a move for Nana

On May 4th, my mom, known here at TJCM as Nana, moved to Mercy House, a residence for people under the care of our local hospice. She had been under the care of hospice since last summer, staying with Paco in their independent living apartment with the help of family and aides, first for overnight and later during the day as well. As her symptoms from congestive heart failure worsened and she became weaker, the care needed to keep her safe and comfortable was outstripping what home aides are legally allowed to provide, so, when space became available at Mercy House, we chose to make the move.

Of course, there has been an adjustment period with new caregivers and routines and food, but things are settling in now. The staff all share a calling and commitment to this work, as do the many, many volunteers who make Mercy House such a peaceful, loving place.

My younger sister was here for the first week, helping Nana to settle in and staying overnight with Paco at the apartment. As it happened, on the one week mark at Mercy House, granddaughter S finished her semester at college and came to visit. She used her dorm room decorating skills to hang pictures for Nana and my sister, her husband, and S had an early Mother’s Day/Nana’s birthday lunch brought in from a favorite restaurant.

from Nana's room in Mercy House
part of Nana’s wall decorations

This second week, someone from my house has been staying overnight and we are developing a rhythm to our days. Nana and Paco each do their early morning routine in their places of residence and then, mid-morning, we bring Paco to Mercy House for the day. Like hospice, Mercy House’s mission reaches beyond care of the individual to care of the family, so the volunteers and staff help Paco, too. There is always food available in the common room and Nana and Paco eat supper together at the dining room table, which is special after so many months of eating on a tray table in the apartment living room.

At the moment, Nana is the only resident who is able to be that mobile, so Nana and Paco usually have the dining table to themselves, but it also means that we were able to have two dinners this week that my spouse B, daughter T, and I shared, too. On Monday, we brought Swedish meatballs, made with the recipe that Nana used which had come to her from her Swedish landlady 55 years ago, for a belated Mother’s Day dinner. Last night, we brought in Italian food and an apple-blackberry pie that B had baked to celebrate Nana’s 86th birthday. The volunteers had decorated the table with a centerpiece, special napkins, and a birthday hat for Nana!
Nana with birthday hat

Next week, my older sister will arrive for a week. We are all grateful to have so much love and support surrounding us.

Thank you also, dear readers, for the thoughts and prayers that you have been sending and for your patience with my increasingly haphazard postings. I truly appreciate your visits and comments here.

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64th!

Today is my parents’ (Nana and Paco here at TJCM) sixty-fourth wedding anniversary.

And it is snowing, which is a bit odd for us here in the Northeast US on April 19th.

My parents married on this date for two reasons. It was Easter Monday during a time when Catholic weddings were prohibited during Lent. (While not currently prohibited, they are still discouraged.) It was also Patriots’ Day in Massachusetts where they lived, so it was a day off work for my dad and many other workers. They thought that they would always have their anniversary off work, which they did until the Monday holiday bill was created, moving holidays from their actual dates to a nearby Monday. (Patriots’ Day commemorates the battle of Lexington and Concord which began the Revolutionary War.)

Today’s celebration will be quiet.

[Three days pass.]

I started this post on the 19th. The plan was for me to spend most of the day at home until late afternoon when we would pick up dinner to bring to Nana and Paco. I was hoping to get this post out and do some other catching up and errands, but Paco wasn’t feeling well, so I went up to Nana and Paco’s apartment mid-morning to assess the situation and call the doctor’s office.

Later in the morning, Nana’s hospice volunteer visitor arrived. She brought a pink gerbera daisy with two blossoms as an anniversary gift from her and a gift bag from hospice with a bottle of sparkling apple juice, two glasses, a rose made of cloth, and an angel figurine. It was so sweet of her to visit and lift Nana’s spirits; we were sorry that Paco was napping and not well enough to be with her when she opened their gifts.

When I hadn’t heard back from the doctor by early afternoon, I called again and they decided to fit him into the afternoon schedule. I took him to the office, fortunately nearby to their senior living community, leaving Nana under the care of her aide.  The doctor made some medication changes and Nana and Paco both got afternoon naps.

My husband B and daughter T arrived at about five with food from a favorite local Italian restaurant. We set up their tray tables side by side on the couch with lasagna for Paco and bucatini for Nana. Nana and Paco got to enjoy their 64th anniversary dinner, topped off with sharing carrot cake for dessert.

They got to hold hands.

They reminisced about their honeymoon in New York City, seeing Bob Hope and the Rockettes at an 8 AM show.

And we had the privilege of being there.

I am grateful that they had this anniversary together, one more precious moment in their long life together. The precariousness of the day underscored that the much-discussed “quality time” is a gift that appears in our lives, sometimes planned and created, but more often appearing at an unexpected time or in an unforeseen way.  A cuddle from a toddler who is usually  too busy to stop her activity. An important discussion with a teenager during a routine car ride. A walk in the woods when troubles temporarily recede and clarity and peace return.

A time when holding hands means the world.

whirl within a whirl

The last few weeks have been hectic. My mom, known here as Nana, has been dealing with an increase in fatigue, weakness, and edema as the congestive heart failure progresses. The hospice team continues to be helpful with trying to re-balance some medications but there is always some amount of compromise among symptoms with relieving all of them an impossibility. A couple of months ago, we had to expand private aide coverage from overnight to daytime as well. There have been a number of issues with scheduling, though, plus a few unexpected events that have kept me in a bit of a whirlwind, not being able to tell how any day may develop.

This unsettled feeling is exacerbated by the constant maelstrom of the news. I have been very concerned about Russian interference in the United States and other nations, something that I posted about during the 2016 campaign and have followed since. The indictments that have been handed down so far as a result of the Mueller investigation are disturbing and more may be coming soon. It appears that the obstruction of justice report may be finished in the coming weeks. Having been brought up during the Watergate hearings, just hearing about the possibility of another president under suspicion of obstruction is chilling.

Then, there is Syria. And the rest of the Middle East. And North Korea. And a trade war with China.

Immigration issues. A Congress that is dysfunctional. Gun violence. Racism. Sex/gender discrimination, harassment, and abuse.  Bullying and incivility.

I could go on…

And on….

Everything feels impossibly complicated and tenuous and unbalanced. I don’t know if things were more stable in the broader world if I would feel a bit better equipped to cope with personal family issues, but I do know that it isn’t helping my mindset in the least.

 

catching up – again

First, I would like to offer Passover and Easter blessings to those celebrating and sincere wishes for peace, love, and joy to all!

While regular readers might have thought I would have more time to post with daughter E and granddaughter ABC in the UK for an extended visit, and while I myself had hoped this might be possible, it hasn’t worked out that way, at least so far.

And, while I do try to write about the most salient things that are at the top of my mind, I am finding myself too overwhelmed to find words to express how I feel. Maybe, eventually, I’ll be able to. Perhaps in poetry. Perhaps years from now. Perhaps not.

In practical/physical terms, a large share of the last week has revolved around dealing with some changes in Nana’s condition. The edema from the congestive heart failure had accelerated but increasing the diuretics to address it lowered her already low blood pressure even more. We are trying to walk a very fine line to balance the two and, with her usual hospice nurse and aide unavailable for a few days, I have been trying to keep a closer eye on things and inform all the different private aides about the changes and new things we have to watch out for.

Amidst all this, it was wonderful to be able to celebrate Easter together. Daughter T and I attended Easter Vigil at church last night, which was a comforting blend of the familiar and the unique, with the once-a-year rituals of blessing the Paschal candle and welcoming new adult members to the church.

I had my pyx with me to carry the Eucharist to give to Nana today. T, Nana, and I prayed together before T gave communion to her grandmother.

We brought Easter dinner to share with Nana and Paco and Mary who is the Sunday daytime aide. My husband B made Swedish meatballs from a recipe that came to us through the Swedish landlady of my family when I was a toddler. For dessert, he made cherry pistachio biscotti and shortbreads, the latter from a recipe from his family. Not exactly traditional Easter foods, but delicious and special for us this year.

I wish there were a fast and easy way to get thoughts from my head into a post to send out to you all, but I’m afraid instead you will have to continue to put up with haphazard posts with various gaps that I may not even recognize in time to fill them. I hope to back up and write about a few things, like my second whirlwind trip to Northampton last month, as time and brainpower allow, but I know better than to make promises these days.

continued response to Parkland

Since my first post touching on the mass shooting at a high school in Parkland, Florida, I have continued to be impressed by the response of the students at the school and other teens. They have been speaking out strongly in traditional and social media, at rallies and public gatherings, calling on local, state, and national authorities and elected officials to protect them and the rest of the public by banning assault weapons and high-capacity magazines, strengthening background checks and licensing, and improving mental health services.

They are making plans for a march in Washington, DC and other cities on March 24. There are also plans for a nationwide student walkout on April 20th, the 19th anniversary of the Columbine massacre, the first mass shooting at a high school that sent shockwaves across the country.

There are some early indications that their message is having an impact on politicians. While long-time gun-control advocates are adding their voices to those of the students, some additional people are speaking out. Just this morning, I saw an interview with a wealthy long-time donor to Republican candidates, stating that he will no longer give to politicians who oppose common-sense gun control measures, such as an assault weapon ban. During a previous time when the United States did have an assault weapons ban, the rate of mass shootings was significantly lower.

The United States also has the examples of many other nations who protect their citizens from gun violence with stricter gun regulations. These countries also have better health care access, which means that fewer people in their communities have the sorts of untreated mental health problems that lead them to harm themselves and others. (I realize that most mental health diagnoses do not involve violence, but society is also served when each member has access to the full range of health and preventive services.)

Yesterday at church, we had a minute of silent prayer for the victims of the Parkland shooting. While my mind went first to those who were killed or wounded, it also went to the teen-aged gunman. Our society failed him as well. Despite numerous encounters with school authorities, police, and social services, he was left to fend for himself after the death of his adoptive mother without access to continuing mental health services. Proper treatment and enhanced background checks might have prevented him from killing and wounding so many people.

Mass shootings should not be the price the United States has to pay because of the Second Amendment. Contrary to the interpretation that some now hold, the intent of the Second Amendment was to protect the public from attack. There was no standing army at that time, so the “well-regulated militia” of which the amendment speaks was the defense against foreign invasion. Guns in more rural areas would also have been needed for hunting and for protection from bears, cougars, etc., but the right to bear arms was not intended as a blanket right for any kind of weaponry to be owned by anyone anytime. The United States already does restrict many kinds of military weapons from civilian ownership; it would not be unconstitutional to add more types of guns and ammunition to this list.

After other mass shootings, particularly Sandy Hook, it seemed that the country might have reached a tipping point where public opinion was strong enough to overcome the National Rifle Association and other anti-gun control groups.  Sadly, while there were some changes in some states, such as New York, the overall policies in the country either remained the same or became even more lax regarding gun access.

Will Parkland, with the strong voices of the teens ringing out, finally lead to societal change, the passage of gun control legislation, and better mental health care?

There is hope.

 

Handel, the ACA, and Parkland

On Saturday, my daughters E and T and I, with Baby ABC in tow, attended a choral sing of Handel’s Messiah Part I plus Hallelujah Chorus. The Madrigal Choir of Binghamton and their director Bruce Borton, choral director/professor emeritus at Binghamton University, organized the sing, with Bruce directing and Madrigal Choir members serving as soloists and section leaders. Volunteers from the Binghamton Community Orchestra provided a twenty-piece orchestra to accompany us. It was so much fun!

I had a number of friends among the choral attendees from my long-time affiliation with University Chorus. It was nice before we began to introduce ABC to friends. Her smile and wide eyes added to the already high spirits in the room. I also love every opportunity to sing with my daughters. We are all sopranos, so we get to sit together and sing.

The event featured a free-will offering for the American Civic Association, which, since 1939, has served the Binghamton area with immigration services, refugee resettlement, citizenship classes, and cultural and ethnic preservation and education.  In these days when some in the United States, including the President, are not supportive of immigration, the ACA and their work in our community are more important than ever.

Anything involving the ACA has a special poignancy because, in 2009, a mentally ill gunman opened fire there, killing fourteen and wounding four. Most of those killed were immigrants or foreign nationals affiliated with Binghamton University. There is a beautiful memorial featuring sculptures of doves in flight a short distance from the ACA building, which reopened a few months after the shooting.

When news broke of the Parkland, Florida school shooting on Valentine’s Day, I had the familiar thought of “not again” coupled with the thought that this atrocity too would probably result in “thoughts and prayers” from those in power, but no action to curb gun violence.

In 2013, in the wake of the Sandy Hook shooting, New York State passed the SAFE Act, which has a number of provisions on assault weapons, high-capacity magazines and ammunition, background checks, and mental health. It doesn’t mean that there will never be another mass shooting in New York, but violent crime rates have fallen. New York is also proactive in making mental health treatment more available, which is important not only in preventing the small number of people with mental illness who are also violent from using firearms but also in keeping the much larger number of people who become suicidal from shooting themselves.

It seem unlikely that Florida Governor Rick Scott and the Florida legislature will enact similar policies despite the Parkland school shooting and the Orlando Pulse Nightclub massacre. It would also be possible for the United States Congress to finally listen to the vast majority of the general public and of gunowners who favor stronger background checks and other gun control measures.

Unfortunately, such action is also unlikely on the federal level, despite the horrific history of mass shootings and other gun violence and the eloquent and poignant voices of the survivors in Parkland. Sadly, this Congress and President have been moving gun policy and mental health care in the opposite direction. The first legislation DT signed as president was to rescind a rule making it more difficult for some people with mental illness to pass background checks for gun purchases. A current bill in Congress would make concealed carry permits granted by one state valid in all other states. The Trump budget calls for cuts in mental health care funding. These and comments from Congressional leadership indicate that the platitudes will continue without any meaningful action to prevent further bloodshed.

In the 2018 Congressional election, the candidates’ stance on gun control and on mental health care will definitely be important in my decision-making. Millions of others will join me and maybe we will finally get some national legislation to help reduce the plague of gun violence in the United States.

SoCS: back to normal

So, it has been a few days since I posted…

In other words, back to normal…

I had diligently posted every day for Just Jot It January and briefly considered continuing to post every day, but life intervened.

In other words, back to normal…

Or not. The word normal and my life do not belong in the same sentence.

Last week included a daughter coming down with a stomach bug, another daughter recovering from surgery to remove what we thought was a swollen lymph node but turned out to be a cyst, my spouse’s second cataract surgery, and an almost eight-month-old granddaughter that needed tending.

Sadly, last week also included the realization that we needed to upgrade the level of care for my mom, known here on Top of JC’s Mind as Nana. She has been under the care of hospice for seven months and is still in her apartment with my dad. She has had overnight aides, but we are now transitioning to daytime aides in addition. We have made some medication changes in hopes that she will have a bit of symptom relief from the increasing congestive heart failure. CHF is not a very predictable condition. There have been a number of dips with partial improvement following over the months, but you can never tell in the midst of a dip when or if improvement will come.

I know that people who read my blog frequently have been sending positive thoughts to Nana.  Thank you so much for your support.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “in other words.”  Join us! Find out how here:
https://lindaghill.com/2018/02/02/the-friday-reminder-and-prompt-for-socs-feb-3-18/