Dying at Home

The life experiences found in this story are powerful. The home funeral movement is gathering momentum to take back the traditions of family and community lost to many generations that relied on others.

https://challenges.openideo.com/challenge/end-of-life/research/having-my-parents-die-at-home-was-a-powerful-and-worthwhile-life-experience

Home deaths are challenging, yet fulfilling life experiences. Perhaps our family’s story can enlighten & provide inspiration to yours.

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Updated on 21:59, May 24, 2016

A few thoughts to share in foreword…

In 2015, both my Dad (and then my Mom 11 months later) died at home in the family room of the house they had built in California 40+ years earlier. They were each in their early 90’s and both were in failing health of differing sorts.

My wife and I had been living with them on the family homestead for several years as their health-advocates and caretakers. Each morning we rose up and dealt with whatever came down the pike. My Dad’s favorite phrase: “Enjoy your day…” provided direction and context throughout.

We all knew what was coming and we’d made an unspoken commitment to living good full lives together – until it came.

Thankfully, their worldly affairs were in good order. We’d had all the conversations one could hope to have, and in the inevitable end their dying processes were fairly straightforward.

At the same time, the ‘Home Death Care’ experiences we shared with them – which we felt were the most normal, most respectful, most natural ways to handle things – ended up being profoundly impactful on us and many others.

For me, the end of my parents’ lives was something I wanted to feel directly and understand as completely as I could. Why? Because the experience of death and the understanding of death are intimately interwoven with the living of life and the understanding of life.

Each day I focus on living consciously, in the moment, with presence of mind, and an open heart – all of which were vital to the process of providing Home Death Care for my Dad, and then my Mom in 2015.

My discovery of this OpenIDEO challenge about the re-imagination of the end-of-life experience has been very timely.

It is my belief, based upon the direct experiences I went through with my folks, that being able to not only have them die at home, but then have them stay at home, be prepared for burial at home, and be transported to their final resting places from their home (in home-made caskets) provided our immediate and extended family with a rewarding, deeply bonding series of end-of-life experiences that clearly were unlike anything we’d been through before.

Thus, it is my suggestion – for those individuals and families who have the knowledge, access and skills/talents to do so – that reimagining one’s end-of-life experience towards a more Home Death Care-focused perspective could greatly enrich and improve the process of a human being’s life coming to an end within their community-of-choice.

What is Home Death Care?

I did not initially set-out to ‘do’ anything specific in regards to my parents’ final disposition and burial. Like most folks, I just assumed when someone died that:

  1.  A mortuary or funeral home would handle the pick-up and transportation of the body.
  2.  The deceased would be placed in a casket/coffin (embalmed, or not) by an Undertaker.
  3.  Final arrangements would include either burial or cremation.

In the mid-1980’s, my Dad and Mom had purchased their burial plots and made the initial arrangements for their final resting places within a local Memorial Park. The only thing they had not completed was making their decisions about what types of caskets to buy, and/or the final details of their graveside ceremonies, etc.

One afternoon in late 2014 my Dad and I visited their cemetery in order to confirm the previous plans/arrangements that had been made, and to pick-up casket/coffin-related sales brochures and product literature, etc.

Tucked away within the larger packet of information my Dad and I took back home with us that afternoon was a printed copy of: “The Consumer Guide to Funeral and Cemetery Purchases” from the California Cemetery and Funeral Bureau/CFB

(You can review an online copy of the guide here:http://www.cfb.ca.gov/consumer/funeral.shtml).

Little did I know, that contained within this 25-page document were words and phrases that would change my understanding of the modern-day dying/burial process forever. In specific, it was the first time I had ever been introduced to these three words – Home Death Care.

Here’s the exact description from the CFB in all its simplicity:

 Home Death Care

“The use of a funeral establishment and funeral director is not required by law when preparing a body for disposition. You can arrange for your body, or that of a loved one, to be cared for and prepared for disposition by family and friends at home. If you choose home death care, you must:

  • File a properly completed Certificate of Death, signed by the attending physician or coroner, with the local registrar of births and deaths.
  • Obtain a Permit for Disposition from the local registrar of births and deaths.
  • Provide a casket or other suitable container.
  • Make arrangements directly with the cemetery or crematory.
  • Your local county health department may be able to help you file a Certificate of Death and/or a Permit for Disposition.
  • (NOTE: Human remains may be kept at home without embalming or refrigeration until disposition. Generally, decomposition will proceed more rapidly without refrigeration or embalming.)”

A Shift of Profound Measure

These 152+ words resonated within my brain for several minutes after first reading them. Truth to tell, I was speechless and thoughtless (yea, I was). So, I read it all again… and honestly, my worldview, my perceptions, my outlook on the future – shifted. And, not in a bad way – more like in a comforting way. It was like something I felt to be ‘true’ had just been told to me that it was ‘the truth’ and I was calmed by the realization.

As I said earlier, we had not planned anything in specific for my folks’ final disposition and burial. In my heart I had known that of course we were going to do the right things, the most loving things, the safest and most respectful things. Yet, I had never sat down and planned the steps out – it would just be something that would happen after they died. Right?

Being able to do things is important. Doing them is quite another.

Getting introduced to the concept of Home Death Care was like having a light shined down into a dark hole. I was, at first blush, grateful that I could now see what was there to be done and how to go about doing it. At the same time, the steps in the process and the process itself were aligned along the steepest of learning curves. I’d often thought of myself and my wife as being ‘quick study’ people. And, over an 11-month time span I was destined to learn just exactly what that meant in ways I’d never anticipated.

The language in the CFB guidelines is simple, direct and clearly focused. For instance, the opening statement left little room for doubt that it was perfectly legal (in California in 2015) to have someone die at home and be prepared for their disposition/burial at home.

What is not said, is that not many people choose to do so, and therein lies one of the more important reasons why I’ve chosen to share my family’s story with the OpenIDEO community in relation to the challenge question:

“How might we reimagine the end-of-life experience for ourselves and our loved ones?”

What’s normal to me – may be highly disruptive to you.

I encourage any of you who are interested in providing Home Death Care for your friends, family and loved ones to do research within the cities, counties, states and provinces where you reside as carefully and honestly as possible. It is of great practical importance that you come to a very clear understanding of what you can, or cannot, do in regards to Home Death Care practices within your local community/jurisdiction.

And, given the level of direct personal involvement, hard physical and emotional work, actual time required, necessary fiscal resources, etc., that Home Death Care involves – I would strongly suggest that you assess what you believe will be right for you and your family’s needs, resources and capabilities – long before the time comes to actually make a commitment of this nature.

Home Death Care is definitely not the norm within the United States. And, I’m going to assume within many developed countries around the world that folks are much more likely to keep death and dying at a fair distance away from their homes – for understandable reasons.

Those reasons however, are no longer reason enough.

We accomplished a great deal in spite of our un-knowingness.

Candidly, with very limited initial knowledge, access and guidance – I was able to have my Mom and Dad:

  1.  Die within the walls of their beloved homestead peacefully, consciously, safely and respectfully;
  2.  Gain a level of closure and finality with their family that never would have been possible through more widely accepted and practiced death/dying rituals;
  3.  Have their final days on earth be ones of deep connectedness, celebration and sharing;
  4.  Provide those of us left behind with the opportunity to say good-bye, see their life energies exit their bodies gracefully, care for their bodies and their spirits (and ours, as well) in a manner that while gut-wrenchingly powerful – was also uplifting, healing and re-juvenating.

The process starts like this: Someone you know and love is going to die.

The medical doctors we worked with were completely supportive of our family’s desires and interests in having my Dad, and later my Mom, stay at home until their final passage. For each of them, we engaged a local Hospice organization to provide the medical, palliative, physical therapy, patient care, and related family support services that only a quality Hospice program has the ability to deliver.

Being at home allowed us to share and enjoy (yes, I said enjoy) so many different kinds of things that an institutional environment would have precluded. From the ability to control the lights, the sounds, the smells, and the visitor traffic – right down to the ins and outs of our family pets – home was truly where our hearts were best suited to be.

Show me a hospital room or an ICU that can make the same claims and I’ll show you a very enlightened and progressive facility (of which there are some no doubt).

My point being: it is the control, the safety, the quietness, the familiarity, the rightness of a home environment that makes the extra efforts and extra intense experience of Home Death Care – so very worthwhile.

And, then they die.

No doubt about it, the process of dying and the reality of a dead body is not something to be taken lightly. At the same time, when providing Home Death Care to someone you love, you’ll experience being able to:

  1.  Stay with them after their dying for as long as you like.
  2.  Share with them whatever your spiritual, religious or cultural traditions entail.
  3.  Touch them, hug them, smell them, bathe them, dress them, wrap them lovingly in a treasured quilt, flag or cloth.
  4.  Grieve with them as deeply as your heart desires.
  5.  Lay your head on their un-moving chest and cry your eyes out.

And, all of these things are what I did with my Dad, and then my Mom, and I’ve been a changed man ever since. Simply put, being at home with my folks when they died brought me great comfort and closure, and I believe it brought them great comfort, as well.

There are plenty enough religious teachings, from sects and cultures around the world, that tell us death is a complicated, scary, dangerous, too big of an experience for anyone to handle – type of a deal.

And, there are plenty of spiritual groups and traditions that profess exactly the opposite, which is the allegiance I currently share.

You’ll have to ask yourself where things stand within your family, household and community. I would encourage you to carefully consider if Home Death Care fits into your worldview, or not. There is no right or wrong decision to be made. There are simply choices to be considered and based on my experience – the positives of having my folks die at home worked out quite well for us.

After the dying, then what?

When a person dies there are situations that have to be handled. For instance, dead bodies do begin to go through predictable physical processes. If we go back to the wise counsel from the CFB we gain this perspective:

“(NOTE: Human remains may be kept at home without embalming or refrigeration until disposition. Generally, decomposition will proceed more rapidly without refrigeration or embalming.)” ~~ California Cemetery and Funeral Bureau

My Dad died in January, my Mom in December. We live in Northern California where it stays pretty chilly overall in the wintertime. Thus, in order to keep their bodies as safe and sanitary as possible after death I just had to open the windows in the family room. This brought the temperature down into the 35°-45°F range, which was more than adequate for our situation. My understanding is that ‘dry ice’ could also have been packed around their bodies if additional chilling had been required.

Plus, there were a number of paperwork processes that had to be completed here in California once my Dad and Mom’s deaths had occurred. Were these requirements and filing procedures a pain in the arse? You bet they were! Yet, if they were not done, and done properly, the complications and ensuing legal entanglements would have created pains well beyond my arse.

Home Death Care requires that a level of personal responsibility, integrity, accountability and ‘patience’ be maintained. For instance, when my wife had to hand-write the ‘Death Certificate’ for my Dad six times over – because ‘Road’ had been spelled out in one section and then abbreviated to ‘Rd.’ in another, or the periods had been left off of the attending physician’s signature between the ‘M’ and the ‘D’… well, you get the picture.

There was no way for us to know in advance about some of the things we encountered. Yet, there was no way that these things could not be taken care of within the several day period of time between my folks’ deaths and their burials.

Can you say: High pressure/high stress environment?

And, that may be an understatement, at best.

Into the ground, or into the sea, or into the ???

Whether an end-of-life-cycle culminates in a fancy funeral, a celebratory memorial, a simple graveside burial ceremony, a cremation, or whatever?? – it will come to a conclusion, no doubt. The building of my folks’ caskets was something I wanted to do as a very personal way of participating with them in their final passages.

Being able to build their caskets, placing their bodies lovingly inside them, carrying them to the cemetery in the back of my pick-up truck, and watching as they were lowered down into the ground provided a deeply felt level of closure and finality.

I did not want my Dad, or my Mom, to be taken anywhere after they died. I wanted to complete the process myself with my family. And, we did just what we set out to do – with more than a little help from our friends and a great deal of hard work from ourselves.

It takes all you’ve got to give, and then some. Don’t go it alone.

I asked a fair number of questions and did a great deal of research all along the way when I provided Home Death Care to my folks. I also asked for help from a number of different people and organizations who each contributed in their own special ways. I would encourage you to do the same and to expect the same in return.

Actually, I was pleasantly surprised by the reactions and support my family received from within our community. It was apparent to me that while some folks did not really know how to help – mostly because they had not known anyone who had ever done what we were doing – they were more than happy to participate once asked.

My point in telling this story has been to illuminate and educate the OpenIDEO community about our family’s experiences with Home Death Care and to encourage others to consider taking this pathway themselves when facing the impending death of a friend or loved one.

I’ve not been real specific about too many of the people and/or organizations we worked with. Primarily I’ve wanted to place into consideration the process we went through and to highlight how and why others may want to do the same within their local communities and family units.

Thanks for this opportunity to share my story.

Thanks for your time and interest.

Challenge met.

Planning for Change

Life presents us with our daily challenges. We know that these challenges are easier to manage when we confront them with a plan. One item which hits us is death. Death is inevitable with the only unknowns being when, how, why and where?

This blog post is meant to help in planning for events that we know will present themselves sooner or later. The population of North America is aging as the Baby Boom generation enters its epoch. As baby boomers we are experiencing death more often as our friends, families and the world around us is shows us our mortality.

Death is one of those life events that is always a burden emotionally and financially as it presents a whole set of new challenges to manage. The challenges become easier to deal with if there is a plan in place. The basic plan item is a will. The complexities of where we live and what we have accomplished can create a whole myriad of details that need to be dealt with at specific times. Making sure that the plan works is usually achieved with the help of a professional estate planner. A plan should be started as soon as there are dependants to consider as they become a participant to the plan. Once started the plan needs to be reviewed and revised as we age or as life changing events challenge the status quo. A basic plan is to help and aid the people you will leave when you die. A basic plan helps when death is unexpected. A more detailed plan is needed when death becomes more of a statistical inevitability.

End of Life planning is a personal and soul seeking challenge as we are presented with answering the questions we avoid. Few like to consider their own mortality let alone that of their family members.  Answers to all of these questions expose many myths and wrong information. The speed at which we do our end of life plan depends on each person and family. Setting up a plan or adjusting an existing plan should not be done hastily.

Creating an End of Life plan can be an emotional experience and time-consuming exercise in which patience and intelligent thought needs to be the focus.

Many cities and regions in North America are seeing the growth of End of Life planning professionals. Before you consider purchasing a Pre-Need Funeral Insurance plan you need to consider your needs with an independent advisor. The whole pre-need insurance industry is fraught with dangers and pitfalls. The right plan will save you in a variety of ways which will be the subject of a future blog post.

The End of Life planning should always be done with someone who is experienced in the funeral industry and is independent of the funeral providers. An independent professional will be able to provide an unbiased and resource based guide to your specific needs.