I’d have to go it almost exclusively alone, unless I get hospice care. And from what I’ve seen, there’s a time where I may not be able to do very much; a time when I wouldn’t even have the strength to medicate myself. So the thought of hanging here alone in extreme pain and agony until death doesn’t seem so enchanting.

Considering we have no control over death, or its timing, it’s a good thing to have a plan and to make sure everyone who needs to be involved is on board. There are a several important legal documents that can help overcome just about any possible confusion and horrible consequence: the ”living will”, the “power of attorney for health care” and possibly the “do not resuscitate” document. Be aware that these documents are determined by the state you live in so they may go by other names and the laws governing them will vary, but they all do pretty much the same thing. K and I hired a lawyer who specializes in wills and end-of-life documents in order to make sure we got it right. It wasn’t very expensive and was well worth it.

The power of attorney for health care is extremely important. If you (if you are the one dying), or your loved one, are unable to make health care decisions, a person designated by the Power of Attorney will take on the responsibility of making those decisions, which means you must trust them a whole lot! Decisions will sometimes have to be made under great pressure and emotion. It’s a very special relationship. The person taking on that responsibility has to be strong enough to make decisions that will ensure the comfort and well being of the one being cared for while understanding and respecting their loved one’s wishes. Health care decisions can get contentious and confusing, just like the story in the article I started this post with. The power of attorney will at least make it clear who’s the decision maker when the loved one can no longer make their own.

One thing that is probably not spoken about much is how the person making the decisions can be affected by the role. After their loved one passes away they will still remember the decisions they took and may very well replay them over and over second guessing what they did. If you think you know what guilt is, just try it after your loved one is gone and you’re grieving. It’s not so easy. Which is why it’s also very helpful to have a living will.

The living will,  is used to declare the kind of treatment you want if you end up with a terminal illness and/or enter a vegetative state.  The living will takes away the contentiousness of ambiguity. The living will speaks for you, or your loved one, when they are no longer able to do so. No one has to get into a fight over what they think the person wants. So having this along with the health power of attorney are important steps in ensuring that you or your loved one can go through a smoother end of life process. And considering how emotional and exhasting a caregiving situation can be, anything that makes it smoother is a God send.

What do I mean by “smoother”?  Just read the article from this morning’s NYT, Court Backs a Terminally Ill Woman, but Doubts About Her Wishes Arise.  Or for an even more extreme example consider the Terri Schiavo case. The battle over interpreting Mrs. Schiavo’s wishes went on for 12 years while she lay there in a vegetative state.  It was so over the top that even the President of the United States felt compelled to get involved! Imagine the anguish and torment you’d have to endure if your situation becomes a nation-wide political football. Terri Schiavo did not have a living will. Now obviously that level of mess is rare, but our own little soap opera version can become just as tormenting and tumultuous. Still, even with a living will we may find we’ll have to fine tune things a little more with the Do Not Resuscitate document.

The Do Not Resuscitate says that if  the ill person’s heart stops or if they stop breathing, nothing is to be done to resuscitate them. That’s pretty much it. The DNR only comes into play when a person can no longer breathe or their heart has stopped. This is also a legal document created by the state with its own nuances as per the state laws.  It’s a simple, straight forward directive and it is binding. Don’t expect the other documents to provide for this option. It is the DNR that will ensure you will not be given cardio or resperatory emergency services. So if you want to be left alone, should you get a heart attack during your end of life care, be sure to have a DNR, otherwise the emergency services have the power to be there with all their gear and give reviving you a go.  Our hospice care provider went over this with us and arranged the paperwork. It was something that had to be signed off and approved by K’s primary doctor.

These three documents can be incredibly calming to have and though it sounds relatively simple, they do represent some complex issues. And, as I mentioned, you do need to understand what’s needed from your state.

Even though I didn’t fully understand the importance of these documents as we were getting them, I became very appreciative of the comfort they gave us, especially when they came into play. I can only thank K for her insistence on getting this done. I was also quite fortunate in that K’s family are an amazing group of people. They always interfaced with us showing great respect and understanding. Some people will not find themselves in similarly agreeable company.

Here are some excellent resources to further your understanding on this subject. If you know of other outstanding resources please comment.

Resources:

End-Of-Life Decisions: This is a comprehensive document created by an organization called Caring Connections, a program of the National Hospice and Palliative Care Organization that provides free information about end of life care.  This is a very complete document.

Living wills and advance directives for medical decisions: a good one page explanation on the Mayo Clinic website.

End-of Life Decision Making: This is a page on the Family Caregiver Alliance website. It’s very well done taking you step by step with the decision making and providing good descriptions of the various legal documents. The FCA also has an amazing section dedicated towards State Legal Help and Advocacy.

Advance Health Care Directives and Living Wills: I found this on Helpguide.org. It’s very well written and brings some other issues to light such as in a great little section entitled Misconceptions about Advance Health Care Directives.

Arizona Life Care Planning: I have included this as an example of something you may be able to find in your own state. This particular page found in the link is made available by the Attorney General of Arizona and provides the information and documents someone in Arizona will need for advance health care directives.

Note: I took a bit of a break. I’ve been in Australia at a most wonderful retreat, camping out and laying off all electronic communications. I went through about one minute worth of withdrawal, but once I saw the nature and breathed the cool outback air I was home free. During that time I did no blogging or tweeting; I simply enjoyed the experience of life. K and I had gone to this spot several times together over the years and she loved it dearly. The photo is from there.

It always fascinates me that a baby, without any prior training, knows how to feed off its mother and knows how to smile. Without speaking our language it is expert at communicating effectively when it needs something.  Seeing this helps me understand that there’s a lot built in to us at birth. It’s nothing I would categorize as “mystical” or “spiritual”, it’s just there.

In all the books and articles I’ve read about caregiving they all say that some sort of “spiritual” anchor is important for a caregiver. I have trouble with the word “spiritual” but I think I understand what the authors are trying to say; that having a foundation on something that maybe defies definition can give us great strength. I prefer to think of it as “understanding and experience”, instead of spirituality. How do we understand life? But most importantly, how do we experience it and how do we experience our selves?

I don’t know about you, but as a caregiver I didn’t find easy answers to the many situations I was faced with, but I also discovered that uncertainty wasn’t so bad. I’m not talking about practical things such as the uncertainty in handling some medical concern. For those issues I immediately called the hospice for help to eliminate the uncertainty and have things taken care of. But there were other things with no easy answers.

For example, during the last week and a half of K’s life the nurses were pretty certain that K would not be with us much longer and I saw all of them reaching for a reson why she continued to stick around. It was understandable. At that point she impossibly underweight. She was too weak and frail to talk or even lift her head. She was breathing in a way indicative of someone about to die.  She wasn’t taking in any food or fluids for the longest time. So each evening the nurse on duty would tell me before leaving that this may be her last hours with us. We’ll this went on for 9 or 10 days!

K was strong. Even in that condition she had an amazing will to live. You could feel the power of it pushing through even when she was hardly with us physically. One night a nurse came to check on K and proposed that K may be holding on to something, or waiting for something, and thus was holding back from dying.  I tried to think of something left undone. K’s sister was there as well and we both drew a blank. K had gone all out to ensure nothing was overlooked so that she could leave in peace and know that none of us would be burdened with problems afterwards. She had visited and called everyone she loved as well.

The nurse then asked if K was a private person. Yes, that was very much true, except when it came to me and her family. So the nurse offered that maybe she didn’t want us around her much so that she’d have a space to leave without us having to see her in that condition. Maybe her leaving was something she wanted to do privately. It’s actually not that uncommon that a person will die when everyone leaves the room so it was not an unreasonable consideration.

K’s sister and I agreed we’d give her more space and time alone. It’s not that we wanted her to go, but if she was ready and we were in the way then it was natural to give her space.  So, instead of sleeping in the bedroom with her I slept in the living room. Although we both checked in on her all day and night we gave her more time alone. It didn’t feel quite right to me but I chose to go along with the nurses idea. Finally at one point I was so uncomfortable with this “give her more space” theory that I abandoned it and started to sleep in the room with her and spend as much time with her as I wanted. Although I was sleeping when she passed away at least I was there in the room. It felt right. In our relationship I can’t remember a time, except when we fought, that she didn’t want me around. My being there certainly didn’t stop her from going. I don’t see how in this situation there was any need for some explanation to her longevity. It was what it was and no discernible suffering or discomfort was evident.

As a matter of fact, in retrospect I’m sorry I had listened to the nurse instead of listening to myself in this regard. I know she meant well and that people reportedly do hang on for one thing or the other, but locking myself into some interpretation was unpleasant. Unless K was able to speak to me and communicate something it was all speculation.  In the end I felt I lost valuable time with her. One thing is for sure; not sleeping in the room with her and leaving her alone for longer periods of time didn’t do a thing. Each day she was still there chugging along peacefully.

During my caregiving experience I found each day and each moment to be unique. As a caregiver I had to respond to the moment, and each moment was different even if the need was the same as the day before. Each day I needed to remain aware as to where K was on that day, not yesterday or 3 years ago. Ideas, whether they were spiritual or not, only seemed to stall me from learning and responding consciously to the reality.

Another good example of this happened after K passed away. Someone seeing my grief suggested I read a book entitled Many Lives Many Masters. It was an intriguing book by a renowned New York psychiatrist who discovered that a patient of his was capable of describing past lives, including the period in between death and birth, while under hypnosis. During this process of reliving the past his patient was able to overcome a debilitating anxiousness that drove her to seek professional help.  I enjoyed reading the book but found that I was seduced by this notion of reincarnation and how those past lives explained so much of our current life. It provided an easy out to my grief.

The ideas from the book offered explanations for our relationship and her passing that wrapped everything up in a neat little package. The only problem was that in accepting those ideas I found myself losing the process of grieving. It felt terribly wrong. I could tell I was losing something valuable. The grief was real; the idea of reincarnation and all the reasons for what we do in a lifetime were not. Those ideas required belief instead of knowing. I couldn’t do that to myself so I dropped the whole idea and allowed myself to grieve. As far as I can tell, there’s nothing wrong with grieving, it seems to be a natural process of understanding and accepting loss.  Circumventing it with ideas or beliefs seemed a lot like pushing away something that I would have to eventually come to terms with anyway. Though the process is often hard I feel a real evolution has taken place in reality rather than through the manipulation of ideas.

Just as the baby, I mentioned earlier, has a built in ability to handle critical situations, i.e. get food, comfort and protection, so I am finding that the important things that concern my life are already built in as well.  I was shocked at how easily caregiving came and flowed through me. If you had asked me a few years ago if I could do it I would have said no, yet something inside led the way quite naturally. Yes, I had a lot of guidance from some great professionals, but when it came to seeing the needs of a loved one, what I saw and felt was that I was given an opportunity to be part of an ocean of kindness greater than myself. In that I am comforted. Entering a caregiving situation I feel it’s important to be careful of what we cling to; we may just lose sight of reality and miss opportunities that will enrich our lives and provide exceptional care to our loved ones.

The reality is that almost all of us will enter into a caregiving situation once or multiple times in our life. I recently saw a quote by Rosalyn Carter that says it very well, “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers”. Caregiving is not something we will be exempted from unless, I suppose, we are living alone in a remote cave in the jungle.

As our population continues to age, many Boomers are now finding themselves caregiving for their parents. Increasingly, the Boomers will need to be taken care of as well. K was a Boomer, as am I, giving me some insight to what lies ahead for many of us; and with the huge population of boomers, caregiving will become massive. As ominous as that might sound I happen to see something exciting about it.

I feel that, like everything else boomers have touched and focused on, they will dive into this area with intense passion and quicken an evolution in the way caregiving happens. I see a future for caregiving with some wonderful and more widely accepted norms: easy access to information, a more conscious approach towards the comfort of a dying person, dying at home becoming the overwhelming preference, a respect and greater understanding for a person’s internal journey and greater awareness of what the dying person wants. Much of this is already here, but I don’t sense that it has become mainstream - I believe the overwhelmingly large populations of Boomers will probably make it so.  Over the next decade we will likely see a more commonplace acceptance of our mortality rather than fear.  There will be a recognition that our process of departure can be something as magical as the day we arrived.

Back in April CNN had an article entitled “Caregiving for loved ones, the ‘new normal’ for Boomers.

“Trying to create the best possible quality of life for an aging relative is “the new normal” for 43.5 million Americans caring for someone older than 50, according to the Family Caregiver Alliance.

 …With about 10,000 baby boomers hitting age 65 each day, they’re becoming caregivers and also those needing care. With people living longer than ever, this is the first generation that might care for its parents as long as it cared for its children, experts said.

 Now that more baby Boomers are aging, the issue of family caregiving is becoming much more commonplace. We call it the ‘new normal,’” said Lynn Feinberg, senior policy adviser for AARP.”

So, what’s inspired me to write all this? Last week I came across an amazing article that I really want to share with you. The article takes us right into the middle of the kind of initiative that I am sure we will see more of over the next decade. The initiative, called The Conversation Project,  helps provide some framework to the type of conversation I’ve been advocating on this site. It’s one thing to want to have a conversation, but it’s another to figure out how to go about it. The Conversation Project brings some structure and thought to having such a conversation.

This article is both a radio piece and a transcript and I strongly encourage you to take in both. The piece was done on WBUR in Boston, a public radio station.  It contains a beautiful conversation between a father and daughter about end of life decisions. The father is 85, and in good health. He’s a widower.

The piece begins by referring to a recent survey by the California Health Foundation* reporting that 60% of people feel it is important to have an end of life discussion with their loved one(s) but that only 56% have actually conveyed their wishes. The Conversation Project  is a national initiative that has just been launched and was created to help get families and loved ones talking about the kind care they want at the end of their lives. In the article we are invited into a very personal and intimate conversation.

Here’s the article. It’s a beauty:      Let’s Discuss Dying: ‘The Conversation’ About How My Dad Wants To Go

• Although the announcer  said the survey was conducted by the California Health Foundation I couldn’t find it  in my searches. I did find the California HealthCare Foundation that, in  fact, did a survey regarding the discussion of End of Life treatment.   Here’s a link to the report on the foundation’s site: Poll Finds Wide Gap Between the Care Patients Want and  Receive at End of Life