One-Liner Wednesday: a compassionate heart

To be compassionate is to have a heart that suffers from the misfortune of others because we think of it as our own.

Thomas Aquinas

Join us for Linda’s One-Liner Wednesdays and/or the last day of Just Jot It January ’24! Find out more here: https://lindaghill.com/2024/01/31/one-liner-wednesday-jusjojan24-the-31st-goals/

another COVID-19 risk

I had saved this article on a research study that showed that SARS-CoV-2, the virus that causes COVID-19, can directly infect coronary arteries, which may help to explain the increased risk of heart attack and stroke among people who have contracted it.

It came to mind now because we received news that a friend’s family member with COVID has suffered a heart attack.

While it’s not known if infection and inflammation of the coronary arteries caused this particular person’s heart attack, it is a stark reminder that COVID can cause serious health complications. Way too many people are still getting sick and dying from it.

While there are no iron-clad ways to avoid infection, preventative measures like vaccines, avoiding crowds, and masking in indoor public spaces reduce your chances of infection and its follow-on risks.

Even if you don’t care about your personal risk of infection, remember that you could pass the infection on to someone who may be more vulnerable than you due to their age or underlying health condition. I know this has been a powerful motivating factor for me.

Please do what is right for you to protect yourself and others to the greatest extent possible.
*****
Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2024/01/08/daily-prompt-jusjojan-the-8th-2024/

Two years without Paco

I work up in the very early morning darkness today thinking about my father, known here and in real life for the last 33-ish years of his life as Paco, the name bestowed on him by my firstborn and his first grandchild E as she was learning to talk.

I suppose this is not surprising because this is the second anniversary of his death. You can read a tribute that I wrote to him a few weeks after his passing here.

What is unfortunate is that in the early morning darkness in which I am now writing this post I am remembering so much of his final years, when I was struggling to get proper support and medical care for him, exacerbated by the pandemic. Even though I was living locally, there were long stretches in which I could not visit in person at all or only for short amounts of time. Phone and video calls were often frustrating, as you can tell from this poem, which was first published in Rat’s Ass Review.

Video Chat with our 95-year-old Father

You said it was scary
today
that we were there

in your bedroom
your three daughters
in pulsating squares

on a screen
You remembered where
home

is for each of us
but not where
it is for you

confused that you
could see us
hear us

but we were not
there
with you

We talked about the snowy
winter, so like our New England
childhoods, when you would

wrangle your orange
snowblower to clear
our way out

We asked if the cut
and bruise on your hand
had finally healed

if you had finished
all the Valentine
goodies we’d sent

Distracted
by a sound
from the living room

you set the tablet
aside
left us

staring at the ceiling

What was most difficult was that, no matter how hard I tried, I couldn’t secure correct diagnoses or treatments for Paco, illustrated by the fact that his death certificate states that he died from end-stage heart failure, but he was only diagnosed with heart failure about ten days before he died. I had been trying for months to tell the staff at his assisted living and then skilled nursing units of his continuing care community that he was having unexplained symptoms and had accompanied him to outside doctors and emergency room visits, when the pandemic protocols allowed me to stay with him, but it was never enough to get to the bottom of his health difficulties.

I thought I had worked my way out of most of the trauma of that but, in the early morning darkness of this anniversary day, apparently there is still some of that pain left. It’s not that I think I could have further prolonged his 96 years – something that would not have served any of us – but that his final months would have been so much easier for him if he could have received timely, proper diagnosis and medications.

One of the comforts of Paco’s death was the thought of his reuniting with my mom, known here as Nana, who died in May, 2019, also of heart failure and, gratefully, before the pandemic struck. I drafted this poem, which was first published by Wilderness House Literary Review, only a couple of weeks after Paco’s death.

We probably should have taken off					

his wedding ring before
he died		    before
his hands cooled	      started
to claw
but we couldn’t		       remove
that symbol
			of Elinor
	of two years
		   three months
			twenty-three days
						left
without		her
after
	sixty-five years
		      one month
			   three days
married to her
			the ring
				of her
even    in    days    of    delirium
	    haze			confusion

his ring		not
	sixty-seven years	  old
		but	   twenty
her gift 	         a remedy
	 for missing		some		thing
		of his
  to cling to 		during his three weeks
			       in the hospital
his chest cracked			 open
     		widow-maker averted
				somehow

She inscribed 		his ring	
      ALL MY LOVE  “ME”
     the way she signed 	cards to him
birthday	anniversary	  Christmas
	St. Patrick’s Day
		valentines
the words against his left
	ring finger		believed
to lead most directly to the heart
	which finally failed
		after ninety-six years
			five months
				nineteen days
as hers had
	after eighty-seven years
		     six days

While I go to the sink
to fetch soap 		to ease
the ring off 	his finger
my sister works
it over	 his reluctant 	knuckle

I carry it 	home 
to my daughter
Elinor’s and Leo’s rings
	   unite
on their granddaughter’s finger

[For those of you who might be new to Top of JC’s Mind, I will note that it is really unusual for me to fold poems into posts like this, but somehow, in the early morning darkness, it seemed appropriate.]

I’ll close this post by explaining the significance of the four-generations photo, taken a few weeks before Paco’s death, that begins this post. It shows Paco, me, eldest grandchild E who named Paco, and great-granddaughters, then 4-year-old ABC and just turned 1-year-old JG. This was the first and only meeting of Paco and JG, who had been born in London, UK, in the early months of the pandemic. ABC lived here in the States with us for her first two years and remembered Paco very well. The restrictions on international travel had kept E and her family from visiting but they were able to get special permission to travel together to come visit Paco one last time.

Paco’s health declined quickly after that visit and I’m so grateful that we all had that brief, sweet time together.

Remembering that final farewell through a few tears in the still-before-dawn darkness of this anniversary morning.

four years

Today is the fourth anniversary of my mother’s death.

As often happens with these dates, sometimes it seems that it couldn’t have been that long and other times it seems longer ago. This warping of time is even more prominent because of the pandemic. I remain grateful that my mother died before we were all faced with the impossible prospect of not being able to visit her in the nursing home where she spent her final months. That would have been a particularly heavy burden for my father, with whom she had celebrated their 65th wedding anniversary a few weeks before she died.

This year feels especially poignant for me as I await the publication of my first chapbook of poetry, Hearts, from Kelsay Books, most likely in June or July. The poems center on my mother with a particular emphasis on her last years dealing with heart failure. She appreciated my writing and I think she would be pleased to know she is the focus of my first book.

She didn’t enjoy having her picture taken, so I will share a photo, taken four years ago in her final days, of one of her favorite flowers, lily-of-the-valley, which was also her birth flower.

Lily of the valley, with Paco’s card to Nana and birthday card made by artist-friend Jim


Love you, Mom. Miss you. Still cry every once in a while…

final edits on a special day

Yesterday, the proof book for my chapbook, Hearts, arrived.

It’s amazing to hold my book for the first time!

My immediate job is to review it and send final edits to Kelsay. The corrections I had sent in the first round had all been addressed, so there was not much to comment on.

I sent the email today, on what would have been my mom’s 91st birthday.

She is the center of Hearts. ❤ ❤ ❤

One-Liner Wednesday: MLK quote

It may be true that the law cannot change the heart but it can restrain the heartless.

Rev. Dr. Martin Luther King, Jr.

Join us for Linda’s Just Jot It January and/or One-Liner Wednesdays! Find out more here: https://lindaghill.com/2022/01/19/one-liner-wednesday-jusjojan-the-19th-2022-voice-to-text/

One-Liner Wednesday: Peace

Before you speak of peace, you must first have it in your heart. 

Francis of Assisi

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2020/07/29/one-liner-wednesday-july-29th-ill-take-that/

Badge by Laura

Nana

I have often written posts about my parents, known here as Nana and Paco. I’m sad to tell you that Nana passed away last week. After months of declining health due to congestive heart failure, she had a few days of rapid decline and died peacefully with my older sister with her and the rest of the family able to gather quickly for some final time together with her.

Over these last few days, my sisters have been staying at Paco’s apartment and taking care of him, while my spouse B and I have been tending to preparations for the funeral, which will take place mid-week.

We are very fortunate that this week is a week off for my son-in-law L, who was able to fly here from London to be with daughter E, granddaughter ABC, and all of us.

I admit that my mind has been richoting from one subject to another. Now that the funeral plans are all in place, I’m hoping I can calm my mind a bit, but it remains to be seen.

With so much happening, I’m not online very much, so I may not be able to keep up with responding to comments. Please know that I appreciate all the thoughts and prayers that you send on behalf of Nana and our family.

In peace,
Joanne

The wilds of October, so far

My Facebook page of Top of JC’s Mind is helpfully reminding me that I haven’t posted in 13 days, and that post was a so-far-unsuccessful plea to get from 99 to 100 likes. My last actual blog post was on October 6, so – deep breath – here is an attempt to catch up a bit.

My mom, known here as Nana, has been under hospice care since summer of 2017 due to congestive heart failure. There have been quite a few ups and downs over that time – and quite a bit of red tape. Re-certification reviews are every two months, so, one finishes and it is time to start on data collection for the next.

As it happened, Nana’s current certification was due to expire on October 15. I was due to be out of town from the third through the ninth and thought that the re-certification decision had been deferred until the tenth; instead, the medical director decided on the fourth that Nana would no longer be covered by hospice as of the sixth. Hospice would continue to “follow” her until another suitable, safe situation could be arranged, but we were not given a date.

The situation was complicated by the fact that Nana had been in residence at Mercy House, which only houses people under the care of our local hospice, since May and could not return to her former home in an apartment with my dad, known here as Paco, at Good Shepherd Village (GSV) because her care needs were too great. Anticipating the possibility that Nana might be decertified, we had her on the waiting list for the skilled nursing unit at GSV for weeks, but they had no availability.

As soon as I returned home, it became obvious that we wouldn’t be able to wait for a room at GSV. On Wednesday, the 10th, my first day back, we were offered a room at GSV’s sister institution in the rehab unit, which we basically had to take.

I will not vex you with the details of the bureaucratic wrangling I needed to do to get the move accomplished by Friday. I will, however, say that I was disappointed that I was caught in the middle of so much red tape when so many people in the official-dom had been assuring me for weeks that transferring between institutions would be smooth and handled by the professionals rather than family.

Mom had her evaluations and was starting in with physical and occupational therapy, when, on the following Tuesday, we got word that space had opened up for her at GSV. So, we packed up her room and, on Wednesday morning, she moved again to what should be her permanent home.

We have her settled in her new room, which has a beautiful view of the valley. There are favorite art pieces, cards, and photos on display and a new sized-for-her recliner lift chair that we bought. She is making progress with her therapy and can walk short distances with a walker and a companion nearby.

I wish I could say that her heart function is improved, but that is not possible. Our goal remains to keep her as active as possible for as long as possible and to keep her pain-free. She is under palliative care protocol, similar to hospice but without the pesky obligation of trying to guess life expectancy.

The best aspect of her new home is that she and Paco are back under the same roof, albeit in separate wings. Paco can hop on his scooter and, using the turtle (3mph) rather than prohibited rabbit (5mph) setting, navigate the apartment building halls, Village Center, elevator, and Health Center halls, and be with Nana in just a few minutes. They have been married 64 and a half years, so the ease of being together is much appreciated.

We are trying to establish some new schedules and routines for Nana and Paco after so many changes in such a short time. If I am lucky, I will be able to work through my backlog and get back to writing and posting a bit more. I know better than to make promises, though. The last few years have taught me over and over to expect the unexpected and I think I may have finally learned that lesson.

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/