Six Months In: Thoughts About Active Dying

"Life has many mysteries, but there is nothing comparable to death"

Tomorrow marks sixth months since my mother's death. The six month mark is especially difficult for spouses, so I'll be checking in on dad. For me, it hasn't been that rough (yet), because I've been so focused on other issues. But, that grieving timeline does affect me; otherwise, I wouldn't have woken with a start the other night thinking I had forgotten to flush mom's biliary catheter.

Those last three days before mom's death were breathtaking for me. The last coherent thing she did before she settled into her hospital bed in the living room for the last time was to pick out her urn. She dressed herself (with a little help), and held court with the funeral directors for about two hours. Then, she returned to her nightclothes and settled in for what appeared to be a 24-hour coma.

But, perhaps it wasn't a coma after all. I'm still learning about "active dying," or the end our "life in form," and how dying is a very active part of our lives. Death Cafe shared an interesting article this morning on Facebook, and I was thrilled to read the information contained in this piece about active dying. This article didn't focus on the usual 'list' of "are they dying yet" tips. Instead, this article speaks from a space that is both spiritual and physical. The third paragraph caught my attention immediately:

Often the time of death is preceded by an apparent coma, in which many things happen below conscious awareness. It is a great challenge to develop the spiritual guidance and inspiration, the vision and knowledge that can speak of the peace in surrender, and guide each other there.

Oh, that paragraph took me back to that moment six months ago, when I knew that mom heard everything that was going on around her. Although she seemed 'dead to the world,' she was active inside...her body was rapidly breaking down, and her mind was somewhere I couldn't touch. But, I knew she was still with me. She validated my assumption by becoming more communicative the day before she died, and by affirming she heard everything by answering some of my questions.

The article leans into Buddhism, and my mother was a deeply devout Christian. But, she often listened to my brother's Buddhist thoughts on spirituality, and she liked them. I think she would have enjoyed this article in another space and time, including its focus on metaphysical changes. Yes, metaphysical...the author is answering the questions, "what is ultimately there," and "what it is like."

If I take this article to heart, however, I'd have to laugh at the efforts that dad and I made to open the doors for her to hear the birds and to talk to her about the imaginary rabbits and turtles that we saw in the yard. According to the article, mom really wasn't aware of our efforts at the end...

During the period of the near-death reflex, the mind-body also experiences the release of beta-endorphins and other neuropeptides. The inner experience is a profound relaxation of the entire body, so profound that any awareness of the outside world disappears.

Ah, so. Dad and I were playing out those roles for ourselves. That's fine, too.

I know that I never would have remembered the information in this article while mom was alive. I was too concerned with her moment-to-moment living conditions. But now, looking back at those three days before her actual death, this article speaks to me like no other words have to this point.

For that revelation, I'm grateful.

Overcoming Another Major Organization Hurdle

My desk this morning and then...this afternoon.

By the end of November, I should have this house in fairly decent shape. I need to be more organized, because I'm juggling several balls right now -- my Etsy shop, Amazon book sales, an upcoming writing workshop, clients, and -- the main purpose behind all this activity -- my memoir.

It made perfect sense for me to tackle my desk today in light of the deadline I set for myself with clients and the book. In the photos above, you can see a cluttered desk filled with items that I needed to list on Amazon and other items I need to photograph for sale on my Etsy shop (links to both venues are listed in the right column). All those items now are in their proper places, mostly. I did make it through the books today, and they're all out the door, listed on Amazon, or on my bookcase in the bedroom. I'm limiting myself to one bookcase for books I want to keep.

The other items are sitting on the folding table behind me as I sit at my desk. My next task is to photograph those pieces, then list them on Etsy and put them away in a nice, neat box until they're sold.

I don't know if I would have found the motivation to become more organized without Caregiving.com's 30-Day Organization Challenge. I don't like to fail at anything, and making a commitment to this challenge was one of the best things I could have done for my family and for myself. I have been battling depression for the past two years since before mom's diagnosis, and my struggle seems to be worse lately. I think it's because I don't have to focus on mom's caregiving anymore, so the focus is on me and my losses. It's all part of grief and grieving. A competition to become more organized was, surprisingly, just what I needed to begin to look at my life with new perspective and with less stress.

I'm happy about seeing my desk again. I'm also happy that I've untangled the speakers and separated them for better sound since I took that second photo. During this "desk-cleaning" project I was pleased to find a bracelet I thought I had lost. Bonus!

Now, to rid myself of this paranoia. I feel like the objects lurking on that table behind me are making fun of me and just waiting for me to fail at moving forward on these tasks. Little do they know that I have them on my "organization" hit list for tomorrow.

Taking a Day for Dad

Dad in the Air Force, about 1950.

If I learned nothing else from taking care of mom during her last phase of her life, it was that I also was taking care of dad. Dad was like a deer in headlights when it came to emergency situations. Plus, even though he says he knows how to pace himself, he tends to overdo when it comes to an obsession -- like mowing the lawn. Oh, he has a riding lawnmower, but that thing tends to beat him up like a roller-coaster ride.

Losing a spouse can be one of the most stressful events in a partner's life, especially among elder couples. And, for men, the long and drawn-out final phase of a wife's life can be more stressful than that wife's sudden death. Men, especially, suffer more after a spouse's death, and reasons behind this rationale include the loss of social support or the inability to cope with stress.

Another study [PDF] tends to put other myths about spousal survival to a test. in this study, Deborah Carr discovered that:

...the closer the marital relationship, the more depressed both men and women were likely to be after their spouse died. She also found that surviving spouses who were better off economically, as measured by home ownership, were likely to be more depressed than peers who lived in apartments or retirement communities. "Those who own a home may do worse because they have the added strain of caring for a house," Carr speculates. "They may be more socially isolated, lonely, and even afraid of living in a home alone, compared to surviving spouses who live in apartments and have neighbors close by."

I worry about dad. A lot. Dad and mom had a very close relationship, and mom took care of everything in and around the house, including the bills. Dad had to learn how to do laundry, and he had to re-learn how to balance the checkbook. He also had to learn how to cook, although he always made a mean pot of beans.

But, I worry. It appears that the six-month and eighteen-month marks are the most crucial times. We're still three months out from the six-month mark, which puts him at higher risk, supposedly, right before the Christmas holidays. That juxtaposition alone is a stressful thought for me.

If you've read the introduction and other materials, you know that dad has a heart problem. What I've not mentioned -- except to friends on Facebook -- is that dad was diagnosed with bladder cancer this past February, just four months before mom died. He's supposedly doing well, but he's not in the clear.

I don't want to be writing a sequel about being my dad's caregiver. I hope and pray that dad can survive and thrive through the next year. I'll do all I can to help, but I'll need help in determining what's best for him. Hopefully, this is just another chapter in my current story.

Writing About Death

Last photo of mom and me, exactly one week before she died.

Before mom died, I read somewhere that it might not be a great idea to write about grief and loss when feelings about grief and loss are fresh and unrelenting. I believe I was reading Kim Addonizio's book, Ordinary Genius: A Guide for the Poet Within (2009). I almost hesitated to write about my experiences with mom because of that advice.

That advice was moot anyway, as I had signed up for a memoir writing class a few months before mom's death. Ironically (and I rarely use that word), the first class was held on the evening of the day following mom's death. I forced myself to the call for this distance-learning class, knowing that if I missed the first call, I would consider myself somewhat of a chicken. I could do this.

I'm glad I did attend that class, and every class following for six weeks. The phone calls were soothing for me, as I began to share my experiences as mom's caregiver. And, I think that my participation engendered some trust among the participants, because I was honest about my feelings. Sometimes too honest.

Society has built walls around dying and grieving. I used to collect etiquette books, and each book contained certain guidelines and societal "rules" for grieving, mourning, and funerals. Those rules, or walls, can prevent us from healthy venting about caregiving, death, illness, and even about the fear of encountering those subjects with our loved ones. I know that I was willing to talk about those subjects with mom, but she wasn't ready to talk about them with me or with anyone else.

The last thing mom did before she became too sick to function was to pick out the funeral home she wanted to use, their services for her funeral, and her funeral urn. She made those choices on Wednesday, three days before her death. Dad forced her hand on the issues, and she obliged, finally. I understand her fear and reluctance in committing to this task, especially when she couldn't talk about death at all. Especially her own death. That meeting with the funeral home director was the last coherent act she conducted in her life.

I can write about her death. I can write about her death and my caregiving with a vengeance, but without malice. We need to talk about death and dying. We need to embrace that final and most assured event as much as we do the rest of our lives. We can live with gusto, and we can die with the same fearless intent. We can set examples for our friends and family. We can be vulnerable without fear when it comes to this subject.

I think Addonizio is correct about the rawness factor, that sometimes it's not a good idea to spit out feelings when they haven't been examined or critiqued. At the same time, it might be good (and it is for me) to go ahead and write about what transpired, and then sit on it for a while. That's what I'm doing. But, in going back to re-read what I wrote, I change little. I believe in truth, and I believe in common ground. Death is common ground, if nothing else.

If you could talk about death and dying with your parents, no matter your age or theirs, what would you ask them?

Endnote: The class I took was under the tutelage of Mara Eve Robbins. I highly recommend her course when she offers it. Her website is Process, Practice, Words.

Happy 80th, Mom

Today would have been mom's 80th birthday. I started out hopeful, thinking that this would be a good day for good memories. But, as the day wore on I realized that I was just kidding myself. By the end of the day -- now -- I feel as though I've been beat emotionally and physically with a heavy wet towel.

I can't find any birthday photos of mom that we might have around here. In fact, I can't even remember what we did for her 79th birthday last year, even though I know I was here. I'm just too overwhelmed to try to find my notes.

On the up side, mom lived longer than most other parents, especially those I know about who died from cholangiocarcinoma. She had a good life, for the most part. At least her photos tell me so.

Chalking this day up as a learning experience.

Respecting Mom's Wishes

Mom and me, 2005, Chicago

Since mom died, I can sit quietly for a moment or two and I can hear her in my heart. She helps me make decisions. She tells me what to do about some issues regarding her personal belongings and she also helps me find certain things. We have, despite our contentious love over the years, that deep connection.

So, when she said she never wanted a memorial service, I knew she felt strongly about this wish. I knew it in my gut. She had her reasons, and most of them concerned so many dead friends and relatives and so many people who would be under the expense and time burden of travel. Understandable.

Frankly, I don't know how I could have followed through on a memorial service immediately after her death anyway. I hadn't slept for three days or nights before she died. Dad also was wiped out. All we wanted was to be left alone. Just for three days. The only person who disrespected our wish was their former pastor. I wasn't surprised.

Beyond this wishing and hoping, sometimes things happen that are beyond a person's control. Hospice informed us shortly after mom's death that they hold a quarterly memorial service for all the patients who died during the previous quarter. So, we knew that mom would be included in a memorial service in September. Initially, this announcement caused some stress for me, because I wasn't sure I was going to be able to return for this event. Dad was totally dead set against attending, because he wanted to respect mom's wishes for no service whatsoever.

But, as the weeks rolled by, dad and I talked about how much hospice meant to mom. We felt that it might be a good idea if we attended out of respect for several people, especially, who meant so much to mom. Then, we began to ask neighbors and friends if they'd like to attend. A few weeks ago, hospice asked for three photographs of mom for the service, and dad picked the photos out himself (despite the fact that my brother was visiting and he wanted to help). Dad did a great job. The photo shown here is one he chose. My daughter took this photo of mom and me during my master's graduation day in Chicago in 2005. That was a great weekend. We had a lot of fun.

This afternoon we attended that service, which hospice screwed up a bit. They included individuals who had died in August, and they couldn't break those names out of the pack before this afternoon. So, the service was longer than usual, but it was beautiful. Mom loved it. Mom especially loved when her music therapist sang. One of the last songs he sang was the last song he sang for mom the day before she died. It was the Irish Blessing.

Mom's far from Irish, but she loved that man's voice and his soothing nature. I was happy to connect with him again and to thank him from the bottom of my heart.

During the service, I had to walk up to the front of the hosting church's sanctuary and symbolically plant a bulb in a pot for mom (daffodil -- a funny story I'll save for later). When I turned around, I saw everyone who was there for mom standing and holding me in their eyes -- two long church pew rows filled with people who loved mom beyond all sense and reason. Those people were our backbone, our spine. They were the very people who were there with us every step of the way during mom's illness, providing food, running errands, holding hands, talking, laughing, crying, hugging, praying.

And, that was what this afternoon was all about. Mom wanted it that way. I heard her in my heart and I'm glad we respected her wishes.

Three months out...

Mom died three months ago this past Saturday. What I know from working at an alcohol and drug treatment center for part of my life (no, that's not on my resume), is that grief comes in waves.  Much like the desire to take another drink or drug, the body also begs to be a drama queen if you deny it comfort and the ability to say, "I don't like this change."

For the most part, the grieving is worse at three days, seven days, and 30 days out. Then, I believe it skips to three months, but that three month one is a doozy. Then, six months, 12 months, and maybe eighteen months. I'll have to check...AA (Alcoholics Anonymous) times their chips in response to the body's desire to go back to that 'old life.'

That's just what grief is about -- the desire to go back to that 'old life,' where you could pick up a phone and call your loved one, where you could meet him or her for a daily cup of coffee, where you could count on that person to be there for you.

So last week, I had a bout of crying that about burnt my eyeballs out of my head. It was the longest, hardest grieving I had done for my mother to date. Then, yesterday, I recorded a voice-over for the book trailer that Michele Laroque is creating for me at Deep River Studio, and I had a couple more rounds of crying left in me. But, these bouts were short-lived, and I was able to go on with a strong voice to talk about what happened with my mother and me.

This is not an easy book to write. It hurts to write about my experiences with mom. But, I want so much for my experiences to help someone else. Now that I'm past the three-month mark, I have about three months before the next big wave hits...I hope to get a lot of writing done by then.

PS -- It ALWAYS helps to have a kitteh in the studio.Michele was very supportive and encouraging, too -- a great experience, really. Now I just need a local musician to lay down an original track for me. Yes, I'll pay. I just believe in local.