illness | THE WRITE PLACE...

May 12, 2014
by Patti Singleton 27 Comments

Memoir Monday 1

The Memoir Monday feature will be posted every other Monday.

This memoir writing is tough stuff. Many of my online friends are from a circle of published or soon-to-publish memoir writers. Most are based on hard subjects; illness and injury, death by disease or suicide, and abuse or neglect. You have to wonder why these memoirs are so widely read. At first glance those subjects are sad or depressing.

Why do we read them? I have always read memoirs and biographies. Sometimes I’m drawn in by pure curiosity, other times the author is covering an experience that I have had, or someone close has had. I want to know how they got through it. I want a blatant or even a subtle message of hope. Yes, hope.

The author lived to write about it, so maybe they have a secret of survival to share with me. Maybe they write so well, with that just-right stroke of humor, that I will be whisked away on their magic carpet for a few hours. I hold onto the hope that the author not only survives, but thrives after their crisis. Hope. I read memoirs for hope.

Hope may also be the reason that I keep hitting delays in my own memoir. August will be five years since Paul’s death. The memoir keeps pulling me back to the hard memories, when I am beginning to see the light of happy memories of Paul, in my everyday life. Yet…we both truly wanted to share our journey with others. We wanted to offer help along the way, for others in a health crisis, and we wanted to offer hope.

That is why I took on Memoir Mondays. I need to get this show on the road! I want to share this part of the journey with my community. I would love some feedback. I plan on exploring the topic of memoir, as well as some resource links for others who are writing memoirs. I’ll review some memoirs and announce it when my friends publish their memoirs. There is a large community of memoir writers online, so this won’t all be new information, but it will be what I think is interesting, and what I think you might enjoy.

In the mean time, here is some of the writing from within my own thick “Memoir” file.

A little background: My husband, Paul, spent a year in and out of hospitals, and in short-term housing near the main hospital, while fighting Acute Myeloid Leukemia and the Graft Versus Host Disease (GVHD) that he got as a result of a bone marrow transplant. During that year, I kept family and friends updated by way of an online patient journal on Care Pages. The following excerpts are from the memoir I’m writing, and were written during a few days of the last hospital stay:

June 13, 2009 Last night we had our best sleep in a long time. That’s good, but really, we’re funnier when we go sleepless in Seattle. Since yesterday, Paul has a bit of medication-caused edema in his belly and arms. He is still taking walks around the hallway loop, 10-40 minutes a day. He’s trying to do his exercises, but his belly argues with too much movement.

The biopsies from Tuesday’s procedure showed that Paul has adeno virus in his stomach now. They have added two more drugs to fight it, and more fluids before and after the new antiviral. It’s a toss up which is worse, the virus or the treatment. The other drug protects him from the damage the antiviral causes. What a viscous circle. They continue to try and balance his glucose, but it keeps dropping low , then spiking high. They began a new plan today and it has stayed pretty even so far. Through it all, Paul pushes on to do everything he can to get better.

Wishing we were there,

Patti & Paul

June 14, 2009 (warning–talk of needles) Paul is doing better today. His cramping belly has let up a lot. This was ATG day, when they pre-medicate him, which sends him off to a pretty deep sleep. This eve he had his weekly x-ray. We walked earlier, and will walk again later.
Tomorrow is ECP day, when he is hooked up to a machine in his room for 3 1/2 hrs. I can’t remember if I told you all about it or not, but they put a large needle in a vein, then strap his arm to a small board to keep it immobile and straight. They take blood out, separate it, take one layer and treat it with a photosensitive drug, then pass the treated portion under UV lights, then the machine puts it all back inside Paul’s vein. I have read some encouraging studies about this therapy, and we are hopeful that it can help clear out the GVHD.
Everything they are doing will take time, so we are settled in for the long haul. We’re up for it, though. Whatever it takes to get us back home and Paul healed.
Husky stadium is outside our window, so we have been watching the flurry of graduation taking place this weekend. It is surreal to watch all these young people celebrating starting out their lives full of hope, from a hospital room window, where we fight for Paul’s life.
Paul says to tell you all, “Hi!” and thanks for all the support.
Paul & Patti

More background. Paul passed away in our bed at home on August 9, 2009. Less than a month later, I started back with my emails to friends and family, while I tunneled through grief and estate issues.

Sept 2, 2009 BLOG BLOG BLOG BLOG—It’s all about me! (I really know it isn’t)

Just tonight, I realized that I miss doing the updates about Paul’s health and our daily lives as fighters-for-his-life in a foreign land (hospital in Seattle). I thought that I could continue in a private journal, although the feedback is disappointing :>) So now I will write about me fighting for my mental life in this foreign land of Paul Is Gone. I will share the journey with you, because it is a habit that I still need.

I went to the doc today because a sore throat kept me up all night. I just have some infection in my throat and sinuses. With a few antibiotics I’ll be on the mend. I feel like hell, okay? I’m only up now, because Mark (family friend, lives close) signaled with his gate bell, that he was dropping off provisions, along with a mocha from my Aunt Judee. I couldn’t get back to sleep. I got up to see if no news was still good news—yes, it is! That means no evil attacks about the estate today. Someone spread the “rumor” that there was going to be a sale here this Saturday. Friends and family think the rumor was spread just to worry me, ahhhh, success for whoever started it!

I feel like such a scholar; I added “Judee” and “ahhhh” to the dictionary! There’s just something empowering about adding words to a dictionary… my personal dictionary on my computer…but STILL!

Finally, I changed the auto insurance to only cover my truck. One more thing done. Oh, that would be two, as I also called to get paperwork started for a small pension.

From the long, wide deck overlooking the back yard and acreage; A little after 8 P.M., and here comes that moon, right on time. That was my entertainment last night; watching as Jupiter chases the moon up the hill and over the tree tops. Much better than My Name Is Earl—sorry, Paul, but anything is better than Earl. I just realized that the moon actually rises in front of, and then above Jupiter. When the moon finally takes the lead, Jupiter resumes the chase across the sky. That’s way better than that episode when Earl got stuck in jail. I do not miss television. I would watch unlimited hours to have Paul back.

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Thanks for being here,

Patti

October 24, 2013
by Patti Singleton 13 Comments

Someone Needs You. How Will You Answer The Call? Part 1

Holding You Up
A bronze statue on hotel grounds in Kauai, Hawaii
PHALL PHOTO 2012

by Patti Hall

They Say That Practice Makes Perfect

Technically, I wasn’t looking for practice or perfection when I answered my sister’s phone call from Alaska a few days ago. Just last week I was deep into my grieving cave-woman mode. Tuesday, I traveled about 350 miles (round trip) to a convalescent facility in Oregon. I met with the care team of my sister’s mother-in-law, Mrs. M. Yesterday I started cleaning, packing and planning for an extended stay at the home of Mrs. M. in Portland, as her caregiver.

Caregiver: Is This A Calling And/Or A Bridge?

My caregiver internship began within the parameters of my first parenting role when I was 28 years old. That’s what parents do, they give care. Care-giving starts when you wake up in the morning, extends throughout the day, and continues into the night. It is wiping snotty noses, changing diapers, feeding, clothing and loving those in your care. Care-giving is sleepily welcoming a tearful dreamer under your covers, and into your arms, in the middle of the night.

To further my caregiver qualifications, I answered the phone and agreed to join a caregiver group in California. A troupe of his sisters and nieces, gathered at the home of my maternal uncle, when he was in the last stages of his battle against cancer. We came from 3 states; sometimes one at a time, sometimes overlapping, but one of us was always at his side. Despite my uncle’s sad prognosis, he basked in the songs of this Florence Nightingale choir. The songs were expressed in our laughter and love. We nurtured, laughed, cried, reminisced and took care of his physical needs. It was the first time that I truly considered how fragile life is.

A few years later, an interim caregiver position came available via an out-of-state call from my children’s father, aka my former husband. His mother was in her 80’s, living alone and had recently been widowed. She was not doing well emotionally, although, she was physically fine. I packed my bag, drove 100 miles north and left my own family to fend for themselves (again). K and I had known each other for many years and we had remained friends.

K was in deep grief and needed help with the mounds of paperwork and legal procedures that come after a death. While her son handled his job and household transfers from Utah to Washington, I helped K negotiate the details at hand. The signs of dementia came on fast and I consulted her son over the phone. I took K to her doctor and explained our concerns. She was poked and prodded and tested.

I received a promotion. Along with K’s paperwork, legal matters and emotional distress (grief), I had to keep her physically safe. From herself. Household hazards suddenly loomed everywhere. She was a fragile child one moment and an angry woman in the next moment. By the time her son came, K and I were exhausted and traumatized by trying to navigate the chaos brought on by the changes taking place within her brain. I returned home and wished that I could have done more.

Stay tuned, Part 2 will be posted soon…more caregiver experiences and I ponder whether this role is a calling or bridge to the next step in my life.

Have you answered the call? We’d love to hear your story in the comment section.

Helpful Links:

http://www.caregivers.com/caregiving/ All things caregiver.

http://alzjourney.com/helpful-resources/ An incredibly helpful list of resources about dementia, Alzheimer’s, and caregivers.

Peace,

Patti

August 16, 2013
by Patti Singleton 20 Comments

2 Important Ways To Help Friends Or Family In Medical Crisis

Grani & the little grands taking a break after jumping on the trampoline with a sprinkler under it. My clothes are soaked! A hard day–Tiven’s service, and we all needed the comfort of our crazy family. Cora, Cameron, Nola

Do you have friends or family in a medical (or other) crisis? Who doesn’t, huh? How are you handling that? In my small circle we have dealt with some big ones over the last 4 years. I never did get my cape or badge or certificate, but I still feel I have enough real life experience and research to back my insights about these heart-breaking situations.

The biggest impact on giving comfort can be in what you do or don’t say. Skip the ubiquitous cliches and resist sharing your own similar, (but actually, completely different) experience. No one is in a hurry, so take your time and give some thought to each word that comes out of your well-intentioned loving mouth. Make it about them, (the victim or the caregiver) not you. “This must be so hard for you.” “I’m so sorry.” “I wish you weren’t going through this.” Like that, you get the idea; short, sympathetic and focused on them. And, no %^&* cliches! None.

The second biggest impact on offering comfort is not to make an ambiguous offer to help. Again, think first, before you even come into contact. Instead of asking your crisis-foggy-brained friend or family member what you can do for them, ask yourself what you would need. If you were in the same situation, what would you need? Then make a list of practical, helpful things that you are certain you can commit to.

List maybe 5-8 things. Like, “I have Tuesdays off, I can make a meal for your family and do some laundry for you.” “I can come over this weekend and mow the lawn.” Or clean the house, help you make a calendar of things to do, run errands on a specific day, or any day, if you are available. Do they have a patient care page set up online to keep family and friends in the loop without a lot of phone calls? Whatever will be the most helpful for their situation. Write your final five to eight offers and hand it to the caregiver or the patient. Make sure that all your contact info is included, even if they are your best friend, and you talked on the phone every day before the crisis. Foggy brains.

If you are not up to a big time or energy commitment, but would like to do something, offer to read to them. Or to sit with them for 1/2 an hour while their caregiver takes a break. Can you stop by and get their mail for them? Bring them a treat? How about be their secretary for an hour? Maybe a mini spa treatment; braid hair, rub feet, paint nails…you know them, what would they love?

Careful consideration of these two things can have the biggest impact on the care and comfort that you can offer a friend or family member during a crisis. I’ve read hundreds of books and articles on the topic, and the same two issues come up over and over again. We tend to say the wrong thing or we don’t offer specific, practical help. If nothing else, find 100 ways to say that you are sorry, and skip offering to help until you know what to offer.

I hope this helps you and yours, I wish none of us needed to know or use this information.

Patti

Feel free to add your suggestions, questions or comments. What did I miss?