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.

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!

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.

May Day – of Ultron?

Today is May first. May Day in the Northern Hemisphere is often celebrated as a spring festival and later came to be a day to celebrate labor.  It’s not a holiday from work in the United States, but my husband B decided to take it off this year because he is working in conjunction with colleagues in India and Germany who do observe May Day as a holiday and because it is his anniversary of beginning work with his current employer. Twenty-six years – but who’s counting?

It is also the opening day for the newest Avengers movie – Age of Ultron.  I asked if he would like to go to the movies this morning, so we went to the 2D showing at 9:45 this morning.  Neither of us are fans of 3D movies, which tend to cause unpleasant side effects, such as nausea.

I am not going to attempt a review. I am neither a comic book person nor an action movie fan, although B gave me enough of a primer to understand the set-up for the movie. I have also seen snatches of various Marvel movies and television shows – I swear Captain America’s origin story movie has been on television a dozen times lately – which I only vaguely pay attention to while I’m working or playing on my Chromebook.

So, yes, the movie has lots of flying, throwing things, and battling. Fortunately, fantasy violence doesn’t disturb me in the way that realistic violence does and the rating was only PG-13, so not too much carnage.

The important thing was that I got to be there with B in the posh reclining love-seats at the theater, holding hands.

Anne Frank: A Global Tribute… Tuesday 14th April, 2015

Anne Frank: A Global Tribute… Tuesday 14th April, 2015.

Thanks to Rowena for posting about this special tribute to Anne Frank on the 70th anniversary of her death.  I would participate if I weren’t so technically challenged on the video-recording front, but hope that some of my friends will consider taking part.

SoCS: crisis du jour

OK – this is another one of those weeks where I am writing on Friday morning and scheduling the post for publication tomorrow. The weekend is going to be busy as there will be open mic poetry tonight – my second time reading, if I make it – you can read about the first here.  Saturday morning we will scoot up to Syrcause to pick up our younger daughter to bring her home in time for my dad’s rescheduled 90th birthday dinner. There will be a post about why it had to be re-scheduled eventually. Have I mentioned yet how I’m sort of behind on posting?

At any rate, my sisters and families will be coming up for the festivities which will be at a local Mediterranean restaurant, so there will be much yumminess and laughter and storytelling and dessert.

Provided things don’t get derailed by the crisis du jour.

It’s become a bit of a standing joke with me that I can’t make a plan because something will intervene. I wrote about the most dramatic of these events here. Long post but the condensed version is that my parents unexpectedly wound up in the hospital for two days at the same time with two totally unrelated problems.

Right now, I am waiting to hear back from my mother-in-law to see if we need to get her to her doc or to get an X-ray to investigate why her back pain has ramped up – after we thought we finally had her pain meds adjusted properly. I admit I’m operating on not a lot of sleep, mostly because I was worried about what is going on.

Right now, I’m trying to breathe and not make something into a crisis before its time. Maybe it’s just a pulled muscle from PT. Not really crisis du jour.

Please?

[Update from Friday night:  My mother-in-law’s doctor decided to just let things ride for the weekend and she improved through the day today. So fingers crossed that we make it through the weekend crisis-free, awaiting a previously scheduled Monday afternoon doctor’s appointment.]
******
Linda’s prompt for Stream of Consciousness Saturday this week is “-jour-“: add a prefix or suffix to complete it or use it as the French word for “day.”

Please join us!  Details on how here:  http://lindaghill.com/2015/04/10/the-friday-reminder-and-prompt-for-socs-april-1115/

socs-badge

Ten years later

2005 was a difficult year. I lost a great and good friend, my long-time church community, and my father-in-law all within a few months.

Today is the first of the major tenth anniversary dates. Ten years ago today, which was Good Friday that year, my friend Angie died from cancer, leaving behind a husband, two sons, a daughter, her mother and siblings, extended family, and many, many, many friends.

I’ve written about Angie before, including here, so I won’t go on too long about her awesomeness. Her legacy includes not only her wonderful family and friends but also a charity fund that gives scholarships, supports cancer patients and their families, and supports The Discovery Center, our local children’s museum, which Angie blessed with her artwork. There is an art gallery, memorial tree, and butterfly house dedicated to her there, as well as an art gallery near the African Road/Vestal Middle School auditorium, which I will always think of as Angie’s Auditorium because it was a long-time dream of hers that she helped fulfill when she served on the Board of Education.

What I am thinking about today, though, is the ten years we have been without her physical presence.  The high school graduation of our daughters, the college commencements, her son’s law school graduation, passing the bar, getting married. All the little moments – hanging out in the kitchen, going out for lunch, taking the dog for a walk, attending seemingly endless committee meetings.

Because I do believe in the eternal life of the soul, I believe that Angie is still able to be present in our lives spiritually.  For those who don’t believe, Angie is still present through her role in shaping the people whom she loved and who loved her, as well as through the art she left for us to enjoy and the legacy projects I’ve already mentioned.

In some ways, we have been without her for ten years. In other ways, she has been with us all along.

SoCS: eyedrops

Last night, I watched my mother put in her prescription eyedrops. In the ER. Before we saw the doctor. After she had been there several hours. Before they decided to admit her.

I usually try to read the Stream of Consciousness Saturday prompt from Linda on Friday. If my Saturday is supposed to be busy, I will write it on Friday and schedule the post to appear on Saturday. Friday afternoon when I read:  Your Friday prompt for Stream of Consciousness Saturday is: “I/eye/aye.”  Use one, use ‘em all – just make it yours. And have fun! I fully expected to be leisurely writing my SoCS post Saturday morning before setting out on other tasks or just puttering about the house. No big plans.

Instead a Friday night call from the ER sent me over to the hospital, where I stayed until after midnight. I spent a good chunk of the day there today and will be back at the hospital tomorrow morning while my mom has a test. If things go well, she should be released tomorrow afternoon.

I hope. We all hope.
*****

This post is part of Linda’s Stream of Consciousness Saturday.  Please join in!  Details here:  http://lindaghill.com/2015/03/20/the-friday-reminder-and-prompt-for-socs-march-2115/  Badge by Doobster@Mindful Digressions

socs-badge

SoCS: field trip

My daugher T was scheduled to go to Dominica for ten days to do field work with her tropical ecology class. They were scheduled to leave Syracuse early Thursday morning to fly to Newark, the first of four legs to get them to the island. Because of the storm hitting the coast, the flight was cancelled Wednesday evening. The professors told them to stay tuned and the travel agents went to work to try to rebook. Unfortunately, the earliest that they could re-book the group was Wednesday, so the trip had to be cancelled. It was a major bummer, given that they spent the first half of the semester learning about the ecology there and prepping for the trip, including things like getting immunized for typhoid fever.

The silver lining for us is that T is now home for spring break. It’s nice for us and for her grandparents, who have been battling various maladies this winter.

And we are sure that T won’t contract typhus…

This post is part of Linda’s Stream of Consciousness Saturdays. This week’s prompt is “go.”  Join us! Visit this link for rules:  http://lindaghill.com/2015/03/06/the-friday-reminder-and-prompt-for-socs-march-715/

socs-badge

 

A Valentine’s funeral

Valentine’s Day morning found B and I in North Adams MA to attend the funeral of my aunt Helen. We were there not only to pay our own respects but also as representatives of the rest of my family, especially my parents who are not up to extended cold-weather car trips any more.

The funeral was small, mostly nieces and nephews with their spouses. I especially wanted to thank Marcia and Carl, who are related through Helen’s husband Stewart, who died several years ago, as they had been the ones who had visited and run errands for Helen and Stewart through over ten years in the nursing home. My mom and Marcia often spoke by phone, so that my parents could keep up with news of Helen, especially after she couldn’t talk to my dad on the phone herself.

Helen’s longtime Baptist minister led the service, with my cousin Cairn giving the eulogy. I read a Bible passage, 1 Corinthians 13, which was a favorite of both Helen’s and mine. Cairn thoughtfully gave me Helen’s personal Bible, given to her almost eighty years ago in Sunday school, her name embossed in gold on the black leather cover, with dried flowers, ribbons, prayer cards, a church bulletin, bookmarks, and copies of her parents’ obituaries tucked among the pages. There were old photos on display in the funeral home and one of her stenographer’s notebooks, showing her skill at the now-lost art of shorthand.

Most of the remembrances of Helen were from her younger days as the eldest of seven children and later as a devoted spouse, watchful aunt, and super-efficient and respected executive secretary, the time period that I remember.  We lived about twenty miles away and would often visit at their home on the weekends. I remember playing with my sisters in their large backyard and attending holiday parties that Helen loved to host. Helen would often compose little poems for special occasions and liked to have people contribute to celebrations. I remember one Christmas party when we were each to bring something for the tree and my older sister made oil of wintergreen in the school chemistry lab as her offering.

Helen’s last decade-plus was very different, as she developed Alzheimer’s. While some things stayed constant until very nearly the end – her love of coffee, her joy in attending and singing at church services, her fondness for dolls and stuffed animals – others were permanently lost. In many ways, the woman that we all knew has been gone much longer than the days since her death earlier this month.

Born in 1922, Helen was the eldest of seven. My father, who turns 90 in a few weeks, was the third child and first son in the family. Of the four children who lived past the age of 70, my father is the only one not to have succumbed to Alzheimer’s, as their father had. My dad’s only surviving sibling is his youngest brother who is currently living in a nursing home in CT. My dad is the only one left who can recall the old family lore. I’ve been asked with such strong family history how my father has been spared; everyone always said that he took after his mother’s side of the family and perhaps that is what saved him from developing Alzheimer’s.

Despite the cold and snowy New England winter, we were able to bring Helen to the cemetery after the service where she is now resting beside her husband. It wasn’t until we arrived there and saw the headstone that I remembered she will also be resting beside her youngest sibling – and Cairn’s mother – Bev, who we lost decades ago to eclampsia. Bev was born on Helen’s 17th birthday and now the oldest and the youngest are finally reunited.