Death Doula

Death what? That was my reaction when I first heard it. A few years ago after having met Alice and gotten to know her, I asked her if she could work for me.  At that time I was struggling to care for my husband who was on that downward spiral of Alzheimer’s, while I was recovering from my back fusion and having developed another problem with my hip.  Keeping up with our life had become complicated as my husband declined, my physical health was tentative at best, and dealing with the reality of losing my husband in bits and pieces.  Every day was a new “adventure” as I navigated our changing relationship and the terminal aspect of  Alzheimer’s which I understood, but he didn’t.

Alice came over the next day and said we needed to discuss further before she took us on.  She was working on getting certified as a Death Doula and planned to take that role on when she retired.  If she came to work with me, it would be in the role of Death Doula and not just for my husband’s end of life, but mine as well.

Ok.  Explain yourself.  What the hell is a Death Doula? The short answer according to AI…”a non-medical professional who provides holistic emotional, spiritual and practical support to patients and families during the dying process.”  Alice explained a little more fully.   Dying is a sacred spiritual process in one’s life and walking through that with someone is a sacred responsibility.  Dying is a multifaceted process.  It involves every part of your being; physical, emotional, spiritual.  The same is true for their loved ones. Walking with your loved one on their final journey is a path filled with trepidation as you face the loss of your loved one and deal with the daily challenges involved with caring for them as they go.  If you haven’t gone through it before, you’re fucking clueless.  At least I was.

A little more background before I move on.  At this particular time in my life, I had only recently gone through the death of my father.  His death was the first real loss in my life and we were really close.  Although he had been declining for sometime with congestive heart failure, I wasn’t his caregiver so, I only visited as often as I could.  My mom took care of everything.  Going through his loss was actually a positive spiritual experience for me, even in my grief and also provided an opportunity for my younger brother and I to reconnect after 18 years of little to no contact.  And, in retrospect, an experience that provided the foundation and spiritual strength to walk through both my son’s and my husband’s end of life journey processes simultaneously.

Note: Now, I’m certainly not qualified to explain the responsibilities of a Death Doula, I haven’t studied it.  But many have asked…what is a death doula?  What do they do?  So in order to try and describe it to you, I’m just going to relate my experience.  I think you’ll get the gist of it.

But I was still clueless about how to actually navigate the walk down this road.  I didn't even know what I didn’t know.  That’s where the Doula comes in.  From her training and lessons learned through her own painful experiences Alice pretty much laid it out for me. And, was by my side throughout every step of the process.  Explaining, listening, understanding, providing suggestions, mopping up my (typically self-induced) latest crisis.

Due to my husband’s Alzheimer’s, my physical condition and subsequent narcotics addiction, she had a quite a few more things to do for us involving household and personal care. She bravely performed those duties as necessary. 🤪

Then there was the time that I decided to crash off the narcotics.  They weren’t working anymore, upset my stomach and I absolutely wasn’t going to start taking more for the pain.  That will only lead me back down a road I’ve already been on and had no desire to travel down again.  So against her advice (and everyone else’s, even my own) I just quit taking everything one day.  Two days later I was on my bathroom floor with no strength to get up and had to call 911.  In the ambulance I called my neighbor friend to come stay with my husband.  She did, but I called Alice first in a panic and told her.  Alice immediately left work and got to the hospital shortly after I got there.  In the following months she worked with me to regain my health.  Sometimes that was gentle persuasion, sometimes it was more like a kick in the ass to get me to take care of myself.

She was with me the day I looked into my son’s eyes and knew he was dying. I turned to her and voiced for the first time, the words that broke my heart “I’m going to be burying my son.”  She took me to the hospital (in my wheelchair) when he was admitted with liver failure.  When the day came close, she put herself on call and arranged a ride to the hospital so she could be there for me and drive us (my son’s fiancé, my grandson and me) home.  She came to the funeral home with us to help us navigate that whole thing.  She helped with putting the service together and everything that goes with that.  She took me shopping for a dress, since I had lost so much weight and nothing fit. She listened and supported me through the entire process.

She was there as I struggled to care for my husband and his behavior started becoming aggressive and I faced the inevitable timing of having to move him into Memory Care.  She was there right beside me the day I moved him to Memory Care.  She was on the other end of the phone or in my garage through countless breakdowns as I coped with yet another change in our life. She was there at the ER with me when my husband fell and broke his hip. When I got the call that he had passed in his sleep, I called her to let her know.  She arrived at my house just minutes after my friend brought me home after going to Memory Care to see him before they took him to the funeral home.  She sat with us while we talked and I cried.  I was in shock.  Although I knew my husband was on his end of life journey, he was just moving out of the moderate stage and was still one of the most cognizant persons in memory care and I expected him to still be around for some time.  She said I needed to eat (she had been through enough with me that she knew that when I’m in emotional distress, eating is the last thing I would do).  She took me out for my favorite breakfast (energy drink and a sausage, egg, cheddar biscuit).  On the way home she informed me that she wasn’t going to take me back home right away because I shouldn’t be alone at that time.  So she took me back to her place and essentially babysat me until I was ready to go home and nap.  One more time she was there every step of the way as I made funeral arrangements.  She listened to everything I said about how I wanted to celebrate his life and the love we shared for over 40 years.  She went the extra mile to help me honor who he was.  I had mentioned to her that he always said he wanted a flannel lined coffin to keep him warm in the Minnesota winters.  She made some phone calls and arranged for a friend to come up from Nebraska who made a flannel lining from his flannel shirts and sleep pants.  She had another friend embroider a picture of him to include.  She designed, they created.  His funeral was everything I wanted it to be as I said goodbye to my love. All this, while recovering from her own surgery and living her own life.

Another facet of being a death doula is to help their client achieve their bucket list during their end of life journey.  Apparently I told her that this 50-state ride was on my bucket list, along with the concerts I wanted to see.  So, here we are preparing for the 50-state ride.  Due to my age and our combined physical issues, that involves a lot of work for both of us to get into shape.  This is something we have been working on all along as we faced our individual health issues.  Now it’s crunch time.  She moved in with me.  That’s not necessarily part of being a doula, but in our situation, it makes sense.  We need to focus on the mission we are on.  Being roommates gives both of us the space we need to heal and keep moving forward.  This part of each of our life's journeys are connected now.  The work we need to do now is physical, emotional and spiritual in nature.  It’s not about her helping me with chores or day to day bullshit.  It’s not about convenience, it’s not about taking care of me, it’s not about helping her out with a place to live.  It’s preparing for our journey.  In her role as death doula she’s also helping me to navigate my final stage of life.

This what a Death Doula does.  Pretty much anything that needs to be done for one’s end of life journey, based on the client’s needs. There is actually a lot more detail and work that goes into it than what I have shared, your own research or a death doula could explain that further. They are bound by a set of ethics, their training and the certification they carry. My explanation is based on my experience as the recipient as I share how she has walked beside me and helped me navigate this.

Although I’m not at death’s door (as far as I know), there’s a lot to consider in order for me to live my best life as long as I can.  I could choose to just sit here as a widow in my townhouse with my neighbor widows and quietly live my life dealing with my health challenges until I die without doing anything to change my quality of life as I’m aging.  But that’s not my style.  The road is calling me and I still want to experience life to its fullest. That requires quite a bit of work to get there after the last several years of physical challenges and loss, but I’m not quitting.  And I’m thanking the spirits that brought Alice into my life.  I might even be successful now.  A Death Doula is also referred to as an “end of life” Doula.  I’m hoping that covers a long time yet.  Alice says I’m pretty high maintenance and may be her only client. I don’t know about that, but I know that having her as my doula is a gift that keeps on giving.  Looking back over the events in my life as I face turning 70, I find myself in a state of wonder at the effect of having a doula walk through this journey with me.  I know I would have survived, because that’s what I do.  However I am so grateful for the guidance, spiritual, physical and emotional growth I have experienced with the help of my Doula and the help I’m getting to keep moving forward as I recover.

Love and Peace,

Chick