Motivation

From Cure Magazine's article

This morning, Mara Eve Robbins posted a poem I wrote a year ago on my personal Facebook wall. It needs editing, but it hit home. The poem was about a comparison between my mother and myself, about death, and about the forty pair of shoes my mother left behind. It's been a little over ten months since mom died, and the last pair of her shoes left her closet on April 4. My daughter and I packed them into the car for the trek back home. Then, my daughter and husband piled themselves into the car and left me with dad.

Yep, I'm back in the caregiving saddle again.

Mara's post also hit home, because it was just a year ago that I took off with her to stay at her house in Floyd, Virginia for Easter weekend. Did I realize it was Easter weekend at the time? No. Something has happened to my thinking over the past three years that disabled my ability to connect with the rest of the world. Except for Christmas, holidays don't seem to exist.

And, it's Poetry Month, and I'm not writing poetry. I haven't written anything in the memoir, either. I haven't written my blogs or anything else other than work for a  new client. While I can use that client work for an excuse, I think, frankly, that I just needed a break.

Darrell Laurent, long-time columnist for the Lynchburg newspaper and author of several books, wrote something this morning in his public Facebook Group, The Writers' Bridge. He wrote:

"Losing our motivation is part of the larger creative process. We wouldn't have the bursts of inspiration and productivity without the difficult creative dips. 

"When we lose our creative steam, not only does our writing come to a crawl, but we also start feeling low about ourselves. 

"For example, when you aren't writing, the feeling that you should be working nags at the back of your mind. This tension creates further stagnation and deepens the creative funk."

Some tips he provided included 1) Honoring the rest period; 2) recommit; and 3) talk about your work...among others. Those three points stuck with me.

Since I don't believe in coincidence, I honor the fact that Mara posted that poem and that Darrell posted that article. They both motivated me to blow through this fog and get something down in writing.

And, now that I've started, it seems the flood gates are opening in my head. There's just so much...so much.

Two major events happened recently regarding the book. Denise Brown at Caregiving and I had another little blog chat, this time about marriage (and the marriage, btw, is doing much better). That 1/2 hour discussion is available at Blog Talk Radio.

The other issue is the article in Cure Magazine about caregiving. I'm not sure why they have me in that article, because it opens with me, but doesn't go anywhere with me. The initial article was much more involved. But, they had a photographer come out to my town to take a photo, so I guess they felt compelled to use it. As a result, I have a speaking engagement in Louisville in August. This is a good thing.

Last, but not least, I'm been somewhat gainfully employed by Merchant Negotiators since January. I have conducted a lot of writing and research for that company over the past few months leading up to that site's "going live" this past week. Once again, I'm writing about financial issues. If I ever win the lottery, I know a lot about how to manage those winnings!

As for dad -- he's doing fine. He's actually doing great. I just needed to validate that information for myself. More about him later at my blog on Caregiving.com.

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.

When are Support Groups Helpful?

When do you know when to connect with other individuals who share your diagnosis or your situation? It's up to you.

I found a great cholangiocarcinoma (CC) support group when I was at dad's house last month. The support group is a "closed" group on Facebook, which means that only members can see and respond to messages on that group's page. As far as I can tell, the group consists of patients and caregivers (current and "after care"), although this non-denominational group also welcomes medical professionals and students.

I never sought out a support group while caregiving mom, because I felt that I was getting the answers I needed from various reliable resources. Also, once I was a full-blown caregiver, I never had time to seek support. I was too busy with mom's appointments, her medications, the tasks we had to schedule (like saline flushes for her bile duct catheter), with my own work, and with my own well-being.

Looking back, I'm not sure I could have tolerated a support group, because I was on a short fuse many times. I did check a few of those groups out, and I wasn't ready. Lighthearted entertainment was not my cup of tea during my tenure, and I sure didn't want to hear about hope when we knew we had no hope with mom's case. I also didn't want to hear about bad news when I knew the news was anything but good for us (some folks will understand this logic!).

I will say I'm more than ready for the Facebook support group now. Now, I have something to share, especially with newcomers to the group who -- on almost a daily basis -- are reporting a loved one recently diagnosed with stage four CC. I'm learning a lot about this disease from patients who have been exposed to treatments that my mother couldn't tolerate with her physical condition. I'm also learning that patients often know more than their doctors and oncologists about their conditions.

I'm somewhat sorry that I denied myself the support of a group during my mother's diagnosis and death, but I did share everything with my friends on Facebook. Believe me, I don't know what I would have done without my friends' support. And, at the time, my friends were far more substantial in their support for me than a stranger's support. Now, however...

I seem to find more support among other caregivers and CC patients than I do among my friends. I don't know why this sea change occurred after mom's death, but I'm sure a lot of this disconnect has to do with my push to finance a space of time to finish my memoir. So commercial! At the same time, I also think that friends have only so much tolerance for death and dying.

And, it's for that latter reason that I find support groups so attractive these days. There's something about a finite boundary on life that brings out the honesty, support, and love that happens nowhere else but within a support group. In that environment, I feel I can share my tears, inappropriate laughter or comments (and find immediate forgiveness), and fears.

If you feel you need a support group, seek one out. So many support groups exist for all types of cancers as well as for caregivers. I'm not sure if this link will work for the CC support group at Facebook, but give it a shot: https://www.facebook.com/groups/CHOLANGIOCARCINOMAsupportGroup (if this link doesn't work, please let me know via Facebook).

For caregivers, I recommend Caregiving.com. This is a great space for folks who are caregivers to spouses, siblings, and friends who suffer from a myriad of physical impairments. Denise will probably meet you at the door. Please tell her I sent you!