Blog – Top of JC’s Mind

SoCS: an unexpected call

[Warning for family: This post is about Nana’s hospice care. You may prefer not to read it.]

I got an unexpected call this week from my mom’s (Nana here at TJCM) hospice social worker. She wanted to set up a family meeting with her and the hospice nurse. It was a bit unusual to have a formal meeting time set up, but we agreed to meet in my mom’s room at Mercy House, the hospice residence where she moved in May. We were fortunate that my older sister was here visiting, so she was able to join in, too.

What I hadn’t suspected was that the meeting was about re-certification issues. In most hospices, acceptance means that life expectancy is six months or less. With some diagnoses, that determination is relatively clear, but, with heart failure, as my mom shows, it isn’t so clear.

Nana was re-certified at three months, at six months, and then every two months since. We are now at fourteen months. There have been lots of ups and downs, but, sadly but not unexpectedly, the overall direction has been one of decline with continuing weakness and fatigue that has worsened significantly over the course of this year.

Therefore, we were shocked that the social worker told us that the medical director was considering de-certifying Nana. I guess I shouldn’t have been shocked, as there had been a couple of other times that the medical director has questioned re-certification, but it seemed so clear that symptoms were worsening that I never thought there was a possibility that he would think Nana didn’t meet the criteria to remain in hospice care.

As I understand it, there are two basic issues. One is that the medical director only has access to data points collected during visits from the hospice personnel, perhaps two or three hours a week and always during the day. Second, the criteria to stay under hospice care have to do with rate of decline, so, even though Nana would easily qualify to enter hospice care in her current condition, it doesn’t necessarily follow that she would be re-certified to remain under hospice.

So, on hearing the news from the social worker, I freaked out a bit. Well, not outwardly. But losing hospice care at this point would be very complicated. In order to be in residence at Mercy House, one has to be under hospice care, so de-certification would have meant having to move Nana, which would be complicated and exhausting. We had a preliminary plan in place, but we hoped not to have to implement it.

What we could do was give the social worker more information of what we were seeing when we were there visiting, which covers about nine hours most days. Nana was also able to give us some more information about night-time issues.

The social worker took the additional information we were able to provide and the medical director was able to see how it fulfilled the criteria for Nana to be re-certified. We were very relieved. From now on, though, I will be more deliberate about noting changes in case we need to fill in the blanks again.

Through it all, we are grateful for the care hospice has been able to provide. If it were not for their expertise in managing symptoms, it is likely that we would already have lost Nana. As it is, we continue to have the hope of more time with her.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “call.” Join us! Find out how here:  https://lindaghill.com/2018/08/03/the-friday-reminder-and-prompt-for-socs-august-4-18/

 

 

 

SoCS: three Ts

At my blog, I refer to my younger (now adult) daughter as T. Usually in person, I call her by her name, although, with granddaughter ABC in the house, we sometimes call her Auntie T. One of her high school teachers nicknamed her TNT because she was usually quiet until she gave forth a brilliant and insightful flash.

One of the things that T loves is tea. Not just any old tea, though. Along with sister E, she is somewhat of a tea connoisseur. At any particular point, we will have at least a dozen varieties of tea in the house, most with fanciful names and specialized blends. We have various tea pots and strainers and other accouterments. We also have a very large assortment of tea cups, mostly inherited from Grandma. It always feels special when we use them.

Another thing that T has always loved is tee shirts. She has many special tees that she has accumulated over the years. Many of them have science or environmental themes, which is fitting for T who has two degrees in environmental science. There are also some science fiction and fantasy tees, and, of course, some Harry Potter tees.

And some tees involve clever wordplay. One of her all time favorites involves the word ” hippopotomonstrosesquippediliophobia” which means fear of long words, a malady which certainly does not inflict T!
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “T, tea, tee.”  Join us! Find out how here:  https://lindaghill.com/2018/07/27/the-friday-reminder-and-prompt-for-socs-july-28-18/

 

father, farmer, and builder

This week, my daughters and I sang in the choir for the funeral of our friend Nancy’s dad. Nancy is a long-time church musician and liturgist, so many current and former choir members and friends arrived to support her by participating in the liturgy. We had 43 singers and 3 instrumentalists. The music was a beautiful and meaningful part of our prayers for Joe and being surrounded by so many musician-friends helped Nancy to play the funeral mass.

I know from personal experience how difficult it is to play for a loved one’s funeral or memorial. Because you have to concentrate on doing your job musically, some of the mourning that one would typically do at a funeral is deferred. My hope is that the memory of the music we shared will be a comfort to Nancy when she reflects on the funeral in the coming days.

The reflections offered centered around Joe’s roles in the community as a father of five children, a farmer in his younger years, and then a long-time builder of homes in our area. Each of these roles has many scriptural and faith references which were woven throughout the liturgy.

It was my privilege to write the universal prayer for the funeral. I served on the liturgy committee with Nancy for many years in our former parish and learned so much from her; I was honored that she asked me to write the petitionary prayer that closes the liturgy of the word.

Nancy and I have been supporting each other through an extended period of multi-generational family caretaking. Strangely, some of our most stressful periods have coincided. Fifteen years ago, I was staying at the hospital with one of my daughters when Joe had a serious stroke following heart surgery. I missed Nancy’s mom’s funeral when my mom had a heart attack while my dad was in the hospital for surgery. Now, Joe’s final illness and death happened while my mom is in a hospice residence.

I am truly thankful for Nancy’s support, friendship, and gracious example. I pray for solace and peace for Nancy and her family. Rest in peace, Joe.

flowers from Joe's funeral luncheon
Joe’s favorite color was blue, so there were blue hydrangeas and white roses on the tables at the funeral luncheon.

 

 

SoCS: organ

While I have been delinquent/busy/overwhelmed and a few other adjectives lately, I have mostly been skipping out on Stream of Consciousness Saturday, which I once did diligently, but when I saw that this week’s prompt was “organ,” I knew I had to write.

In my younger years, I played the organ. After several years of childhood piano lessons, the priest in our tiny Catholic church asked me if I would learn to play the organ so that I could take over when our current high-school-aged organist went away to college in three years.

So, I learned.

I was lucky that my first organ teacher was very good, so I developed good technique. It was also good that he played in a larger church in North Adams which had a pipe organ, so I got to learn on a decent instrument, even though I was practicing on a not-great electronic at my own church.

I played at my church, first substituting and then becoming our organist my sophomore year in high school. I earned $5 for playing two masses every weekend and $3 when I played for weeknight masses a couple of times a week. I played a few weddings and funerals, too. I admit that playing funerals as a teen was really hard.

My original organ teacher had moved away and I was back to studying piano as I was looking for a college to attend, but my teacher used her connections to get a list of nearby colleges that had good organ/music programs. Smith was on the list and I fell in love with it on a campus visit, applied early decision, and was accepted. I wound up being the only organist in my year and played often at Catholic mass and played preludes and postludes for ecumenical services and at some college events. I used to joke that I had the biggest practice rooms on campus, as I played the three-manual Aeolian-Skinner organ at the chapel and the four-manual Austin in the 2,000-seat John M. Greene Hall.

After college, I spent a couple of years in an assistantship at an Episcopal church and after my daughters were old enough, I went back to playing, mostly on a volunteer basis.

Unfortunately, there was a problem. Even as a teen, I had pain in my right arm. It would come and go, but I sometimes had longer bouts of pain, especially if I played the piano a lot. (I will spare you the discussion of how piano and organ technique differ.) As time went on, I had more and more problems which led to doctor visits, physical therapy, various diagnoses including what is usually called “golfer’s elbow” and eventual surgery. We had hoped that would finally solve the problem, but I developed calcifications which have made the problems permanent.

I have shifted some things that I would ordinarily do right-handed to my left hand to help protect my right hand from over-use and pain. Obviously, this strategy does not work with playing the organ which takes both hand and both feet. If I had been one of those people who was a fantastic sight-reader and improviser, I might have been able to continue playing because I wouldn’t need very much practice time; alas, I am someone who needs lots of practice to play well.

For a few years, I was able to continue some accompanying with the youth choirs at our church, swapping over to conducting as needed to protect my arm. When that parish fractured and we had to leave, I no longer had a reason to continue playing or access to an organ and I stopped playing totally.

Sometimes, it’s still hard. Sometimes, it seems like another lifetime. Most times, I don’t think about it – and then, something happens to remind me, like hearing organ played on public radio or getting ready for Christmas or a prompt from Linda, and I miss it…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “organ.” Join us! Find out how here:  https://lindaghill.com/2018/07/20/the-friday-reminder-and-prompt-for-socs-july-21-18/

 

 

indictment of Russian military officers

I am appalled at DT siding with Putin against the very real evidence of crimes against the American people around the 2016 election by members of the Russian military.

The indictment is detailed and, of course, the grand jury, ordinary United States citizens doing their civic duty, saw the evidence behind the counts listed.

Russia will not extradite the officers to stand trial, so the trial will need to be held in absentia.

All members of Congress should speak up and support the Justice Department and courts as this process moves forward. They should also pass legislation to secure the 2018 and future elections.

They must also denounce the president for taking the side of Putin and Russia against the United States. I can barely believe the depths to which DT has sunk, as he denigrates our long-time allies while praising authoritarian leaders.

The Congressional oath of office begins, “I do solemnly swear that I will support and defend the Constitution of the United States against all enemies, foreign and domestic…” I call on all members of Congress to fulfill their oath and protect our democracy.

SoCS: Yay for Moms!

Yay for the return of Serena Williams to the Wimbledon finals and congratulations to Angelique Sperber who won the championship!

It was nice to see Serena back in a final after the birth of her daughter and the serious health complication that followed.

There have been ads talking about Mom power featuring Serena during the tournament. I definitely believe in the power of moms! Yay!
*****
Linda’s prompt for Stream of Consciousness Saturday this week is to begin with a three letter word. Join us! Find out how here:   https://lindaghill.com/2018/07/13/the-friday-reminder-and-prompt-for-socs-july-14-18/

 

 

parents and children

Daughter E and granddaughter ABC have been back with us for a month. ABC is currently snoozing in her grandpa’s arms. While we are sad that her daddy is so far away right now, we know it is necessary so that E can get a spousal visa to join him next year when the three of them will be together full-time at last.

ABC just reached thirteen months of age and is going through one of those time periods when she is especially attached to her mommy and very suspicious of strangers. Observing that and knowing how important it is for her to be surrounded by love and stability makes the ongoing crisis of the current US border policy all the more appalling. It is unconscionable that the current administration has taken children away from their parents or guardians and then lost track of them.

While the courts have ordered that families be reunited soon, the government has asked for more time. Meanwhile, the damage to these children’s health continues, as well as the heartbreak of their parents and of millions of Americans who cannot belief that such cruelty has been done in our name.

Many people have come forward to assist the children and their family members, giving money, legal services, transportation, housing, and other assistance to reunite the children with their loved ones as quickly as possible. Unfortunately, we cannot undo the trauma these families have experienced.

strawberry pies

In my region, it is strawberry season. While strawberries from far away are available in supermarkets year-round, we almost never buy them, preferring to wait for the short but sweet local strawberry season.

When the wild strawberries in our lawn begin to ripen, it is time to head to the farmstands for quarts of flavorful, ripe berries. (It used to be time to head to the pick-your-own farms in the area but lack of time and an aging body have put an end to spending some early morning hours picking berries and avoiding slugs.)

In the early part of the season, I always make a fresh strawberry pie, using a recipe that my mom, known as Nana here at TJCM, made. It originated in a leaflet from the farm that we used to visit with her during childhood to pick strawberries. My copy was written out in Nana’s elegant cursive on a recipe card among those that she gifted to me when B and I married. We shared this year’s fresh strawberry pie topped with whipped cream with her and the family over at Mercy House, the hospice residence where Nana is now living.

As the season progresses and the berries need to be used more quickly, I move on to recipes that involve cooked berries. Last week, I made one of my favorites, strawberry rhubarb pie. I tried something different this time, using pastry cut-outs instead of a full top crust, hoping that the filling in the extra-deep pie plate would cook through without soaking the crust.
36427111_10212160706838382_6712770018037202944_n It worked! Again, the family gathered at Mercy House to enjoy pie with Nana and Paco.

Strawberry season is always a blessing, but this year even more so. Making more sweet memories is a precious gift.

birthday sandwich

I did a One-Liner Wednesday post (with adorable picture) for ABC’s first birthday.

The next day, ABC and her mom, our daughter E, left London, where they had spent eleven weeks visiting dad/spouse L, his parents, sister, and extended family, to return to our home in upstate New York.

The following day was daughter T’s birthday which we celebrated at one of our favorite local restaurants. ABC charmed the staff and other patrons as we celebrated both birthdays.

ABC managed not to have a problem with the five hours’ worth of jet lag, although the trip was much more taxing on E.

We are settling back into being a household of five. T and B had taken charge of childproofing prior to ABC’s arrival and we have managed to avoid any major catastrophes so far.

One of the things that happened while E and ABC were in the UK was the move of my mom, known here as Nana, to Mercy House, a nearby hospice residence. Everyone loves ABC’s visits as she toddles down the hallways and around the common area and in and out of Nana’s room. She brings smiles to everyone and has made some new friends.

One of her new friends is a resident. He is only twelve years old. His presence here reminds all of us to treasure each day that we are given, that youth is not a guarantee of good health, and that the presence of family and friends and care of staff and volunteers can bring peace even in the most difficult circumstances.

 

apologies

Apologies to the people of Canada, especially Prime Minister Justin Trudeau.  I am very sorry about the way President Trump and some members of his administration have treated you and spoken disrespectfully about you.

I have always lived in the Northeast United States and think of Canada as a close neighbor who shares our values. I have Canadian friends. My spouse B has a French-Canadian surname and relatives in Canada.

It makes no sense for the Trump administration to violate current, ratified trade treaties with additional tariffs and I am disappointed that Congress has not stepped in to stop it. Many Americans have been speaking out and preparing for the Congressional election in hopes of electing representatives who will uphold our values and laws on both the national and international level.

While I am apologizing, I would also like to express regret about how the President is treating our allies in the G7, the European Union, and NATO. I also am appalled with how DT insults developing countries in both hemispheres. And how his announced withdrawal from the Paris climate agreement in November, 2020 has negatively impacted the world community. Many cities, states, companies, and individuals are continuing to work to keep our climate commitments despite the current administration.

I know I am just one voice and alone have little impact, but there are many others speaking out and together we will eventually reassert our best American values.