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.

The Holidays for Caregivers

What will Christmas be like without mom? I'm about to find out, with support from the folks at Caregiving.com...

The holidays will never be the same after a death of someone close to you. Even if that person got under your skin, something in you will expect that irritation -- especially during the holidays. That voice! Will it stay in your head forever?

On the other hand, the loss can be overwhelming. Not only is a loved one gone, but your life has changed. Forever. There's no pulling a cat out of a hat on that one. What are you feeling now? Rage? Frustration? Guilt?

No matter what you're feeling (if you survived Thanksgiving, that is), you might find comfort in the holiday survival articles posted at Caregiving.com. The "Attitudes on Platitudes" gave me my first laugh-out-loud moment yesterday. "Bah Humbug? A True Tale of Christmas" showed me how I have the power to alter my holiday traditions to make a new history for myself and my family. "Ten Signs an Aging Relative Needs Help" helped me decide if my remaining parent needs help or if I need help...(reading halfway through the list made me realize I'm in dire straits!).

I invite you to snoop around at Caregiving.com to see if this site fits your needs. I know, while caregiving, that little time is spent on what the caregiver needs or wants...and it takes time to commit to dedicating yourself to a group of individuals who may really understand you and care about you...but, hey. During the holidays, it might be just what you need.

Membership is free. Just join us. Now.

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.

New Post at Caregiving.com -- a Great Community for Caregivers

Dad and my husband at a market this past fall.

I have a new post up about long-distance caregiving for dad at caregiving.com. This task of caregiving for dad is not a chore at the moment, but changes have altered the scenario both here at my home and at dad's place. My footing as a caregiver for dad is totally off-balance and unsure. I don't really know what he needs right now, but I guess that unknown is alright. At least, he seems to be doing well for his age. He seems to be doing somewhat fine alone, but I think I know he's not happy.

I'm not happy. None of us are happy right now. Life is stressful, but we all keep going along, doing what we think we need to do. Some of that "knowing" has changed, though, since mom's death. I am finding support at Caregiving.com -- what a great little community with some great leadership through Denise. In fact, I can't keep up with all the blogs, the activities, the podcasts, or the events this site offers; but it's great to know I have those resources available.

Without caregiving.com, in fact, I wouldn't have had the initiative to get organized around here. Hugh, my husband, wouldn't have a studio for making his baskets. I owe all that to the short amount of time I've spent with Denise and the other caregivers at that site.

I wish dad would find a community similar to what I've found with caregiving.com. He's not computer savvy, though, so that community would have to meet in person. But again, I don't know what dad needs right now. I don't think he knows what he needs.

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.