Cancer Caregiver? Participate in this Survey...

Hi folks -- I'm passing on this information for Alexis, who is studying the ways that caregivers might interact with their support groups. I'll let her tell you all about it...

"My name is Alexis Johnson and I am a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. My research centers on health communication processes, and I am conducting research that I hope will improve our understanding of supportive communication between social networks and family caregivers of patients with cancer. As someone who has provided care to a patient with cancer, I am interested in conducting research that is aimed at better understanding the memorable, supportive messages that are shared with family caregivers in cancer.

"To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate, and participants in all other states must be at least 18 years old to participate. If you meet these requirements, and are a current family caregiver of a patient with cancer, and have 20-30 minutes to complete an online survey, you are eligible to participate in this important research."

You can learn more about this survey by going to the site and clicking on the link on that page. You can also find Alexis' credentials and contact information at that site.

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.

A Warm Welcome to the Blog Party!

Young woman decorates the Christmas tree, painting by Marcel Rieder (1862-1942) from 1898

A warm welcome for all my new visitors (and old friends as well). Today marks the beginning of the Caregiving.com's Fifth Annual Holiday Progressive Blog Party, and I'm one happy participant! Throughout the week of December 7, you can stop by the blogs of family caregivers and drop off holiday well-wishes and good cheer. This year, the party also includes companies that provides services and/or products to help family caregivers.

1. Be sure to stop by each site during the week. The sites are listed at Caregiving.com.
2. When you stop by, share a comment and let the blogger know you’re visiting because of CareGiving.com’s Holiday Progressive Blog Party.
3. Be sure to stop by that page at Caregiving.com regularly, as more participants may be added as the week goes by.

I was happy to be able to donate a prize for this party -- an invisibility cloak. Everyone (caregivers especially) would love a chance to become invisible every once in a while, I believe. Put on that cloak (provided by Cat at her Etsy shop -- if you don't win this cape, you can purchase one from Cat!).

Welcome, welcome, welcome. I hope you can stay a while...

Blog Parties and Invisibility Cloaks

The silver "invisibility" or "superhero" cape -- perfect for caregivers for the holidays!

If you've followed me on Twitter, Facebook, or here at the blog, you know that Thanksgiving sucked for me. But, I recovered nicely, mainly because I was grateful that dad had a great time with his friends. Plus, my brother called, and -- despite my initial nausea over the smell of my husband's turkey -- that meat sure was good on a sandwich.

Next up -- the "real" holidays. Christmas, Boxing Day, Hanukkah, whatever individuals celebrate during December. I'm dreading the upcoming holidays and all the traditions that go with them. In a discussion with other caregivers and family members who lost their loved ones this past year to bile duct cancer, one woman said, "Christmas will even be worse" than Thanksgiving. I thought, "Wow -- I don't know if I want to project that far ahead," but then another woman agreed that the holidays will be worse, and then another woman agreed...

So, maybe Christmas will be worse than Thanksgiving, but I'm going to do everything I possibly can to reverse that direction for myself. Someone else asked if it was acceptable to be "peacefully inactive" for the holidays. Of course! Even more so, it would be wonderful if caregivers could become invisible. Just for a few hours, maybe, or a day...and, in the right situation, maybe for an entire week through New Year. What if we could wear an invisibility cloak that could serve us throughout the entire year when needed?

So I went hunting for an invisibility cloak and I found one at an Etsy shop based in England. This cape is not for me, however. I'm giving it away through Caregiving.com's upcoming Caregiving Holiday Blog Party. I've posted a link for this event in the right column on this site. If you cannot see that red background photo, please let me know and just use the link in this paragraph. Those links can take you to the event page to learn more about how to win this cape and at least five other prizes during the week between December 7th and 13th.

Many thanks to Cat and her to her Etsy invisibility capabilities! I'm excited about providing a caregiver with a way to become invisible anytime he or she wants. What a great gift, period, for any caregiver!

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.

I'm a Caregiver, and I Matter

A birthday present to myself. Brenda Avadian leads caregivers in a simple Mirror Exercise to remind them, "I'm a Caregiver and I Matter." Caregivers experience a wide range of reactions depending on where they are along the caregiving journey.

There's No Turning Back...

My Logitch K120 keyboard, which I've owned for about three years. Note the dents, the missing letters, and possible pieces of peanut butter sandwich lodged between the keys. This is a writer's keyboard.

If I had been on the ball today, I would have written a post for Caregiving.com about caregiving my father from a distance. That topic is so muddled these days that I can't make sense of it, though, and I can't put it on paper yet. Death, when it touches someone close to us, changes us. All of us. There's no turning back.

That change goes very deep, too. I realize, in my conversations with other caregivers, that we're a breed apart in many ways. We have one portion of our lives (usually our own) that's disorganized and unimportant. The other part of our lives is insanely organized, much like Temple Grandin's Livestock Handling Systems. What goes in follows a defined path until it exits.

My life as caregiver to mom was organized. It became more organized the sicker she became. The one-time-per-day seven-day pill holder went to a two-week pill holder that held morning, noon, and night pills. The journals became real journals instead of sticky notes. The physical observation went from downright obvious to sly, so it wouldn't upset mom to know that I was becoming more concerned about her yellow skin, her swollen ankles, her swelling stomach.

My life, on the other hand, kept fading into the distance. It helped that I wasn't at home for this illusion to work. Home became a lone fragment of fog floating up and over a mountain away from my daily routines.

But I'm home now. It's real. I'm becoming more organized. You may have read about part of that organization in my previous entry about changing the spare bedroom into a basket-making studio for my husband. My office? Still the same -- I have a path that leads from the door to my chair. I have a keyboard with no letters from overuse. I have chaos.

But, I'm focused on my mission to finish this memoir. My tool is the clock. I've used it before in keeping time with mom's daily routines, and I can use it again in writing this book. I know how that time-keeping works, as do so many other caregivers. Time. That linear framework consisting of hours, minutes, and seconds is all we have to align ourselves among the realities of health, sickness, and death.

There's no turning back (except for this damnable daylight savings time bullcrap).

Who Hasn't Been Touched by Cancer?

Mom -- hoping to actually drive this Jaguar on her 60th birthday in 1994.

I've been floating between two towns during the past two years, trying my best to actually be present in my own home when I've been pouring my heart and energy into my parents' home. Caregiving takes effort. It takes money. It can take a person's soul if the caregiver isn't careful.

That's what cancer does. It eats at its host and it tries to reach out to eat everyone who cares about the cancer patient.

In both towns, I hear stories about people who have died from cancer, people who have recently been diagnosed with cancer, and people who are surviving cancer. In most cases, individuals relay those stories in a "hush hush" manner, as though to speak about cancer out loud makes that disease contagious. The survivors are a different story, because even the media wants to shout those success stories from the rooftops; but, those stories are fraught with doubt. Are the survivors really "cured," or are these cancer survivors and their families hoping against hope that that victims are in remission forever?

Who hasn't been touched by cancer? Who hasn't felt hope that cancer can be "beat" into submission? Who hasn't felt that this disease deserves only a whisper instead of a shout...shouts of anger that people of all ages are falling victim to these alterations in their DNA? People we love. People we don't even know who touch our hearts with their stories.

Who hasn't been touched by cancer? I'd like to know.

Things People Say to People With Cancer

During my stint as caregiver to my mother, I was privileged to accompany mom on her visits to her various doctor appointments. There were many appointments; but, as mom continued to hang on to life, the appointments dwindled. Instead of explaining why those appointments began to shut down, I'll share a few quotes that I heard first-hand from mom's primary physicians and nurses:

• We didn't expect you to live this long (doctor who was treating mom)
• Cremation? Why? You're so beautiful, I thought you'd go the open casket route (nurse).
• You're still with us? (doctor who was summoned for mom's treatment for a second time within four months)
• I can't look at the cancer count. I want to sleep at night (a doctor's answer to my question about mom's cancer advancement).

You get the idea -- out of the mouths of babes scenarios, right? Except the individuals who offered their opinions were professionals. What, then, can cancer patients expect to hear from friends and relatives who aren't professional doctors or nurses?

If you know a cancer victim, please don't try to excuse yourself from making stupid remarks to that person because you're not a professional. If anything, as a friend, relative, or neighbor, you might have a bit more insight into that cancer patient and become more compassionate. At least, that's the hope.

A friend of mine found that sometimes that hope runs slim. Craig Allen has cancer, and he is a realist about his prognosis, and responses to his current treatment option drive him mad. Literally. He's taking hormone treatments that provide him with physical reactions that are similar to menopause hot flashes. When he shares this news with female listeners, they often respond with:

"Ha! Now you know what we go through."

Excuse me? Your menopause hot flashes are similar to my cancer treatments? I'm sharing a link to Craig's justifiable rant. Please read to understand how a simple statement (like "We didn't expect you to live this long") can affect a person who is dying from cancer.

Thank you.

Taking my Gratitude to the Next Level

I'm grateful that mom left a story for me to tell.

I mentioned in a previous post that I began to share a gratitude list every morning on my private Facebook page. I started this practice about three months before mom died. In the beginning, I felt very self-conscious about expressing appreciation for what I had, although now that self-consciousness seems ludicrous.

I was late posting my gratitude a few days. Some days I was up before the rooster crowed, pondering how I could turn things around in my head to show that I was looking at a brighter side. Believe me, some days I really worked hard at this list. I skipped the list for at least five separate days, because I just couldn't shake my funk enough to see the light.

I don't know why I stuck to five items daily. Perhaps that fifth (or fourth, or even third) item on the list really takes some genuine reflection and change of attitude on my part. By the time I'm through with each morning's list, I often gain a tremendous amount of insight into my feelings and motives.

A few of my friends are in the habit of offering up a gratitude list on a daily basis. What I love about these lists is that I get to know that friend just a little bit better because of what she (yes -- usually a she) is going through. A number of friends, even those who don't post a gratitude list, have approached me to tell me how much my lists mean to them. Mostly, they can relate to a lot of things I went through during my time as a caregiver to mom.

I continue to post those lists on a daily basis, and the focus now is more on the aftermath. I can't seem to get my head wrapped around the lists these days, and I think I've reached a threshold. I think I know the cause behind my lackadaisical attitude...I've become less grateful. The habit is now just a habit, and I need to challenge my perspective. As a result, I want to take my list to a new level.

Starting tomorrow, I'll be posting my daily gratitude lists to my Cancer, Caregiving, and Contentious Love public Facebook page. I think this is the right thing to do, because I'm feeling very self-conscious about the move. I realize that many new readers may not know my entire story, and that's another prompt for me to become more aware of my motives and my explanations.

Maybe, after a few weeks, I'll begin to see my new self-consciousness as ludicrous. And, I hope that my habit will help someone else. I would be most grateful if you'd let me know.

A Ritual I Developed During My Caregiver Stint

My ritual is somewhat like a pinata ceremony.

I write these blog entries in hopes that readers won't judge me, as I am bringing my own perspective to topics that deal with a death in my family. Although death is common ground, and should -- above anything -- unite us somehow, I've learned that folks may not agree with my outlook on certain topics. Feel free to disagree; but don't tell me I'm wrong, especially over a ritual that saved my sanity for the past two years.

According to The Chaplaincy Institute, ritual can make a person "stop, focus, and make sacred that which is ordinarily taken for granted. A ritual can be used as a way to give voice to the unspoken, facilitate healing, or remember a person or event. It can also be a way to refocus personal thought patterns so they become self-serving, not self-defeating. A ritual does not need to be elaborate or take a lot of time. In fact, to keep meaning from getting lost, the simpler the better."

That article goes on to provide an example of a ritual that involves an altar, candles, and prayer, which is fitting for that particular perspective. Other rituals I've known caregivers to use include yoga for meditative qualities and also for keeping the body fit. I love yoga practice, and I understand how yoga benefits me. But, I haven't had a class since the last one I took with Terri Hug, and that was before I even learned about my mother's illness. Terri is a sister from another mother, and I'm having a difficult time choosing to take on another yoga instructor after becoming so close with Terri. I need classes, because I don't have the self-discipline to practice alone.

Other caregiver rituals might include a set time each day/week to get away, or time to be alone. In my experience, however, getting away from home was fraught with anxiety, because every time I did leave home, mom would encounter an emergency situation. The only time I was able to get away was during Easter weekend, when some friends kidnapped me to spend a weekend with their poet and bard neighbors. But, that wasn't a ritual, although the escape was sorely needed and appreciated.

My alone time and ritual came about without planning. I still practice it after mom's death, especially when I'm at my folks' house. I leave the house proper to sit in the screened porch with my Android and begin to play Candy Crush Saga. Playing that game in itself is not a ritual; but, playing game #75 over and over and over again became a ritual for me, one that isn't elaborate or that takes a lot of time.

Other friends who play that game continue to offer free passes for me to get past game #130. Yes, that's how far I got before I learned about mom's cholangiocarcinoma. But, I'll never go there again. I doubt if I'll ever get past game #75. If I play the game without thinking about the game, it provides me with time for reflection and planning. If I play the game with intent on beating the other two women who are ahead of me, the play takes me away from everything. The fact that the game only allows play for five games unless the player wins a game (garnering one free game per win) is convenient, too. Once I've played through those five or so games, I'm revitalized and ready to get back to more pertinent tasks at hand.

I play game #75 when traveling, too, because my husband refuses to let me drive. But, the game isn't a ritual then -- in fact, it's boring. The only time Candy Crush Saga game #75 becomes a satisfying ritual is on my parents' back porch. This rite offers me comfort, mindlessness, and even some sense of self-worth and achievement. I am only a few points away from obtaining the #1 spot on that game. When I achieve that goal, I don't know what I'll do.

Note: Candy Crush Saga is a puzzle game distributed by King.com. The logo image is from Wikipedia.