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Four Questions to Consider When Choosing a Cremation Urn February 5, 2016

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How to choose a cremation urnOne thing some people would prefer not talking about, is what’s to be done with their body after passing away. It’s a hard one to bring up, especially when caregiving. Some people already have this worked out from birth, while others are still mulling it over. Kris was very forthright about talking about it, and I really admired her fearlessness for that. One part of that discussion was of course deciding whether to be buried or cremated. That was pretty easy because she already knew what she wanted – cremation. Slightly more ambiguous was whether she wanted her ashes scattered or buried and where. The final decision was a combo of scattering and burial; half the ashes were to be scattered in our favorite hiking area outside of Las Vegas, and the other half was to be buried at a family plot in Minneapolis.

We didn’t know exactly how to shop for something like this so first we tried to work it out at the funeral home. They attempted to sell us something quite expensive but we decided on buying a scattering tube that seemed appropriate and fairly priced. We then bought another urn for burial from an on-line site. It took me days to select something online because there were so many urns of different shapes, sizes, colors, materials and purposes. On top of that I didn’t know which vendor to trust. The variety was blinding, much like walking into a North Minnesota blizzard.

Now that I am running an online cremation urn website (is that irony?), I not only have my own experience but hear from many customers facing the same thing I did. I find they are as confused as I was and consequently we spend a lot of time educating when people call in for help.

There are 4 main questions to answer in selecting a cremation urn. Answering these questions will cut through the clutter while saving you time and money. (more…)

Well, Okay Then… February 24, 2013

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OLYMPUS DIGITAL CAMERAA good friend of mine mentioned Conscious Departures on Facebook last week and it generated quite a bit more activity than usual. It’s a little ironic because I have held back from posting anything on Facebook since I first published this blog site last March. For most bloggers this might be heresy especially since I have somewhere over 700 Facebook friends.

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?”OLYMPUS DIGITAL CAMERA

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.

OLYMPUS DIGITAL CAMERASo, 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.

Understand What it Takes To Care January 10, 2013

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OLYMPUS DIGITAL CAMERAWell, I’ve taken quite a bit of time off to regroup, enjoy the holiday and make some great connections.  But I’m feeling more strongly than ever to get the word out to friends and acquaintances about being ahead of the curve on end-of-life and caregiving issues, so it’s time to get back to writing. It may not be practical for some to get too far ahead of the curve, but many people are surprised how quickly they get blindsided finding themselves as a caregiver or being cared for. Almost everyone I’ve spoken with over the holidays is gravitating towards or in the middle of some kind of family caregiving situation. In my own experience, even with adequate time to get well informed,  I still found myself with many seemingly small tasks that were far more worrisome than I anticipated.

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.Jan 10 13 P2

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.

Facing Mortality Head On October 24, 2012

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Several months ago I became acquainted with Richard Wagner Ph.D and had the pleasure to read his book The Amateur’s Guide to Death and Dying.  His work with people facing end of life issues is inspired and I admire his fearless approach to go into territory most consider taboo and awkward.  Richard Wagner has been working with terminally ill, chronically ill, elder and dying people in hospital, hospice, and home settings for over 30 years. He facilitates support groups for care-providers and clinical personnel, and provides grief counseling for survivors both individually and in group settings.

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. (more…)

How About Leaving Some Surprises? October 13, 2012

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As of Thursday the 11th,  it’s been 1 full year since K passed away. It’s difficult enough to understand she is gone and not returning, no less comprehend what a year means. So much has transpired in between, yet a year seems just impossible.

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! (more…)

Leave No Room for Doubt October 6, 2012

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From the The New York Times, Oct. 6, 2012: “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. (more…)

“The Conversation Project” Breaks Ground August 28, 2012

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Some of you know that the purpose of this blog site is to get people talking with their loved ones about preparations for an end of life situation. After my caregiving experience with someone very dear to me I became keenly aware of the importance of having such a conversation and how much it can help the non-professional caregiver as well as the one being taken care of.

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. (more…)

Something to Learn From Michael Phelps August 5, 2012

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I’ve been tuning in to the Olympics this past week and enjoying it quite a bit. One person who will be in Olympic history books for some time is Michael Phelps, now the considered to be the top Olympian ever. When you think of all the competition there is from all over the world it’s really a super human achievement.

I like this one story of a race he swam in the 2008 Olympics when he ran into some serious trouble. During that competition his goggles filled with water so that he couldn’t see anything. Most of us would think “So what? He’s swimming. Not seeing doesn’t seem that bad.” Think about running a race, on a straight track, back and forth and being blindfolded without warning while your competition can see perfectly well. Not only would it be nearly impossible to stay in your lane but you’d be seriously disoriented and freaked out to boot.  That may help to understand the immense challenge. Well, not only did Phelps finish out the race blind, but he took gold!

How did he manage to do this? Preparation. His coach prepared him for such an eventuality knowing that he had to be ready for any surprise. He had Michael do things like swim in the dark or race mentally, imagining his goggles were filled with water. They even calculated the number of strokes he was supposed to take in a lap in case this ever happened. So during that race, once he lost all vision, he mentally played the imaginary “blind” race he had swum many times before, counted his strokes and followed his training to touch the wall perfectly and end the race. Yes, he won the gold and even set a new world record. (more…)

Don’t Wait to Ask For Help July 20, 2012

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I’m a bit delinquent with this post. Last weekend I made the really bad decision to heat up a can of Indian food which had some white fuzz on top. I was so hungry I convinced myself that scraping off the fuzz would be fine. It wasn’t. Within a few hours I was slammed with a severe case of food poisoning and suffered through it till early the next morning. Now after several days I am almost fully recovered. The only help I managed to ask for during this ordeal was a cryptic email to a friend saying “check on me Tuesday and make sure I’m still alive”.  Of course the person I chose only checks email when the comet Kohoutek rounds the sun, so thankfully I’m still here. (more…)

Just the Right Environment July 9, 2012

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When it comes to going out to eat, whether it be a restaurant or someone’s home, many people find that the environment plays a big role in the enjoyment of the food. I once heard a comment attributed to a friend that when asked what he thought of the restaurants in New York City he said that it was hard to enjoy food when eating in a toilet (sorry New Yorkers, no offense meant). I never found out if he actually said this but it definitely got a laugh out of me and a nod towards the spirit of the statement. So what about the environment when we are caregiving? What about the environment when a person is going through an end-of-life process? (more…)