Saturday, November 29, 2014

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!

Friday, November 28, 2014

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.

Sunday, November 23, 2014

The Writers' Retreat

Writing away at the writers' retreat.
I am so very grateful for contributions to my Indiegogo campaign -- which is almost at an end. Thanks to my supporters, I was able to attend the Green River Writers retreat at the Kavanaugh Center in Crestwood, Kentucky, this past weekend, where I had access to solitude for writing, to writers who offered constructive criticism for my poetry (which is going into the memoir), and an opportunity to read part of my memoir to a discerning audience.

I'll never read that piece in front of an audience again. The part I chose was the third section, where my mother dies. The part about breathe. I actually lost my breathe while reading the piece aloud. One fellow writer thought -- just for a second -- that I was acting, then realized that I was almost in distress. But, I pulled it out of the hat; although, today I'm exhausted. Reading that one particular portion of the memoir wore me out as much as swimming the English Channel (not that I can swim, mind you).

I haven't been able to attend a Green River retreat for three years. The last time I attended a retreat, my mother was in apparent good health. It was a constant marvel to me how the past two years flew by, how quickly a story can become a dark memory that's so easily tucked into a corner. By forcing myself to get out, reconnect, and read and write, I'm forcing myself to connect to my mother's death over and over again. I can take it...I hope, though, that none of my perceptions are warped in the process.

This is why it's so important for me to write now, when memories are fresh.

Other highlights this past weekend:

1. My laptop is biting the dust. Crap.
2. Met George Eklund at the retreat and learned about some of his creative poetry processes.
3. I reconnected with several friends who also lost spouses, parents, and friends over the past three years.
4. I connected with new friends who also lost spouses, parents, and friends over the past few years.

One writer friend lost 29 friends -- some close, some not-so-close -- over the past year. We can't figure out if all these losses are normal at our ages, or if we're actually transitioning into a Stephen King novel. The cancer losses are breathtaking.

You can view some photos I took at the conference if you want to feel more connected, too. I'm into black and white photography right now, as you'll learn. I think someone took a photo of me along the way, but I'm not certain. I do have witnesses.

Thursday, November 20, 2014

Letters from the Past

Letters, negatives, and other paraphernalia.
Mom left behind a lot of "things" to go through. I don't like her stealthy way of hiding recipes (which all can found found online save a few), coupons (some dated to 2005 or earlier), and newspaper clippings. Other items, like the box filled with letters that her parents wrote the month before mom was born in 1934, are well worth discovering.

I went through this box of letters a few nights ago. Being an historian, I recognized the value of these letters. They're not just love letters filled with endearments...they're artifacts that give a glimpse into what life was like in Virginia in August, 1934.

At that time, my grandmother, Elizabeth, was living in Roanoke. Her husband of barely nine months, Leo, was stationed as a National Guard recruit in Virginia Beach. It was four years into the Great Depression, and my grandparents note the cost of several items. They also talk about borrowing $3.00 like it was a burden and a sin. And, yet, they're about to have their first child together.

I think these letters might make for yet another book...

Sunday, November 16, 2014

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.

Friday, November 14, 2014

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.

Thursday, November 13, 2014

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.

Monday, November 10, 2014

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).

Friday, November 7, 2014

Making Progress with the Organization Challenge

Two days ago I posted photos that I took of the spare bedroom that my husband and I are working on so he can use that space to make his hand-made baskets. Those photos, which I took on November 1st, represent the mess created by me from traveling back and forth between my parents' home and my home over the past two years -- plus dragging a lot of mom's things back with me to my home. Today, just seven days into the month, we've made tremendous progress on this room.

I'm very grateful to Caregiving.com's 30-Day Organization Challenge, because I don't believe we would have made this progress without a challenge. Take a look:

The first image of the corner near the closet -- everything is gone! I won't tell you what my office and our bedroom look like, though...
I couldn't back up far enough to take a photo of this corner of the room -- now that corner holds my husband's desk, computer, and basket supplies that were, initially, in our bedroom. We did a little switching around here.
As you can see from the photos above, we moved a lot of things out of the spare bedroom. But, a lot of my husband's things were in our bedroom, so we simply switched the portable closet for the desk, and his bookshelf with basket supplies for my bookshelf that still has a lot of junk on it.

This shot shows a LOT of things moved. I still have the rest of the month to go through all the boxes.
I'm very proud of the images above -- even though I haven't gone through all the boxes yet, I was able to organize the bags and loose items into separate piles to make my task easier.

Uh-oh...I have "stuff" on the top of the bookshelf. I'll move those items this evening.
All my husband needs to do to get started making baskets again is a table. We've got one -- he just needs to bring it up from the basement. And -- ta-da! This part of the task is done, all in just one week.

Wednesday, November 5, 2014

30-Day Organization Challenge, or How I'm Dealing with "Stuff"


One corner of the room -- and this was after I had already moved some boxes.
Caregiving.com started a 30-Day Organization Challenge for members on November 1. Denise is providing daily prompts for folks who want to follow along and spend 15 minutes per day organizing a purse, a mud room, bills and receipts (which would take me three months alone!), or under the kitchen sink. Members also have a choice to pick another project to organize. Since I knew I'd spend more than 15 minutes per day on most of the prompts, I decided instead to tackle one large project.

I couldn't move far enough into the room to capture the entire mess in one corner.
Since we're trying to work together on projects, I approached my husband about this organization challenge. He makes beautiful hand-made baskets and he could bring in income with these baskets if he had a larger space to work with. For the past two years he was stuffed into a corner of our bedroom, with no room to work at all.
The chifferobe? It's for sale (local only)!
I suggested that we clean out the 'spare' bedroom that isn't a bedroom at all. As you can see from the photos, this room is a catch-all for my clothes as well as for my mother's things that I'm salvaging from my parents' home. The room was, on day one, so dysfunctional that I couldn't find clothes to wear. For the past five days now -- every day this month -- my husband and I have spent approximately 15 minutes per day moving things back and forth between our bedroom and that spare bedroom. You wouldn't believe the difference already!

The books are mine -- but most of them will go up for sale on Amazon. That's just one bookshelf out of ten in this house. A little bit of a nutty obsession -- each book I own has a story behind it.  The clothes? They belonged to mom. What the heck am I doing with them? I'll figure it out...
This project could have been a daunting task, but with my husband's help it's coming together quickly. At this point we're just moving things back and forth, though. The task of going through all the boxes and organizing things is going to take the rest of the month, I'm sure.

I'll post "after" photos when we're done. Then we can tackle the living room, which is almost 1/4 filled with more boxes from the folks' house. Oy.

Sunday, November 2, 2014

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!

Contest!

Friday marks the beginning of a new phase in my project campaign. This time YOU can receive monetary benefits from a merit-based referral contest. This contest is designed to increase contributions to my project, and you can also win a gift credit card to use as you wish.
  1. I'll provide one $100 VISA card to the person who brings in the most contributors to my campaign at any level, no matter the dollar amount. For instance, if you have 500 contributors at $1, you could win this prize for your efforts.
  2. I'll provide a second $100 gift credit VISA card to the person who brings in the highest dollar amount, no matter the number of contributors. For instance, if you bring in one contributor at $1,000, you could win this prize for your efforts.
  3. Finally, I'll provide a $50 gift credit card to the person who brings in the the most referrals, period. You deserve a prize for working so hard! For instance, if you bring in 550 referrals, but none of them contribute, you can still obtain this card
To learn more, visit the Contest Page on this blog (listed in right-hand column). NOTE: Only one prize per person, so at least three people must compete for all prizes to be awarded for your efforts.

Saturday, November 1, 2014

Still Time to Compete...

This is a screenshot of the leader board on the dashboard on Saturday at 2pm. I didn't post on Friday, because it appeared nothing has changed over the past week except a few names and the fact that I brought in more money (and I'm not competing). So, you still have plenty of time to sign up and gain interest -- view the referral contest information and follow the rules to win by November 24th.