visiting palliative care

First, to set everyone’s mind at ease, no one in my life has a terminal diagnosis. Sadly, it seems that most people when they hear the words “palliative care” think that it is the equivalent of hospice care, but it is not. Hospice uses palliative care services with those who are experiencing their final months of life, but palliative care is available to anyone of any age and diagnosis.

Palliative care is a team-based, multidisciplinary approach to managing pain. Frustrated by the poor pain control following the compression fracture and subsequent vertebral collapse that Grandma had last fall, and the loss of appetite, weight loss, and increase in a-fib that followed, we managed to get a referral to the palliative care practice in March.

We are blessed to be working with the amazing Sister Hermie. I know in some places all nurses are called Sister, but Sister Hermie actually is a Catholic sister. I’m not sure what order.  She is originally from Africa, but is working as a nurse-practitioner specializing in palliative care here in the US. She is open and engaging, with a lovely smile and ready laugh. She manages to get the medical information she needs by asking questions within the context of storytelling. Even Grandma, who is endowed with a natural New England reserve, is charmed by Sister Hermie!

We are so grateful for Sister Hermie’s care and expertise. She immediately added a medication to treat nerve pain and the improvement was noticeable in the first 24 hours. Grandma has been able to go down to the dining center with her friends on a regular basis, to go on short shopping trips, and to eat better and gain weight.  The pain relief has afforded the opportunity to move forward with physical therapy, which makes her stronger and more functional, although she has also had to accept that she will never be able to do some of the things she used to do prior to the break. She has started to add massage to the treatment mix, which will be especially helpful when the physical therapy treatments end.

While the pain is better controlled, it is not eliminated. There has to be a balance between pain relief and the ability to function. It’s not helpful for her to be pain-free but too drowsy to do anything. Still, she is so much better the last two months than she was in the six months prior that it feels like we have Grandma restored to us.

Thank you, Sister Hermie!

Unfortunately, palliative care is not being fully utilized. Even many of the medical professionals in our community don’t know that it exists, so they don’t request referrals. We had to research it ourselves and then ask the primary care provider for the referral, but it has been worth it. I encourage anyone with a loved one who is dealing with chronic pain, whatever the cause and whatever their age, to look for a palliative care specialist, if their current pain control regimen is not sufficient.

SoCS: growing up in the sticks

I grew up in the sticks.

It’s an expression I don’t hear much anymore. OK – I don’t hear it at all anymore. I’m not sure how widespread its usage was but it means to grow up in an out-of-the-way place. I grew up in a town of 200 people, give or take, in western Massachusetts along the Vermont border. We had a little general store which had the post office in it. We had a paper mill where most of the people in town worked. We had a school that went up through eighth grade. We even had a little bar/restaurant called “The Club.”

Everything else – big grocery stores, clothing stores, the high school, doctors, banks, etc. – was twenty miles away.

So, to me, where I lived was the definition of  “the sticks.”

I was surprised after I moved to Broome County NY – aka Greater Binghamton – that the definition of “the sticks” was different. In New York State, it seems that everything gets compared to New York City. There is The City, its suburbs and Long Island – and everything else becomes “upstate,” mashing together large cities like Buffalo, Rochester, and Syracuse, with smaller cities, towns, villages, and very rural areas, such as the Adirondacks.

So even though I live on the southern border of the state, just a few miles from the state line with Pennsylvania, I am “upstate.” I live in a town that is a hundred times larger in population than my hometown, about the size of the twenty-mile-away city that we used to go to for shopping and services when I was growing up. My current town is a suburb of Binghamton, which is a city with its own opera company, symphony, minor league baseball and hockey teams, and all kinds of other amenities that were much further afield when I was growing up.

Yet, because we are small compared to NYC, we are considered to be “the sticks.”

Go figure.
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Linda’s prompt for Stream of Consciousness Saturday this week is: “stick.”  Come join in the fun! Find out how here: http://lindaghill.com/2015/05/15/the-friday-reminder-and-prompt-for-socs-may-1615/

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adge by Doobster @MindfulDigressions

 

One-Liner Wednesday: education

“Educating the mind without educating the heart is no education at all.”
– Aristotle

This post is part of Linda’s One-Liner Wednesday.  Join us! Link here:  http://lindaghill.com/2015/05/13/one-liner-wednesday-throw-em-a-pool-noodle/

Mother’s Day

Last year on Mother’s Day, I was with my husband B in Honolulu with both daughters E and T and son-in-law L.  You can read about it here and here.

This year, B and I will be having Mother’s Day brunch with both of our moms and my dad in the dining room at the senior community where they all live. I am especially grateful to be able to celebrate Mother’s Day with with my mom and mother-in-law this year because the past year has been rough for both of them health-wise but they are both much improved and able to enjoy the day, which is oddly summery for mid-May.

Meanwhile, E and T are on an adventure together in New York City. They converged there on Friday, E from Honolulu HI and T from Syracuse NY, and are staying with my sister. E is attending Japan Day in Central Park because six members from jpop phenomenon AKB48 will be performing. E’s master thesis is about the fandom, especially the online fans outside of Japan, so this is a great opportunity for her to make connections and conduct interviews for her research. T has just finished her semester in her master’s program and came down to help her sister for the weekend. It is also their only chance to get together this summer because T will be doing an internship assisting with botany studies in New York State parks. (Way to go, T!)

I’m so happy that they will have this special long weekend together. Their bond with each other is one of the true joys of being their mother.  While B and I won’t get to see them together, we will get time to see them separately. T will get a couple of weeks at home before her internship begins and we just made reservations to go to Hawai’i in June to see E while L is in London working on his dissertation research.

The generations of our family illustrate that being a mom is forever!

when things come in threes

Three has been an important number for me.

I was one of three sisters.

Trinity has been one of the themes in my life, from church to a high school friend to the name of my younger daughter.

There are lots of sayings about events – good or bad – happening in threes.

“The third time’s the charm.”

This afternoon, on the third day since the events of the stream of consciousness post I wrote this morning, I read this call for submissions from Silver Birch Press, making it the third instance of dealing with the meaning of names in as many days.

I have to write a poem for this. It was meant to be.

I’ve already been through several drafts in my head and two written ones. I think I will be bringing it to my poetry group this week rather than what I had planned to bring so that I can have it in shape to submit.

Here’s hoping that this poem will be a good-thing-that-comes-in-threes…

SoCS: the meaning of names

On Wednesday, I went to hear my friend Pat Raube and Martha Spong  of RevGalBlogPals read from their new book, There’s a Woman in the Pulpit. It’s one of those rare times when a publisher offered a book deal because of a blog.  It was great to be able to attend the reading and get my book signed.

Pat’s reading included a reference to her daughter’s name – Joan – and for whom she was named. I immediately thought of a welcome ceremony that Pat’s soul-sisters of Sarah’s Circle had held for Joan as an infant, which featured a coat of many colors that Pat had made for Joan.  It also included a personal blessing from each person in attendance, given verbally at the time and recorded in a book which Pat gave to Joan when she turned sixteen.

When we had a bite to eat together after the reading, the Sarah’s Circle members in attendance were reminiscing about that day and telling stories about names and their meanings and how we came to be called what we are called.

Even though Joan is about to graduate from Oberlin later this month – with Michelle Obama as commencement speaker! – I remember that I had written my blessing to her about the origin of our name. Joan (and Joanne) come from a Hebrew root and I have heard them translated as “God is gracious” or “gift of God” or my favorite “God’s gracious gift.” The last is the one I chose to incorporate into my blessing for Joan.

When I was a first year at Smith thirty-six years ago, I studied Latin with Professor Skulsky. One day she went through the class and told us all the origin of our names, although she was disappointed that none of us had names with Latin roots, like Amanda, which means “the woman who ought to be loved.”

Years later, there was a rise in popularity of Amanda as a name for new babies. My younger daughter had a number of same age Amandas in her class. I wonder if they knew the meaning of their name…

[Update: This post now has a postscript.]
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Linda’s prompt for Stream of Consciousness Saturday this week is: “name.”  Please join us! Find out how here:  http://lindaghill.com/2015/05/08/the-friday-reminder-and-prompt-for-socs-may-915/

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adge by Doobster @Mindful Digressions

The Lusitania

Thanks to (the award-winning) Tric of (the award-winning blog) My Thoughts on a Page for commemorating the sinking of the Lusitania and the many Irish townsfolk who went out to rescue the victims.

tric's avatarMy thoughts on a page.

This day 100 years ago, eighteen kilometres from the Irish coast, a German submarine sunk the luxury cruise liner the Lusitania. 1,198 drowned, 761 survived.

In the weeks leading up to her departure from New York, the German embassy in Washington posted a Sinking of the lusitaniawarning to prospective passengers in fifty newspapers. Many passengers were worried but travelled regardless, comforted by the knowledge that wealthy members of society were on board.

On May 1st the ship left New York. Arriving off the coast of Ireland on May 7th, look outs were in position on board, as it was known that submarines were in the area. At 14.10 a torpedo struck. There were forty eight lifeboats on board, only six were successfully launched. Eighteen minutes after being hit the Lusitania sank (it took the Titanic three hours).

The word went out around Queenstown (now known as Cobh) and rescue vessels of all sizes…

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Friday night fun? – part 2

In part one of this post, I wrote about reading at poetry open mic for the first time.  Here is a (somewhat condensed) continuation of the story.

While stopped at a traffic light on the way home, I turned the ringer of my phone back on and was surprised to see that there was a missed call from my husband B, who had stayed at home because he wasn’t feeling well.  He knew where I was and that I wouldn’t have the phone on during the reading, so I immediately became apprehensive and rushed home to find that my mom (Nana) had called for advice as to whether she should have my dad (Paco) take her to the walk-in or the emergency room when she had suddenly exhibited symptoms of a gastrointestinal bleed.

B advised the emergency room.

B had called my cell phone, hoping that I would put my ringer back on before leaving the bookstore so that I could get to the hospital more quickly, but, as it turned out, it was good that I had gone home first. They phoned again during the few minutes I was home to say that Nana was being put into a room in the ER. I grabbed a few magazines that I could leave with my mother for entertainment during the inevitable waiting times and headed out to the hospital.

The ER waiting room was filled to overflowing and there were so many patients back in the unit itself that some were in the hallway. My mom was in a room, though, because they needed to keep her hitched up to cardiac monitors, given that some of her symptoms could have been a second heart attack. Her heart was okay, but she needed to stay in the hospital to figure out where the bleeding was occurring. There were no rooms available in the hospital proper, so, about 2 AM, she was moved to another section of the ER that had beds rather than gurneys.

The next day, the gastroenterologist who was on weekend call, Dr. B., came in and we decided that it was best to do a colonoscopy on Sunday morning and Nana was admitted to the GI unit when space became available. The colonoscopy revealed that Nana had developed arteriovenous malformations (AVM) and was bleeding from several different sites, which Dr. B. cauterized. Dr. B. explained it to us as being similar to varicose veins that break through to the surface and bleed. Unfortunately, the meds that Nana needs to take due to her cardiac stents don’t help matters, as they act to prevent blood from clotting easily.

Although Nana had lost quite a bit of blood, the doctors decided not to transfuse but to let her try to build back her blood count on her own.  This didn’t turn out so well, as Nana had to spend several days in the hospital about a month later when her low iron levels started to affect her blood pressure. They finally gave her a couple of units of blood and, while her iron level isn’t quite up to what is considered normal, she is slowly gaining strength and getting back to some parts of her old routine – with, we hope, more progress to come as spring continues to unfold and we celebrate Mother’s Day and her birthday.

There is no way to tell when the AVMs may recur, so, for now, there are weekly blood tests so that, if she becomes more anemic, the gastroenterologist can intervene before she loses too much blood.

Vigilance is our friend, as is following through on recommended treatment, medication, and lifestyle choices. It’s what has kept Nana and Paco as active as they are as they age.

But fingers crossed that we don’t have any more medical adventures in the coming months.

We all need a rest.

One-Liner Wednesday: Mystery

“The greatest mystery of all is the human heart.”
– P. D. James

Join us for Linda’s One Liner Wednesdays:  http://lindaghill.com/2015/05/06/one-liner-wednesday-keepin-it-simple/

SoCS: Accepting compliments

It seems that it should be the easiest thing in the word to graciously accept compliments. Someone says something nice about you or something you have done and you smile and say thank you.

Somehow though, if you tend to be the self-deprecating, or perfectionistic, or even the humble sort, it can be difficult not to go on with a “but” … it was really a team effort, or I made a mistake in the third movement, or it was just a little something – or it was nothing at all.

Sometimes, we don’t feel worthy of the compliment. It may help to look from the point of view of the complimenter instead of reflexively rejecting the substance of the compliment.

Next time, maybe, it will be just “Thank you.”  With maybe an extension of the gratitude, like, “I’m so glad you liked it.”  “It means so much to me to hear you say that.”

A gracious acceptance of the compliment with no “but”s.
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The prompt for Linda’s Stream of Consciousness Saturday this week is: “compliment/complement.”  Anyone can join in!  Find out how here:  http://lindaghill.com/2015/05/01/the-friday-reminder-and-prompt-for-socs-may-215/

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