Tag: hospice

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.

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.

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/

 

 

three firsts

When I went to church this morning, Sister Alma, who is pastoral minister, asked about my mom who is under home hospice care. Sister Alma usually goes to visit, but she has had a bad cold so has been unable to make her usual rounds. She asked if I brought communion to my mom on Sundays, which I had never thought to do. She went to the office to get a pyx for me; that is the small container that is used to carry the Eucharist to someone who is unable to attend mass. I brought the pyx with me when I went up to receive communion, the Eucharistic minister placing a host in the pyx before I received myself. When we went up to my parents’ for Sunday dinner, my mother and I said a couple of prayers together and I gave her communion. It was a privilege to be able to do this and I will be able to do it every week. Sister Alma will still visit when she is able to, but my mom will at least get communion once a week even when she can’t.

The other two firsts belong to the now seven-month-old ABC. After weeks and weeks of swollen gums and chewing on everything she gets her hands on, the corner of ABC’s first tooth broke through today. She also managed some self-propulsion today, not exactly crawling, but sort of scooching on her belly, enough that she moved off her play quilt and across the braided rug to the chair before I scooped her up. As is typical, she was moving backward rather than forward, but still progress!
*****
Join us for Linda’s Just Jot It January! Find out how here:
https://lindaghill.com/2018/01/14/jusjojan-daily-prompt-january-14th-2018/

 

Does anybody really know what time it is?

No, seriously. Does anybody really know what time it is?

Earlier this week, daughter E and now five-month-old ABC returned from visiting spouse/daddy L and his family and friends in London. They were there for three weeks and had lots of good times and adventures and firsts, but crossing five time zones and having daylight savings time shift was a bit steep for a child who had barely been learning that night is supposed to be mostly for sleeping. The flight back was particularly disorienting, as it involved getting up at 4 AM London time and arriving here at 5 PM Eastern Standard Time, which feels like 9 PM in London. ABC decided to only take two one-hour naps in all that time, so both she and E were exhausted. That evening, they did both sleep for a six hour stretch, which was helpful, but one of our goals in the coming weeks will be see if we can get ABC to consistently sleep a long stretch at night and take a couple of daytime naps so there will be some semblance of schedule. There should be no more time zone travel for a while, so here’s hoping.

As we were preparing to change our clocks back to standard time last weekend, which, confusingly, happens in the US on a different weekend than in most of the rest of the Northern hemisphere, there were numerous media stories about proposals for the state of Massachusetts to switch to the Atlantic time zone, which would essentially be like being on Eastern Daylight Savings Time year-round, helpful for them as they are on eastern edge of the zone now, so have early sunsets. However, because they are a small state with five bordering states, they will have to convince the other northeastern states to change time zones along with them, joining the parts of Quebec that are on Atlantic Standard Time year-round. I am not a fan of daylight savings time shifts, so I would favor the change to Atlantic time, even though, being father west, it would extend the time that we have to wake up in the dark.

This week, I also mowed the front lawn and there were a couple of dandelions blossoming. Neither of these things are normal for November in our geography. It’s possible that it is a local sign of being in the Anthropocene, the proposed name for the current epoch of geologic time in which humans have significantly impacted our geologic/atmospheric systems. It does seem, though, that our colder fall temperatures have finally arrived. There had been a heavy frost, so I didn’t mow until late afternoon; still, there was a bit of frost close to the house where the sun hadn’t reached. Maybe now the grass will go dormant and we won’t have to mow again until spring.

This week also saw Election Day. Here in New York, we had only local races and some state-wide referenda, but we are observing an important milestone, the 100th anniversary of women’s suffrage in the state, three years before the national amendment was adopted. To celebrate, we had special commemorative “I voted” stickers. A few states had more extensive state votes. The Democrats fared better than expected with exit polls suggesting that some of the voters were motivated by displeasure with how the Republicans are handling government on the federal level. Next year’s midterm elections will be very interesting.

I submitted my poems for the Binghamton Poetry Project’s fall anthology this week. Our reading will be on November 18th and the anthology will be available to us. I will post the poems here that weekend. All three were written from prompts during our sessions and all three deal with issues from the past, including one about my friend Angie. You can read a prior poem about Angie here.

All of these events have had me pondering time and the meaning of time, but none as poignantly as having my mom, known here as Nana, under hospice care. While I know intellectually that the future is not promised to any of us, dealing with end-of-life care issues makes the finite nature of our lives more concrete. It helps me to appreciate more the little joys that we can still share – bringing her a fresh batch of lemon pizzelles –  enjoying hot soup at lunchtime or Sunday dinners together – visits with my sisters, my daughters, and especially ABC, her first great-grandchild.

Watching Nana and ABC together sharpens my sense that there really is, as the adage says, no time like the present.

 

catching up

I haven’t meant to keep you in the dark about life here. I just haven’t been able to wrap my head around posting much lately.

We have made a lot of progress with care for Nana. We now have her nurse/case manager from hospice on board and have been able to pass off prescription management to her. The number of medications needed has dropped because a number of them are no longer needed. For example, she doesn’t take a statin anymore because her cholesterol level is irrelevant at this point. It makes it easier to keep track of her meds, especially because hospice has taken over the ordering of refills.

Hospice is also handling medical equipment, such as oxygen and a wheelchair. They are good at solving problems, like providing cushions to protect her ears from the oxygen tubing. Simple things like that make a big difference.

It is nice to have just one number to call. If there are any questions, we just call hospice and they contact whichever doctor or service is needed. There is always someone on duty, even in the middle of the night, to address concerns or problems.

Meanwhile, ABC is already five weeks old! She had a checkup and is now almost two pounds (0.9 kg) heavier and 2 1/2 inches (6 cm) longer than when she was born. She has outgrown her preemie clothes and can wear regular newborn sizes. She is starting to focus on her surroundings. She is playing with some of her toys and is getting more tolerant of diaper changes, baths, and getting in and out of her carseat/carrier.

She is fascinated by her reflection in the mirror.

It is a blessing to have her here with E and L, watching them become a little family and assisting with baby care and general household tasks. Most advanced economies give parents paid time off for this life stage, although, sadly, the United States does not. We are grateful that E and L are able to have this important time to bond, especially because L will have to return to the UK in mid-August. We will miss watching his tender care of her, especially when he sits at the piano with her, cradling her in one arm and singing to her, accompanying himself with his free hand.

We are also blessed to be able to bring ABC to visit Nana and Paco. Unlike the earliest weeks, ABC now stays awake for part of the visit, so Nana and Paco get to see her deep blue eyes.

Tomorrow, L’s mom arrives from the UK and our younger daughter T arrives from Missouri. We are gathering for ABC’s baptism on Sunday.

ABC will wear a tiny white dress, first worn by my older sister, followed by me and our younger sister, twenty-some years later by my daughters, and twenty-some more years later by my granddaughter.

I retrieved it from the bottom of Nana’s cedar chest last week and we will return it there next week, in case another precious baby girl arrives in our family to wear it.

 

health update

I wanted to give you an update on Nana and Baby ABC.

On Friday, Nana was accepted into hospice care. I now that some people are used to thinking of hospice as a last-days-of-life service, but it is really designed to be an integrated care program over the course of what is expected to be a final illness. It is meant to keep the patient comfortable and as engaged as possible for as long as possible, while also helping the family caregivers.

Nana will have regular visits from a nurse/case-manager, personal care aides, and chaplain. A social worker will be available to help with paperwork and recommendations as needed. A volunteer will arrive to keep Nana company while Paco goes off on his weekly trip to Wegman’s grocery store on the bus from their senior living community. More services can be brought in as needed.

In addition to hospice, we have aides coming in at night to assist Nana to keep her safe and so that Paco – and the rest of the family – can sleep without worrying about her.

Nana has improved over the last few days. It turned out that her oxygen machine that she uses when she sleeps was malfunctioning. Now that it has been replaced with a new unit, she is able to sleep longer and better so that she can have more quality time during the day.

Meanwhile, ABC is two and a half weeks old and doing well. She initially had a bit of jaundice, which is not uncommon in babies, especially those who, like her, arrived a bit ahead of schedule. She had light therapy at home which, along with time, took care of it. At her two-week checkup, her weight was a bit above her birth weight and she is now having a growth spurt and nursing frequently.

It is a joy to watch E and L who are wonderful parents, despite being so new to it. B and I love to snuggle and rock our granddaughter and are finding that our long-unused infant-care skills have reappeared readily.

We especially love being able to take ABC to visit Nana and Paco, who love every moment with their great-grandchild, even though she is often napping during visits.

We expect to see a bit more of her (currently) deep blue eyes in the coming weeks.

An unexpected writing assignment

I have been trying to balance my poetry and blog writing time – not terribly successfully as various personal and family health issues intervene.

Still, there are a couple of things I need to get done by Wednesday afternoon to prepare for a couple of poetry workshops.

And, I’m going to get to them, in a few minutes.

Really. I am.

What I spent my creative time this morning doing was writing a prayer.

In the days when I served on liturgy committee, I used to do this with some frequency, but it has been over a decade since I’ve done it on a regular basis.

Yesterday, I got a call asking me to write a prayer for the dedication of Mercy House, a new home for people who are dying but aren’t able to stay in their homes. Although the idea came from a local Catholic parish and it is housed in a former Catholic church complex, Mercy House is non-sectarian, accepting any person in need of their services. Still, it is appropriate for there to be a prayer at the ribbon-cutting and open house scheduled for this Sunday.

I thought about it yesterday and last night and wrote and edited a draft this morning. I sent it out and just got a call saying that the priest for whom I had written it loves it. I’m grateful for the opportunity to use my writing to serve others.

And, now, back to poetry…

 

“The Last Night” in Eunoia Review

I have a new poem published today in Eunoia Review.

It is entitled “The Last Night” and is about witnessing the death of a loved one.  I wanted to warn people who may be in a vulnerable place regarding loss so that they can make an informed choice about whether or not they would like to read it.

I would like to thank Eunoia Review for publishing this poem and invite you all to follow them on WordPress. They publish two new poems or pieces of short fiction daily so you can always find something interesting there.

You can find “The Last Night” here:  https://eunoiareview.wordpress.com/2016/01/13/the-last-night/

Please feel free to comment here or in the comment section on Eunoia Review.

With thanks,
Joanne
*****
This post is part of Linda’s Just Jot It January.  Join us!  http://lindaghill.com/2016/01/13/just-jot-it-january-13th-sacrifice/

JJJ 2016

To find the rules for Just Jot It January, click here.

Saying Good-bye

I am thankful that a hospice newsletter that I was reading referred me to this article entitled:  How to Say Good-bye When Someone You Love Is Dying:  Regrets and Lessons From Grieving Survivors.

I am also thankful that it isn’t information that I need to use right now, but I am grateful to be able to store the link here in this post for a time in the future when I will need to be reminded.